After Peter’s birth, I began writing daily updates about his progress, the staff, our concerns, and his many visitors. It was started as a way to get information out to friends and family who wanted to stay informed. Basically it was a “blog” before blogs were even created. I kept up with “Pete’s Diary” during his entire 3 ½ month stay in NICU and also periodically after his discharge.
Fast forward ten years, and Peter is now reading the diary himself. He has been getting it out almost every day this summer and asks questions about things that I wrote. I love that he has it to read and that he is especially interested in understanding more about his complicated first months of life. For me, however, it’s difficult to revisit that time. I literally closed that book a long time ago, but how can I possibly explain that to him?
In an effort to help Peter (and myself), I have decided to read through the journal with him so that we can discuss it. Although he remains a happy and typical ten-year old boy on the surface, I see that he is not as lighthearted anymore. He possesses a deep sadness that I can’t possibly understand. Earlier this week Peter was crying, and he told me that he wished he could talk to God and ask why he was born with a craniofacial condition. My reply to him was that I wished he could too because I would also like the answer to that question. I told him how proud his Dad and I are of him and that we love him deeply and would trade places with him if we could. I also told him that although he has been given a lot to deal with in life, there are always people who have more. In our many visits to the hospital, we have seen kids with cancer, kids in wheelchairs, kids who are badly burned, and kids who are mentally impaired. I don’t fault Peter for the way he is feeling, and I will always be supportive and comforting when he needs a shoulder to cry on. I don’t, however, want him to drown in a puddle of self pity.
I’ve heard the many sayings that are repeated over and over to parents like me… “Everything happens for a reason,” “God doesn’t give you more than you can handle,” and “God gives special children to special parents.” I abandoned those beliefs long ago. If that is what gives you strength, I am not one to argue about it. As for me, the following has stuck with me through the years and helped me cope…
“Can you accept the idea that some things happen for no reason?
That there is randomness in the universe?”
This was written by Harold S. Kushner who is a Rabbi and was a parent of a child who died from a complicated disease. He is also the author of many books, including one entitled “When Bad Things Happen to Good People.” I’m sure Kushner’s quote is one that I will someday share and discuss with Peter. I know that eventually though, Peter will have to form his own opinion of why life dealt him such a difficult hand. As his Mom, I really look forward to the day he enlightens me with it.