Saturday, December 12, 2009


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"!

Sunday, December 6, 2009

Season for Gratitude...

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.

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!

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.

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!

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

Peppermint bark, cookies, and seasonal flavors at Starbucks!

Monday, October 19, 2009

Mary's Legacy

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 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.

Friday, September 25, 2009

It's a Wrap...

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 grown up ...tear, tear.

Sunday, August 30, 2009

Postcard - Day 7

Catch of the Day...Myles!
Our final full day 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!

Friday, August 28, 2009

Postcard - Day 5 & 6

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 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!

Thursday, August 27, 2009

Postcard - Day 4

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.


After-dinner movie...

We seem to get sillier with age!

Nice, Irish tans...I know!