Just Another Ordinary Miracle Today

"Presence"

2009-12-12T23:51:00.007-05:00

My Gift List continues...

Number 156 - His presence.

How strange, that God would choose a cold, smelly manger for the birth of His son. Jesus, wonderful counselor, mighty God, everlasting Father, our prince of peace...lying in an unexalted bed, having come so close, His presence touching ours. God positions himself in humble places, where He makes His presence known.

We, meaning those who know and love Eamon, are aware that he seems to peacefully rest in the presence of God. It is often my explanation for his pleasant disposition, patience and joy-filled attitude. But in light of Christmas, and the manger, my understanding is quickened. The reality, Emmanuel - God being with us, becomes so clear. He chose to be present for each of us, and to be found among the least of these...with the poor, the dispossessed, the ones the world would push to the side, and it is there that He can be found.

Eamon walks closely with God, and I am so thankful to witness the divine crossing paths with humanity. It's like everyday is Christmas, I just love "presence"!

Season for Gratitude...

2009-12-06T04:02:00.003-05:00

I left off with my Gift List in December of '08, surely there are things to be thankful for in '09!

I had the joy of attending a lovely Christmas tea this past Friday evening -candlelight, twinkling trees, poinsettias, beautifully appointed tables, and lots of yummy desserts! The speaker challenged the group to spend the next four weeks keeping a gratitude-type journal, promising a great reward in attitude, perspective, even energy level. I had been planning to revisit my ongoing list, and I just so happen to be awake with the prince (no nurse tonight). So, no better time to keep track of the sweet blessings that bombard my day than 4:15 in the morning, well actually...I could think of a better time!

#150...yes, I had forgotten where I left off...
Eamon, keeping me awake tonight. This time last weekend, the prince was in the hospital with H1N1, but tonight he sleeps - intermittently, at home! He did an amazing job fighting the flu. The Drs were impressed with his strength, and believed it safer to discharge him after 24 hours to our care, not wanting him to pick-up a secondary infection in the PICU.

#151
An unexpected date with Maeve to see a Holiday show. Her dance school performed excerpts from the Nutcracker, some Hanukkah songs, and a dance set to The Night Before Christmas. She left inspired to audition next year for a part, I left with a deposit of Christmas spirit!

#152
My newest niece, Grace Marie Rogers. My big brother's 4th girl! I can't wait to meet her - planning to be an unapologetic baby-hog.

#153
The excitement, each morning, as M&M search for the latest location of our Elf on the Shelf. Their scramble to open the Advent box door to discover the day's treat. And, the understanding they already exhibit of the true meaning of Christmas!

#154
The flood of Christmas cards...brimming with news of the past year, and with pictures of those we love.

#155
Peppermint bark, cookies, and seasonal flavors at Starbucks!

Mary's Legacy

2009-10-19T23:00:00.001-04:00

Last night was The Mary Therese Rose Fund's annual dinner. An evening set aside to remember Mary's life, celebrate her legacy, join as a community, and generate money to help as many special children as possible.

Eamon, as one of Mary's kids, was invited as a guest along with our family. The theme this year was "Life Goes On". There was a Beatles cover band, tye dye balloons, an impressive silent auction, fun activities for the children, and an appearance by Corky from the TV series "Life Goes On". Maeve was so proud to sell her handmade key chains at the "Sibling Corner". She raised 40 plus dollars ! As you can see, Myles and cousin Emma would assist between cotton candy bites, but Maeve never left her post.

Lisa Crilly, Mary's mom, welcomed everyone, re-inspiring us with her love for her children, and commitment to keep Mary's legacy alive. She had asked me to tell a bit of our story and how the fund has impacted us. It was an honor to be asked, even though public speaking is daunting, my admiration and appreciation would not allow me to decline. The following, more or less, is what I shared.

Our journey to Mary's fund began at the 20 week ultrasound of our 3rd child. It was confirmed that the baby was a boy, my husband and I excitedly discussed our hopes and dreams for our second son. We barely noticed the growing concern of the tech until she had left the room in search of the doctor. Having just experienced the height of joy, we were now confronted with the depth of despair. Our baby had fluid in the ventricles of his brain, his prognosis was grim, death declared as the most certain end.

But on February 3rd 2007, Eamon Joseph Barclay was born very much alive and a new kind of journey began...one that led us to Lisa Crilly, and ultimately to Mary.

I first met Lisa in the NICU a week after Eamon was born. I was immediately impressed with the way she handled him and spoke with me. I just liked her. We followed Lisa to Valley's Center for Child Development where she continued physical therapy with Eamon. Lisa treated my son with great dignity and respect, seeming to treasure the precious gift he was to me and our family.

Insurance issues began to arise, and to my surprise Mary's Fund was going to cover the cost of therapy sessions. I was just learning the details of this fund, set up to honor the life of Mary Crilly. Suddenly, Lisa made sense to me...Mary was her daughter, of course. The connection I so instantly had with Lisa was rooted in our similarities as mothers to children with special needs.

I have come to know of Mary through stories, pictures, and precious shared memories. Eamon has been gifted with some of her toys, her medical supplies, and benefits from her life experiences.

The need for a custom chair system was becoming more obvious, and our insurance limits were prohibitive. Once again, Mary's fund was there to help. Eamon was fitted for a customized seat that has allowed him to participate fully in life. He is well supported and upright, able to be wheeled or lowered with ease. Eamon can enjoy watching Maeve and Myles play on the floor, can park at the dining room table for dinner, and be engaged on walks and outings.

We often say that Eamon's greatest day, so far, was his 2nd birthday. It was his first major event with the chair, and what a difference a chair can make! Our prince was able to watch, participate, and thoroughly enjoy the grand celebration - not lying down, but fully supported in a upright position, laughing and smiling the whole day - a priceless gift for Eamon and our family.

Just a month later, we found ourselves in the hospital with a very sick little boy. Eamon was in respiratory failure, again. This time, however, a tracheotomy was the only viable next step. The doctors were discussing difficult options, detailing the challenges a trach would surely bring. Lisa phoned, wanting me to know that despite the reality of care necessary, there was tremendous quality of life with a trach, for all of us. She visited the prince, prayed for him, brought a beautiful angel from Mary's room to watch over him, and of course gave him in-house physical therapy. I felt so covered by my now friend, Lisa, and grateful for a foundation that is more than a charitable donation, but a source of life-giving support along this uncharted road we find ourselves on.

Words certainly fail to express our gratitude to Lisa and Jack Crilly for sharing Mary with us, for blessing others even through their own pain and personal sacrifice. It is remarkable to see the impact your precious angel has had on the hearts and lives of so many. Mary's life touches Eamon on a daily basis.

And to my son, Eamon, you sweet prince, are a gift to us. You exemplify joy, patience, and love - so brave and strong. It is the privilege of my life to have been chosen as your mom.

It's a Wrap...

2009-09-25T21:36:00.001-04:00

Hilton Head seems so long ago now. Our last day we packed in as much sun, sand, and swimming as possible. I meant to post these photos about 3 weeks ago, but who's counting!

We had moved over to The Grande Ocean Resort, heaven on earth to me!

Looking down the beach...

Lunch in South Beach

My final hour, Papa swam with M&M...Mimi and I sipped Pool Bar Jim's Famous, and just breathed it all in until next summer... I am so thankful my parents decided over 2 decades ago that time with family is important.

Not sure why this is here, it's from our morning bike ride, and well I just like it!

Like any responsible parent, I landed at 9 pm the night before the first day of school! The kids were thrilled to be home, seeing Daddy and Eamon, and diving under the covers just slightly after 10pm - not too bad!

Maeve, second grade, and Myles, kindergarten, were up and ready to roll. The excitement was so great, it was hard to get a shot of either one, they wanted to find their friends and get on line!

Maeve and Hope loving 2nd grade!

Luke, Myles and Ty

My handsome boy ...Prince #1 ...so grown up ...tear, tear.

Postcard - Day 7

2009-08-30T21:53:00.006-04:00

Catch of the Day...Myles!

Our final full day here...it was beautiful. We spent it on the beach, breathing in the last of summer.

I'm a bit too tired to detail. We are sad to leave our home away from home, but are so excited to see David and the prince!

Maeve and Myles so enjoyed the beach tonight, I kept them out until the moon became visible in the darkening sky. Dinner at 8 pm on the balcony, bath in the jacuzzi, and plans to be back in the sand by sunrise.

Plenty of beach/pool time tomorrow. We have a night flight, and I plan to soak up every last bit of Hilton Head!

Postcard - Day 5 & 6

2009-08-28T22:57:00.027-04:00

It was not a lovely day on Hilton Head yesterday...but we found fun anyway! Morning walk, breakfast date with Mimi, a serious game of Boggle in the afternoon, some more shopping, and evening beach time after the rain cleared.

Maeve and Myles created a grave for horseshoe crabs.

A climb to the top of Harbortown Lighthouse - all 114 steps. Our reward... raindrops!

Maeve sporting her new Vera umbrella - the rain demanded it!

Today was gorgeous!

We went out for a bike ride this morning and spotted 6 alligators! The kids were thrilled...me too!

This one was BIG!

Passing through some pretty places.

Off to the beach...digging, running, swimming.

Relaxing in the surf.

Girl talk

Love that baby bump - Erica and Jerry are expecting their 4th girl!

Enjoying the Dolphin Grille

Uncle and Auntie in the pool

Clear sky!

Wishing...we were all together!

Late day sun

View when we arrived home...Mimi and Papa had dinner waiting so we can mamimize our beach time!

Jerry, Erica and the girls moved in for a night...everyone under one roof - let the games begin!

Postcard - Day 4

2009-08-27T21:42:00.018-04:00

Woke missing the prince. That real deep in your gut kind of missing. Nurse Maria must have read my mind, because this picture suddenly flashed on my phone.

They were ready for a trip to the park. Seeing his smile and twinkling eyes reset the course of my day.

We had a slow morning, lunched with Jerry and the girls, then shopped, had some ice cream, and shopped some more. It was cloudy and raining on and off.

Maeve's new found passion is biking the island over. So, this evening before dinner off we went in search of turtles and alligators...success on both fronts!

Jerry, Erica, and baby girl #4 at Marley's for delicious ice cream!

The girls, excited to spend their money.

Cousin love

Beautiful surroundings, despite the weather.

Alligators, turtles, and horses...the horses were all I was able to capture.

Just because... my SIL, Erica, looks so cute pregnant and on a tricycle. The only way Jerry will let her ride.

Biker-Chicks!

After-dinner movie...

We seem to get sillier with age!

Nice, Irish tans...I know!

Postcard - Day 3

2009-08-26T22:38:00.009-04:00

Today, I was joined on my morning beach walk by Maeve and Myles. We explored for a bit, but they drifted back up to pool-hop. Eventually, we made our way home to get ready for some serious bike riding. Maeve decided to forgo the "tag-along" bike for her own. We set out for South Beach, home of the Salty Dog. The island is so scenic, lush with vegetation and rich with unusual wildlife.

View from our villa

Maeve making a quick stop to hydrate

South Beach in the distance

A fishing spot

Breaking by one of the many golf courses we rode through.

Myles had his stitches removed, allowing him to officially use his knee. Dinner was followed at Steamers, a fun casual seafood place. And then, for the grand finale, Greg Russell in concert! Same place, jokes, and songs but always a treat for the kids and adults!

Tired, but feeling full.

Postcard Series - Take 2

2009-08-25T21:08:00.014-04:00

Good Morning Hilton Head!

A great start to any day is a walk on the beach. Maeve and Myles slept in, so I was able to wander the shore line.

Thoughts and prayers mesh out so easily in the gentle waves.

A late breakfast at our favorite - Harbortown Bakery! And then it was off for a bike ride.

Myles and Uncle Tim riding a not-so-straight line.

Aunty, always looking fabulous!

Herself, taking in the sights.

Some of the sights.

Across from the Light House

Lunch and back to the beach/pool. Lots of laughing and relaxing.

Uncle Jerry and Aunt Colleen, always ready with a pose.

Our very own Merman.

Myles, taking a break from digging.

Look what Maeve found...more reasons NOT to swim in the ocean.

Jaws was fished out and released right back into our swimming area...the ONLY reason I need to stay out of the water!

The view from our balcony as we returned home for dinner. Mimi and Papa had everything ready, all we had to do was eat. A full day, memories in the making. We love this place!

Postcard Series - 2009

2009-08-24T21:31:00.010-04:00

Here we are again, Hilton Head Island 2009! Many changes have rolled into our lives, but this place seems to be a constant.

Maeve, Myles and I flew down early this morning. David and Eamon are home, we just couldn't arrange the myriad of details to make it possible for the prince to travel this far. David is working shortened hours and nurses are in place led by Super Nurse Maria! Although I have peace leaving Eamon in Maria and David's care, it is still bittersweet.

The prince had a quick and fairly local mini-vacation to Connecticut. We had a great time, enjoying our family alone - no nursing for 4 days! This week is different, but all three of our children will get what they need. The prince, some special bonding with dad; M&M, focused mom-time with the bonus of cousins, aunts, uncles, and grandparents!

What a beautiful, sunny beach day! We swam, combed the beach, drank fun concoctions, laughed and played! Pictures of the prince smiling sent to my phone were the cherry on top.

Myles, as silly as ever, having fun with a "bum" leg.

The brothers, silly as ever themselves.

Look Dad, Muscles!

Digging a home for the sea creatures collected.

A sea star!

Lessons I'm Learning Along the Road - Part 3

2009-07-11T21:53:00.008-04:00

From deep soul checks to paradigm shifts, I find mothering Maeve, Myles and Eamon to offer ample opportunities for my own growth.

Humility

The nurses who care for Eamon act kindly, seem to genuinely care for the prince, and certainly perform many tasks throughout the day and night. But, I was stopped in my tracks by the beautiful expression of service Nurse Maria bestowed on my son. After a full day of effort from himself, Maria prepared a bucket of warm water, gathered a towel, wash cloth, soap, and cream. Settling in next to Eamon, she began to wash his feet.

I am not sure I could find a more succinct demonstration of humility. Jesus washed the disciples feet - the master bowing before the servants. Divine concepts run contrary to our human ideas. It's better to rule over, get ahead, demand respect...right? Not in God's kingdom. I felt humbled to see Eamon, our prince, exalted in a tangible and utterly loving manner. And, I felt the sting of all those times I have chosen to exalt myself over the needs of others.

Maria's example challenged me to look for occasions to wash feet. And, if you only knew how detestable feet are to me...I have often said I love David down to his ankles. The chance to extend "Jesus" to someone other than myself, remembering fulfillment comes from doing His will.

And He washed feet!

True...Eamon's feet are precious - I do like under-10 year old-feet, but that's another story.

Jumping Back In!

2009-07-08T22:19:00.012-04:00

Because I don't know where to begin. My hiatus is hopefully over, but for tonight just a quick Prince update.

A little more than a year ago, I had met with Eamon's "then" neurologist. She was thorough, really thorough, and tossed on the table the idea of a tracheotomy. The thought brought Mimi to tears, David to outrage at the absurdity of its necessity, and me to a "just-kicked-in-the-stomach" feeling.

I followed-up with the pulmonologist, who settled me with a "We are not there yet, May never be there" response. And so, the idea was put away.

This February, Eamon reached his most heightened respiratory crisis - failure to be exact. The idea of a trach was not only on the table, it was the center piece. The ICU Dr mentioned it after Eamon was intubated, but reserved its full discussion for the next day. Well, the next day came early...he walked in the room about 6am. Eamon's labs were back showing chronic CO2 retention that had reached a fatal level. My breathe catches remembering just how sick our sweet prince was.

Ironically the week before the hospitalization, I had gravely discussed the potential need for the trach with Eamon's physical therapist.

And now, we were face-to-face with the decision. Obviously, we chose the trach - a decision that was clear and peace-filled. God had been preparing us.

It has been a long couple of months, lots of ups and downs readjusting to our newest normal , but the trach has brought new life to the prince. He is doing amazingly well! Stronger, more consistently connecting with us, and joy - such joy. There are days, I believe he is trying to get on up and march around the house. He is growing, longer and not leaner, looking more proportioned. His hands are open and reaching, his vision seems more attune, and did I mention the joy. He laughs, belly laughs, smiling most of the day away.

