I don’t sleep through the night. A good night means I am up only twice. My day starts at 5 and ends by 10, and the mothering I do all day is a physical, eyes and hands-on type that Moms’ of toddlers can most identify with. I am the mom of a girl with special needs, and I have been blessed with the gift of perspective.
It is an awesome gift I have earned. When you hold your child throughout painful or difficult medical procedures one day, and the next she wants a chocolate brownie or to wear her princess tutu to the grocery store.. it’s a no brainer. It’s perspective.
When the bedroom floor is strewn with toys at bedtime, but the sound of laughter still lingers from her afternoon of play, it’s the gift of perspective that allows you to push the mess aside and climb in - to give your girl a goodnight hug, grateful for a good day.
Managing stress is always an issue from me, managing work, home, marriage and mothering. Years ago, I picked up the first edition of “ Don’t Sweat the Small Stuff For Mom’s” and was moved by the poignant, short common sense chapters. I especially needed support with the accepting that I cannot do everything, taking care of myself was mandatory, and sometimes just surrendering was okay.
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.
To reach for the fun of everyday.. it has to be easy and at- hand- and sometimes simple is best. By that I mean, the seasonal art basket has to be in reach, the kitchen table rearranged so a little girl in her walker can look out the french doors on the side patio to check on her own blooming chalk flower garden, and that access through these doors is quick and easy so chalk sessions on the patio can happen spontaneously in the late afternoon- even though this little girl has had a tough week healthwise and big sister is coming down with a cough.
Because there is no medicine like love and laughter, add some sunshine, chalk and water.. and I believe with that.. we'll live happy ever after.
I thought she was asleep, until her head peeks out from beneath her blanket and she stretches her arms out for me. "Mom, your home! " Zoe says this with such joy as if I have been away for days. Not so. Just an hour, her bedtime hour. She is smiling sleepily " Daddy took really good care of me." I close her bedroom door and move down the hall and find Olivia, in bed, fast asleep with her pile of library books around her. Turning off her light, I go to find my husband, thinking of how lucky my girls are- and of the many kids out there whose Daddy's just don't stay.
My husband and I talked about wanting kids before we were even married. We had lots of peace and quiet then, we sat sipping wine in sidewalk cafes, planning our future . We spent weekends experimenting with gourmet recipes, and relaxing by the pool. He had his own company, and I was a career girl- but still our family felt like the right future for me. We stood in the courtyard at Four Seasons in Santa Barbara and exchanged our vows.
We have been blessed, and lucky and in love. Our vows remain unbroken, and statistically, it is a rare thing. Divorce is at an all time high,, throw in decreased success rates for second marriage, chronic illness/special needs and yes- we have defied the odds. But my heart breaks for those who haven't, for those spouses who messed up, gave up, moved on and out- the ones that literally left- leaving their little ones behind.
Nobody ever sees it coming. The economy has pillaged many happy homes. So has adversity, tragedy and the plain old fact that life is tough right now. I believe in doing what's best for the kids, and I get that sometimes that needs to be divorce.
And when you get married it is hard to imagine you and your spouse experiencing that worst case scenario, that tragedy, loss or life changing event . I hear about it happening more and more now. The hard to manage kids, or the family living with chronic illness or special needs, where one night Daddy just doesn't come home because it is selfishly easier to stay away. Or the spouse, who is always putting their family first and one day discovers that their life was all a lie, unexpectedly untrue.
Sitting across from my husband, I talk about the hour I spent at Olivia's school that night. He tells me about the girls and bedtime. " I know what you mean about Zoe" he says, " she was way past tired tonight. I worry about her... " his sentence trails off and I see the deepened expression settling in his face, hear the pain in his softening voice. I can read the words lodged in his heart, the ones he doesn't let go. I know what he wants, what he wishes for and how much he loves. And I think of all the broken families out there and I wish this was the only kind of heartbreak they ever had. The kind where Daddy's heart is broken by love, by wishes, by a wanting pain.
Instead of all those little children left behind , whose hearts are just broken by Daddy.
