The Apple Doesn't Fall Far From The Tree!

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

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

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.

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

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

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!

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!

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!

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!