If you've had a child with infantile spasms, you know that there is a spectrum of outcomes associated with IS and genetic disorders. And in the early days, when you’re scrambling to find the underlying cause, all potential possibilities flash through your mind.
Because Nora is undiagnosed, there was no roadmap for what her future would look like. We’ve simply had to wait for time to unfold and show us what will be. When she didn’t get seizure control right away, and then even after she did, but development continued to be so agonizingly slow, I've found myself saying "If only…"
"If only we could get the seizures under control"
"If only she could sit"
"If only she could use her hands"
"If only she could walk"
I didn’t even know what the end of the statement was. If we could just get to that one next milestone.…I'd be content?...I wouldn't ask for anything else?
We all know that’s not true.
Having a child that is BOTH severely affected, while also having met some major milestones, I can say that the truth is… It never feels like enough. Does that make me ungrateful or a bad person? No.
It's simply not how we are wired as humans. We will always stretch and aspire for more, especially for our children. I will always want that next thing for her.
The ultimate paradox is that SHE will ALWAYS be enough, whatever level of development she achieves
I can love her immensely exactly as she is while still grieving the fact that I wanted her life to be easier. I can be so fall-to-my-knees grateful for the progress and stability we are currently experiencing, while also holding room for the sorrow that things didn't turn out differently.
I've said it before, and I will say it again. You can be grateful and grieving. There is room for both.
I often feel that I live in two worlds. I have close friends who are not steeped in the world of disabilities who likely view Nora as a worst case scenario, or at the very least thank their lucky stars that this isn’t THEIR child’s fate. At the same time, I know others who would give their pinky finger for their child to be able to sit, or for their child to smile at them. I personally know what miracles we have been fortunate enough to have been granted, and I know the miracles I once wished for are simply not in the cards in this lifetime.
I also have friends whose children were in a similar situation as Nora whose development has now far outpaced Nora’s. One thing we all have in common is that once you have ridden this roller coaster ride, your newfound perspective stays. you’ve seen “behind the curtain” so to speak. There is no going back to taking certain things in life for granted. There is also no going back to the way you used to view milestones and developmental achievements.
The near-obsessive compulsion to get to the next big accomplishment has been replaced with a slow and steady drive to maximize Nora’s [and her whole family’s] happiness alongside her abilities. We’lll keep living one day at a time, one inchstone at a time, finding the beauty and the joy in the now.
Will I keep wishing for that next thing? Yes. But will I also make sure to live today? Absolutely. After all, it’s all any of us are guaranteed.