When my husband and I were thinking about having a second child, there were many things we had to consider. The hardest part was deciding ‘how’ to have a child… now, no need to send me to Dr Ruth, we figured it out the first time. Unfortunately, knowing that we are both carriers for cystic fibrosis changed the playing field. For every pregnancy, there’s a 25% chance our child will be born with cystic fibrosis. To us, this seemed like a big risk- not one we wanted to take. We decided to go the route of in vitro fertilization. The experts then take one cell from each embryo and test it for cystic fibrosis, using what they call ‘pre-implantation genetic diagnosis,’ or PGD. To say that this technology blows my mind is an understatement. After figuring out the ‘how,’ we were ecstatic to welcome the ‘who,’ Simon, into our family 9 months later.
During the pregnancy I wondered if Sophia would ask why her little brother didn’t have to take enzymes or do ‘zoomies’ (our name for chest therapy). I hoped that she wouldn’t feel singled out. I didn’t want her to feel burdened by all the extra therapy she had to do. As the days and months passed I realized how wrong I was. Sophia didn’t feel burdened by her therapy. It was our time to cuddle and bond. She didn’t feel singled out. She felt loved. It was Simon who was struggling. As proficient as he has become at playing by himself, he still feels left out. Sometimes he’ll look at Sophia and I and start crying. He’ll try to pull himself up onto the couch to be with us. Sophia has become okay with having her little brother share in the cuddling part of ‘zoomies.’ I explained to her that Simon needs snuggle time too. Sophia understood.
Life always throws curve-balls, yet I was still caught off guard. I was prepared to explain to Sophia why Simon was ‘lucky’ enough not to need chest therapy. Instead I am explaining to her why he wishes he did. I know that their relationship will always be dynamic. I will try to stop building expectations, as they will probably keep tumbling down. Thank you Sophia and Simon, for keeping me on my toes, and teaching me something new every day!