The Latest Fashion!

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

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

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

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

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!