Life is full and busy- and I like living in the moment , appreciating what I have now and not fearing what the future holds. But the other day, there was this this one moment, when reality crashed in . Just a moment, that knocked me to me knees and once again reminded me what life is really all about.
The girls and I were shopping for Easter outfits. This is the first year, I have broken the " Easter dress" tradition for mass- and encouraged them to choose something special that they love and can enjoy wearing again. O, my older girl artist was naturally drawn to the bright turquoise, blues and greens and Zoe, still my girliest girl was looking for pink flounce. O was confident in her choice of a hip chick long flowing skirt and top with beaded necklace and belt. Zoe delighted to find a soft pink ruffled top, and a matching bright pink poufy skirt. Dressing rooms are getting easier now, as Zoe can do a better job maintaining her balance holding on to the grab bar. Seeing her fashion pose in front of the full length mirror, and then her hand on one hip as she evaluated her choice of outfit as seriously as her almost 10 year old older sister , was so heartwarmingly wonderfully typical that it made me smile uncontrollably. Next, we were off to find shoes. Shoes are tricky with Zoe, she cannot walk on her own unassisted more than a few steps, she has balance issues and is flat footed. So for her special outfits we need a sensible, but girlie shoe. Zoe went up and down the aisles in her power chair, selecting a few styles and filling her lap with shoeboxes. She drove over to the bench , and waited for me to help her transfer onto the bench seat to try on her shoes. And although she could have tried them on seated in her wheelchair, she did what we have always encouraged her to do, what she wants, because she is no different than everyone else. I then fitted her feet with a pair of very feminine but casual, gold ballet style flats that were decorated with tiny flower appliques. Looking up, I saw she was smiling a smile that filled her entire face. She looked to O for approval first, "Perfect !" O declared. I was still kneeling in front of her- soaking in the warmth of her happy glow as she reached up and cupped my chin in her hand. " Mom ", she begins tentatively, her voice is questioning and I can see by her gaze as she looks me in the eye that she is serious and oh I don't know, has an almost far off look on her face. I know she is slowly formulating her words for an idea, translating these important thoughts of hers into words. " Yes...." I say, encouraging and patient. Zoe has delighted me with a higher level of thought and expression lately, and I am curious . So I smile and I wait and the words come. " I want to wear these shoes to walk at school, I want to walk all by myself in these shoes. I am tired of using my wheelchair ALL THE TIME, she emphasizes each of these last three words pointing to her wheelchair again with each word. . Can't I wear these new shoes to walk, and show my friends? And in that moment I wonder if my little girl is asking me a bigger question . She has never really talked about what she can't do . She has never even asked me about what she someday will do. Instead she believes she can , and if she can't, we try to find another way to do it. And just like that I draw my breath sharply. I am on my knees already, so I bend over forward because the pain that has stabbed my stomach, my heart? is so sharp and sudden, and possibly the greatest I have ever experienced. And then I lean toward her again and try to casually gather her in my arms, my face in her hair so she cannot see my eyes have filled with tears. " Zoe," I answer, my voice in her ear. I know you want to walk all by yourself, but you need someone to help you, if you don't want to use your walker or your chair." I pull back now and search her eyes. " I know, Mom" she sighs a small sigh. I am sure there is no pain visible on my face now, even the concern I have absorbed inward, so that it is cannot be seen. My voice is positive , light hearted. Because I am a mom and I want to protect my child from this pain. " But you know what? Zoe, You will be beautiful in these shoes" I continue. " I know Mom," she is smiling again. . " That's okay, Mom" she begins. I have fun in my chair, chasing the boys in my wheelchair on the basketball courts at recess. I am fa--a-a-a-st! She almost sings this last part- and she is laughing again. The moment has passed.
But in my mother's heart, this moment has etched another line . That is how I imagine it sometimes, before a heart breaks, the cracks must come from deeply etched lines of wear. But this same mother's heart is also filled with love, and when I look at my children, O's love for her sister, Zoe's resilience- it overflows with pride.
