We only ever wanted to have two children. That was always the plan. A) I had no interest in being outnumbered by my kids and B) while growing a child in your body is an unreal experience, the gas, aches, nausea, swelling and all the rest of it is no joke. When Adelaide was born seemingly healthy, I thanked my uterus for its service and mentally closed up shop. When Jackson was a baby I even questioned if one child could be enough for us but as he grew older it became evident that this child needed to be a big brother. Jackson has always been drawn to babies or any child younger than him: he loves to play with them, care for them, hold them, and is rather persistent in doing so. It is these very qualities that make him such an amazing big brother to Adelaide but they also simultaneously break my heart.

I’ve spoken before about Jackson and Adelaide’s relationship and what an amazing human he is becoming because he has her in his life. But what happens when she is no longer in his life anymore. The hard truth is that Adelaide is medically fragile and we have to be grateful for everyday we have with her. The mystery around her true diagnosis and whether it is neurodegenerative only adds to these fears. Our travels this past week to New York City, just the three of us, put all these thoughts at the very forefront of my mind. It felt so wrong to be traveling without her and honestly, up until a week before I still delusionally thought she could come with us. Adelaide was shrieking and writhing when our nurse gently asked me if I had considered a plan B for our trip. My initial reaction was irrational, emotional and defensive: Adelaide was coming with, we were going as a family… and then her question settled in the air and I realized that no matter how badly I wanted Adelaide to join us, it would be selfish to do so. At best, she got no pleasure or joy out of joining us and at worst she would be incredibly uncomfortable or require hospitilization away from her regular doctors. Miss A was unquestionably better off at home in the care of her army.

Visit from big brother at the hospital, June 2019

Leaving her kicked my anxiety into high gear and I practiced deep breathing the entire car ride to the airport. Once on the plane, I relaxed a bit until we were waiting in an NYC cab line at the airport and the attendant asked us how many people we were traveling with. Miguel reflexively answered, “four”, then quickly corrected to three. My heart broke and I couldn’t help but wonder if this was a small dose of what it will feel like when Adelaide’s no longer with us. These moments aside, our trip was amazing: visiting friends, raising money for CURE, seeing a show and sight-seeing with Jackson. Also worth noting that it was SIGNIFICANTLY easier to do all of these things without Adelaide but we felt her absence constantly.

Walking down 47th street hand in hand with Jackson, I found myself imagining our family as just the three of us. This was certainly not the first time my brain had wandered to this dark post-Adelaide corner. What would life look like to be the mother of one living child? Which led to: what would Jackson’s life look like with no living siblings? Which was closely followed by: do we bring another child into our family? And oh, what a complicated question that is. I couldn’t even begin to total up the number of hours Miguel and I have spent debating this answer. My rational brain has been put to the test trying to answer these questions and what I have realized is that I don’t need another healthy child to be happy and fulfilled but I can’t imagine Jackson not having a sibling. His baby obsession is not helpful here. While in New York, we visited a friend of mine who just had a baby a month ago. Within 5 minutes of being in their apartment he asked if he could hold the baby. The only reason he let the baby go was because he needed to use the bathroom but then after he had done so, and thoroughly washed his hands, he immediately asked if he could have the baby back again. I know many grown adults that are not nearly as comfortable with infants but here was my son enraptured with this little being the same way he is with a Minecraft YouTube video.

With that image carved in my memory, I believe if bringing another child into our family was remotely easy we would have done it by now. Unfortunately, since Adelaide remains undiagnosed, conceiving traditionally is very risky. According to a genetic counselor we spoke to, it is likely that our chances of having another baby with Adelaide’s complications is one in four. No, thank you. If we knew what gene was affected then we could consider IVF but until one can be isolated thats not an option either. Which brings us to adoption. I began asking friends who had adopted about their experiences and Miguel even started researching agencies. Then we received word that Hamilton would be closing in Chicago. We have no idea where we will be living this time next year or if Miguel will have to be away from us for several months for a job. Those factors seriously complicate any adoption application. Also, I’m strong but not strong enough to single parent three children, one of which has severe medical complications and another that is brand new to our family. As time moves on and Jackson, (without my permission), keeps getting older, the realization has begun to settle in that our family is likely complete as it is. This is certainly not the family Miguel and I envisioned during the early days of our marriage in Astoria, Queens, but we have to remain grateful for the family that we have and the memories we’re making together. Also, if this experience has taught me anything its that, for better or worse, you never know what surprise is waiting for you around the corner…