UNC Children's Hospital began a Pediatric Palliative Care program as of January 1, 2012. Last year, Jim and I were invited to get involved in the planning process as parents whose child was treated at UNC. Two thousand dollars, money raised by the Bike Ride for Sam, was granted to the new Pediatric Palliative Care program. We learned yesterday that Samuel inspired a coping cart, designed to support and used by patients and parents as part of the palliative care concept. Needless to say we were honored by this. To quote an excerpt from the email: "Because this is all about Samuel, we would like to go ahead with the “Coping Cart” for patients and families that the committee has been anxious to develop.
The “Cart” is a mobile cart that will be available to any staff on any of the units 24/7. Child Life, Pastoral Care and Nursing have purchased a supply of workbooks, exercises and Legacy materials that will be used for direct care to patients and families, including extended family members. All the materials are designed to help individuals maximize their strengths when dealing with difficult palliative situations. And, of course the Legacy materials are meant to provide some tangible remembrance for the family to keep always. It will now be possible for Child Life to develop CDs with parents here in the hospital. There has even been a recent need in the Women’s Hospital for a mother to leave her children a CD. The impact can be significant."
Recognizing this may be an odd time, I need to make a difficult announcement. After 5 consecutive years, this year a Bike Ride for Sam is not being planned. Planning the bike ride has been very difficult for me. In order to coordinate many of the logistics and arrange sponsors, I have to distance myself from what is actually happening--that we are doing this because my little boy is deceased. It has been a stressful experience instead of an experience that I can use for healing. This explanation may not be understandable and that's okay. I'm not sure I understand it. I just know it is difficult and each year I have faced the bike ride with more dread than excitement. This may surprise some of you.
I hope that next year, 2013, I'll be able to re-initiate the bike ride and we will have the 6th Bike Ride for Sam. In the meantime, my deepest and sincerest gratitude to all those who have played a vital role in the first five years. The support and generosity of so many provided a lot of comfort to this mother's grieving heart.
