Sahalie is my niece. Every year I miss her birthday. I have lots of excuses. Her birthday is the first of all the cousins and I am not prepared. Her birthday is not in our family calendar; I do not get a reminder. Maybe it is because her birthday is near the end of the swim team season and my children are preparing for the league championships. Our extra hours are filled with swim lessons and private sessions with their coach. But I know these are not the reasons. The reason is much more personal. Emlen, my son, was diagnosed with cystic fibrosis (CF) on the day Salahie was born.
We were having a good winter. It had snowed a bit, only a few feet. Daily temperatures hovered around freezing. The pond behind our house had frozen with thick black ice, perfect for skating. From our kitchen window, perched up on a hill with several hundred yards of woods separating us from the local pond, we caught glimpses of the neighborhood skaters. Specks of color flew through the leafless trees.
We planned to skate that winter. A path from our backdoor led down through the forest to a small cove. There the water was shielded from winds and had good afternoon sun. The trunk of a fallen tree bridged the woods’ edge and the ice, a perfectly placed bench just for us. It was a seat to lace up skates, a place to drink thermoses full of hot chocolate. We shoveled the snow out of the way to make a rink.
Emlen’s older brother had his first pair of skates. Pushing an old chair, he was beginning to master gliding. Emlen was enjoying sliding around in his snow boots. My husband had bought new skates. I had ordered mine. Comfy and insulated, they were a hybrid of my old stiff figure skates and hockey skates.
My husband and I both grew up skating on ponds. I also had my fair share of figure skating lessons. Having mastered the basics, I could carve in the ice the classic figure eight to practice crossovers endlessly. I could do a few simple turns and some small jumps. I planned to head down to the ice every afternoon, to relearn what I had known as a child. We were looking forward to sharing our experiences with Emlen and his brother. Emlen’s health was OK, much better than he had been in the fall. His new pulmonologist had put him on constant antibiotics to treat perpetual ear and sinus infections. She was aggressive and it was working.
One Saturday our children’s pediatrician phoned to tell us that he had the results of Emlen’s genetic tests. I had forgotten that Emlen’s pulmonologist had ordered them before the holidays. I braced myself. A phone call on a weekend would not be good news. The tests revealed that Emlen had two CF mutations, one from my husband and one from me. More exploration needed to be done. Appointments were scheduled to meet with specialists and a sweat test was arranged.
If you are a child with severe asthma or lung disease sweat tests are commonly ordered. Rubber bands secure small metal strips to your wrists while a low voltage electric current is applied. Sweat collects on a gauze pad. Chloride levels are measured. It seems basic, but it is the gold standard for determining whether or not you have CF. This would be Emlen’s second sweat test; the results of the first had been inconclusive.
We continued to work on our skating rink. The pond’s skating community evolves organically. Neighbors pitch in to clear the snow. Shoveled paths connect the rinks; each is unique. That year one offered a bonfire; another sported hockey goals, while a third had holes drilled for ice fishing. The activity was distracting. Friends were supportive.
Emlen failed his second sweat test. You know the results are bad when three doctors and two nurses pile into the exam room to explain the results. I cried before they even spoke. Our lives changed completely. Hospital stays were scheduled. Cleanouts were ordered. Prescriptions were written and filled. Physical therapists were assigned to us. Medical equipment was delivered.
Most of that day was a blur, although I remember one conversation well. A nurse stressed the importance of talking with our family. Since CF is a genetic disease, any brother, sister or cousin that wanted to have a child would need to know, would need to be tested. I put together a mental list of my relatives. My brother had one daughter. He was not having another. My cousins were far too young. My husband’s older sister was adamant about not being a parent. His younger sister had a daughter. She was pregnant with a second. At that moment she was in labor, giving birth to Sahalie.
Life has settled now. It is what we refer to as “the new normal”. Changes come. You adapt and accept them. Emlen is healthy and happy. Every once in a while we have to deal with a questionable lung x-ray and another round of antibiotics. We plunge in. It is what we do.
We never really got back to the pond. It rained a lot the next winter and that smooth black ice, so good for skating, never formed. I never did pick up my skates. I think of them occasionally when I see the local skaters flying through the leafless trees. I remember I missed Sahalie’s birthday. The timing is terrible and I apologize. As a good friend of mine said, “You have to grieve for the life you thought you were going to have. Only then you can accept the life you have been given.” I feel that I am getting closer. Maybe next year I will remember Sahalie’s birthday. It will be a day to celebrate.