We are so grateful for what the trach has brought to Eamon, the chance to be his best self.

Celebrating at the 4th of July Parade

The state of nursing remains unchanged, but new insurance covering both nursing and equipment is in the works.

Until then, this is the new look of nursing in the Barclay home.

Nurse Maeve, gloved and workin' the stethoscope. Eamon looks concerned.

The Waiting Room

2009-06-10T21:14:00.007-04:00

Wow, it has been a long time...I almost forgot I had a blog! Life has been full, to say the least,and I have chosen to keep my words few because truthfully I needed to work through some raw emotions. But I am feeling the wind blowing my wings back open, readying me for some soaring.

Eamon is doing well, in general. We have experienced some increased apnea episodes necessitating the tweaking of ventilator settings and respiratory treatments. He still maintains his breathing (day and night) on room air - an absolute miracle. Eamon is gaining, at his own precious pace, strength in his arms and legs. He is learning to swallow and managing his "oral secretions", a.k.a. drool, much better. We are seeing so much purposeful movement - activating specially adapted toys, scooting around the house, and responding with delight to the people around him. Eamon continues to rest in a peace that seems "other-worldly".

Nursing care coverage has recently changed. Eamon still medically requires 16 hours per day, but we have been reduced to a daily 8 hour shift. This situation poses a great challenge. We are scheduled for minimal night coverage, leaving me as the "nurse-in-charge". I am feeling the effects of sleep deprivation, but believing that increase is coming - soon! Several promising scenarios have surfaced, please pray.

My friend, Super-Nurse-Maria, and I were chatting several weeks ago. She was sharing about a cancer diagnosis her husband was given 6 years ago (he is well today!). She recalled the alarming phone call announcing that life as they knew it was about to change, clearly remembering a sense of calm mixed with excitement that arose in her spirit. She explained that we all are in a "waiting room" of sorts. Life progressing, aware of God - possibly, but not yet face-to-face with Him. Until...whatever circumstance calls you in, no longer waiting for an encounter, but fully present with the One who ultimately orchestrates it all. An intimacy born of trial, depth of knowledge the reward.

The apostle Paul pleaded three times with the Lord to remove the "thorn" in his flesh. Instead of removing the difficulty, God promised a grace that is sufficient and power made perfect in weakness. I have asked God to remove our "thorns", but they persist for reasons I trust to God. Paul even goes on to "...boast all the more gladly about my weaknesses, so that Christ's power may rest on me." and to "delight in hardships and difficulties, for when I am weak, then I am strong."

Feeling weak, but knowing that is the beginning of strength. My soul boasting in the Lord!

Sinking

2009-05-03T23:23:00.001-04:00

"If Grace is an ocean, then we're all Sinking." - K.Walker

It is unfathomable, we are incapable, of grasping how God works together all things. Our stories are complicated, yet if you follow closely, they are intricately woven together in the most coherent manner. Today particularly, I am feeling the "lightness" that follows a time of darkness. Joy is a constant, happiness is circumstantial, today my soul is embracing both!

The idea of Private Duty Nursing was a bitter pill to swallow for many reasons. That was before. Our nursing experience has been indescribable. Their compassion, skill, ability to be unobtrusive, has been a tremendous blessing to our family.

One angel, super-nurse-Maria, has been dropped into our lives for such a time as this, for sure. We work in tandem, so effortlessly, as if we've always been together. She is a beautiful example to me and my babies of working, in any capacity, with wholehearted devotion. No matter the task, Maria sets about as if it was her greatest honor. She has taken to doing laundry during the Friday over-night shift. This started as Eamon's loads, increased to include M&Ms', tacking on towel and sheets, culminating in today's blitz - it is all done! Folded to retail-store-standards, and poured over with tremendous humility. Maria believes this is her privilege. To Maria, folding laundry carries equal importance to changing a trach, listening to my baby's heartbeat, or administering meds. See, utter devotion, a tangible portrait of what it means to serve one another.

Imagine my absolute delight last Saturday morning after my house "fairy" worked feverishly through the night while I slept peacefully. I mean really!

Today's sweet surprise!

Oh, and SNM (Super-Nurse-Maria) makes rainbow jello treats for Maeve and her party-goers.

I am overwhelmed that God would allow my family to Sink in this kind of Grace! It is further evidence that to put my whole trust in an unseen, incomprehensible, all-consuming God is the most logical thing I do! I am free-falling, completely leaning into Him, blindly being led, and sure enough, He has "turned the darkness before me into light, and the rough places into level ground." (Is 42:16) These are the things that He does!

Himself, kicking. Yes, using muscles that were flaccid, recognizing cause and effect, and sinking in Grace!

And a Little Child Will Lead Them...

2009-04-20T22:12:00.012-04:00

Last Thursday Eamon had a follow-up appointment with his pulmonologist. This necessitated our leaving the house, no small feat lately. One nurse, one mom, one prince, a rolling piece of luggage - aka, new diaper bag, suction machine, pulse oximeter, oxygen (just in case), kid cart seat and stroller base - whew! We were quite a scene in front of the building now trying to upload our gear. I was struggling with
the seat/stroller when an observer offered his assistance. I accepted, rather unlike me. Success was found, and off we went to the elevator. Again, the good samaritans stepped aside, holding the door and allowing us to use the elevator first. That's when it hit me, Eamon brings out the best in people.

After "Ears for Eamon", a group from WaltsBasement.com started to send gifts so Eamon could enjoy Disney at home. Packages from around the U.S. and Canada keep appearing filled with pixie dust and goodies from total strangers. People touched by Eamon, and inspired to do good for another.

Another pair of Ears - personalized to boot!

Mickey, in various shapes and sizes, trached-out for my boy.

Today's box - overflowing with love.

My incredibly talented friend and founder of "Ears", Miss Jodi, created this amazing compilation of pictures, quotes, and comments left on Facebook. Words meant to encourage, heartfelt prayers lifted on our behalf, and strength evident in numbers joined with one purpose - to believe for Eamon.

A sweet friend of my sister, Jenny, is getting married this coming Saturday. She and her future husband, Ryan, have decided in lieu of favors to make a donation in Eamon's name to Mary's Fund. A fund which supports many local special needs children, Eamon being a grateful recipient.

While shopping in Vera Bradley for some Easter gifts, I spotted a rolling piece of luggage. I thought it might work for Eamon's supplies while still being a bit stylish. The price tag was too steep, so I reported the bag was not even for travel but for my son's medical supplies. With just a bit of Q and A, the saleswoman suggested I call her privately so I could utilize her generous discount (50%). Instant friendship rooted in wanting the best for the prince.

Another friend and her husband pray for Eamon daily. He was already interested in medical "stuff", but after exploring trachs and their care has decided to make a career change, going back to school for respiratory therapy.

Little-ones and older-ones lowering their heads to intercede. Food prepared, coffee sent, help in various forms offered, perspectives altered, and choices impacted because Eamon lets "his light shine before men, that they may see ... and praise God".

There is no greater reward than knowing Eamon's life has influence and impacts, for good, the world around him.

Ears, take 2!

2009-04-16T22:11:00.013-04:00

Thanks to my friend Miss Jodi, the prince has an actual group on Facebook called "Ears for Eamon". The "Ears" we were believing for Eamon were of the Mickey Mouse variety. Eamon didn't make that trip to Disney, but two sets of mickey ears found him anyway.

On Easter, I subjected my little bunny to a photo shoot adorning his latest "Ears".

Eamon is so patient with me, and doesn't he look dapper for the big day!

Once I started, there was no stopping me ...

Eamon's godfather walked in mid-placement of the pink ears, Uncle Joe was not appreciating the look.

I'm thinking the prince agreed with his Godfather

Maybe this "Ear" stuff will become seasonal, who says we need to be married to Mickey. Any ideas?!

Maeve and Myles were enjoying the silliness from a safe distance - no Ears for them, but dressed in their best to celebrate.

What a Difference a Month Can Make

2009-04-08T22:26:00.007-04:00

It started like a normal day.

M&M had school, the prince had occupational followed by vision therapy, nursing from 10-6, dance class, food store - just a normal Wednesday. What was NOT normal was the car that blindly crashed into my side as I drove to pick up the kids. The poor man was so shaken I couldn't possible be mad, it was an accident. My concern was not over the car, but in the delay the incident imposed on picking up my M&Ms. After the police report was taken, the afternoon progressed - off to dance then a quick run to Whole Foods. Conversing all the while with the insurance company, a representative from Special Child Services (the waiver program), and intermittently with David about the extent of the damage. Back to get my dancing superstar, and the race home to relieve Connie, today's nurse.

Again, all normal for Wednesday. But what was NOT normal was the car alarming with news ...Fuel Low. No problem, there was an Exxon close by, but my car said I had 0 miles left. I stop at the light, I can see the gas station through the intersection, when my car died. I ran out of gas! Literally, ran out of gas. I have heard of people-silly, unprepared people running out of gas - but not me.

So there we sat, cars beeping, arms waving, expletives flying - there's, not mine. I calmly called David. He raced to us with a gas tank in hand, flagged down a police officer, and pushed me out of harm's way. My tank was justly filled at the oasis, a.k.a. - the Exxon station. David and I laughed at the scene.

Do you realize how many times my car must have shouted a warning to me - Low Fuel, but I never heard it. My mind is clearly focusing on some other matters. David and I were not even upset with the afternoon events, no one was injured, the car was drivable, and after all - cars are replaceable. Not a normal reaction, but evidence of a perspective shift completely inspired from the places we've walked these past several weeks.

One month ago, Eamon's CO2 level made him "incompatible with life". There were difficult options being presented to us. One in particular was to allow "nature to take it's course". They assured me that Eamon would be kept comfortable. There weren't any promises that a trach would alter the nose dive his health, specifically his respiratory system, had taken.

But oh, what a difference a month can make! Eamon was trached, and continues to strengthen. The prince is NOT requiring supplemental oxygen. He is enjoying his days, sleeping through the night peacefully using the vent, and is most definitely compatible with this life - thank you very much.

I have tried, on several occasions to dress Eamon up in his new Disney shirt, Ears in place, holding the newly trached stuffed mouse. But something always seem to preclude the much desired photo (sorry Jod!) I have not abandoned the official "Ears for Eamon" photos, but wanted to give you a glimpse of his mouseketeer cuteness.

"Hey, what in the world is on my head?!"

M-I-C-K-E-Y M-O-U-S-E!

What a difference a month can make!

Seeing is Believing!

2009-04-02T23:35:00.003-04:00

Maeve told her teacher that she has seen a miracle. Mrs. Slootmaker responded with, "Oh really, what was it?" Maeve was quick to offer her answer, "My brother, Eamon, is a miracle!"

Maeve's observation is true, Eamon, against all odds continues to fight the good fight. He had a tremendous day. Having resumed in home therapies, Eamon boarded his scooter this morning anxious to get moving. His little leggers kept kicking Miss Ellen, prompting her to take action - scooter races! Well not an official race, but he certainly exceeded his last high speed and distance. A miracle. Eamon usually takes many weeks/months to recuperate after any illness, literally not returning his strength for some time.

Eamon is still on room air, no oxygen support, day or night. Since December 2007, the prince has required some degree of supplemental O2, everyday. But, now, He is flying solo and his numbers have NEVER looked so good! A miracle, surely!

And the miracle that I see on a daily basis - grace. Grace covering Maeve, Myles and Eamon . Grace custom fit for David and I. Grace given freely. Grace, more than sufficient.

All Miracles for us to see.

Where in the World is ...Eamon Joseph?!

2009-04-01T22:24:00.010-04:00

Home. And doing well, really well. So much has happened since last Tuesday, the day we were discharged. Our transition home has been smooth. The details are still being ironed out, but in general, Eamon and his crew have landed softly into our "new normal".

Some highlights from the week for the prince's faithful fan club:

I, the mother/nurse-in-training, changed the trach the day of discharge. Mostly it was my idea, wanting to experience it with backup. I was supported by 3 nurses, all encouraging me, but not stepping in to assist. It was all mine. Supplies were set in place, I was gloved, and at the point of dislodging the old trach utter panic almost consumed me. I announced the threatening sob, they tirelessly focused me, I took a deep breathe and went for it. The trach slipped out, and the new one slipped in quite easily. This will become a bi-weekly activity.
16 hours of nursing per day are in effect. This caused me great distress the week leading home, but actually has been wonderfully helpful. The nurses, all pediatric, are great with the prince, M&M, and us. I am heading up all care for Eamon, but am enjoying the camaraderie and support. I have the freedom to run out without packing up all the loot that accompanies the prince these days.
M&M are home, making friends with the various nurses. Myles is thrilled, little brother is home and available for constant handling. Maeve has assumed the role of "nurse". She is cautiously welcoming this "new normal". She so adores the prince, but is a bit nervous with the bow tie. Tonight, was the first time she initiated cuddles with Eamon, somewhat forgetting about the trach, and just laying on the love.

The prince has basically been on room air!!! During the day, Eamon wears a trach collar which provides a warm, humidified mist. If needed, oxygen can be attached. At night, Eamon is hooked up to the ventilator - the LTV 950, sounds like a fancy car - costs as much too! This smart machine offers pressure support on inhalation and exhalation. Most importantly, should the prince become apneic, the vent demands a minimum of 5 breaths per minute.

The nursing, equipment and supplies are very expensive, and not fully covered by our insurance. But there is a season for everything. I have been pursuing various resources to assist us for months, even a year plus. One in particular, the CRPD-PDN waiver (Community Resources for People with Disabilities - Private Duty Nursing), which I started the paper work/interviews/home assessment in September was just approved - March 19th to be exact, right on time for the onslaught of additional costs. God is good. This program requires nursing, to which I was against, but still pursued with the hope of durable medical equipment support. I thought several times, what a wasted effort because I do not want PDN (nursing). But God knew, and provided a means. Oddly, I now can't imagine life w/out nursing. There is a season for every purpose under heaven.

There is more, but I will save it for another day. For now, I leave you with a teaser of the photo shoot I am planning - so stay tuned, Ears for Eamon coming soon!

Ready for some fun!

"With a wink and a smile..."

Happy boy on trach collar

He was out!

But still, so full of joy!

We are Home!

2009-03-25T22:53:00.003-04:00

This might be the shortest post, ever... I am so tired, but want to share the good news! Eamon Joseph came home last night around 9 pm! I was determined, so we worked the day long to bring the prince home. What a scene! A hospital room has basically been set up in our living room, supplies lining every available surface. A respiratory therapist, shift nurse, and clinical supervisor all descended upon us as we walked through the door! Colleen and Dane were in the kitchen preparing a delicious eggplant dinner. Amidst the chaos, my normal OCD-self was too excited to be concerned about the dizzying details, I was at peace - my prince was home, breathing well, settling into our new normal.

Thank you for praying, and believing the best for Eamon. M&M are having a fabulous time in Disney, but are looking forward to seeing the mister, mommy and daddy Friday night.

I forgot to mention last week, Eamon did get his ears, even before the trip. Some thoughtful "Ears for Eamon" fans sent a bit of Disney to the prince. Ears, a stuffed Mickey Mouse, books, stickers, pins, etc. - I cried at the sight, so much love for such a little man!

XO

Himself!

2009-03-22T20:12:00.010-04:00

The prince made it up and out of bed today. We strolled the hospital pediatric hall, giving us all a much needed change of view!

It isn't the big pleasures that count the most;

It is making a great deal out of the little ones!

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Mimi and I enjoying the Mister.

Fabulous Nurse Betty set Eamon up with portable O2.

Laughing at his three-headed puppet.

Himself!

Still

2009-03-21T22:43:00.003-04:00

Yes, we are still in the hospital. Each day this past week brought the hope of discharge, but the plan was repeatedly foiled. Tonight, Eamon is using his "home" vent. We are taking it out for a trial, tweaking as needed. More instruction for David and I tomorrow. Monday the O2 set up and remainder of supplies should be delivered. And then, dare I say Monday late or Tuesday early, we return home!

