I had been operating in fight or flight for years.
Ever seen the movie Soul Surfer? A 13-year-old surfer girl gets bit by a great white shark and loses her left arm. Her family and faith help her find the courage and skill to surf again with only one arm. Super inspiring story, but when you’re the one being bitten in life, the process of getting back on the board means facing what you cannot change.
This is going to get dark here. Promise it’ll be quick.
When I learned my child would forever be unhealthy, mentally challenged, and ultimately diagnosed with an ultra-rare genetic disorder (CHAMP1) with no cure or clear treatment plan, I knew what this meant. Having a younger adopted brother with developmental challenges growing up, there wasn’t an ounce of hope you could bring me. I found myself looking Dread straight in the eye. Dread doesn’t allow you to see a way out. When your child is given a biological prison sentence, you have no choice but to learn how to survive a new, unfair life.
When you’re surviving the first days, even years of something permanently life-altering, you grieve.
I rolled through denial until Eloise was 2, I don’t recall anger. Bargaining with God, yes. Depression, also yes. Acceptance: I’m there for now. Let’s go back to anger.
Eloise was angry. Every day started with screaming from her bed. The kind of yelling that makes you think something is seriously wrong. That was my alarm clock for years. She screamed while I changed her. She screamed as I tried to make her breakfast as fast as possible to quiet her down. After work, more screaming. Screaming through dinner, screaming for attention, bedtime routine, wants, needs… it.was.maddening.
I was angry with our healthcare system. Hours in ER rooms, endless wait for scary health situations, appointments with specialists every week in the beginning. Our overnight and sleep-deprived EEGs were too hard for a toddler. The paperwork forced on a family with a child facing too much became my 2nd part-time job. You don’t have time to feel a certain way about anything because it’s all unfair, exhausting, and too much.
My mother took all my phone calls with occasional tears. God took all my prayers insisting this is not OK. Why her? Why me? Why us?
—————— To be human is to forever learn what it takes to be you. Adulthood is learning the things you ‘already know’ with the hope that the right message will hit at the right moment for you to finally get it… the tipping point for growth and needed change. For those with faith, a God moment.
My prayers changed from finding a way to cure Eloise to finding a way to get a happy and healthy family again.
——————
The screaming has stopped.
I had no idea the depths of joy we would feel after so many hard years. I’m surprised by how much joy I feel with a daughter like Eloise. As I listen to her ask the same comfort questions over and over or sing her favorite songs, I sometimes close my eyes and just soak in her little voice. I can’t believe I am hearing her express herself with words instead of screaming. She was in there this whole time.
“Cultivation of gratitude and joy will bring you home.”
This Feb 28, on Rare Disease Day, I am so thankful for our rare disease community—CHAMP1 families, our WNY community network and East Aurora, NY special needs families. My new prayer is that we keep figuring this out and share all that we can in the right way.
If any CHAMP1 families are curious about what’s working, I’ve added some thoughts below:
I pray. I don’t have a choice. You need to get your nervous system centered and let it out. Soul care.
Attack one health thing at a time. I was trying to solve everything at once and failed. Biggest health issue down to smallest. Check all the boxes, and get the endless paperwork into a system that works for you.
I start with natural, holistic care accessible to me and then medical intervention. Magnesium and finding ways to wear out our active child brought sleep back into our home.
If there’s smoke, there’s fire. Bad behavior = something going on with health or social/emotional care that needs to be addressed. Therapist told me “what’sthe something that should be happening that isn’t happening” – answer to everything behavioral.
Special needs classrooms, once you become school age, are the answer to a lot of your child’s needs. Too much to unpack here, but if your kid is young, a good school system is essential. We are blessed!
Metformin is magical—My daughter is overweight, obese, and obsessed with food. It’s my #1 battle with her all day, every day. Metformin was prescribed for elevated insulin management, but the side effects of this drug have been incredible. Again, too much to share here.
Parent behavior therapy — get a professional involved to help you both agree how you’re going to try tactics to improve behavior challenges. It’s too hard on your marriage trying to figure it all out on your own.
You need therapy. Check your health insurance coverage. Betterhelp.com, in-person therapy…find someone that specializes in helping parents with special needs kids. Believe it or not, that’s available on betterhelp.com
Meet people going through what you’re going through. Our school district recently started a Special Education Parent Teacher Association (SEPTSA). I had no idea so many incredible women were facing exactly what I am facing and have become a source for inspiration and understanding in our town. What a beautiful community of strength I’ve found.
You matter, too.
Cultivation of gratitude and joy will bring you home
Voice With Heart 