In the blink of an eye, life changes

~When Baby J was born, there was a small white mark on her inner thigh. The nurse noticed it and suggested that NSLS have her pediatrician take a look at it, which she did. At first I think they thought it might fade with time, but it didn't, and in fact, they discovered a few more small white spots on her body, so they were referred to a dermatologist who then referred them to a geneticist.

~On Friday NSLS, Mr. LS and Baby J saw the geneticist and the white spots were diagnosed as tuberous sclerosis complex. Because there is no history of this condition on either side of the family, the doctor is assuming that this is the result of a random mutation. Although this condition can be linked to autism, developmental delays, and seizures, Baby J has so far experienced no other symptoms, and has met all appropriate developmental milestones. In three weeks she will undergo a MRI to check for tumors--the primary result of this condition. Tumors, almost always benign but still dangerous, can grow on any of her organs. Many times they can be surgically removed, but will often reoccur. She will also see a pediatric ophthalmologist since her eyes can be affected.

~Many people with TSC live with few or no symptoms, but others can be seriously affected. We are, of course, hoping and praying that Baby J will be one of the former. It is still a blow, though, to hear that a seemingly thriving baby has a condition that has the potential to affect her for the rest of her life.

~So, in the blink of an eye, life changes. Of course, my first reaction was "It's not fair! Not our sweet Baby J!" But why should it be fair? And why not us? I think of all the others I know of who have things potentially much worse to deal with, and in my heart I try to be grateful that it is not worse. But it is hard.

~When I talked to NSLS yesterday and today she seemed to be handling it well. She and Mr. LS are of course worried, but at the same time, they remind themselves that Baby J is the same baby she was before they received this diagnosis, that she's not sick, per se. She'll require lots more monitoring. Their challenge, and mine I must admit, is to make this new reality "normal" as much as we can, not to disrupt Baby J's life, not to define her by this condition.

~Because I can catastrophize with the best of them, and because Dr. Google is right there to help me, I can picture all of the possible grim outcomes. But I don't want to go there. I want to picture that precious baby growing up to be a strong and vibrant woman. I want her to a have a normal and happy childhood. I want everything to be okay. Just what all parents and grandparents want. It just doesn't always turn out that way. But for now I am trying very hard to focus on how healthy and happy Baby J is now, and how blessed we are to have her.