Special Needs Mom

Message for ALL Mom’s .. LOVE your kids, as if they were dying..

 

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.

 

 

 

 

The Value in Life

“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. 

The Words That Matter Most

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. 

The Soul of A Special Needs Mom

It's late, so the house is quiet and the lights are low. My box of kleenex is now empty. I hit the remote to turn off the tv and head first to O's room . And instead of quieting my craving to climb in bed and gather my first born's body in my arms, I instead bend down brushing my lips over the tip of her nose , and then close to her ear whispering.. promises. I love you's. More promises. I move next to Zoe's room, her cheeks are flushed yet she sleeps peacefully. First I gently kiss her forehead, and then each cheek. Finally her lips.There are no words for her. Just questions, questions I keep silently repeating. Am I doing my best? Making the right choices? Making memories? Teaching my daughters enough? Loving and Laughing enough? And the loudest question that is buried the deepest in my mothers soul -now is pounding in my head.." Will I have any regrets?"

I had just finished watching the movie Extraordinary Measures. Through mostly tear filled eyes. A lot of the drama for me was the imagery , the kids in power wheelchairs, the machinery, the illness, the fear, the desperation that was ever present. The emotional and open soul of a special needs mom.

The remarkable true story details a father's fight, and race against time, to not just find a cure, but to make the medicine that will save his children's life. Not a new story- and I had already read both books, mostly because I stumbled on them in my local library and I happen to read a lot. First I read " The Cure" written by Pulitzer Prize winning journalist Geeta Anand , the non fiction life account on which the screenplay is based- and then I read John Crowley's personal perspective " Chasing Miracles" .

Sleepy, yet unable to surrender, I lay in bed  last night, thankful for the comforting warmth of my husband beside me, thinking... " Am I fighting hard enough? "

I fought hard for the answers and the eventual diagnosis. I pushed and pushed-first fighting for Zoe and then for O. But with a metabolic disease, there is a certain amount you have to accept. With their illness, it is the mitochondria that is damaged all throughout their body. It is on a cellular level that cannot be re-engineered, at least.. not yet.

 It is morning now, the next day- and still I am moved and distracted by the difficult answers to all of these questions. I know am trying my best to make the most of everyday with my daughters. I am their best advocate. I support the cause and believe in the future of medicine and scientific advancement- but what is most important to me now is living like a typical family, I know this is best for the health of my kids today - even though fighting the hardest fight might be best for their future of tomorrows.

From Better to Worse and Then They Will Part

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.

In Her Dreams

Zoe calls me during the night, and I go to her- sometimes she needs milk, or is tangled in the confusion of blankets she likes to cuddle , sometime it is more than that. But when I tuck her in again, her head atop her Barbie pillow with one arm tucked underneath, I wonder about her dreams. She tells me sometimes about about the monsters and the princesses that visit in her little girl dreams. But as I watch her now, eyes closed, the even breathing of sweet sleep beginning, so content. I wonder what she dreams. ... O in the middle of the night, is often frightened - as if the anxiety she battles by day is exaggerated with the dark of night. I understand this, instinctively. When I find myself up in the middle of the night, soothing her fears, getting a snack for her, I worry too.. about the future, their future, how much I have to do, how much I can't get done, I worry about the rising cost of healthcare, the marketing jobs on my to -do list, the appointments I need to make, even the laundry that sits unfinished. When I have tucked them in again, I crawl back under my covers. I seek the warmth of my husband and try to relax,saying a prayer for my girls. But as I start to fall off to sleep, I still can't help but wonder about Zoe when she dreams. Does she walk in her dreams? Can she run? Dance? Bike ? Can she wear dress up high heeled Cinderella shoes and dance about in play? Does she dream of those things she so often asks to do? I hope so. I hope her dreams carry her into her own magical world, so that if only in her slumber, all her dreams come true.

Words Left Unspoken

When Zoe was almost three, she spoke in sign. Words she could never say, were finally free with the fluttering, practiced movement of her hands. Maybe she wasn't speaking then because of her undiagnosed epilepsy, or her unrecognized severe vision loss. Or maybe it was because she was sick ALL the time, with one infection and hospital visit after another. So I found Christine, a local ASL instructor who came to our house and opened our world. I wrote about what that must have been like for Zoe and what is was like for me, here. 

Zoe will be 8 soon, and her speech although affected has evolved so that most people can understand her, most of the time. Somewhere along the way, with six years of speech therapy, she stopped signing I love you, and began whispering it in my ear. Today she uses her words all the time. Yesterday she told me she wants a bike, though I have yet to find one she could ride. She tells me too, that she would like to dance ballet, go ice skating, surf like Barbie in the Mermaid Tale movie and that she will be a Mommy someday.

