After walking the SATB2 road with Chelsea for 7 years, our family was blessed with another sweet baby, Lily, who was also diagnosed with SATB2 Associated Syndrome! My husband said that we must have done such a good job with Chelsea that we got the chance for an encore performance.
With Chelsea, our 7 year old, we had to search for years to find her diagnosis, sorting through misdiagnosis after misdiagnosis. When she finally had documented results from a genetic test, it was a huge relief to our family to have finally found answers.
When Lily was born, I had the nurses pull cord blood to test the SATB2 gene, just so I would have some reassurance that I would have a “normal” baby. When the results came back positive a few weeks later, my emotional reaction was a polar opposite from Chelsea’s diagnosis. For the two days after Lily’s diagnosis, I felt a crushing, devastating weight unlike anything I had ever experienced before.
But after some intense emotional grieving, my husband and I found some wonderful benefits to having 2 sweet SATB2 daughters. We had already walked this walk before, and though we still have a long way to go, we already knew a lot of what to do now: the best therapy methods, which tests were useful, and what to not waste our time on.
Another thing we thought of- we had always worried that Chelsea would be lonely, and feel left behind, after her brother left for college, and now, she will always have a best friend to be with always. Someone who will never tire of playing tea party and dressing up in princess dresses together.
But more than anything else, we know how incredible Chelsea is, and that Lily will be just as amazing! Receiving a SATB2 diagnosis, whether your child is 2 months old or 20 years old, isn’t a shameful or ugly thing. It is a different road, but not a bad one! These kids are kind and loving and silly, and the magic of childhood isn’t limited to just a few short years.
Just like for any parent, there are difficult days. Days when you feel the weight of the world and when it seems like the school, insurance, and the government are all working against you, and you are the only one on your child’s side. Times when you are exhausted, overwhelmed, and almost defeated.
But then when milestones are achieved, the pride you feel for your child’s accomplishments are indescribable. The first word you thought would never come, or realizing that your sweet daughter was able to remember something you thought was too difficult, showing you again and again just how much she truly can do, instead of what she can’t.
As we look to the future, with both Lily and Chelsea, we know that while there will be struggles, we get to keep our sweet, SASsy girls forever, and that they will be best friends.