“ I like helping you..” My daughter Zoe tells me. We are cruising through our neighborhood grocery store, as I weave through the aisles, with my shopping bag overflowing and hanging from the back of Zoe’s wheelchair. Zoe expertly balances a half gallon of milk, green bananas and a loaf of crusty bread on her lap as she goes on.. “ I need to learn this stuff, how to be a Mom for when I grow up. I have been thinking about this....” Her words stop and start again, as she retrieves the word she was looking for and finishes the string of her sentence. She ends with most difficult question. “ Is it hard to be a Mom?” She is smiling, happy to imagine her future- self this way.
I can’t imagine Zoe being a Mom. She is 11, and without detailing her prognosis, and debating the opportunities for adults with intellectual and physical disabilities, there are basic truths I have come to accept; Zoe’s metabolic disorder is progressive, her generalized epilepsy diagnosis is complex, and looking into the future makes my heart hurt.
This Mother's Day there will be thousands of Moms who don't receive handmade notes, or home crafted, crayon colored cards. These moms mother for a smile or a tender touch, they mother because that is simply what you do as a Mom. This letter is for the Special Needs Mom , whose child is unable to write or say the words this Mom may long to hear.
Even without my words you always know what I need.
When I am hurting or afraid, frustrated or weary, you gather me home into the safety of your arms.
You know what makes me smile, and fills my face with light.
You make my happiness when you sing my favorite song, and sweep the softness of my favorite blanket, across the curve of my cheek.
I held my first daughter tight against my breast as I watched the Twin Tower tragedy unfold on television. Tears dripping onto the soft red curls on her infant head, she slept soundly, as I held her tighter and tighter, believing this would keep her safe from the terror at hand. Innocently she slept, unaware of my growing grief, only awakened by the fear in my voice , as I phoned my husband, describing minute by minute, the unimaginable images.
It was the terror that every one talked about that week. The true stories of the heroes, took weeks, months and even years to be told. News events were still reported then, in the paper, on tv and online , at the time of 9-11, social stories were not “ shared.”
When my daughter Zoe was little, I looked to the doctors to forecast her future. After all , they had the clinical experience from thousands of patients , and I was the first-time parent of a special needs child. I would cover Zoe’s baby face with kisses, all the while wondering, “ Will her words ever come?” Will she ever walk? The doctors were uncertain.
As Zoe grew older, she missed “ milestones” , yet amazed us with her tenacious achievements. We learned to embrace her uniqueness,and I found peace with the fact that as her Mother, I knew her the best.
My girls are twenty months apart. " O" the big sister, is almost a teen- she wears wedge flip-flops, designs elaborate doodle drawings and can master most online games; All enviable accomplishments to her little sister, Zoe, who does her best to follow in her sister's footsteps. Where " O" can run , Zoe uses her walker. When the girls do "" Just Dance 4" on the Wii, Zoe has some pretty mean moves that are meant to model the spins and bounces her sister effortlessly exerts. The girls share the same medical diagnosis, however in our house, O is the " typical " kid ,and my expectations for her are great, maybe maybe even sometimes..unrealistic.
Olivia was about 8, when we started talking in detail about Zoe's diagnosis. It was then that I realized through O's little girl eyes, that she was expecting Zoe to get better. The medicines, the therapy appointments, even doctor's visits.. were all meant to make Zoe better, help her learn to walk and speak clearly. O was just waiting for it to happen, and waiting and waiting, until one day when she asked me if it ever would. And I told O what I knew to be our truth,. I watched her eyes fill with tears and waited for her words of grief, and instead heard her little girl voice ask" Does Zoe know, Mom?" She was protective of her little sister, trying to imagine if Zoe knew this, if Zoe, with her great love for life and easy laugh, knew this to be her future or if there was more hurt to come.
Yesterday, Zoe RAN for the first time. And it was real, I could feel her determination, ..as she kept pumping her tired legs, to go a little faster ,and climb the slight hill.
I could see the happiness spill from her smile , as she passed others on the running path . I felt the thrill of it, as she finally crossed the finish line, elated and spent.
Standing behind her, I saw what she saw- the incredible imagery of the wii game graphics on the big screen-- the dream-like sequence of images, as my little girl stood in her walker, pumping her legs with a rhythm her legs were never meant to find. As she imagined it was her hair flying in the wind and that she really was that girl on the screen- running in the sun, legs galloping with ease over the grassy hills.
I am about 12 years into motherhood now.. and like a lot of Mom's I know, I still don't feel like I'm getting it right. Mothering kids with medical issues takes a purposeful amount of focus and attention, the kind that sometimes prevents you from being that cool " chill" kind of mom..yet still I try , and every day I learn.
I have learned that sometimes rolling off the bed as a result of a tickle fight is the kind of good clean fun that all kids need, low muscle tone or not.
I have learned that a smiling , happy faced kid, that got that " 5 more minutes!" in the pool she desperately wanted can help you dismiss and not obsess over-the flushed color of her fatigued face.
I have learned that your sad, crying kid- can break your heart at any age- whether a sick toddler unable to tell you what's wrong or a frustrated, overtired 10 year old that just can't verbalize every feeling she feels.
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.
When my daughter Zoe was a toddler, she didn’t spend her days spreading out her toys and playing on our cool tile floor , or toddling around clutching her favorite doll with sticky juice hands like her big sister Olivia did.
Instead, Zoe preferred to cuddle for comfort. Her speech didn’t develop until late so I spent a lot of time trying to interpret her sound and movement, solicit a response, and get to know my little one, trying to discern what made her happy and what was making her hurt.
Zoe was 3 years old when she was finally diagnosed, when we learned she would never walk by herself. She was 4 when we learned she may eventually lose her vision, and when she was 5 she experienced a stroke like event- yet through it all, when she wasn’t sick, Zoe has been a pretty happy, smiling kid.
I think I recognize you! I do.. Before becoming a Mom, I used to live in your world of Black & White, everything in order- in it’s place- I got a plan- got a schedule- a list of finished projects- checked -off checklist and all. How wonderful for you that your life is so structured , so dependable and predictable that you cling to that line dividing right and wrong, black and white, and that you feel compelled to comment when you think someone is coloring outside the lines.
This time though, in your hurry to keep things neat and orderly.. you didn’t see the whole picture. I guess you didn’t see the accessible permit hanging from my car mirror, giving me permission to park close to the entrance. You didn’t see the wheelchair lift permanently installed into the back of my SUV, and you didn’t see me unload my little girl's pink manual wheelchair that we use for “ quick “ trips. Maybe from your view you only saw my older daughter and I, and not Zoe’s bubble gum pink wheelchair.
So here we sat, Olivia and I , side by side on the couch .It was almost 6 am and I was gulping down coffee and helping her do some last minute study for her Science test... the functions of the cerebellum, the nervous system and the role of the brain. The timing seemed right to explain again how much of Zoe’s cerebellum was missing and how that affected her balance, and motor function, Zoe’s epilepsy and how her episodes of dizziness are most likely seizures. We talked about the differences in Zoe’s brain and Olivia seemed to really understand. It made sense, her book open on her lap , the scientific explanation there in black and white.
We finished our review and I sat watching O’s still sleepy face in the early morning light, admiring her beauty, amazed by her intelligence, her ability to empathize and understand her sisters challenges in a different, newly mature way.. “ But one last thing Mom,” O said. Laying out the words that would tell me that although Olivia may have analyzed and acknowledged the definitions of the words she heard, her heart simply would not let her understand.. “ Zoe won’t need her walker or her wheelchair forever will she? Her muscles will get stronger, when she grows up. Right?”