Last week, Olivia and I were driving in the car and we started talking about Zoe. We talked about Zoe's medicines and how her body doesn't work the way it is supposed to. And this is where I tread very carefully ,O's body doesn't work the right way either, and for the same underlying reason. Yet, these sisters are very different. O can run and climb, and bike and dance and someday I hope she will even surf. O looks and sounds just like any other typical 9 year old girl. O just gets tired faster than other kids her age and shares some of the less complicated health issues that affect Zoe. So we talked about Zoe's muscles not working well and how her inability to balance prevents her from walking, when Olivia asked " But Mom, Zoe will walk one day right? All by herself? All the time, like me when she get's older?" and I realized then that Olivia thought this was something Zoe would grow into. Gently, I replied " Well, the doctor's don't think she will, but she is stronger now than she used to be. We have to wait and see , but.. she may not."

Zoe's diagnosis dictates she probably won't...ever. Zoe's prognosis dictates a lot of things. But, Zoe.. well, Zoe is amazing and I don't like to use words like never and can't and especially not the word won't.

So I looked into Olivia's face then, to see if she understands what I have just said. And I see that her eyes, like mine, are filled with tears. She opens her mouth to speak and then pauses, - and I anticipate the emotional response of a 9 year old sister- saying it isn't fair , then I wonder if she will just accept what I have said and move on. But with the new maturity of a protective big sister - she asks " Have you told Zoe, Mom? Does she know?" and with that spoken I see her loving care and affection. I see the same grief I sometimes feel. She is worried for her sister, afraid she will be hurt and disappointed.

I think about some of the words that have hurt lately. Zoe, pleading with me to walk at school with her pretty new shoes. Zoe crying because she really wants to read and isn't quite there yet. I think about the words Olivia just spoke- and the emotion and raw ache that came tumbling out with them. I think back to when it was only the words left unspoken that hurt .The day I called my husband, from the Cleveland Clinic to tell him we had finally found what was wrong with Zoe, and then I cried, while he waited on the other end of the phone for the words that were still to come. I remember how we would ask our neurologist with each visit to Cleveland, will Zoe walk? Will she talk? And there was more that was left unsaid with each answer to our questions. I remember Olivia's diagnosis that came later and again how much the doctors didn't say, because little is known about the progressive path of this disease. And I remember when the Doctor's phone call came to tell me about a recent stroke they saw on Zoe's MRI and what I did not say in the silence. The memories of Zoe as a toddler, awake and crying through the night as if she were in pain- yet she was unable to say anything. I would cry silently, tears streaming down my own face as I nuzzled Zoe close -kissing away the wet on her cheeks, using my breath to cool the sweat on her brow.

Today it is bittersweet, there are words that wound and bring sorrow, and words that fill us with happiness and hope- yet none of these words can compare , to the heartache of the words that are left unspoken.

Little Girl Shoes and A Mother's Heart

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.

Bad Mother

I have crossed the line from Nice Mom to Bad Mother.

I used to be the nice mom, comforting the upset kid waiting alone at school pickup, worrying about the preschooler who was cruising the grocery store aisle by himself. But yesterday...  well, yesterday I told a golden haired little girl at the park to go away.

It was a beautiful day, sunny and warm and with the kids home from school I was intent on making some memories enjoying the weather. Planning a picnic lunch, we started packing- filling the backpack with balls, bubbles, sand toys and a Frisbee. O brought her scooter, and we went to the local park where I knew Zoe could navigate her pink power chair through the grass and over sidewalks. I set some rules for O to stay close, as I anticipated playing with both children, while helping Zoe walk, climb, slide and swing. All challenging stuff for a kid who cannot stand by herself, but what fun and what a thrill - to play in the sun like everyone else. To go to the park on a warm day.

We arrived at the park at lunch time. O found a shady spot and we spread our blanket. Zoe parked her chair and we all sat together enjoying lunch and playing a game. O was off, soon after- riding her scooter in laps around the grassy area where Zoe and I sat playing with bubbles. After a while we packed up to move to the other side of the park, to the swings, slides and climbing equipment. O led the way, parking her scooter to the side of the swing set. Zoe and I arrived a few minutes later, and she parked her power chair alongside O's scooter. Taking Zoe's arms, I walked her up to the empty swing alongside her sister. With my hands over hers, she sat swinging, as I gently pushed her a few feet into the air while she laughed and called out to Olivia. Within a few minutes, a golden haired little girl arrived. She was dressed in bright pink and green, barefooted and hopping up and down. She looked to be about 4 or 5.  Zoe immediately sized her up as a potential playmate- and said hello. The golden haired little girl ignored Zoe's greeting and looked at me instead, pointing to Zoe's chair and asking “Why does she have that?” “It helps her move around fast," I said.

