My day today began like any other, I was up at 5 packing lunches and backpacks, while trying to gulp down some coffee. I have an appointment at the office later, so I spent a few minutes standing in front of my closet sighing, before getting dressed and rushing through the morning rituals to drop my oldest daughter at school first.

 Later, it is just Zoe and I in the car.  The sun is streaming through the car windows. I put on some music and began making small talk with Zoe about her day. 

I am used to the starts and stops in our frequent conversation. Zoe,  is almost eleven now,  and 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 close , more menacing than when she was 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 will always use a  wheelchair and a walker to explore 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 sometimes forget that the messy room, the lapse in homework , the bad grade -aren’t the important things about mothering.

In the last few months, I have heard too many stories about children lost too soon. Within the special needs communities, the 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 news story, 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 light your soul and commit to be present in their moment , 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.

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“The hard part is trying to answer the questions Walker raises in my mind every time I pick him up, What is the value of a life like his — a life lived in the twilight and often in pain? What is the cost of his life to those around him? … If Walker is so insubstantial, why does he feel so important? What is he trying to show me?”  -excerpt from Ian Brown’s Memoir “ The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son“

It was this passage of the book  The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son  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.

As parents we set out to do the best we can for our kids. We take each challenge in stride, try to make the best decision, take the best approach, give our kids the best advantage. We watch how their  talents develop, we nurture, guide, help them grow, so that they contribute, feel valued and posses a strong sense of self esteem. 

I remember the exact moment I got the news, when my world stopped and for the moment -nothing else mattered. I remember the way the doctor led us across the recovery room and into the makeshift office of the medical tech I saw scurrying away.  Some guy who, at the doctors urging, left so fast, his abandoned cup of coffee still sat steaming on his desk. We sat talking until that cup of coffee grew cold.

 At first there was relief, I was strung out from sleep deprivation, and determination. I knew something was very wrong, but no one in  Arizona could figure it out. Thanks to my father’s celebrity connections,  Zoe and I had flown across the country to meet with a team of special doctors. 

  I made it through that meeting , learning a lot from the doctors words and more from those converstions that  followed.  Most doctors are practiced at the art of breaking bad news.

 Over time I have learned how much to say, how to have these conversations- and when it is best not to try. 

 
This is the story about asking for help, the power and the promise of hope, about two sisters, lots of glitter and curls, and how fairy tales can come true. 

I have this standard joke I make, when people ask about our family’s summer vacation plans.“ The Cleveland Clinic” I joke. Serious , when I consider the expense, time and planning these trips require.  

There is also an Arizona ranch we visit, making great family memories sharing unplugged long weekend time in a log cabin, painting watercolor pictures, visiting with the horses and connecting with nature and each other. These visits too few and far between, are still a medicine for the soul. Visits to the ranch are often spontaneous escapes designed to heal and soothe, refresh and recharge.