Zoe is ten now, TEN. Once upon a time , we weren’t even sure she would live this long. That’s what it’s like when you have a young sick child, diagnosed with mitochondrial disease.
I have been reading about mitochondrial disease all week, and thinking about how rarely we speak of it now. How we had to move on with our life and had to start living it. How time can change things.
Our questions about Zoe’s future were impossible to answer, and the only clinical estimate Zoe’s Doctor offered was “ The earlier the onset of the disease, and the more organ systems involved, the more severe the progression.” Zoe was almost 3, and we knew mitochondrial disease was affecting her brain, her muscles, her eyes and kidneys." This wasn't hopeful news.
Although Zoe’s diagnosis was not as severe as some, like this family’s story just published by CNN, the plan was the same- take your medicine, and take care- do whatever you can to avoid illness and fatigue and we’ll see what the future brings.
It has been a long ten years- and by looking at this picture, you wouldn’t know that. You can’t see the power wheelchair Zoe needs to move through large areas like school , or her push chair that we used on the day this picture was taken. You can’t see the walker she needs to stand unassisted or move through our home. You can’t see how her every moment, each step, each activity in her life has been adapted for her success and independence.
Mitochondrial disease CAN be invisible, but it is a genetic storm that leaves a path of tragedy. Within the last year alone, our community has lost 3 little girls close to Zoe’s age .
What you can’t see when you look at this picture, is a 10 year old girl who is missing 40 percent of her cerebellum, has generalized epilepsy and a long list of other symptoms.
You CAN see she is doing better than expected. You can see her spirit and her beauty, and the love she has for life. The way she laughs so easily, though each movement she makes is a challenge. She is a kid who gives everything her all, including living life to the fullest and fighting her fatigue. Like her Daddy says.. “ That’s just how we roll ...”
What you can’t see in this picture is that her big sister is affected too- her diagnosis had a better statistic as she was diagnosed later and had less organ systems involved. Daily she manages medicine and energy issues. She lives her life like a typical kid, pushing her body to the limit, trying to achieve what is sometimes physically impossible. When I look at this picture, I see her beauty and perseverance,and how her vulnerability is so invisible to others.
What you can’t see is how being their parents affects our daily life. Living this life and loving these girls gives us a unique perspective- what’s really important, what is truly necessary and what we can achieve with faith and family.
Time is flying by- and life isn’t getting any easier, caring for our kids- keeping them healthy to prevent metabolic crashes has a cost - lost relationships, and missed opportunities of all sorts. It is hard to explain to someone else the time involved caring for my kids, managing their energy, the personal hands-on care that prevents me from answering a call because my hands are literally full , the care required that prevents me from attending an event or going out . To new mom friends, I embarassingly explain, trying to cut to the chase- "it’s like when you had a toddler, a 24/7 job," yet sometimes they still don’t get it. And I admit, I thought it would get easier, I am an optimist after all, so I always think I got it covered, that I am ahead of the game - until the next crisis calls.
Yesterday, Zoe asked me about driving her Daddy's Hummer when she gets her license, something I know will never happen. An hour later, she talked about being married someday and being a Mom like me. There was a time when a conversation like this could reduce me to tears, but today standing where I didn't think I'd ever be.. no tears. Heartache? Sure. I know our future won't be predictable or typical, but I have hope and the belief that Zoe will continue to amaze us.
We will celebrate the every day.I know this is an invisible disease that other people sometimes can’t see, but I can. I can look at this picture and see it all, how far we have come- and how far we CAN go.... and for our family & friends who want to better understand and share with their kids, what mitochondrial disease is- check out this awesome quick visual by mitocanada.org