From there Zoe and I moved to the climbing gym. Taking the steps we climbed to the top of the smaller tower calling out to Olivia and trying to involve her with some long distance hide and go seek. The golden haired little girl was back, appearing quietly by my side. “Why do you have to help her walk?" "Why do you have to hold her hands?” “Oh, it helps her balance and go faster- “I replied... For the next half hour Zoe and I went down slides, climbed again, hung out in the tower, played giggle “tag" with O-and for the next half hour I tried to distract the golden haired little girl when she would appear asking “But, why do you slide with her?" Followed up with “I am 4 and I can do it by myself!" Smiling, I gave her all of my politically correct curiosity satisfying kid answers about why my child can not walk, stand up or run all by herself. I was not going to talk about disease, muscles that were weak or any of the other more in depth reasons- because Zoe was right there, listening, playing and smiling- Olivia was close too. And on this sunny, warm day I wanted us all to be normal and well.

Golden hair little girls' mom was not around - and finally I saw a babysitter off to the distance. Mean spirited, I snickered to myself, thinking that golden haired girls' mom probably needed a rest from this kids incessant nagging and curiosity.  Sizing up the babysitter, I could see she was too young and inexperienced to help me out. Golden hair little girls' stalking us had probably given the babysitter a nice break, too. Zoe and I were climbing up the steps to the tower , when the girl was beside me again - probably for the fifteenth time, Zoe was lunging forward toward the top. Golden haired girl was getting more curious, “It sure takes her a long time to get up there." and because golden haired little girl had not yet addressed Zoe, I looked behind me and said “Go. Play." “Huh?” she replied, surprised I could tell. “Go play... somewhere else" I added. My voice low and stern, but yet ...not hissing the way I really wanted to. I didn't want to scare the kid after all. And, finally...she was gone.

At dinner, we were talking about our time at the park. “That little girl..." Zoe began slowly... “I saw her following you “, interrupted Olivia.” She was annoying me" said Zoe, laughing. I looked at Zoe then, her exaggerated face, almost rolling her eyes in frustration.

I remembered then, the way golden haired girl dashed across the park, reappearing again and again, with fluid motion, her muscles strong, her legs pumping fast as she ran. I pictured her climbing to the highest tower where Zoe wanted to go- yet I could not take her- the only way to reach it was by using the monkey bars... I remembered her golden hair, long and curly down her back as she took the rungs quickly and expertly, the golden haired princess of the highest tower.

 And with that gut wrenching honesty that comes from deep within, I said... “Me too, Zoe. She was annoying me too." 

What She Deserves..

 

 

The other morning at school,   Zoe was navigating her pink power wheelchair around a corner , heading for her classroom door, when we came upon a Mom & Dad. I nodded to the Mom as we headed through the door.  But when the Mom passed Zoe , she let out this melodious kind of crooning sound - something in between an " Ohhhhh" and an " Ahhhhh" - It was lilting and drawn out, ending on a high note. It was similiar to the sound you make when you see a newborn baby or a cute, cuddly puppy. Definitely, the same kind of " Ahhhh" my girls use when they are lucky enough to spot a pup they want to pet. And so, yes, I am saying that this seemingly well-intentioned , probably very nice Mom gave my kid ( who she does not know, and no Zoe was not remarkably dressed, or doing anything unusually cute) the same kind of " oh-how-cute-let- me-pet-it" salutation that you give an adorable dog. And why did this bother me  .. you might wonder? Because all my kid was doing, was what she does every day, driving her wheelchair into her classroom. 

 

Please keep reading, and understand. I do appreciate the sincere kindness of strangers and friends. Those who sometimes ask if I need a hand, when I am loading Zoe's power chair or walking with backpacks and her walker slung over my shoulder. I usually don't need help, because I do it all the time. Because I wear mostly jeans and t-shirts, and comfortable shoes for the job and I am used to shlepping my kids' stuff around. Every once in a while though- I do need help. But this story is about my daughter. My 7 year old, sweet, smart and socially capable little girl. The same little girl who sometimes will turn to me and ask me why someone is staring at her, or why someone asks me questions about her -while Zoe watches from nearby and later questions why they didn't just ask her.

