My day had started like any other, I was up at 5 packing lunches and backpacks, while trying to gulp down some coffee. I had an appointment at the office later, so I spent a few minutes standing in front of my closet perplexed and sighing. I looked in the mirror, briefly noting the major damage 40 plus years and nightly interrupted sleep can bring. Finally, by 7 am, we were all dressed and ready, so we hit the road to drop Zoe’s big sister O, at her school first.
Later, it was just Zoe and I in the car. The sun was streaming through the car windows, the radio was on and I was trying to make Zoe laugh.. we were singing to the music and making small talk about her day.
I am used to the starts and stops in our frequent conversation. Zoe, almost 10 now, is a thinker- yet she slowly forms her thoughts, chooses her words and processes it into speech. There are pauses as she searches for the word she wants, and fatigue can slow the pace, slur the word . Remembering all the years she could barely even communicate, I wait patiently and am still grateful each time she begins to speak.
Her thoughts come in word pieces and listening carefully, I fit the puzzle together ..
“ Mom, when I grow up and become a Mom, would this be a good car for me to drive and how do you learn to be a Mom anyway?” There it is, her question. And suddenly it’s as if the clouds have pushed the sun away, and my daily “ cup half full" approach to life has been smashed to hell. Zoe can't see my face, and I am glad. I don't want her to know the raw pain that is causing me to to hold my breath .
My girl is growing up, and thoughts of the future, are naturally close ,more menacing than when she was 3 or 5, and although she is an awesome kid doing amazingly well- she still has a progressive metabolic disease. She still has generalized epilepsy, kidney disease and although she grows more steady with the growing size of her body- she uses a wheelchair and a walker to discover and experience her world.
What I couldn’t say to Zoe is that with her vulnerabilities I can’t imagine her “ being a mom”- that her physical impairments alone ,will prevent her from ever driving a car. I refuse to even contemplate the complex medical conversations we have had about Zoe’s life expectancy, we just don’t go there.
Yet this reality is what sometimes separates me from other Mom’s. Tragedies that take kids too soon are always unexpected. As busy Mom’s we just forget that we are all fragile. We sometmes forget that the messy room, the lapse in homework , the bad grade -aren’t the important things about mothering.
In the last few months, my local community of special needs families have lost two girls, and this loss hits close to home. These girls were very close to Zoe’s age, with some similar issues. These families were fighting, and winning. Their kids survived surgeries, hospitalizations, and the everyday challenges that often come with raising a special needs kid. These parents were managing their kids health, their kids were stable, even improving with therapies. Their parents were seeking refuge in that stability that meant success-until the day their kids weren’t stable. Until one day their physical vulnerabilities were cause for taking their child’s life, and they were just gone.
I am guilty of doing it too sometimes. Getting caught up in the day to day. Zoe is doing well, we are managing , we are “winning” and then an illness comes along, a medical test, or a conversation like this one Zoe and I shared - and reality comes crashing through, grounding me again to what is really important.
And it’s this reality , that I wish every mom knew. It sounds harsh, I know.. - but it’s a secret that special needs moms have learned along the way. It’s something that I think all Mom's should know, or just think about sometime. That all that other stuff- just really doesn’t matter.
Let your KIDS be that sunshine that lights your soul and commit to really love your kids, love like they are the MOST important , love with the heartbreaking pain that comes with it. LOVE your kids, as if they were dying.
that first stopped me. We have all imagined the future of “ what if’s?” managing care for our children when symptoms worsen or a disease progresses. So these detailed diaries of Brown caring for his son Walker, did not disturb me. Instead I found the idea- “ What is the value of my child’s life?” inspiring.