Eamon is feeling well, looking as precious as ever - bow tie and all, and is acting like himself. He is my little hero - so brave and strong, keeping a smile on his face regardless. I have said to the nurses, Eamon is the most pleasant person I have ever met, hands down.

Maeve and Myles left for Disney early Friday morning. I slept home Thursday night, Mimi had a slumber party with the prince at the hospital. It was a restless night, I woke often, looking over for Eamon, realizing after panic settled he wasn't there. I had a terrible dream that the trach fell out. I was wrestling to slip the new one in while Eamon struggled to breathe. I got up, feeling sick over the dream and the impending reality - my M&M's were leaving for 8 days! I put on a brave front, but final hugs were a bit more than I could bare. Myles looked in disbelief at my tears/crying/impending sob - He probably wondered why an incredible trip to see Mickey warranted all this wetness. I know we made the right decision, but it stinks that this was my best choice!

There is much to do this week before and after the Prince returns home, and I am thankful for the "gift" of time to prepare for our "new-est normal yet"! I am working to be still, steady, and expectant - believing that our prayers have been heard so we need not fear!

Thank you for climbing the hill with us, looking forward to seeing the other-side! xo

Looks like Late Week

2009-03-17T23:08:00.002-04:00

We are getting closer! But, it looks like a Thursday/Friday discharge. Eamon is well, smiling, and waiting patiently. The delay is over the type of breathing machine appropriate for the prince. The "vent" is very costly, far exceeding any insurance coverage, so alternatives are being evaluated. These details are taxing. Caring for Eamon, in any capacity, is our joy. But this... exhausting!

Today was St Patrick's Day. A day to celebrate family, faith and our rich heritage. I find so many days are a juxtaposition - joy countered by the hard details of life. And today was an obvious parody. Sun shining, Irish eyes smiling, family gathering while Eamon waits in the hospital, so many changes on the horizon, and I felt the jarring balance of goodness with adversity.

My brother, Jerry, forwarded an excerpt from St Patrick's Breastplate - believed to have been his daily prayer of confession and invocation of the blessings inherent in our walk of faith. It brought me strength for this day, this particular season of life, and spurred me onward when a lament threatened.

I arise today
Through the strength of heaven;
Light of the sun,
Splendor of fire,
Swiftness of wind,
Depth of the sea,
Stability of earth,
Firmness of rock.

I arise today
Through God's strength to pilot me;
God's might to uphold me,
God's wisdom to guide me,
God's hand to guard me.

Afar and anear,
Alone or in a multitude.

Christ shield me today
Against wounding.

Christ with me,
Christ before me,
Christ behind me,
Christ on my right,
Christ on my left,
Christ beneath me,
Christ above me,
Christ in me.

I arise today
Through the mighty strength of the Lord.

The Verdict!

2009-03-15T23:24:00.005-04:00

After much thought, prayer, and helpful advice, David and I have decided to let Maeve and Myles go to Disney! They are ecstatic, to say the least. Maeve suggested a date for Daddy and I while they are away. She's still working it, not realizing the deal has been closed. I am thankful that God provided a fun adventure for my M&Ms, at just the right time, allowing David and I to get our new normal officially up and running. Change is on the way!

It would seem that Reality TV is coming to the Barclay 5! Today, I met with the nursing director for a pediatric home care company. The prince is going home, sometime this week, with 16 hours of nursing/per day. Yes, 7 days a week! There are many logistics to address, like where am I putting an overnight nurse. So barring a visit from Extreme Home Makeover, looks like David and I might be sleeping on the pull-out couch.

I felt a real ease after the meeting. We discussed Eamon's long medical history, our family, and my desired hours to be covered. They seem to be very flexible, wanting to accommodate our unique needs. It kinda felt like lifestyles of the rich and famous where I will have a highly skilled nanny! Eamon smiled away, she happened to be quite attractive, my boy is a flirt! Marinna said her nurses will be fighting to get a shift with the prince. He had the charm on big time!

Eamon is doing well. Discharge will probably come early, mid, or late week. Some issues still with what type of respiratory support he will need. Eamon has been using c-pap from 8pm-8am, but has had several apnea episodes. Just something new to discuss during morning rounds. The hospital is quiet on the weekends, with no real progress made until the work week begins on Monday. Funny how we have learned the rhythm of the hospital. I realized today that Eamon has spent, collectively from birth to present, 14 weeks in a hospital setting. I think we are all ready to go home!

PS - We are still believing for "Eamon's Ears", I hear Disney is beautiful in the Fall!

The Reason

2009-03-13T23:15:00.006-04:00

Eamon has had a good day! Visitors, smiles, light therapy, and an ease that is characteristic of the prince.

So many people are charmed by our little man, loving him in such a beautiful way. And, many people offer kind and generous words about "how" we manage life with our particular children. I so appreciate that encouragement, but feel a bit overwhelmed by it at the same time. I take one day at a time, often having to remind my heart and head to cooperate. I am incredibly weak, but amazingly that is when He is strong.

We used to sing this song at church. I always loved it, believed the words, but never experienced the depth of it ... until Eamon. What a gift our prince is to me!

"I will bless the Lord forever.
I will trust Him at all times
He has delivered me from all fear
He has set my feet upon a rock
I will not be moved and
I'll say of the Lord
You are my shield
My strength
My portion
Deliverer
My shelter
Strong tower
My very present help in time of need"

A Glimpse...

2009-03-12T23:59:00.001-04:00

After a particularly difficult night withdrawing from some serious narcotics, Eamon has found rest. It was decided this morning that a weaning of medication was necessary. Eamon was moved to valium and morphine which will be scaled back over time. C-pap is being utilized for breathing support (on for 4 hours/off for 4 hours). It was painful to watch the prince suffer, so to see him peaceful is a tremendous comfort tonight.

I walked in the room tonight, and as Eamon heard his mama's voice a soft smile appeared. There is no greater gift than to see the prince working his way back. I can hardly wait!

My formal, hands-on training is underway! David and I took a CPR course Tuesday night, and have been given literature on "life with a trach". Today, I worked on suctioning and using an ambu bag. I spent some time helping a dummie clear his secretions. I even suctioned Eamon! The prince was rather patient and cooperative for me.

As we continue into another "new normal", these words reassure me, a somewhat weary traveler feeling a bit "blind".
"And I will lead the blind
in a way that they do not know,
in paths that they have not known
I will guide them.
I will turn the darkness before them into light,
the rough places into level ground." Isaiah 42:16

Please know that the kind words, love for the prince, and mass prayers for our family are sustaining. Thank you for walking with us, xo.

A Big Day!

2009-03-11T23:21:00.007-04:00

The ENT replaced Eamon's trach today. I am proud to report that I did not pass out from the sight of the stoma, the new hole in the prince's neck. The Dr scoped Eamon finding more evidence of tracheomalacia, a weakening of the trachea, further down the pipe, so to speak. A concern, but not an alarm. Some more training for me followed, but nothing hands on yet.

Once the trach was set, Eamon's sedation and pain meds were dropped - Yay! Next to go was the ventilator, Eamon's breathing machine. He did really well for several hours, but as night fell so did his numbers, breaths were more labored, low grade fever, and incredible restlessness - the likes I have never seen in my prince. He was sweaty, clammy, and cold - all at the same time. Possibly some withdrawal symptoms from the narcotics. Now, smaller doses have been reintroduced to allow for a bit of a wean... and, the prince sleeps.

Respiratory will be back in soon to add a heated humidification and maybe some cpap/bipap through the night. This breathing machine allows Eamon to do the breathing, offering pressure support on the inhale/exhale. So it would seem we have lots of room for tweaking. There is a verse in psalms stating that the Lord gives rest to those He loves...tonight, Eamon and I are looking for a little love.

And, the Disney question still looms. The scenarios currently being played out are:
David goes to Florida with Maeve and Myles; or Maeve and Myles travel with Grandma and Aunt Ginny. I am not sure if M&M off to Disney, while David and I transition Eamon home, is a divinely orchestrated "perfect" solution or my worst nightmare. I feel heartsick for them already.

M&M will most likely do fine. While Maeve discussed this option with Grandma she claimed, "Well, I don't really see Mommy that much anyway." WHAT! Clearly, my daughter has a future calling in legal council. I am absent for breakfast, but pick them up every afternoon, stay through bedtime, leaving for the hospital when all lights are out! Oh, and apparently she doesn't see Daddy that much either. So, it would seem Maeve has a plan

David wants to be home to help with Eamon. Private duty nursing looks to be warranted. New supplies, equipment, and house reorganization could be addressed while my M&Ms enjoy Disney. There would be a 1 to 1 adult/child ratio, I like that. And, I don't believe this would count as our family trip, because 3/5ths of the team would be home. Is this a no-brainer?!

I am open to thoughts, in the council of many there is wisdom. I need clear peace, either way. And, I am confident it will come, speak Lord, your servant is listening!

The Ears are in Question

2009-03-09T23:00:00.002-04:00

Eamon's blood work was great this morning..."textbook" to quote the Dr. Now that is a first for the prince. The prevailing theory on O2 drops yesterday is dehydration from the record breaking "movement". He has been so restless. They are trying to keep him sedated, but to no avail. The trach will be replaced on Wed., this is routine post surgery, and will allow Eamon to come out of sedation - wait, is he ?! Cultures aren't all back, thoughts of infection seem unlikely, but the antibiotics will be continue for now.

One surprise visit today from Ms Lisa, Eamon's pt, allowed for some range of motion/stretching. I'm sure this felt great. She brought along an angel light catcher for the prince. During Lisa's pregnancy, while Mary was here, and even after Mary went to heaven people often gave angels to her. Lisa chose to share this special token with Eamon, our angel here on earth.

The question of "ears" was being tossed around today. I thought I should mention the possibility of a change in plans to M&M. Their reaction was surprising. They so want our whole family to enjoy Disney together, I think they would prefer rescheduling so Eamon can go.

Oh, what to do?!

There are several options, all of which fall somewhat short of the perfect answer. Several months ago, long before any trip was planned, someone suggested that we would go without the prince! The idea shocked me. A family vacation without the whole family! "Oh, no," I remember responding, "Eamon has to go with us!"

But today, for the first time, "Ears" started to look out of the question . At least for this trip.

The Prince

2009-03-08T17:19:00.013-04:00

Eamon before surgery ...

And, just after...now his face is clear, no wires or masks. Isn't he handsome? The tubes connect to his ventilator, but are temporary. Once he is stronger, and the new trach is put in, weaning him off the machine will be a priority.

Eamon had a restless night and day, sedated with arm restraints, and still he was getting into trouble. Our first victory was bowels on the move, after a week and several doses of miralax, the prince was set free! Too much information, right! But it truly was an answer to pray.

Maeve and Myles came for another visit this afternoon. Myles wanted to chat with his boy.

Now, on the other side trying to get a closer look.

The phone rang, Maeve called from the bathroom, I turned for 10 seconds at best, and found Myles had scaled the bed and was perched atop some rather important tubes. The nurse scooped Myles up before any real harm was done. It was a fun visit!

Eamon's morning blood work was normal! Only one dose of that medication did the trick - buffer system in order. The O2 was even able to be turned down...for a while.

His O2 started to drop, causing the nurse to suction, do chest percussion, raise the level on the vent, all to no avail. The Dr was called back in, the xray showed some increased "issues", and thought that the mass fluid loss from the afore mentioned "movement" was causing present O2 decrease. Eamon's central and arterial lines were checked for infection, and even though results are pending, 3 new antibiotics were introduced (4 total!). The Dr is not taking any chances, Eamon is still too fragile. A third red blood cell transfusion was ordered to help circulate O2 throughout Eamon's body.

There is so much going into his little body. In addition to the antibiotics, there's sedation medicine, pain killer, and blood pressure regulator, IV fluids, zantac, vigabatrin, miralax (maintenance dose), and now benedryl to counteract a reaction to something listed above. Yikes!

The good news is Eamon is finally asleep, resting quite nicely actually. I feel safe with Eamon's Dr, the intensivist, and a group of amazing nurses. The prince is being so well cared for by people who count it a privilege to work with him. Eamon's godmother, Auntie Lisa, brought over some beautiful tulips yesterday. My favorite spring flower. And a touch, or glimpse, of new life fell over the room. Eamon is coming out of winter, I can feel spring is on the way. Even though I can't see the buds yet, I know they are there. Once buried, soon ready to bloom. Hold on, sweet prince, your time is almost here!

Seeing With Our Own Eyes

2009-03-07T23:11:00.005-05:00

Mimi offered to sit with Eamon so David and I could spend the some time with M&M. I left late morning after meeting with the team. It would seem that Eamon's "buffer" system is out of balance - CO2 is still too high, electrolytes too low, and bicarbs, produced by kidneys to counteract the CO2, too high. They are using a cocktail of medicines to bring it all back together. Eamon will remain sedated until the trach is replaced on Wednesday in an effort to keep him comfortable. He will continue on the vent, true weaning to begin once he wakes up.

At home, Maeve was just out of sorts. Fussing and crying over such trivial things. I too was feeling a bit overwhelmed until we found ourselves in a snuggle. I asked if she was missing the prince, enough of a probe to get a foot into her world. She started to cry, or increased the intensity of the already present tears, and started to share her heart. Yes, she did miss Eamon - terribly! Seeing his empty crib, toys and equipment made her feel sad each day before school. We commiserated for a bit, had a good cry, and then felt better with a decision to visit Eamon later in the day.

The reunion was sweet, M&M could see with their eyes the answer to many prayers laying peacefully in bed. Certainly, a reason to cry but with gratitude and praise not in fear... sometimes we just need to see with our own eyes.

I will post some photos tomorrow, so you too can see with your own eyes ... "oh, taste and see that the Lord is good!" Psalm 39:8

Here We Go!

2009-03-06T22:49:00.002-05:00

This is going to be quick, more details will follow.

Eamon did well, he has his new bow tie, looking so handsome! The day has been long, but filled with peace and lots of love for the prince! I am quite overwhelmed, really, by the kind words, prayers and feeling of community - an Eamon Love Fest!

I am reminding myself, "Do not be afraid...your prayer has been heard." The trach training has officially begun ... a scare, all available nurses/respiratory therapist run to Eamon's bedside, an ambu bag, saline, some serious suction later, and he is fine. Not so sure about the mother! I am well aware that the trach needs lots of daily care, supplies need to be at the ready, and a portable suction machine must never leave my side, but!!! I was not thinking about Eamon being plugged, a color change, and several hands required to clear him .

My grip just tightened, Follow Him. His strength is made perfect in my weakness. I'm feeling so weak, now that's a start!

A New Friend

2009-03-05T13:47:00.015-05:00

Betty, Eamon's fabulous nurse yesterday, offered to set up a "dummie" with a trach to let me see, feel, and touch our new normal. She instructed, then gave me the chance to play around with the supplies. She was unable to find the appropriate doll so brought in the next best thing...a friendly stuffed snowman. The snowman diminished the trach's shock factor, so I thought what a great way to introduce Eamon's new look to Maeve and Myles. They too looked, touched, dressed and undressed the trach, taking it all in stride. I am so proud of them and their unconditional love for the prince!

Tomorrow brings about a new chapter in Eamon's unfolding story. The trach suddenly doesn't frighten David and I, apparently M&M either, because the need has become so great. The timing is just right. Eamon's inability to properly exchange O2/CO2, his enormous difficulty handling oral secretions, and the tracheomalacia (a breakdown/weakening of his trachea) have pushed us to any "easy" decision. Eamon's infection is a mild pneumonia, one that would have most children home on an antibiotic. But for Eamon, acute respiratory distress and ultimately failure. To have been propelled to such a crisis, over a somewhat small pneumonia, confirms that his issue is chronic. We have seen Eamon suffer this past month, having reached several critical moments at home, the type that would warrant an ambulance call, tells us the time is now.

I have a special friend, Eamon's PT and the mother of Mary, who graciously and at the precise moment of need called me to say, "Mother to Mother, there is quality - tremendous quality of life with a trach." And, a peace fell over me. Eamon has made his need known. So, when I say we have an anticipation, even excitement, for the potential of the trach, it is because we want to provide Eamon with the right support to allow him to shine. And it would seem, oddly enough, that the trach is an answer to prayer!