 

Zoe is a complex kid, I know. Her speech and vision are affected, and sometimes she is slow to recognize a far away face or a child who runs past her quickly calling hello. Sometimes strangers can't understand her speech- and I get all of that. What strangers may not know is that Zoe has been raised to believe she can do anything. And although she sometimes asks tough questions about what she is able to do, she also asks me to teach her ballet, take her ice skating and buy her a bike. All things that would be very challenging for her to do since she is unable to stand up unsupported for more than a couple of minutes. In many ways, Zoe sees herself as who she is, just another little girl in second grade. She embraces life . 

 

And for the way she embraces life, she deserves high fives. For the way she loves to sing and dance, she deserves the well earned compliments every little girl with a microphone yearns for. And when her hair is done with her sparkly pink headband in place, and her lips are shiny with her favorite lip gloss, she deserves the affirmation that " yes, she IS beautiful." She also deserves the extra hugs her friends sometimes offer, because they miss her for all of the time she is away from them, learning braille, or doing speech or physical therapy. And she also deserves the extra kindness from her teachers and therapists, who know how hard she works each day and how much more effort she exerts , what simple tasks may require of her-yet she never gives up and rarely complains. And there are other extra kindnesses she receives from those who know her, who know what she has gone through while ill, how her seizures affect her or the details of her labs and medical testing- things other 7 year olds know nothing about. All of these kindnesses she has earned, because they are given with respect from people who know how truly amazing Zoe is.

 

That mom the other morning.. .well, it may have been pity or maybe even compassion in her voice, I'm not sure. I know that she does not know Zoe and I know what it wasn't. It wasn' t what Zoe deserved. Because after all,  my kid was just doing what every other second grader was doing that morning- going to class. She just wasn't walking in ...

 

Alone with Autism, A Cup of Comfort for Parents

  I have met many mothers whose lives are both challenged and enriched by their child who is affected by autism. Although it does not affect my girls, there is a very high incidence of autism related to mitochondrial disease. In honor of Autism Awareness Month, I wanted to share this story of mine that was published in A Cup of Comfort for Parents with Autism. ( Note that feeling more private at the time, I had changed the girls name for national publication.)The stories are inspiring and true, the real, shared  emotions soothing to a parent who may feel alone. This book makes a great gift and will be appreciated by any family living with autism . You can purchase it online at the link above,on  Amazon or it is most often available at your local bookstore. ( This I know as Olivia checks each bookstore we visit!)  

Sara’s First Friend

    The gray sidewalks that border my daughter’s school playground are filled with chalk drawings. Today, the kindergarten chalk artists have yet to begin their detailed daily pastel drawings. As we enter the playground area, my daughter, Samantha, her red ponytails bouncing, runs ahead to place her backpack in line outside her classroom door. Sara, her little sister, slows the quick pace of her walker as she looks down, studying the chalk- filled walkways with interest.

   Finally, as Sarah & I  reach the end of the long sidewalk, we find our place,. Leaning against the wall that parallels the playground, we watch the five- year- olds as they laugh and play, tease and cry, releasing their early morning energy before another day in class.Sara studies her sister from afar. Sara’s eyes reveal nothing. I am tired this morning, as usual, because of Sara’s restlessness throughout the night. Wearing blue jeans, and my favorite Gap T-shirt, I sit “criss-cross applesauce” style, clutching my commuter mug. I drink the hot coffee greedily. mentally double- check my morning routine, worried that I have forgotten something essential for Samantha’s day at school. Worried, as usual, that she has not received her due share of affection, or enough attention because of Sara’s demanding needs. This is my morning routine. Sitting here, staring at my very different daughters, trying to imagine Sara on this playground two years from now, and questioning what our future will be.

   I have mastered the role of being Sara’s advocate. I believe this is inexplicitly entwined with the responsibility of being her mother. I think back for a moment when life was simple, when I was more carefree before my heart began to hurt,before that life-defining moment. I was in the shower, that day, indulging in the extravagant luxury of deep- conditioning my hair. Samantha, then three, came to pound on the glass shower door. She was demanding milk in the “I want it now, Mommy!” typical toddler way. That’s when it clicked; something is wrong with Sara. She was sixteen months old, and not talking, not walking, and not demanding- or even requesting anything. She was much delayed. It took a year to get physicians to pay attention. I flew across the country and sought the care of a special neurologist at the Cleveland Clinic. The primary diagnosis is mitochondrial disease, the secondary neurological diagnosis followed later that year.

