What made you want to get involved with Hand to Hold?
After I lost my son, James, the compassion Kelli Kelley showed my husband Matthew and me, as well as the parent mentor I was partnered with, made us want other parents to have the same resources and opportunities available to them. We spent a very long 6 months and 11 days in the NICU, and dealing with all of the issues that comes along with that makes having a parent with similar circumstances to talk to a nice safety net.
What would you like to share with other bereaved families?
I would like other parents to remember that they are not alone in their grief. Their families will never understand what they are going through, so Hand to Hold is a valuable resource to turn to. I hope that they do not feel alone and know that they will always have someone to help them in any way that they might need.
What would you tell parents about being in the NICU and facing the possibility of losing
a child? What do you wish someone had told you?
Make every day count because you never know when it will be the last. Make sure your baby knows that he is loved and that he is special just the way that he was born. Celebrate every milestone and achievement – it’s the small things that matter the most (like bath time for Matthew and me). A very special person dear to Matthew and me told us that some people need 60 or 70 years to achieve what they were put here by God to do, others may only need 6 months to achieve their purpose in life.
The only thing I wish I had been told sooner was that my son was going to be in the NICU for a while and that I may want to save some of my maternity leave. He was sick for such a long time that I was always running low on time off. I wish the doctors had been honest about that so that I could have just gone back to work.
What do you think bereaved families can do to support each other?
Remember that everyone loses a child differently and that we are all affected differently, but all babies are special no matter how short a time they may have been here.
We know that you have a new daughter. A lot of families worry about getting pregnant again and having another child after a loss. What would you tell them?
Not to worry. Babies are something precious to be enjoyed. No one can tell you when you are ready for another child. Only you and your partner can decide that. You also both have to be ready to accept a new child. Matthew and I decided to have more children only a few months after James had passed away. He was my first child and I never was able to take him home. After he was gone I missed caring for him but I knew he was in a better place and he was no longer hurting. We didn’t allow our family and friends any part of our decision because we felt like it was none of their business. There are some people who think you will never be ready. Matthew and I waited until after my great niece was born to see how we would react to her and the fact that she was born so perfect and healthy. When I was able to hold her for the first time and see the “normal” process of birth, we felt that we were ready together to have another baby. I would not trade my Kathryn for anything and she was not a replacement for James. Make sure you are not trying to replace one baby with another. As soon as you feel ready and your partner is ready, then have another child and enjoy every moment of it.
I also would like to share with families that Matthew and I chose not to hide James from Kathryn. His pictures are up in our house and he is still very much a part of our family. When we go to Mass we teach Kathryn to ask James for our prayers. Part of her middle name (as well as any siblings she may have) is James so that she will always know that her big brother is watching out for her and protecting her. We also have celebrated his birthday every year to keep him close to our hearts.