Life with Eamon continues to stretch us, individually and as a family. But the miracle, if you will, is that we don't break. God's grace is sufficient, period. I love the image of a child holding out his hand to grab hold of his father as they walk along. That is what I'm doing. Following Him, holding tightly, and extending my free hand behind to Maeve, Myles, Eamon, and to all who amazingly choose to travel along with us.

Eamon has had a fever tonight, but the plan is still Tracheostomy at 12:30pm. Please pray that all the details, everything concerning the prince, would go well. I am feeling a bit of the weight of this procedure tonight. I took a picture of Eamon earlier, because after today his face will no longer be covered. No more nasal cannulas, masks, or taped tubes. The Prince will be seen in all his glory, now complete with a bow tie around his neck!

Change is Coming

2009-03-05T01:35:00.009-05:00

I wrote a lengthy post, but lost it somehow. So here is the much abbreviated version.

Eamon is scheduled for a tracheostomy Friday at 12:30. David and I are at total peace with the decision, even a bit excited. The "trach" will provide an access for suction and various respiratory support. There is a mandatory 7 day post-op stay for recovery, and training to care for it.

We make decisions for Eamon as the need arises, always leaving room for God to miraculously intervene. And He does, even when it's by using the hands of a talented Dr. to intubate at just the right time. "All of Eamon's days were ordained for him before one came to pass."

I was missing the prince today. He is still sedated and connected to lots of wires which makes holding him awkward. To be home, without Eamon, seeing evidence of his life all around, makes his absence so obvious. I am so thankful for 2 years with Eamon, knowing each breathe is a gift because we weren't promised even one.

I alerted the medical staff that Eamon has a date with Mickey on the 20th. The Dr. said, "Now we have a goal...Eamon getting his ears!"

Praying for Ears

2009-03-03T23:07:00.004-05:00

Today brought much of the same.

Eamon is still intubated, they are trialing lower levels of support. Another transfusion was ordered because Eamon's red blood cells were too low. An arterial line was put in his wrist to provide more accurate blood gas readings and continuous blood pressure updates. They are keeping him sedated.

There is lots of talk as to where we might be headed. Eamon's respiratory status has changed, and the need to step-up his support may have been reached. The idea of a trach is officially on the table. David and I have peace moving forward, should that become necessary. There are so many details and possible scenarios being presented. The discussion has been difficult because the raw reality of Eamon's situation needs to be reviewed. We would so appreciate prayer for wisdom.

My simple desire tonight is for Eamon to be able to get his ears, Mickey ears that is! We are scheduled to leave for Disney March 20th! And, I so want the prince to experience the sights and sounds the Magic Kingdom has to offer! So, to that end, I am starting a prayer campaign of sorts. If I knew how to create a "cause" or "group" on Facebook it would be to believe for Eamon's full recovery making this family vacation possible.

Thank you for your love, support, and contagious love for the prince!

"Now to Him who is able to do exceedingly more than we ask or imagine".... We are believing for ears!

Rest

2009-03-02T23:34:00.003-05:00

Tonight, Eamon is resting peacefully after a day that was full of crisis.

We took Eamon to the ER early this afternoon for chest x-rays and bloodwork. It was confirmed that he had a pneumonia. An injected antibiotic was administered because an IV line could not be established - the curse of small, hidden veins just like his Mama. I left David at the hospital to have dinner with M&M, showers and bedtime.

Eamon was moved to the PICU (pediatric intensive care unit), but his O2 levels plummeted causing great concern. He was bagged and set up with cpap. Again, his O2 crashed. At this point a central line was needed to provide access in the event of an emergency. Eamon's blood work showed anemia, very low platelet count, and depleted red blood cells. The overwhelming fright was his blood gas results showing alarmingly high CO2 levels (40 is normal, Eamon's were at 106 and still on the rise.)
It was clear that intubation was necessary to save Eamon's life. In essence, Eamon was suffocating.

Now at midnight, he is resting, a blood transfusion has just been started, various medications are running through his 3 ports, and Eamon is "breathing" easier than he has in quite some time thanks to the ventilating machine.

Can there be "good news" found in this day?! Yes, it can. (Well for starters, I'm still 29!! Love that new math.) The central line, a surgical procedure went smoothly. The intubation process also went quickly. Our family and friends, yet again, gathered around us and prayed for our prince. We are in a safe place tonight, possible sleep will come for us both! An amazing team of Doctors and nurses rallied together to preserve Eamon's life. And, the best part, God chose to allow Eamon to stay here with us, now that is some good news!

If you are able, please pray for Eamon's total recovery, wisdom for the Drs/nurses, and wisdom for David and I. Tomorrow will bring more details about some changes that may be on the horizon.

For tonight, rest is promised!

Restored Beauty

2009-02-26T22:31:00.003-05:00

A friend, commenting on the new look of the blog, mentioned that the tricycle reminded her of a painting, "Restored Beauty", by a mutual friend. Not being familiar, I googled away to find it. Instantly, I was moved. The tricycle has come to represent the challenges and beauty that life, especially life with and for Eamon, presents. Michele's depiction of a red tricycle was a token from God. He has his hand on Eamon continuing to restore him to a beauty that far exceeds my limited view.

"...to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair." Isaiah 61:3

(Click on the highlighted title to see Michele's amazing work.)

You're My Sunday

2009-02-21T00:00:00.011-05:00

Today is David's birthday. I rarely use this space to highlight my husband, but wanted to celebrate the many, 42 to be exact, reasons David is a Man to Love. And, I do love him, yesterday, today, and for always.

I made a list last year, which I promised to continue, counting all there is to admire about David. How easy it was to rattle them down, spillling with thoughts and reminders. What a gift to us both, love renewed, because I chose to name reasons one by one.

1. First on my updated and slightly tweaked list, David is my Sunday. What do Sundays represent? Peace, comfort, a day of rest from all that troubles, swirls, and consumes through-out the week. The song that is playing, dedicated to my David today, sings, "when life is like a hurricane...you come and take it all away, you're my Sunday."

2. He talks me off my ledges, and points me to a better walk..."You have a way of taking the noise and drowning it out..."

3. Offers perspective ..."You found the key that always brings me home..."

4. Amazing Dad

5. Mindful of me

6. Makes "Famous Pancakes", finer than any B&B!

7. He's a race car driver, at least on our T.V.

8. Health conscious

9. Romantic

10. Cleans the bathrooms - need I say more, really!

11. Food Shops

12. Prefers to be with us

13. Aging so well, love those "flecks"

14. A great kisser, great.

15. Always has a song in his heart

16. Creative

17. What a wrist, yes I love that wrist.

18. Tuft of hair that pokes out of shirt

19. Big Boys do cry

20. Knows stuff

21. Is our "Mr. Fix-it"

22. Keeper of all animals.

23. Strength of character

24. Strong arms to carry our children, and me, if needed

25. He's an example of Godliness with Contentment - what Great Gain!

26. Laughs, really laughs, at commercials

27. Thinks I'm his best friend, and I know he is mine!

28. Accepts people as they are

29. Would make a great stay-at-home-dad, but provides the means to allow me the privilege

30. Believes: Love is an Action

31. Loves his mother

32. Our very own storm chaser

33. Tries to keep me politically savvy - no small feat

34. Enjoys movie night

35. Still wants to have date night.

36. Is movable with a good presentation of your opinion

37. Looks great in his jeans! (f&b)

38. Demands respect

39. Follower of Jesus

40. Makes us all feel safe

41 Did I mention he gives massages, too

42 Loves without condition - what a Gift!

And one for good measure...David makes the best shakes, enjoying one now as a matter of fact!

Happy Birthday, David,
The Best is Yet to Be!
*********************************************************

The story below has been re posted to give context to our new look here. Still a bit of work to do, but I think Danielle has done a great job! Welcome to the new and improved - Just Another Ordinary Miracle Today - yeah!

The Road Less Traveled

2009-02-20T23:24:00.000-05:00

While in the ICU after Eamon's surgery, I was looking through a Chinaberry catalog. There was an opening letter, a "Dear Friends" section, that really resonated with my "new normal". The letter had originally run in 1994 and was being reprinted. The author had a 2-year old daughter with severe mental and physical disabilities. I have taken the liberty of personalizing her analogy, because I believe it to powerfully portray the beauty and challenge of our "new normal"

The Road Less Traveled

Everyone had gathered, preparing to drive to a favorite vacation spot. I watched people wave to each other as they got into their big, comfortable cars. Beside me was a shiny, red tricycle. Someone cheerfully told me that this is what I would be driving. As the other cars sped off down the highway, I stood there in disbelief. How could I go anywhere on a tricycle? I felt disappointed, confused, and overwhelmed by the challenge. Surely it was a mistake, and someone would soon be bringing me a car too. A tricycle simply would not work for me. Tricycles are just too small, they are slow, and well, people stare at adults riding tricycles.

All of which was true - at first.

But after a while, I noticed that the pedal-pumping was creating nice muscles in my legs, and the fresh air felt good against my face. I began to smile, and before long, children and many knowing adults began to smile back at me from their cars. Soon the cars could only be heard from a distance. My little tricycle and I were on a beautiful path reserved just for bikes. What joy felt when I found some wildflowers beneath my feet and a beautiful flowing stream on my right. I looked off at the speeding cars and felt blessed to be experiencing these hidden treasures.

Soon, I noticed David alongside me - cheering me on and pointing out new sights. Maeve and Myles followed closely on their own tricycles. They seemed right at home in our new environment, and glad we could experience this unexpected joy together.

"David," I shouted, "the sign says 42 miles!" I had been enjoying my journey so much that I wasn't even thinking about our destination or the other cars. I had met so many wonderful people along the path, and many from the highway had pulled over to share in our view.

I realized, I was not a "road-less-traveled-kind-of-girl" by nature, but that God had chosen this terrain for me. He was, and is, making this path one of beauty, joy, and peace. And, I am becoming well-suited for such an adventure.

The road less traveled, chosen for me, will be the path that makes all the difference.
Thank you Lord, for choosing me to ride such a simple, but strikingly beautiful tricycle!

"Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not grow faint."
Isaiah 40:31

They will ride!

This New Normal...

2009-02-17T23:07:00.030-05:00

The Barclay 5, here we are on any given pizza night. Maeve had sketched this depiction of our family, its truth shocked David and I. If you had asked me to picture my family, Eamon would come without wires, but the reality is that he has many. And Maeve notices.

I was cleaning tonight, as I dusted around I couldn't help but see that reality, our new normal. The signs of life in our home include various pieces of equipment each singing it's own tune. And while I pay little attention to these peculiar sights and sounds, Maeve notices.

The Prince's feeding pump and IV pole, loose o2 tanks in the background.

The monitor that measures Eamon's oxygen saturation levels and heart rate

Empty o2 tanks lined up behind an end table

A tank in waiting

There are more, but these have become the everyday fixtures in our world, and have become part of our normal.

Maeve adores Eamon, no question. But, I have noticed a change in her lately. A surge of separation anxiety has emerged where deep security once reigned. Some behaviors are becoming negative "issues". So recently, I asked Maeve, what was troubling her? At first, she mentioned the "What-ifs" of a potential "break-up" of David and I. After reassuring Maeve of our marital commitment and love, I felt impressed to ask her if she ever worries about Eamon. Maeve crumbled into tears reporting that she "worries" all the time!

We talked, I offered reassurance, and tried to explain to my 6 year old how we handle concerns, fear, and prayers answered differently. I found myself saddened that chips had been taken away from my daughter's innocence, and I could not offer absolute answers for Eamon's future. I explained that we, as a family, trust that God will work all things together for our good because we love and believe Him. And for whatever reason, Eamon as he is, is bringing God's son the greatest glory. That we can rest in the promises that God has given through his word. Maeve seemed quieted, we prayed, and snuggled with each other.

Maeve is aware of much and has amazing sensitivity. The last several nights after I have prayed for her, Maeve has asked to pray for me. Maeve prays that God would give me sleep, and thanks me for caring for Eamon through the night saying, "that's so nice of you, mommy!" I shared some details with Maeve's 1st grade teacher, who said Maeve often reports that Eamon had a hard night, the alarm was going off alot and she can hear the nebulizer. All this without a word from me, or David, as to the events that transpire. But she knows, even though I work to protect her, she knows.

And, so does God.

"Those who sow in tears will reap with songs of joy." Psalm 126:5

"And God will wipe away every tear from their eyes." Revelation 7:17

I pray that the grace given in abundance to David and I would also blanket Maeve and Myles.

The Barclay 5 are all well-equipped for "such a time as this!"

The Best Laid Plans...

2009-02-11T21:09:00.007-05:00

It was a beautiful day - low 60s, sun shining, no jacket required - kind of day. Myles wanted to be out, so I thought it the perfect chance to try out Eamon's new chair aboard the stroller base!

So much for the best laid plans... I set all the pieces in place, changed Eamon, readied Myles, and prepared the oxygen tank. My thought, I would disconnect Eamon, run to the back door to reset new tank (the one that can be attached to new stroller -yeah!), race back in to grab the Prince. The part I never factored in was, back door locking before I was back in - instant panic! Eamon, now locked in without oxygen, I outside without cell phone. I scramble to neighbor, place frantic call to Mother-in-law, who lives around the corner, and anxiously wait for the spare key to arrive.

An eternity seemed to pass, I am expecting to see red van cornering on two wheels and skidding to a halt, throwing the key off to me, as if this was some sort of relay event. Instead, the scene is my Father-in-law leisurely, I did say leisurely :-) , walking toward my house. I start yelling for him to speed-up, but he doesn't seem to hear me. I run to him, grab the key, and bullet back to Eamon. Eamon had been having a particularly "junkie" day preceded by a difficult night. I could not get to him fast enough.

I open the door, no alarm sounding, no gasping boy with blue lips, just my sweet, patient, prince smiling at the sight of his silly, silly mama! I take a deep breath and return to the original plan - prince to stroller, quickly.

Eamon was surprised by the sunlight, he is not used to being upright while traveling outdoors. He squinted and promptly fell asleep. So much for a new adventure. Maybe the next sunny, warm, February day. I believe my first gray strand made its formal debut today!

So, I offer these less than perfect photos just because it's the prince, outside, in his new stroller on such a glorious day.

See eyes are already closing, literally within minutes of being out the door!

And, here is the fire we were chasing... Myles cruising at high speeds on big wheels.

Rolling, Rolling, Rolling!

2009-02-08T21:22:00.011-05:00

Eamon has been on the move lately! For some time he has been able to lift his legs, but Eamon decided to add kicking his legs to the repertoire! So, we have been looking for ways to encourage this new trick, and Ms. Ellen, Eamon's home PT, has found one.

Ms. Ellen thought it would be fun for Eamon to feel himself moving as a result of his kicking. An over sized scooter, towel for padding, and some straps to hold Eamon in place, and we were off to new places...or at least, across the floor.

It did not take Eamon long to realize if he pushed against Ms. Ellen's thumb, he would scoot a bit. True to form, Eamon laughed with each jolt.

Eamon and his girlfriend setting-up for the ride of his life!

Ellen was so proud of our boy. Kisses, squeezes, and cheers.

Eamon really worked hard, and conked-out immediately following.

Amazing, Eamon on the move, in a totally unique way - one I certainly never imagined, but moving nonetheless. Nothing is impossible, some situations just require a little outside-the-box thinking. Myles recently said he wanted Eamon to get up already and run around with him. Well, brace yourself big brother, Eamon will soon be chasing you down on his new wheels!

Happy Birthday, Eamon Joseph!

2009-02-03T00:01:00.000-05:00

Due to the festivities, I will suspend the "Looking Back Series".

Eamon, ready for fun!

The Prince is 2, and there is so much to celebrate. And celebrate we did on Sunday. A birthday jam just for Eamon - music, instruments, singing, dancing, and parading. Eamon thoroughly enjoyed the party. He laughed and sang along with his band of cousins.

We thanked God for his life, the gift of each breathe, and toasted to all that is and is yet to be. It was a love-feast, and David and I were so tickled watching the joy Eamon brings, and feeling the obvious love that each person lavished on our little man!

It was a good, good day.

