When I first reached out and contacted those two other families, nineteen years ago, I had no idea how big our little family group would grow to be. After attending the Retreat in Montauk this past weekend I can only say, “Wow!” Share and Care kind of said it all at first because we had children with such a unique disorder it was so great to speak or write to someone who had been “there.” No matter how much love and support we got from friends and family there were still so many unanswered questions….
Our family weekend in New Hampshire twelve years ago with the Wilkins family and the Wilbur family when we got our three CS children together was the greatest event in my life up until this past weekend. Although Scott was not physically with us this time, he was very much present in spirit. In fact my eight year old grandson, Kevin, remarked to my husband and myself at dinner on Sunday night, “I’m glad I came this weekend. Even though I had never met Scott, I feel like I was with him this weekend.”
I’m so glad that the Good Lord brought us all together under Teresa’s direction and that I had an opportunity to meet you all. Being with you and your special little ones was an uplifting, spiritual and very emotional happening for me and my family. Next year I hope to bring my three daughters and perhaps my oldest son. I know they would bring away something special, as I did.
I wanted so much to be able to come off as being positive. Seeing so many of you with not one but two CS children, left me with little to say…. A bird singing outside my window woke me at 4 am Sunday (me who has slept through hurricanes and some other natural disasters). I had actually been dreaming about what I was going to say during the memorial service. The words to the Serenity Prayer came to me (a coincidence that it was also in the little book from Rose and Bob). When I picked up a book that I had brought along for ideas, it opened (by itself) to the chapter on ACCEPT…. Somehow I feel I was only the deliverer of the message I gave.
To those of you who still have your children, hang in there. There is genetic research being done all over the world. Even though the focus is not currently on Cockayne Syndrome, we may benefit from the offshoot of another discovery. What we have to do is make people aware of who and where we are. I intend to get pictures and letters out to every human interest media type as soon as my photos are developed. I’m going to renew my effort to get my book published as people need to understand the very human side to this heartache disorder. I thank you for the hugs and kisses that I got from so many of your children. As I said, they are truly the closest things to Angels that we will meet in this life. When I held Brittany on Sunday morning I felt as though Scott were in my arms again. The way she put her arm around my neck and snuggled in to my cheek while she stroked the other side of my face and hair, for a short time I was in heaven…. From the time we arrived Saturday evening we were the recipients of so many hugs; these children are examples of what pure love is all about.
For those of you who grieve for your little one, I hope Aftercare will carry on what Share and Care promoted. It’s important to share what you’re feeling. Scott will be gone nine years October 5th and I still have the need to talk about him, share the funny stories and cry for my loss. It’s so great that we have each other and I hope that we’ll manage to pull through by helping each other out.
I feel totally re-committed to Share and Care after last weekend and know that you are all very much in my heart and on my mind. I’m going to keep our group in my prayers and on my lips and show and tell everyone I talk to about it. Hopefully 2000 will be the year of the breakthrough. Till then please keep in touch….I’ll be waiting to hear from you.
Pat Cahill
(Founder of Share and Care)