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 began...one 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.