Let's get ready to rumble!

So as we remember where we've been, and look forward to what lies ahead, lets give thanks for the "Good News" of today:

Eamon is totally responsive, as a matter of fact, he is quite a charmer. He smiles, and laughs with ease.

He might even have the Gift of Gab - the boy can chat-it-up when he is feeling the mood!

He is my ultimate partner - we do just about everything together - and I love it!

Eamon really digs Elmo, and if truth be told, so do I!

There is such an increase of purposeful activity.

Eamon is able to hold onto my fingers, using both of his hands simultaneously.

He is growing: head size in the 50th%, which would indicate brain growth!

Stronger in every way: arms, legs, core, cough, voice.

Somewhat on a schedule. If he feels well, he sleeps through the night.

Eamon is working the chair - he looks amazing sitting-up, fully supported and ready to go!

The Prince has preferences - loud music, instruments, voices; he likes to "move-it, move-it" - rolling (on a scooter, a post for another time), bouncing, dancing.

Precious Eamon, you have brought such sweet joy to our lives. You have taught us to be thankful, appreciating the small stuff. You bring purpose and contentment to our days, aligning our temporal perspective with one of eternal value. Your life has caused our faith to deepen, our compassion to bloom, our family to bind-together, and love to grow in new places. We are forever grateful to the Lord for allowing us the honor of being your mama, daddy, sister and brother. We love you, and celebrate your life this day. You, little Prince, are our "good and perfect gift".

Happy 2nd Birthday, Eamon Joseph!

Looking Back - Part 6

2009-01-30T22:08:00.000-05:00

As the day progressed Eamon's respiratory status worsened. At first the Dr thought due to a c-section, amniotic fluid wasn't forced out by the birth, and that fluid was causing some trouble with his lungs. Totally normal.

Not normal, was the increased compromise of Eamon's ability to fill his lungs and saturate his blood with the proper amount of oxygen. We waited, all day long for Eamon to make an appearance. David could visit the NICU, but I was a prisoner to my bed. It was incredibly strange to be in a maternity room, visitors gathered, but no baby to hold.

Eamon's o2 requirement was steadily increasing, by nightfall c-pap (a machine that works to keep the lungs inflated) was necessary. I was finally allowed to be wheeled to my baby around 9 pm. It had been over 12 hours since his birth. They positioned me alongside an open table, Eamon was covered in wires, and I just cried. The nurse debriefed me on the set-up, but all I could think was I had to leave my very fragile baby with this stranger.

Talk about a roller coaster ride - an amazing birth, a stalled day, and now a plummeting crisis. The Drs were perplexed, why weren't his lungs working? I was assured that I would be updated throughout the night. David needed to go home to Maeve and Myles. I was settled back in my room to wait-out the night. And, oh what a brutal night it was. I was extremely uncomfortable, moving like a snail, and expected to start pumping. I called the NICU several times that night, the precious nurse would try to comfort me, describing all the love she was giving my boy.

Around 3am, I awoke in a terrible fright, sweating and absolutely panicked. In the dark I fumbled for the phone to check on Eamon. The nurse couldn't speak, too busy with the baby. I prayed, I cried, I read verses that had carried me before. It was cold and dark and I felt so alone. Around 6:30 am, the nurse finally appeared sitting close to me on the bed. She explained that Eamon became quite critical around 3 am, Dr. Mang was called in, and the need to intubate became apparent. They were extremely concerned, not understanding the source of his respiratory failure. A bit later, Dr Manginello arrived dressed for his grandson's christening. His words were alarming, but I was having a hard time processing them. I called for reinforcements, people began to pray, and we waited - again.

Looking Back - Part 5

2009-01-28T23:00:00.017-05:00

I felt a glimpse of Mimi in scrubs bared repeating - too fun!

Everyone took their position. At 8:35 am on February 3, 2007, Eamon Joseph Barclay entered our world. He had a cry, weak sounding, but a cry. He was here and alive! I still get chills when I remember the faint sound of life filling the room. They quickly gave me a peek then whisked him away to be looked over. David was at the door, filming the event. All you hear on our video is David thanking God, over and over, for Eamon.

Messy, I know, but fresh into the world, and I wanted you to see what we saw.

They didn't bother to wipe him, they knew this mama

wanted to see for herself the Miracle.

Eamon weighed 5.85lbs. The neonatologist, Dr. Mangenello, was genuinely surprised and pleased. Eamon was much larger than anticipated, and appeared to be doing quite well with apgar scores of 8/9 respectively! A concern of mine, before the delivery, was being able to see the baby following the birth - I wanted time to bond, immediately! After a c-section you are basically bed-bound for 24 hours, or at the least, until feeling returns to your lower body. Eamon was doing so well that Dr. Mang assured me, after the evaluation in the NICU, he would bring Eamon to my room for a visit.

Be still my heart.

The Prince, cleaned-up and ready for some lovin'.

Daddy made it all the way into the room.

Mimi was the only one to hold our sweet boy.

I was off to recovery. Eamon, escorted by his Daddy, had gone to the NICU. And Mimi went to greet the small band gathered in the waiting area with the good report!

In the NICU, Eamon was able to pass through the initial area reserved for the most critical children. He was weighed, measured, foot printed, and washed up.

Oh, he had such a head of hair, black-as-night, and was simply a beautiful sight to behold.

Eamon's oxygen saturation numbers were low so a nasal cannula was slipped on for temporary assistance. There was little concern, the drs thought it would correct itself shortly. The Dr visited us in my room, saying things weren't exactly as they had thought, but David quickly asserted that things were as they had thought , but had changed because God intervened.

Family and some friends visited David and I, but no baby in my room yet. Maeve and Myles arrived, but were not able to see their little brother. We all just chatted and waited for news that Eamon was no longer requiring O2, and was ready to be held!

Sadly ,our wait would be long.

Maeve, the Big Sis, ready to meet her boy.

Myles was too busy running around to be captured in film.

Eamon, resting with the cannula.

Looking Back - Part 4

2009-01-27T22:37:00.011-05:00

I think we need to move things along...a bit.

The day before Eamon was to be born, remember - now there was a scheduled c-section, I busied myself like any nesting-mama-to-be would. Finishing up laundry, cleaning and primping all Eamon's sweet little things, readying our home for whatever lied ahead, 24 hours ahead, to be exact.

I was excited. We planned on a special dinner with Maeve and Myles complete with presents for the "Big Sister and Big Brother". The kids were dropped at Grandma's for an overnight - I needed to be at the hospital by 6 am. Kisses, hugs, and a quick swing by my parents' house. I felt peace-filled and told my family I was moving past praying and into praising. God knew all the details, He didn't need any last minute panic-prayers from me. I was just going to thank Him for my son's life, and jump in the front car for the roller coaster ride. We were making our ascent. And my arms were reaching for the sky.

As we lay in bed, I asked David if he was afraid to see the baby? What would he look like? The Drs believed Eamon's head would be tiny due to the lack of brain, and his body would be quite disproportionate. Overall, they anticipated a full-term baby that was significantly under weight. My husband's immediate response quieted any lingering fear - Eamon will look great, he'll be handsome and perfect in every way.

We drove to the hospital, emotions beginning to rise but peace still blanketing us. In the parking lot, David suddenly got sick. There was my partner, face in the gutter. Was it nerves or a virus? It didn't matter, the drs thought it wise for David to watch the birth from the hall. Thankfully my mom, dad, and sister had planned to be at the hospital to pray and wait, offering support with their mere presence. A quick phone call was made asking Mimi to join me in the delivery. She was ecstatic. Apparently, she hung up the phone and reported, "Well David's out and I'm in, let's go!" (such beautiful concern for my husband ). Mimi raced over, obeying all traffic laws, I'm sure!

Me...being prepped.

Drs Barclay and Rogers reporting for duty. How cute is Mimi?

If my mom was anxious, it never showed. We laughed at the turn of events, as a matter of fact, we laughed at just about everything. There was joy in that room as we prepared to meet our sweet prince. David could stand at the door, I could hear his voice, but not see him. His view was perfect, even better than by my head which is where my mom was perched, reporting every detail as we progressed.

The operating room was full - various drs and several intensive care nurses available, but a general atmosphere of anticipation arose - a baby would soon be born.

Looking Back - Part 3

2009-01-25T16:09:00.009-05:00

This has been harder than I anticipated. There are just so many memories muddled together, they are hard to flesh-out into succinct posts.

Suffice it to say, we had a glimpse of the Body of Christ as it was intended to be - people prayed for us and our baby, wrote cards, called, and offered to help in every conceivable way. We were completely humbled, and still are, that anyone would choose to walk this road with us, lifting up a common voice to heaven on Eamon's behalf, and loving us through dark days.

My mom had updated my family so that I wouldn't need to repeat the painful verdict. I remember my sister, overcoming her own fears and insecurities, to stand with me for some difficult moments. I recall the first conversation I had with Jerry, my big brother, discussing the hard issues at stake - confessing to him my absolute belief that God could heal, but now that it had hit so closely home did I really believe God could heal my baby?

I prayed, as did many, for God to re-create Eamon, while at the same time knowing I would cherish him regardless of the answer. As his birth grew closer, I found my prayers simplified, all petitions having been made known, and now I could rest in praying the Our Father ...Thy will be done, on earth as it is in heaven.

Originally, it was agreed that I would deliver Eamon. I had a c-section with Myles, but the Drs felt it was an unnecessary risk for me to have surgery. Again, reminding me that the possibility of Eamon's survival was minimal. I was actually thrilled with the chance to deliver again. It was my initial request - to try a V-BAC (Maeve was delivered in a traditional manner - possibly too much info, right!)

An appointment was arranged for David and I to meet with Dr. Manginello, the director of the Neonatal Intensive Care Unit (NICU) at our hospital. He would be present at the birth along with two NICU nurses. Once the baby was born, he would resume the care for him, and the details of what type of "heroics" we wanted performed needed to be addressed.

I can vividly see the drawing he created that showed Eamon's head lacking brain, filled with fluid instead. I asked how I could feel the baby moving, as we spoke, if there was no brain. The Dr explained that there was a brain-stem which allowed for involuntary functions. Those movements were simply reactive. He compassionately posed various scenarios, even referring to Eamon as our son, that would require our thoughtful consideration. There were ways that they could keep our baby alive, for an indefinite period of time, if we desired. Questions that no mom or dad should ever have to evaluate needed answers that we simply didn't have. How could we, really, until they presented themselves in our reality. I prayed that God would not require that we determine life or death, that He would settle that on His own.

At about 36+ weeks, I was sent for a fetal MRI of Eamon's brain. Hoping to give a more accurate description/prognosis. Confusion was setting in, why was this baby still growing? The report was never elaborated on, strange for the perinatologist was usually quick to give a negative word. Actually, she never came back in to see me again. And now, as we were fast approaching my due date, Dr Death was nowhere to be found.

The fact that Eamon was still with us altered the birth plan. Suddenly, a c-section was back on the table. Eamon had enough problems, why add to it the trauma of birth. We were elated. Eamon was at the least viable enough to warrant surgery for me!

God was still at work preparing the way for the mister's debut!

Looking Back...Part 2

2009-01-21T22:21:00.001-05:00

A whirlwind. That is the only way to describe the days that immediately followed. More tests, more discussions, more tears.

I was to be closely monitored. Weekly visits to the perinatologist for ultrasound checks. There was a belief that at some point Eamon would just stop growing. Having moved somewhat past the "how committed" question, the emerging topic was on "heroics" - namely, what kind we would want performed to save our doomed "fetus".

The term "fetus" was used up to the end. The Dr (the peri mainly) never allowed any personalization of our baby. She was brutally direct and condescending of our choice to continue the pregnancy. There was definite concern that we just weren't getting it - our baby would die, probably sooner rather than later. David and I were not the typical couple, I guess. Devastated, yes. Concerned, yes. Understanding the gravity and breadth of our baby's issues, yes. But destroyed, lacking hope, full of fear, no! We were unified in our faith, believing regardless of the outcome, Eamon was our gift and God's grace would be enough. Regardless.

The visits were difficult, each one seemed to intensify the prognosis. David was with me for the initial scans, but there were too many for the possibility of joint appointments. I would try to prepare myself for each visit with Dr. Death, as she became known. I would literally lie on the table listening to her report on the present status of the my baby, and repeat "Do not fear, Tracy, your prayer has been heard!" After most meetings I would need the rest of the day, sometimes days, to gather myself back together. I would keep to my very-tight-inner-circle until I felt strong enough to reenter the world.

As providence would have it I was already the mother of two small children, Maeve -4 and Myles-2. Life needed to be normal for them. And, looking back I can only say that in my utter weakness, and at my lowest point, God was strong in me. "My grace is sufficient for you, for My power is made perfect in weakness." (2 Cor 12:9) There could be no other explanation.

I had been looking for a bible study weeks before the ultrasound. The first day of which was the morning of my exam. That placement was divine. God's word became life, literally, to my body and soul. I could not be near a scripture verse without a deep resonance within my spirit.

We were studying the Old Testament, blood shed and a culture vastly different from ours, but amidst these ancient men and women of faith God poured himself into our hearts. In the book of Numbers, twelve Israelite leaders, one representing each of the tribes of Israel, were sent to spy out the promised land - Canaan. Ten return disheartened, filled with fear for the giants they saw, and discouraged Israel from pursuing the land God had promised to them. But Joshua and Caleb returned with excitement. Indeed, Canaan was a land flowing with milk and honey. And yes, there were giants in the land, but surely their God was bigger than any giant to be encountered.

Perspective makes all the difference. The men all saw the same scene. The 10 had only man's perspective. It was limited and could easily be defeated. Joshua and Caleb saw the challenges in Canaan through God's perspective. Suddenly, my situation was illuminated for me. The Drs saw the truth, but left no room for God. David and I knew that surely there were giants in the land, but believed they were no match for our God!

Our promised land was Eamon safe in our arms.

Looking Back - Part 1

2009-01-18T21:18:00.022-05:00

In two weeks we will be celebrating two years with Eamon Joseph! For the sake of posterity and in thanksgiving, I plan to write a series of posts detailing the arrival of our Prince. I will break it down, both for ease of reading and for me, so that I can emotionally reabsorb the experiences.

Okay, brace yourselves for this picture...

Yes, "Lord have mercy" is an appropriate reaction. I am good-and- 9 months pregnant, actually this is about 5 in the morning and David and I are preparing to go have ourselves a baby...it is February 3, 2007 - Eamon's birth-day.

The frontal view is easier on the eyes. I find it amazing how calm we were, fear was not a part of that day, even though the delivery room would be filled with nay-sayers.

As I have mentioned in earlier posts, we were given a near-fatal diagnosis at our 20 week ultrasound.

I remember the late afternoon appointment, we were giddy - knowing already the baby was our second son, asking the technician all sorts of questions about his size and giving voice to dreams for our little man. The woman was awfully quiet, we barely noticed answers weren't forthcoming. As the exam was ending, she mentioned the Dr would be in to talk with us.

Confused, we sat waiting in the dimly lit room, unaware that our world was about to change - forever. The Dr., a specialist (perinatologist) available at the ultrasound location slipped in, quieting the firing of questions, and began her own exam. It seemed like an eternity until she finally spoke. Gravely, she reported that the baby had fluid in the right and left ventricles of his brain. Ultimately, this would lead to great obstacles in development. Obstacles that could not be overcome, a congenital brain abnormality.

An amniocentesis was suggested, for understanding and potential information that would guide my personal care related to delivery. We agreed, completely at peace with a procedure I never thought would be an option. Literally, lights turned on, a parade of people were in and out (Drs, techs, genetic counselor), my OB was being reached, and the amnio would be done immediately.

David and I had a few minutes alone. We were in shock, I can not recall all our words, but I clearly remember through tears our prayer that God would be near, giving us wisdom, peace and healing for our baby.

The needle was long, the Dr watched on the same ultrasound screen that reported our nightmare, as she pierced my skin and uterus. You could easily see the needle gathering DNA information. To our delight, you could also clearly see our boy reaching for the intruder in his space. Eamon was trying to grab the needle, actually boxing with it. Our very own "Fighting Irish", Eamon was a fighter. Alive and responding. A balm for our wounded hearts.

