The unexpected answer

Our trip to NYC was a whirlwind trip. We managed to take the scenic route to our friends' home, which included seeing the Statue of Liberty and Laguardia airport, all while on route to downtown Manhattan's Spanish Harlem. I'm still not sure how that happened, but am grateful we didn't end up in DC. It was a clear mercy to be able to spend time with our friends, who thoughtfully gave such care and kindness which quelled my anxiety about Mia's appointment.

For me, the hardest part of the past 6 months has been the unknown. For me, it was not knowing the underlying syndrome or diagnosis. For me, it has been not knowing the prognosis. For me. As I walked into the appointment for Mia with Dr H, I was expecting an answer. My answer. I expected confirmation of what my mama gut was telling me. My gut. What I heard changed my perspective, and it has been something I have been thinking and processing for the past several days. The underlying syndrome is not important. We do not know if the one positive result for Russell Silver Syndrome and the one negative result for Russell Silver Syndrome is accurate, and what it means. Perhaps she has hypomethylation in some cells, but not others. Mia received treatment with whole blood products while she lived in China, which invariably changes the reliability of any genetic testing. Knowing if she has Russell Silver Syndrome, a mosaic form of Russell Silver Syndrome, or an undetermined syndrome will likely be impossible. I heard the words "it is not important". For HER. For Mia. It does not matter if she has Russell Silver, or any other syndrome. What matters is that she is an almost 8 year old child who has developmental disabilities, has special needs, has beta thalassemia major, and is in growth failure. This was my answer. Not what I expected, that is for sure. I walked in not knowing that I had made this somehow about me, and walked away with a clearer perspective.

Although the diagnosis is unclear, the treatment at this time is clear. Mia needs to undergo testing to possibly begin growth hormones. Dr H said, with growth hormones, her body will likely grow. She will begin to eat more because her body needs the calories to grow. Dr H explained that right now Mia does not feel very hungry because she is not growing. It is NOT that she is not growing because she is not eating or taking in enough calories. With growth comes change. Her bones will grow, her muscles will grow, and her brain will grow. This is what it is about. It's about Mia, not me. It's about Mia receiving the best possible treatment given her very, very complicated background and medical circumstances. And it's about Mia's potential to become the best person she can be. Thank you Dr H, for helping me see this clearly, and for reminding me to keep my eyes on what is most important. My sweet Mia.