Will he have no birthdays?
Will his brain always be broken?
Will he be sick his whole life?
Will he die young?
Can the doctor cut him open and fix him? Can they take out the extra chromosome?
Why don’t we have the technology to do that?
Last night, after dinner, we went for a walk as a family. I try to stress to my children how important it is to take care of your body, and I always explain that exercise is one way that we do that. I haven’t always taken care of my body as I should, and it is only in the last 4-5 years that I’ve realized this. Watching the people I love grow old and suffer from a myriad of somewhat self-inflicted illnesses has made me realize just how much I should value the health I currently have. But I digress.
As we were leaving the house, Evaline asked, “why do we have to go for a walk, Mommy?” I explained that the exercise is good for me and for the baby. I then explained that I haven’t been exercising as much lately because I have been sad. Evaline asked why I was sad, and I started to explain that her baby brother was sick. Her response was typical Evaline, “why?”
I explained that our baby had extra chromosomes in his cells. Instead of 2, he had 3. I explained that this meant that his body didn’t develop properly. She asked if he would be sick when he was born, and I said that yes, he would be sick, and he would always be sick for the rest of his life. II explained that doctors cannot fix what is wrong with him; they can only make him comfortable. She asked me if he would die young, and I said that yes, he would not have a life as long as other kids.
She asked me if the doctor couldn’t cut him open and take out the extra chromosome. Jim explained that there was an extra chromosome in all of the billions of cells in his body, and we couldn’t fix them all, we don’t have the technology. She then wanted (of course) to know why we didn’t have the technology. We told her that we were going to do everything to make sure that James was as healthy and happy as possible.
She seemed to mull this over, and we didn’t talk much more about it. Then came bedtime. I was getting out Hazel’s pajamas, and she came into the room and asked, “will we have no baby brother? I love him so much. Will he never have a birthday?” She started to cry then. I had to choke back tears before I could answer the question. I explained that he wouldn’t have as many birthdays, but he would have a birthday the day he was born, and we would make sure and get him a cake. This made her smile (cake always makes her smile).
She asked me if his brain would always be broken. I am not sure from where this question arose, as I didn’t even mention the mental handicap aspect of this to her. I guess they listen more than we realize sometimes, and Jim and I haven’t been particularly careful of conversations.
It was a hard talk to have, and I anticipate many questions in the days to come. We are lucky in that the pediatric advanced care unit has a group called Child Life that will work with children and help them come to grips with these kinds of scenarios.
Still, my heart cracked open just a little bit more when she asked me if he wouldn’t have any birthdays. She so perfectly voiced my fear that I was taken aback anew by the astuteness of an almost 5 year old.