We left after further discussion of options - "How committed to this pregnancy are you?" A question that would be asked countless times in the next few weeks. There is no hope of correction. Your baby will most likely not make it to term, if the baby does he will not live for very long. There is no hope for this "fetus".

David's mom was home watching Maeve and Myles. God was gracious, Maeve was supposed to be at that ultrasound appointment to see our baby for the first time. I called my mom, numbly gave her the report, asked for prayer and to please call my family. I did not have the strength to retell the scenario.

We talked a bit. God was so involved from the start. In my heart I was at peace, knowing Eamon was perfect in God's eyes, and believing He could intervene on my baby's behalf.

At my sink, a couple of hours having passed, I looked on the windowsill spotting a little lamb Myles had made earlier in the day. My eyes stung with a flood of tears as I read God's voice to me , "Do not be afraid...your prayer has been heard" (Luke 1:13). I have never heard an audible voice, but that simply verse spoke, no screamed, to my spirit, rivaling any human voice.

That word was all it took to set our position - no fear, all trust, God had a plan.

Our Worth

2009-01-06T06:02:00.018-05:00

Eamon's chair, the chair, has arrived. Long anticipated, grossly overdue.

It is called a Kid Kart, promising custom-support for the Prince. Our insurance does not cover it, and so, graciously Mary's Fund has offered to gift Eamon with hope-in-a-seat.

Certainly, there are many features of the chair/stroller option that will enhance Eamon's ability to participate in everyday-living-type experiences. We are still tweaking, making adjustments for comfort both in the chair - and, truth be told, in us.

The chair is great, but it comes at a cost. Literally, a price tag that could choke had it not been for Mary, precious Mary. And, for us our new normal changes again. The seating/stroller I have are outgrown, but comfortable. They are all the right size, drawing minimal attention, fitting neatly in my car, and carried about with ease. That has changed. I know this feeling is temporary, soon this will be normal and fit quite well - just like any addition of equipment before. But change, for better or worse, costs something.

Eamon, saddled up and ready to go, well not really- the stroller base is in my car.

Checking out his new toy courtesy of his Fairy Godmother

Me, checking Eamon out. Precious.

This month happens to celebrate the Sanctity of Human Life - a month set apart to honor life in all its shapes and sizes. When I think of Eamon, and Mary, I am reminded that not everyone shares my deep regard for all life. Eamon is not like other children, and in my womb that recognition caused a bit of tension between some Drs and us.

We were asked, somewhat brutally, how committed to such a pregnancy we were. Even after explaining our position, the question was revisited over-and-over. I can appreciate the need to be sure I had all the information, and options, available. But after that point was made, repeatedly, I would have liked to move on without the pallor of judgement that remained.

We live in a disposable society - if something does not work, throw it away. To many, Eamon would have fit such a category. Our value is measured in contribution and productivity, right? But, knowing that each human life, its essence, is imprinted with the image of God alters my view. We were, and still are, able to rest in the belief that God has chosen to display His splendor in and through our little man. Our value, or worth, was set by God. And He said we were worth the cross. Yes, Eamon was worth God's son. There it is. Set.

I am thankful that long before there was a thought of Eamon, I had already wrestled with a decision that would be asked of me years later. There was no need for deliberation. I knew the instant the question arose. "Yes, we are all the way committed to this baby!"

As I continue on my mom-journey, I realize more and more that our ideas of perfection are highly overrated! True perfection is only defined by our Creator. And He does all things well.

Wishing You...

2009-01-03T23:10:00.009-05:00

a Rockin' New Year.

I know I am days late for a New Year's greeting, and well-beyond Christmas cards, but I had such ideas for a fun card..ahh, maybe for 2010!

In the meantime, here are Maeve, Myles and Eamon sending lots of love- loudly!

Santa was quite generous, creating a band of sorts. Eamon so enjoys that beating, and I do mean beating, of the drums - he laughs and laughs. Not pictured would be the microphone and amplifier - I said loud, right?

In 2009, may we find many reasons to sing, make music, and dance!

Unlikely, Indeed!

2008-12-29T22:19:00.007-05:00

Christmas Eve has always been a special night. New outfits, carols by candlelight, anticipation for the morn. This year, however, challenged our ability to revel in all the joys Christmas brings. Papa wasn't home.

Christmas Eve came, and we all hustled and bustled amidst concern for Dad. Our church service was at 4pm, and it was going to take a Christmas Miracle to get the Barclay5 there in time. David and I toyed with the idea of not going at all. But he suggested we get ready and surprise Papa, bringing Christmas Eve Service to him, bedside at the hospital.

With renewed excitement, everyone cooperated, dressed and loaded into the car. We discussed our plan: the kids would go in the room first, we'd sing several Christmas carols and hymns (I have a book, thankfully), read the account from Luke, and close with Silent Night.

In my minds eye I knew my Dad would be thrilled. But I never anticipated the beauty that would transform a stark-white, lonely room into a Cathedral of sweet praise. We sang with such joy, my dad wept like I have never seen before. It was joy, and gratitude, and humbleness, and a holy peace all mixed together and flowing without restraint. What a gift for us all. Christmas came in an unlikely place.

We gathered ourselves, wiped tears, hugged, kissed and went on our merry way to dinner awaiting at Mimi's. I was quite shocked to realize as we opened the non-sound-proof door that an audience had gathered - Christmas had come for them, too, through unlikely (and somewhat out-of-tune) voices.

But isn't that just how Christmas is. Christ, God's son, came to us in human form in the most unlikely of places - a lowly manger. Christmas came, and still comes, no matter where we find ourselves. Sometimes, we just have to look!

Papa came home this evening! Our post-Christmas gift - and my number 152.

I'll Have a Blue Christmas..

2008-12-23T21:28:00.004-05:00

without my Dad home. Sadly, Papa had to go back to the hospital this afternoon. Possibly an infection, his sugar levels are HIGH, and a list of other issues. Please pray, if you can.

Mimi insists that the show must go on. So, to that end, we will all have dinner Christmas Eve and take turns visiting our guy.

My dad is such a sport. On the phone with my mom, asking how daddy is doing, his response, "I feel good!"

Just love him so!

Reasons to Smile...

2008-12-21T22:48:00.007-05:00

Maeve and Myles had a Snow Day, reason enough. We live real close to my in-laws so Maeve was able to do some baking with her Grandma. What precious memories these will be for my girl.

Recently, Maeve saw The Nutcracker Ballet starring my niece, Morgan. Well it has been none-stop-nutcracker-love ever since. Eamon is the honorary audience for all show times.

Myles is not exempt from the performances. It is not clear what role he was assigned by the boss. But the boy has heart - look at that passion.

All that fun aside, the real reason for our smiles is that Papa has come home from an almost 2 week hospital visit. Myles was so excited he said, "Mom, quick call Papa on the cell-o-phone (is that not the cutest, ever!), tell him to come right over to see our tree!"

We will let Papa rest for now, but ah - it is so nice to have my daddy home! Now Christmas can come.

Home for Christmas - my number 151!

Click!

2008-12-19T13:27:00.011-05:00

Even a snow storm couldn't keep the Barclays from therapy! I remembered the camera and here is my best effort, in between cheers, of capturing the Mister doing his new thing - standing.

Indeed a miracle!

Getting ready...

And, "1, 2, 3"...Up you go!

Checking out the new view.

That's our boy!

Yeah, we are all so proud!

Even Eamon is feeling the pride, and joy -such joy, but there is a delay with the camera so I missed his most jubilant of smiles.

Ah, worth the trek with 3 kids in the snow. Eamon standing - I really like the sound of that. Number 150 on my gift list, for sure!

This Day Last Year...

2008-12-17T22:56:00.000-05:00

Eamon came home from a three week stay in the hospital. He had been admitted because of a respiratory virus that reached a critical point. Eamon was released on oxygen with hopes of weaning, eventually.

I read this quote from Albert Einstein on another blog:

There are only two ways to live your life.

One is as though nothing is a miracle.

The other is as though Everything is a Miracle.

We choose the latter. We choose it every day, sometimes several times a day. There are days when the miracles are obvious, and days when it requires a bit of searching. But they are all miracles nonetheless.

Eamon is 22+months when he wasn't promised one single breath. He is laughing and reaching. Eamon's muscles are strengthening. He can now bring arms to a flex-muscle position and those little leggers are being lifted. This for a boy they thought had a degenerative muscle condition. All miracles.

David had a vision of Eamon standing by Christmas. Even I raised an eyebrow at the reality of such a position in the immediate future.

Eamon has extremely low muscle tone. He is not yet sitting, or even holding his head. Several weeks ago, Eamon was fitted with braces meant to keep his feet at a 90* angle eventually allowing for some weight-bearing on his chubby little legs.

So Friday at therapy, sweet Ms.Lisa and Ms.Tracy (PT & OT) thought to position Eamon so that he could be brought up to a stand. Mind you, he has never had any weight on those legs. With an exuberant, rocking motion and a "1,2,3" up Eamon came. I was watching from the sidelines and could clearly see a muscle contract in his thigh - there is a muscle under that chub! Eamon also pushed against the ground, STOOD for a second (or two), then landed with a great laugh in Ms. Tracy's lap.

We cheered. And after the shock subsided tried again, and again.

I can not explain the beauty of seeing the prince upright. He looked like such a big boy.

Standing by Christmas - what a miracle.

(I will be sure to take the camera aong on Friday. But truthfully, I am so thrilled to watch him - I forget to click:).

One Size Does Not Fit All

2008-12-14T17:28:00.005-05:00

I tried to squeeze my post-Thanksgiving/pre-Christmas bloated hands into adorable pink gloves that claimed to be a fit for all. Note the word squeezed. The gloves did not fit. Rarely can one-size-fit-all.

Last week, I had a surprise visit from a friend I haven't seen in apparently 3 years. She wanted to know all about Eamon, an abridged report of all we have experienced in the Prince's 22+ months. The sprint down memory lane forced me to retell the story and be reminded, again, that clearly God knows that one-size is not the right fit. His grace, which incidentally is the theme of our Eamon adventure, is customized. Perfectly molded for each circumstance and new each day. It never loses staying power. It is completely divine. A miracle.

So many are hurting. Cancer looms, death knocks, sickness robs, betrayal stings, finances scare. Sincere pray waiting to be answered. And yet, it is. Grace. Allowing human hearts to rise above what would otherwise destroy. Hearts able to be at peace and experience joy in its simplest, most profound form. That is Grace. Strength that defies - Grace. Vision that can see "plan B" might just be the real plan. Being in the eye of the storm - Grace.

So when asked, "How do you do it - be Eamon's mom?" The answer is I don't, it is all Grace. I couldn't read an other's script. This grace is customized for my "broken road".

Customized-Grace, my number 149!

Glimpses...

2008-12-08T21:22:00.019-05:00

from around our house, and reasons to be thankful this season.

Breakfast, Barclay-style, sunglasses and suited up for a pirate adventure because that's just the way we roll. (Number 141)

The reality of trying to get your children to pose.

(Number 142)

Love of another kind!

(Number 143)

My very own Pilgrims.

(Number 144)

Maeve rehearsing Psalm 100.

(Number 145)

The most wonderful time of year. Not really a tree farm, but M&M thought as long as the trees were up on the stand, we were cutting it down. Works for us!

(Number 146)

That face, love it!

(Number 147)

Eamon, laughing all the way, ha-ha-ha!

(Number 148)

Eamon's shirt, I Believe, true in so many ways.

We believe in the sweet wonder of Christmas.

We believe that Eamon is our gift in any season.

We believe that God has a plan for the prince.

We believe in the power of prayer.

We believe Eamon will continue to strengthen.

We believe that God is good, regardless.

Gobble, Gobble!

2008-11-27T15:26:00.003-05:00

Happy Thanksgiving from the Barclays!

Endless Thanks

2008-11-26T21:01:00.004-05:00

On the eve of Thanksgiving, traditionally a night that hosts church services solely designed to give thanks, I want to cultivate a heart of gratitude.

Throughout my days I encounter many moments where God seems to give me a "wink" but I am not always quick to jot it down, or type as the case may be. Inevitably, I forget those specific "winks". And so the Gift List, intentionally looking for and documenting reasons for my joy.

If I was able to attend such a service dedicated to praise this is what I would have to offer:

133. Impromptu lunch with my friend and our children. Our shared history makes conversation possible above the chaos that naturally ensues when little ones and alarming child are involved.

134. Missing my family -odd intro to this gift, but Mimi and Papa are out of town for the holiday. So even though I might still have been with David's family - something just doesn't feel right. It's good to miss people sometimes because it reminds you of the blessing of closely located family. I don't want to take that luxury for granted.

135. Thanksgiving Chapel Service at M&M's school this morning. Children singing praises, reading God's word, and leading those attending by example set the tone for this holiday season.

136. The Thanksgiving Prayer Walk that followed chapel. It was a small gathering of parents that walked from the flagpole to 7 identified locations around the school building praying for our children and their teachers. It was such a sacred assembly because God clearly is found when two or more gather in His name.

137. My little ones excitedly preparing for a reader's theater presentation they will spring on the family at our celebration tomorrow. Complete with pilgrim hats and props.

138. Eamon's contagious smile, warming my heart with each breathy laugh.

139. A new seat for the prince, albeit a loaner, allowing him to join us at the Thanksgiving table. Sitting up, soaking in all the sights and smells. Laughing, I'm sure, all the while.

140. Days off to decorate, a tradition for the Barclay 5 to deck the halls the day after we feast. And, a little extra exercise to assuage our guilt.

Happy Thanksgiving!

Building Cathedrals

2008-11-25T12:16:00.010-05:00

My sweet cousin, Deirdre, sent me a video clip, The Invisible Woman. I found it to inspire what I endeavor to do, and remind me of all the wonderful mothers I am so blessed to know.

My ongoing gift list needs to include the many women who have shaped me, who have built when they thought no one was looking, and who continue to encourage me through my days. Number 131, my mom, thank you for pouring your life out - I hope to be a Cathedral worthy of your sacrifice.

And to all the other women (number 132), who set out to live selflessly, you point me to a better walk. My baby cathedrals are affected by your influence. So "with admiration for the greatness of what you are building when no one sees," I offer my gratitude.

Do Not Exasperate Your Children...

2008-11-22T22:09:00.009-05:00

There is a scripture verse that warns against such activity. But, it's not easy to get a good picture.

As a side note to the agony I subjected the Prince to - the hat, a sweet little Irish knit that has been worn by all my babies! I just love that!

Our 7 Wonders of the World!

2008-11-20T22:37:00.005-05:00

Well, the 7+ Wonders of our World. My children are somewhat fascinated with the idea of a free public library. So much so that we have started visiting the libraries that dot Bergen County. Some like to travel afar, some like to be connoisseurs, we like to fully acquaint ourselves with the vast circulation of books, DVDs and audio recording in our neighboring towns.

M&M don't quite understand the "free" part. Maeve, the only other card holder in our traveling band, tells me "Don't worry Mom, I've got it this time."

Their feverish excitement reminds me of a friend I used to teach with. Bashi is an avid reader, with a vocabulary that includes words like.......well, they are so impressive I can't remember the one I was going to reference. Anyway, Bashi was mugged several years back. While giving report to the police, she was gripped with absolute terror. Bashi realized her library card was included in the lost items. She had images of the assailant racing to her library, checking out all the new releases and DVDs with no plan to return them in a timely fashion, and ultimately sticking Bashi with untold overdue fees. Clearly, Bashi wins for greatest respect for "the card" and overall devotion to the Library, but Maeve and Myles are in close second.

The countdown has begun for Myles. At age 5, he too will be eligible for a library card. And then, Maeve will not have to always throw hers down for payment.

