Time and a little innocence

I was talking to a mom yesterday who’s struggling to find peace with a difficult diagnosis. She asked how I stayed so positive. I hear this sometimes and I wonder if I shouldn’t post a youtube video of my less-that-positive moments. I have them — trust me.

While I’m not always the picture of positivity, most days I am optimistic. After all, we’re lucky for a bunch of reasons. For one, we have a son who never complains. Not just because he can’t speak, but because he is the happiest person on the planet. We are also blessed with a daughter who never spends a moment questioning her family’s situation (she does question some of my decisions, but nothing having to do with Jack). Our “special” family also had one advantage that not all “special” families are given — time.

When we started our new life we didn’t know we were starting a new life. Our family assumed that we were living a dark chapter and that we would one day return to normal. We got it wrong and I am grateful for our innocence.

Eight years ago I don’t think we were prepared to accept a world that looks like ours or understand that our family could thrive under our complicated circumstances. Instead, we grew into our new life little by little and it’s worked out well. As the mom, I needed every minute of the eight years I was given to process this new reality. It’s far easier when information trickles in, than when you’re hit by an avalanche.

Jack was diagnosed with ALD before social media. Yes, there was the internet to track down information about rare diseases, but there were not online communities to join. I know, because I tried. I did find a few other families who were battling ALD and we grew close, but now newly diagnosed families can find their peers by simply typing “ALD” into their Facebook search. Within seconds, they’re connected to dozens of families willing to share their experiences.

It’s wonderful for people to know that they are not alone and to acquire information, but I worry that a heap of details about a disease like ours might be overwhelming and discouraging. I’m not sure how I would have reacted if someone had described what our future would look like when I was still processing the diagnosis and treatment.

I’ve shared our family’s journey publicly for years, and many ALD families have reached out. I hear the silence on the other end of the phone (or the keyboard) following a quick description about how “GREAT Jack is doing.” The word “GREAT” is following words like transplants, diapers, g-tubes, seizures, non-verbal, etc. I try to rewind and point out all the things that Jack is still able to do, “Jack can still see, hear, walk, laugh.” The silence continues.

Eight years ago, if some mother tried to tell me that her son was doing “GREAT” because he could still see, hear and walk, I would have slapped her.

As I tried to reassure the young mother yesterday, my heart went out to her. This world full of information is a mixed blessing. While I was impressed with her determination and knowledge of her child’s disease, she was getting buried in facts and statistics and details.

I kept trying to find the right words to make her feel better. I told her to stay strong, find a team of experts, pray if she is lucky enough to have faith, and breathe.

Knowledge is power, but sometimes I think that a little innocence is not such a bad thing.


Love, Jess