1 Month Post Diagnosis

A diagnosis of this magnitude creates a rift in your timeline, splitting your life into Pre-Diagnosis and Post-Diagnosis.

Pre-Diagnosis we were very anxious about J.’s health, all of the time. We knew something was up, but couldn’t put a finger on it.

Post-Diagnosis, life is, if you can believe it, in some ways easier. Would we pay a million dollars to have this all be a bad dream? Of course we would, in a heartbeat! But that’s not an option, obviously, and at least we have answers, now. We have a plan, we have medication, we have therapy.

Right now we’re actually in intermission. Another diagnosis--another landmark event--is coming. I don’t know what that will bring, but right now we are doing okay and that gives me confidence that we’ll really be okay no matter what.

It’s been one month to the day since J. was diagnosed with Infantile Spasms. She’s 7 months old now and doing great, so far.

When J. was in the hospital I was really torn about going home. On the one hand, I was tired of living in the noisy hospital. It was hard to sleep because the bed was uncomfortable, and we were sharing a room, and we surrounded by other sick children which was so heart wrenching. And J. was constantly being poked and prodded and woken up.

On the other hand, though, I didn’t want to bring J. home. As long as we were in the hospital our real lives were on pause, which made her illness feel temporary. I didn’t want to take her home and have her be my sick baby.

It turns out, I don’t think of her that way, maybe because she’s doing so well outwardly she doesn’t seem sick at all. The first week home she learned to roll to one side onto her belly. By the end of the third week she was holding her own bottle and she cut her third tooth. She talks a lot and she smiles a lot. She’s really close to sitting up on her own. She’s now been seizure-free for almost 4 weeks! She is such a trooper and I am so grateful for that.

Watching a baby go through what J. has been through (the vEEG’s, anesthesia for the MRI, the blood draws, the shots, the glucose tests--the list goes on!), it’s painful for us, but J. hardly ever complains. By the end, she didn’t even cry when we gave her the ACTH injections! I’m in awe of her strength and it only makes me want to be stronger, too.

It has changed me as a mother. My sister told me once that we become the mothers our children need us to be, and that’s absolutely true. I feel sad, sometimes, for J. (and of course also for us), but I have so much love for her. Even more than before, I think. And so much patience. I want to do everything I possibly can for her. I’m 100% dedicated to giving her every opportunity any normal, milestone-hitting, fully-sighted child would have.

Her dad and I, we have our good days and our bad days, of course. I think (though I can’t really speak for him) hearing the diagnosis was harder for T., whereas I’m having trouble dealing with being home with J. and seeing her affected by her condition and her medications.

We are both more or less accepting of it now. We’re focused on what we have to do to support our daughter. I try not to think too far ahead. Infantile Spasms is a tricky thing in particular because you don’t know what the prognosis is until the child is older. We have no way of predicting what kinds of delays or challenges J. will have in the future. Living with Infantile Spasms is like standing in a thick fog. You can only see an arm’s length ahead, so thinking of what lies beyond is too overwhelming. This has been a tough point for me. I’m a planner who hates surprises. Now, though, I have to live in the moment. I deal with what’s immediately in front of me and leave the future for the future.

Right now, what’s immediately in front of me is not all terrible. J. can’t be in daycare, so we get to spend more time with her which is wonderful, especially now that she’s awake more than ever and so happy all the time. We are finally getting to see her catch up with her milestones, and we are eligible for great services that will provide her with great therapists. And we are just so proud of her. She is amazing and so, so special.

It’s easy to think that you couldn’t deal with something like this if you’ve never had to, but once you have no choice it just becomes what you do.