These Boots Were Made For Walking

2008-11-17T21:59:00.005-05:00

Eamon is stylin' with some new orthotics. Exciting because this is the first step toward "standing". It will be a process, but the end result will be weight- bearing opportunities for the prince. These fancy boots, ok braces, will allow Eamon's feet to remain at a 90 degree angel. After an orthopedic clearance, we (drs/therapists) will fit our boy for a "stander". A somewhat Frankenstein looking device that will provide full body support in an upright position. Thus offering Eamon the experience of standing. Being upright allows for greater respiration, digestion, hip maturation and a whole new outlook on the Mister's world. I can hardly wait, but alas wait I must. Truly rehabilitative equipment takes forever to acquire. We are anxiously anticipating the arrival of Eamon's Kid Kart, a customized seating stroller and base, which we ordered June 3rd - yes, that would be almost 6 months ago, but I'm not bitter!

Regardless, we are thrilled for Eamon. He is ready for some new challenges.

If I may be so bold as to ask for a bit of detailed prayer for prince number 2. David and I often wonder if Eamon is uncomfortable, in any way, that we are unaware of. He doesn't speak, and while I feel completely in tune with Eamon and intuitively understand him, there are still some questions left unanswered. One that seems to plague us is whether Eamon has an itch. He would be unable to scratch it on his own, and how could he communicate such a need. I know it sounds trivial, but it upsets us to imagine our little man so uncomfortable. So to that end, David scratches Eamon randomly - a real full body scratch - just in case. And I, everyday during spa time rub and cream every exposed part of his precious body. Due to our diligent scratching, Eamon is probably the least itchy child around, but still a bit of prayer never hurt!

The Prince, in all his glory, watching Elmo - why is it every child loves that furry friend.

How Great is Our God

2008-11-10T13:04:00.007-05:00

Yesterday, our church had a media presentation of Lou Giglio's How Great is Our God. It was an incredible display of the Heavens - stars bigger than words can explain being compared to the almost insignificant size of planet earth, and ultimately to the two cells that come together to form each precious person. To hear and see the magnitude of God's greatness, the display of his glory in the sky, and the intricate, coded details of our bodies certainly would convince anyone of His existence. One may still wrestle in our humanity to comprehend the indescribable of the Divine, but you could not rationally deny Him. David and I, along with the whole of the body at church were awe struck, humbled and ecstatic with the absolute wonder and enormity of our God. He has a plan.

And as awesome as God is, He is still intimately aware of us. Our needs, struggles, the places where we lack. Our comparative insignificance but to Him, we are marked in His image, beautiful and so loved.

He has a plan. And so, Eamon was perfectly created for a high purpose and to the Glory of his creator. I can hardly wait to see the unfolding, the majestic display.

"We wait in hope for the Lord; he is our help and shield. In Him our hearts rejoice, for we trust in his holy name."

Get Out the Vote, Barclay Style

2008-11-03T21:46:00.008-05:00

It should come as no surprise that the Barclay 5 tend to be on the conservative side. Maeve and Myles have been quite attune to the presidential election. Several months back, while driving in the car, Maeve announces, "Obama, Obama, Obama. Barack Obama, I'm so tired of hearing about him!" To which Myles commiserated.

This certainly set a tone for M&Ms tolerance factor for the other side.

With all the tension the race for the White House has created, I thought a bit of levity was needed. The following story is true, but names have been changed to protect the innocent.

Maeve was busy hanging her coat at school when her friend, we'll just call her Jane, came along. Maeve enthusiastically asked who she (Jane) was voting for. Without hesitation, the unsuspecting girl answered "Barack Obama!". Aghast, Maeve responded with "W-h-a-t, don't you know he lies!" Poor, frightened Jane answered, "I didn't know." Maeve was still reeling when she later relayed the event to me. Horrified that her friend would vote for "Barack-O".

The girls have since settled on agreeing to disagree, and will continue on peacefully their friendship.

I am glad to see such enthusiasm for civics.
So tomorrow, Maeve and Myles will accompany us to the polls and cast "their" vote. No secret who Maeve is voting for! Go McCain/Palin!

Trick or Treat

2008-11-01T10:12:00.012-04:00

Just some Pumpkin Fun! This pumpkin, in particular, is our inspiration for Eamon's ensemble. Veggie Tale Pirate, of course.

Myles is "batty" for his mommy.

The end of a hayride with prince #1, Eamon stayed home because it was cold and windy.

Our little "veggie" pirate. Ah Hoy There!

Quick name that picture! Napoleon, anyone?

The crew! Myles is giving two clues: He is red and really fast; yes, he is speed - Lightning McQueen. Maeve is "Bop Bop Bopping to the Top" as Sharpay.

Oh, and for good measure - Clifford, our family dog, is a Yankee!

Cousins! Emma is SpongeBob and Miss Charlotte is a wild chicken.

Everyone. All treats and no tricks. As I write, my M&Ms are counting out their spoils!

Unbelievable, we gave out just shy of 12 bags of candy. Our Hood is the place to be for treat collection!

The Latest Fashion!

2008-10-29T22:40:00.000-04:00

Eamon and I spent Monday and Tuesday at the hospital for an EEG. Somewhat routine for the mister. We were warmly greeted by Drs, nurses and staff that we have come to know over the past year. Strange where life takes you, but it made for a more pleasant stay. They even reserved a private room with a view of Downtown and the Hudson River for us - it pays to know people!

The "Good News" is that there was no seizure activity. However, there is irritability in his brain waves that indicate the potential for seizures. Same report really as the last test. So no changes in medication, but a new prayer concern. Often, with infantile spasms, they progress to a more conventional seizure disorder. So far Eamon is good. Spasms are seizures, but a specific type that responds to certain treatments. Full blown seizures would be a new game we'd rather not play.

Thanks for loving Eamon, supporting him, and believing God has a plan.

Mystic or Bust

2008-10-29T22:17:00.014-04:00

We headed north over the weekend to Mystic, Ct. The weather cooperated Saturday and was beautiful on Sunday!

Our first stop was the Mystic Aquarium. Beluga whales, sea lions, sting ray touch tanks and more! The kids loved it.

True to character, Maeve has found her latest future occupation - Beluga Whale Trainer Extraordinaire! The girl has plans - big plans.

Myles seems content to enjoy the marine life from a healthy distance. Oh, that smile!

While Eamon and I watched from a safe perch, our M&Ms fearlessly touched, even pet, the African Millipede. Myles wondered what was moving around on its back. Oh, no worries, just mites. Apparently, not the type to come home as a souvenir.

After a nice dinner, we ducked in for an early night. The kids loved staying in our first class accommodations - HoJo, Mystic style!

Then a bright start for the seaport. Beautiful views of the Mystic River were the backdrop of our day. Eamon strolled peacefully enjoying the scenery.

Maeve found her pleasure craft of choice.

Myles found his! He comes from the school of Bigger is Better!

And, I found mine.

We played.

And, built toy boats. Myles was open to Daddy's input for general design and craftsmanship.

While Maeve opted to create solo.

It was fun to be away, no beds to make or meals to prepare. The fun memories made are certainly number 131 on my Gift List.

Leaving Room for God

2008-10-24T23:17:00.014-04:00

Quite a bit of time has passed since I have added to my Gift List. There is so much to be thankful for, God shows up every day, all day, if only I would slow down to recognize Him.

"Always be in a state of expectancy,
and see that you leave room for God to come in as He likes."

Oswald Chambers

121. The Ripple Effect: Mary Crilly's legacy. One girl enriching lives and spreading joy long after she has taken her last breathe.

122. A day at the park with an incredible view!

123. Knowledge being passed down: Big brother, Myles, sharing his passion for cars with Eamon.

124. Maeve's excitement to have me in her classroom.

125. Time away.

126. Eamon turning toward our voice.

127. Myles' giggle.

128. Kids : their chatter, performances, skipping, and general merriment. Our neighborhood has turned over in the past year. There are 17 children now, most under the age of 6. At any given time, I can look out a window and catch a glimpse of childhood.

129. The Fall - sights, smells, tastes, and the coolness. I just love, love, love the Fall!

130. A sense of purpose. Knowing God has equipped you for your particular path. And, beginning to embrace it even though it is different

Rocks and Gingerbread Men

2008-10-20T12:41:00.013-04:00

Jugglers, balloonists, unicycles, and more greeted us at The Big Top Bop, a dinner to raise money for Mary's Fund. The kids had a great time gathering "trick -or - treats" while the adults placed their bids for the silent auction. Uncle Jon needed a cart to carry home his loot! While Mimi stood guard of her basket insuring ultimate victory.

I had fun dressing my crew, but despite our efforts a family picture eluded us! Eamon was so handsome and warmly embraced by the many therapists and doctors present. The event proved to be beyond our expectations. Such a spectacular and large scale party yet it felt like we had been invited to a Crilly Family celebration. Mary's life was honored. To see a banquet room filled to capacity, keeping her legacy alive in other special needs children, was priceless.

The beauty of Mary's Fund is their focus on the children. All Mary's kids were invited as special guests at no cost. It was precious to see these special children surrounded by their family. A video and slide show highlighted the many ways the fund is put into action: therapies, equipment, outings, dancing and horse back riding. It is quite overwhelming as a family that benefits from such an organization to realize all that is done to enhance the lives of many local children, but especially of our little prince.

I read an article recently that explained how people tend to fall into two categories when relating to a special needs child and their family. One are The Rocks, those who step -up and embrace this "new normal" with you; and the Gingerbread Men, who fear the unknown and flee. Our family has been remarkable blessed with all Rocks. Even though it has cost them, our family and friends have supported us in every conceivable manner - and we are forever grateful. Eamon was honored by the presence of his Grandparents, and his local Aunts, Uncles and cousins. I felt so proud of our representation at the dinner, and I know it spoke volumes to the Crillys as to our appreciation for all they do - more Rocks for Eamon.

As we continue down "The Road Less Traveled" with anticipation and hope, I am comforted that so many go before us, alongside us, and behind us, encouraging each step along the way. You are all so much a part of what God has done and still promises to do.

You are loved!

Stones of Remembrance

2008-10-16T22:38:00.017-04:00

Well the camera was charged, but after a meeting of the minds we have decided to hold off on school. It seems clear that Eamon needs a private duty nurse in order to safely attend the program, but more on that another day.

Yesterday was The National Day of Remembrance for Pregnancy and Infant Loss. My heart is sensitive to such loss because that was the sole prognosis for Eamon. Those feelings of uncertainty during our pregnancy, not being promised life after the womb, are quick to bring back to remembrance.

In the fall of our pregnancy I felt it necessary to acknowledge Eamon's life in a tangible way. David and I had just celebrated 10 years together, and a gift was still pending. I had found a circle of love necklace intertwining three thin bands of diamonds. Perfect, I thought. I had three children, regardless of the outcome of our pregnancy. There was something powerful in proclaiming those three lives in a public manner. "This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live." (Deut.30:19) We chose life long before the necklace, but the "stones" were to be reminders of the gift God had already given. Eamon, in my womb. Moving, kicking, and very much alive.

Today, the day after we remember the lives that have gone home, I felt it appropriate to celebrate Eamon. To remember where we were, and rejoice with each breathe Eamon takes here on earth. We were in church a few weeks ago, and a woman came up to visit Eamon at the end of service. She mentioned how she had enjoyed watching me kiss and hold Eamon closely. I blushed, but remarked how I relish any opportunity to sit quietly with my little man. I am thankful for all my moments with him and choose to never take them for granted.

I know I am usually asking for prayer for Eamon, and I will again tomorrow, but for today would you just thank God with us for our prince. May the Lord satisfy Eamon with long life so that he can proclaim what God has done!

Fall Fun

2008-10-15T21:40:00.016-04:00

Day 2 of school for Eamon was put on hold due another cold. Eamon seems to be better so hopefully tomorrow he will attend, and I will bring a charged camera!

So instead of school fun I will share some Fall fun.

Soccer is Fall. Now, this is fun. However, Tracy as the coach - not so fun. Technically, I am an assistant, but the head coach has missed the last two weeks. So needless to say, I have been promoted.

Pumpkins and apple picking! Totally fun. But what do you do with 60 pounds of apples? Especially, when you are not proficient in the kitchen. I'll tell you - decorate. A huge bowl of shiny red apples - the picture of Fall.

This is how Myles made his way through the orchard. "Look, Mom, at this one!" Crunch.

As class mom for Maeve, I was able to chaperon the field trip to a farm.

Maeve and her cousin, Zoe ( there is simply a drop of blood shared between them, but they believe they are as close as sisters) on a hayride.

We were able to milk a cow. Notice which Barclay is touching the "teet", even that word gives me the chills, but serious good times!

And, what Fall season would be complete without Mrs. Mueller's Oktoberfest!

Any excuse for dumplings in gravy.

I just love when the cousins are together. Pumpkin decorating at its best.

Inked

2008-10-07T17:20:00.012-04:00

The view of our mudroom the night before school. Note Eamon's book bag, Superman, how appropriate. Myles gave it to Eamon for his first day!

My gift, some ink, well at least on his shirt. I wanted everyone at the school to know how precious this little student was to his Mama, and I thought I would remind Eamon where his allegiance lies. (Clearly, Myles could benefit from such a shirt. He continues to vacillate between cars and Mommy for second place).

But even better than my feeble attempt to lay claim of Eamon is God's Ink: "See, I have engraved you, sweet Eamon, in the palm of my hand." Christ's body is marked with love and utter awareness of Eamon. So why should I worry.

School went well. Some tweaking needs to be made for Eamon's seating, but his Kid Kart should be here within a week. He enjoyed the attention, only one other child in his class today, so attention our boy did receive! His favorites - hanging out in the tire swing, yes a tire swing. And, rolling and bouncing atop a huge therapy ball. He smiled, laughed and simply charmed his way into their hearts! Thursday is a holiday so we won't see Miss Darlene until Tuesday. And, maybe I will have a charged camera by then. No, I did not learn my charging lesson from vacation. Have patience with me.

This would be the first and only picture from school today.

The battery died just before we walked into the building, perfect timing!

A Smattering of Updates...

2008-10-04T17:20:00.003-04:00

1. Friday, Eamon met with the cardiologist. All is well! His heart is the correct size and looks to be very strong! No need to follow-up any longer, yeah.

2. David met with the cardiologist on Friday, and he seems to be well also. He is having palpitations still, a stress test is ordered, but I think we will just attribute the extra beating to me, isn't love grand!

3. Maeve had her hair trimmed and shaped. Sam was able to blend the layers put in by our future stylist.

4. I have moved up on Myles' list. New order: God, Mama, and then cars. We chatted, people before things, now repeat.

School Days

2008-10-02T19:23:00.012-04:00

Great t-shirt, right! Eamon's godmother, Aunt Lisa, sent it over to celebrate Eamon's start of school. The road to Harvard may be long, but Eamon is ready to take off.

Shortly after Eamon was born, the neurologist said anything is possible, a full scholarship to Harvard wouldn't surprise him, nor us! So the shirt, along with the image of the lion, remind us that God is not finished with our guy. "See, I am about to do something...that will make the ears of everyone who hears it tingle." (1 Samuel 3:11).

School starts Tuesday. The Mister is now the Scholar! Eamon is ready, I'm working on it. The class is only Tues./Thurs. from 12:30 - 2:30. I will shimmy my way in to observe, offer a hand, what some might call spy, the first day.

The Children's Therapy Center is really a remarkable place. We are blessed. I appreciate an atmosphere that says everyone has a voice and is welcome. They, the therapists, teachers, aids, see Eamon, not just wires and equipment. My son is not defined by his exterior, which happens to be darling. "The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart." ( Samuel 16:7) Eamon's heart, his spirit or inner man, is whole and well and clearly recognizable to God, and to all of us who love him.

With school in session, I will have some special time to spend with my 4 year old prince, Myles. And just in time. Driving home this week Myles began to lay out his list of priorities and devotion.
"Mom, God is first, then cars."
"Oh, really Myles, and where does Mommy fall on this list?"
"After the cars."

I have my work cut out for me.

I think Eamon is singing Harvard's school song! Sing on, sweet boy. Anything is possible for those who believe!

The Apple Doesn't Fall Far From The Tree!

2008-09-26T21:59:00.007-04:00

I have been chattin' it up alot about Eamon this week. So on a lighter note, let's talk about the other two children, who are notable as well.

Maeve was invited to an American Girl Doll Birthday Tea. How fun, right! The girls traveled into the city for the festivities. My daughter thought the party included the shopping. So money was sent along with a short, relatively speaking, wish list. To my delight, Maeve wanted a hair salon chair, and the most adorable doll-sized hair accessories for styling. Just as a reminder, I obsessively comb hair. I have a bow collection. I like to thumb through hair style magazines. But I digress.

