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.
So true. You know how they say, “Meet the child where they’re at.” I think as parents we need the same consideration. It’s hard to do… I try to remember that when I’m speaking to new parents. I also believe that parents and children are the same in that…you can’t teach someone something they aren’t ready to learn. We all come to terms when and how we are capable….
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It took me a while to come to terms with this new life. There is not text book for us . . . or is there? Did I miss a reading list for special needs parents?
Jesse! You are so wise! Thank you for your eloquence and sensitivity, xo
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I didn’t feel so wise yesterday. I hope I didn’t scare that mom too much.
Your emotional intelligence is off the charts !! Love the pic of you guys from 2007. I have never seen a picture of Jack before diagnosis.
We all look so young in that picture. Eight long years!
Jess, your ability to share what you are experiencing with honesty and humor is helpful not only to families dealing with a difficult diagnosis, but also to those dealing with any big difficulty in life (and isn’t that everyone at one time or another?) It can be really hard to see past obstacles when you are in the moment, but when you know that someone else has managed to get around even a really big obstacle and create a new normal that focuses on the positive (without sugar coating the negative) it is very inspiring. I am so happy you started writing about this from the beginning, so that others going through something similar can look back and see the entire process and know that even though it was extremely difficult, you and your family are not only okay, but thriving. I really hope you continue to write….
Thank you Lea. I promise to keep writing. I hope you are doing well – it’s been a long time!
This is so beautifully written and so moving. I agree that the internet and social media can be an ocean of knowledge that is easy to to drown in when it comes to difficult diagnoses. It can also be a lifesaver as well. I think of you guys often. I hear about how you are doing and see Dan occasionally on the beach on BI for a 5min update on 5 years of living or so. Best wishes to you all during the holiday season.
It is said – Ignorance is bliss and i agree though it’s increasingly difficult nowadays with facebook etc. like you said so that mom has to take one day at a time i suppose and not look too far into the future. She will grow into the new normal but that takes time to move and to adjust from the old to the new ! Wishing her the best and thank you for sharing your experiences the way you do