Stones of Remembrance

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

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

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...

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

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!

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!