I thought the good times would be concentrated on Julie, the doll. I had visions of Maeve and I brushing, curling, and twisting away! So imagine my surprise when Myles appeared in the kitchen with a treat cupped in his hand. I won't make you guess - it was a wad of Maeve's hair! No, no Myles did not do the cutting - it was my budding hair dresser, Maeve!

Maeve! She is six and certainly past that experimental stage, right? The hair had been hidden under the ottoman, but to her credit she came clean explaining the scene. I guess the evidence in Myles hand was hard to overcome. All this from my little rock star, who looks in the mirror and claims, "I just don't see a rock star, mom, they have long hair!" So why the cut, sweet girl? She thought a bit of layering might jazz things up a bit, I guess. You know these rock stars!

Anyway, tonight as I was grabbing a book off the bottom shelf I found more of the evidence! She giggled - caught again.

Just look at this stuff. It even makes me want to experiment. Hey, Eamon is looking like he could use a trim!

Snip -Snip!

A Place of His Own

2008-09-24T22:03:00.009-04:00

Eamon continues to get better. I spoke to the cardiologist, we are scheduled for an ultrasound next week. My mind began to wander, I started asking questions, and then decided to stop. So until our appointment, I will not allow my thoughts to get away from me.

Onto something fun.

This past Friday I visited a potential school for Eamon. The Children's Therapy Center, conveniently located in my town, has a special program for children 18 months - 3 who exhibit developmental delays. Several therapists recommended their early enrichment program, but truthfully I could not fathom how Eamon would participate. I kept asking, in as delicate a manner as possible, "What does Eamon need to be doing in order to enroll?" Their reply, "Whatever he is doing is enough." After several phone discussions with the social worker and teacher, I decided to check it out.

I had taken a test drive a few nights before while out with David and the kids. I was surprised by the size of the facility. In my mind it would be a small converted house. As we drove through the parking lot I was overwhelmed with the thought of leaving my little man there, with strangers to care for him. Passing the outdoor play area, I began to well-up. Seeing all handicap swings and adapted equipment was a reality check. Like seeing my life from the outside, and it shocked me. This is where we are, at least for now.

I was a bit anxious for my visit. Ellen, Eamon's other PT, wanted me to be prepared. She said it can be difficult, seeing the center for the first time, their is quite an array of disabilities represented. And for some, it can be disconcerting.

Eamon accompanied me to the center. We met the teacher and were able to observe a class in progress. Eamon sat on my lap to get a better look. He was all smiles watching the children during their circle time. They even included him, using a communication device that you press to say hello - Eamon laughed both times he was helped to activate it!

The center is roomy, bright and new. Beautiful, really. I could not believe the PT and OT areas and sheer variety of equipment available - a dream for any therapist. Many of my apprehensions were put to rest. There are up to six children per class with one teacher and three aids, three nurses on staff (and several that escort individual students), and more options for positioning/seating Eamon with supports than I have ever seen.

The center has a preschool that begins at age 3, as Eamon ages out of Early Intervention, and even primary classes up to age 9 (they are working to extend this).

The staff was warm and inviting. I felt like we belonged. All the adults interacted so naturally with Eamon, and for the first public time there was no elephant in the room. Often, adults are unsure how to react to Eamon with his "bells and whistles". He is either ignored, or thought to be so delicate that no one can even speak in his presence. But not at the center. He was treated like a normal child in the most extraordinary of places.

I was overwhelmed, but in the best possible way. I never dreamed something so wonderful existed for my little man. I have two more classes to observe, trying to select the most fitting class dynamic for Eamon.

The obstacle that remains is the "medically fragile" part. Having Eamon in a school setting has the potential of increased exposure to infection. In reality, the center is painfully precautious because many of their students are medically frail. So where is the balance? Is it fair for Eamon to miss such an opportunity, especially at a time when he is showing a desire for interaction and stimulation?

I am open to advice, but am pretty sure we will move ahead. I can not make Eamon a prisoner of our home, living in fear of the next cold. I want his life to be full, just like any child's, with experiences that enrich.

How great, Eamon with a backpack. Can you just imagine - I'm sure he will be the teacher's pet!

Eamon Update

2008-09-23T22:24:00.005-04:00

Our boy is working his way back. He smiled today. And started laughing during his last nebulizer treatment!

We saw the pulmonologist Monday morning. The chest x-ray was clear, except for a notation of an enlarged heart - a new prayer request. I am in touch with Eamon's cardiologist. Incidentally, Eamon was discharged from his care less than two weeks ago with a bill of good cardiac health.

So, back to the cold at hand - Eamon has had quite a difficult few days but I think the worst was seen last night. We seem to have made a turn, and as I write he is at 3/4 of a liter (down from 2 L) and resting peacefully. A sight for our eyes!

Grandma watched over Eamon this morning so I could go to my bible study. I find it amazing how the Psalm we were focusing on could be so appropriate for Eamon and I, while also speaking to the vast needs represented by the other ladies.

Psalm 121

I lift up my eyes to the hills -
where does my help come from?

My help comes from the Lord,
the maker of heaven and earth (and of Eamon!)

He will not let your foot slip -
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.

The Lord watches over you -
the Lord is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.

The Lord will keep you from all harm -
he will watch over your life;
the Lord will watch over your coming and going
both now and forevermore.

Thank you, Lord, for answering our corporate prayer for Eamon. Thank you that your word is living and active, never returning void but accomplishing much!

And, thank you for praying for Eamon. We are humbled by all the love lavished on our sweet prince.

S.O.S.

2008-09-21T23:53:00.003-04:00

Just tossing out a quick prayer request. Eamon has a cold - low grade temp., increased heart rate, "junkie" sounding with lots of coughing/sneezing. Simple cold, but not for Eamon. Immediately, he begins to experience respiratory distress. We have spoken to his Dr and plan to muscle through the night and be seen in the morning.

We have increased his O2 quite a bit (normally .25 l/currently 1.5 - 2 l), giving him nebulizer treatments along with plenty of chest PT. He is tired from battling through the day and is resting at the moment.

I am not prone to panic with Eamon, but it is unnerving. He is just not comfortable, and we need to know when it is an appropriate call to go to the ER.

Prayer works - we have seen evidence countless times!
Thank you for lovin' our boy with us,
Tracy XO

Mary's Kids

2008-09-19T23:17:00.007-04:00

Eamon has been blessed with several great therapists. These women really love the little prince and invest a lot of time on his behalf. Eamon's schedule is quite full with physical, occupational, vision and speech therapies. Most are in our home through Early Intervention. But, on Fridays I take him to see Miss Lisa for PT.

We first met Lisa during our stint in the NICU. She visited Eamon and I during his second week of life. I immediately liked her. Her words were kind and helpful. She spoke and interacted so beautifully with my fragile boy.

We continued with therapy after Eamon's discharge and were again working with Lisa. I just marveled at how intuitive she was with Eamon, and how empathetic she seemed toward me. There was something different about her, but I could not put my finger on what.

A problem with our insurance caused an outstanding balance at the center. At the end of our session, Lisa handed me a brochure and explained that Mary's Fund would handle the bill, I was not to worry. I was overwhelmed, especially when I realized Mary was Lisa's daughter. She had passed away, and a fund had been set up to honor her memory.

Mary Therese Rose Crilly was born with Joubert Syndrome, a rare genetic disorder that left her profoundly disabled. Mary was full of love, and inspired all who knew her with her courage and joy. Mary died just a few weeks before her fifth birthday. Mary's family wanted other special needs children who are treated out of The Valley Hospital Center for Child Development to enjoy the simple joys of childhood. The fund pays for various therapies, programs, activities, and needed equipment.

Eamon has been on the receiving end. Our new and improved insurance is not accepted at the center. I was devastated. Lisa phoned and said to come anyway-Mary's Fund would cover it. There are adaptive toys on order along with Eamon's upcoming Kid Kart, a customized seating system just for the little mister. Eamon even plays with one of Mary's favorite toys, a donation from Lisa - and priceless to me.

We never met Mary, yet her legacy touches Eamon and I daily. Mary's Fund is having their 6th Annual Fund Dinner on October 19th at the Sheraton Crossroads. To my surprise, Eamon and our family are invited as special guests. How fun for us to follow along with Eamon, one of Mary's very special children. I can't wait to dress the prince up for his big night.

I feel compelled to spread the word about Mary's Fund. It would be great if you could join us at the dinner. There will be clowns juggling, great food, a jazz band, and dancing. The Big Top Bop 2 is from 4-8pm and should be lots of fun for the kids! Even if you can't, donations can be made directly to the fund. Rarely do I fund raise, but for Mary's kids it is worth moving out of my comfort zone.

It will be my privilege to escort Eamon to his first ball. I just hope the little prince saves a dance for his mama!

Gift List continued...

121. Mary and the Crilly Family - examples of lives touched by the living God.

122. The mister, Eamon, whose life takes me on all sorts of interesting adventures!

Being Known

2008-09-17T22:07:00.008-04:00

I just love this image. It is how we, all those who love and believe for Eamon, see him.

I had a follow-up appointment with the geneticist this past week. Eamon has had many tests over the course of the year, all offering little hope of a diagnosis. During Eamon's surgery in June, they took a sample of his muscle with hopes of information. Information as to where we are, and where we might be going. A diagnosis offers a prognosis. The Dr. said the tests offered some good news. Eamon does not have an array of degenerative conditions - thank you Lord! But, a name still eludes them. All these tests and nothing, still.

We have decided to discontinue the search effort. Even this renowned geneticist believes it is futile. Here a brilliant Dr, gifted in unearthing rare genetic information does not see the profit in more testing. So where does that leave Eamon.

I have thought about this, over and over. And the answer is right where we began. In an unknown place, charting new waters, living and learning as we go, all the while fixing our eyes on the one who does know.

Eamon is known. He has a name - child of God, and therefore is a true prince. Eamon is fearfully and wonderfully made. God created his inmost being and knit Eamon together in my womb. All of Eamon's days were ordained before one of them came to be.

Eamon is a treasure, so rare that even the best and brightest can not identify him.

So here we are, with one less Dr. to see, ready for all that God has prepared in advance for Eamon's precious life.

I love that my Uncle Pat always asks, "What's the Good News?" So here goes:

Eamon is laughing, consistently.
Eamon is responding and reacting to all sorts of stimulation - people, toys, music, whatever - and it is pure satisfaction for the recipient.
Social dynamics are emerging - where Eamon is learning the give and take of conversation.
Eamon is vocalizing, trying out different vowel and consonant sounds.
He is lifting his arms and legs while stretching and reaching.
He is growing stronger, slowly -but we'll take it!
And, even though Eamon does not fit into any specific "category" he fits perfectly here with us!

We are praying, always for healing, but especially for strength today. His O2 requirement has increased. I do well with visuals. So, if you are able to pray with us for our sweet little man, please see him like that strong, fearless lion at the top of the post. I can hardly wait to hear his roar!

Just for Fun!

2008-09-12T09:00:00.002-04:00

This is a first. My friend Lisa at Superhero Mom has tagged me. This is how the game works. I need to disclose 6 quirky facts about me. I have an audience at the moment, and they laughed out loud. Apparently, this should not be too hard.

After, the information is disseminated I will need to tag 6 others. Unfortunately, I am new to the blog world and kind of keep to myself in bloggyland. So I will only tag Amy @ Tales from the Higby Gang.

My Top Six Quirky Facts:

1. Dancing with the Stars has caused me to rethink my calling in life. If only my mom had encouraged my great love of dance. So truth be known I dance, albeit around my living room with Maeve, Myles, and Eamon as my audience and partners.

2. I enjoy products for the face. I am really excited about my new make-up. Sometimes, I am such a girl! I needed to make some changes. So for my bday, in March, I decided to shop for a new line. Well, it was August when I finally made the purchase. Not because I was busy researching. As a matter of fact, Bare Escentuals - the leader in mineral make-up, was the first counter I stopped at. I was quickly sold. Make-up you can wear to bed. I won't, but knowing I can makes me smile! I bought everything, and love it! I have a kabuki brush to apply my foundation, I just like saying that word - Kabuki, Kabuki, Kabuki! Okay, I will stop now.

3. I really, really dislike feet! I would even consider the word hate here, but I tell my children to use that powerful word with discretion. OK, I hate feet. Not all feet, feet under the age of ten are good, real good actually, but that's another quirk. I love my husband from the top of his head to, well... his ankles.

4. I can be persuaded, fairly easily, to do something that sounds (at least on the onset) to be fun. My sister-in-law, Erica, once talked me into being a Jersey Jammer. I was in college and it was to raise money for a cause, what cause I can't remember. We wore cowgirl outfits and danced to a choreographed number during the half-time show at a Giants' game. We, Erica and I, pulled our hats on tightly as directed. Well, some fashion conscious jammers put vanity over hat security. In the middle of our routine, the hats went flying. The vain jammers didn't know what to do - get the hat, an integral prop in the performance; or continue on valiantly pretending to still be donning one. Needless to say, we were booed by the fans. It is only now, enough time having passed, that we can talk about it!

5. I comb hair - somewhat obsessively. I usually have a brush on my person. I like for M,M,& E to be well coiffed at all times. I have quite a collection of bows for Maeve's hair. I guess you could say I like order - in my home, car, and on our heads.

6. I have several food related issues. I love dessert foods, but never before I eat breakfast. I can not talk about the origins of meat, especially while I'm eating. And, I can not, will not eat chicken on a bone - Sam I am!

I thought maybe I'd here from you.
So, here goes. What are some of your quirky fun facts?

Tag, your it!

First Day!

2008-09-08T21:57:00.015-04:00

What is it about the first day of school! Such excitement for the kids ...and moms. It was technically Maeve's 5th day, we were enjoying the last bit of summer during her real 1st day, but whose counting.

Maeve was surprisingly anxious, reminding me that it was not everyone else's first day (note to self about vacation planning for next year) until she saw her friends.

Myles was ready from wake-up. He knows his teacher, the classroom, and his buddies. He found Ty when we were dropping Maeve and the two rejoiced like long-lost brothers!

Eamon was our side-kick all day - we even had his and her gym classes this afternoon. Today felt unusually normal. I readied all my children, I dropped the older two at school, picked up Myles, then back again to pick-up Maeve. All very normal mom behaviour, but kind of new to us. Last year, during M&M's first week Eamon was hospitalized for several weeks. I was not able to be as visible as I wanted at school because Eamon just had a tough year. However, Eamon is in a better place today - thank you Jesus! Today Eamon was simply the little brother, the third child being dragged around after the others, laughing away - and it felt so good!

A normal day with my three children - definitely a gift and number 121 on my list!

It's a Wrap!

2008-09-06T14:51:00.028-04:00

And, we are back! We came home early to avoid the storm. I'm so glad to have a little extra time to get ready for M & M's 1st day of school! It was great to sleep in my bed last night. It is always good to be home.

Here are some final pictures of vacation.

Eamon relaxing under a tree.

In cognito...

Eamon singing along to Jimmy Buffet, playing in the background, at the poolside party

Really, letting it rip now.

Sunglasses for the performance

Just plain-old cuteness.

Maeve enjoying poolside games and dancing

Limbo time!

Tidal pool fun

Lookin' to catch a wave on our last day

My little man

My big man

The prince, fast asleep, on the beach.

Myles building his castle, but his true joy was knocking it down.

Maeve and Myles sittin' in a southern tree!

One of our last dips. Our final evening we did a pool crawl. Two hours - five pools, serious fun!

The sky as we ate dinner our last night.

I am so grateful for time away and memories made! It is easier to come home when there is something exciting ahead. Monday starts school and fall activities so there is no time for lamenting the end of summer! But often, in my mind I go to Carolina...I hear it is beautiful there today!

Gift List continued...

118. Our home - safety from the storm.

119. Our reunion with Grandma. The children were busting to see her.

120. A surprise visit from Uncle Joe. Tears in his eyes as he watched Eamon laughing and eating-up all the attention. Real men do cry!