Our Worth

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.

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!

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!