    On this early morning, my daughters are separated by twenty feet of sidewalk and ten square feet of playground sand. But I know of the other very real and vast differences that place my daughters’ worlds apart. Although Sara’s physical disability is visible, her neurological issues are not. Sara uses a walker to lend strength to her weakened muscles. There is, however, no crutch or physical aide to help her with her other features. There is no outward sign to tell others that she has a neurological impairment, a different weakness with unique challenges of its own. She experiences anxiety, awkwardness, and behavior challenges, she can be very uncooperative.- these are the things that cause other mothers to look, whisper, and even comment, offering unsolicited advice.

     When the first morning school bell rings, Samantha runs over to us and kisses Sara and me goodbye. a wet sloppy kiss on the mouth for me and a nose rub for Sara. Samantha has learned that Sara prefers this softer, less sensory- offensive gesture of affection. With a quick wave tossed over her shoulder, Samantha runs off to collect her backpack and enter her classroom. Sara stands quietly as she watches her sister walk away. She looks at her feet as she shuffles them repeatedly. I wonder for a moment whether this is how it will always be between them:. Samantha rushing off to experience life, while Sara stays behind.

     Each morning as we stand against this wall, I watch Sara watching Samantha play-and every morning I wish for the same thing. I wish that, someday, Sara will be comfortable in an environment like this . I hope that this exposure to Samantha’s school world will ignite Sara’s interest, light a social spark.

     Sara is blessed to have many “friends” in her life-people outside our home that truly care about her,- want the best for her, and have great confidence in her abilities. There is Robin, Sara’s speech therapist, Atalie, her physical therapist, and Michelle, her occupational therapist. Not only do these “friends” teach her physical skills to strengthen her muscles, they also teach her how to play with toys, initiate social interaction, follow routines, and respond socially in simple situations. Abilities her sister developed naturally, these are skills Sara will have to learn.

     Today, Sara points to the children rushing by us and says “me.” .Surprised and excited, I bend down and look into her face. Eye to eye, I question the meaning of this spontaneous use of language. I am on my knees, waiting patiently for Sara to show me what she meant. I feel a tap on my back, and I turn and stand up to greet our neighbor, Tracy, and her three- year- old little girl, Katie. We all drift toward the parking lot. Katie, is running in circles and humming loudly. For a few minutes, I am lost in simple conversation with Tracy.

  We talk of our husband’s long work hours, recipes for gourmet dinners, and dirty laundry, and I feel as though I am miles away from the complex therapy schedules, vitamin supplements, medical bills, and emotional worry that fill my world. I am a typical mom, just beginning my day. , standing in the school parking lot,. Visiting with a neighbor- carefree.

    Relaxed and preparing to say goodbye, I look down at Sara. She has been walking beside us in her walker, quietly regarding Tracy and Katie. Suddenly, she is leaning against her walker for balance, and Katie is reaching for Sara’s hand, and for a moment Sara lets her hold it. Then, amazingly, she leans toward Katie, and rubs her nose to the tip of hers. An Eskimo kiss; she imitates the kiss goodbye her sister gave her moments ago.

    The sun shines brightly, and I am shielding my eyes from the glare. My fingers form a half fortress wall, protecting the tears that are pooling in my eyes. I feel a warmth in my chest, and I recognize this unfamiliar feeling, is unexpected joy. It leaves me with a sense of contentment, yet I feel strangely energized.In a gesture of celebration and hope, I put my arm around Tracy’s shoulders and pull her into a hug. I lean down and brush Sara’s cheek lightly with my lips. Her rosebud lips offer me a subtle, shy smile. And I know,-that she knows. Sara has found her first friend.

Suzanne Perryman is the publisher of a consumer crafts magazine ., a passionate and advocating mother of two girls, and a community volunteer for Raising Special Kids Arizona. She resides in Scottsdale, Arizona with her husband Bruce, and is also the AZ Chapter President for the United Mitochondrial Disease Foundation.( As published in 2006)

 

Looking at the World Through Rose Colored Glasses

 

 “Sitting on the beach in Maui.” the text message read.  I had just checked my phone. I thought about how to reply to this life long friend. We don’t talk much anymore but we still remain connected. I put my phone down and grabbed the stainless steel mixing bowl I was holding... My reply would read “Sitting on the bathroom floor... Holding O’s vomit bowl !!  Maybe with enough exclamation marks, it would give her a laugh.

 

It’s hard to explain how I feel when friends of mine sympathize saying... “You have your hands full… “Because, really. I don’t. We are blessed.

 

It is true that I am always worrying about energy levels, watching the girls for flushed faces, fevers or just fatigue. Shadowing Zoe to prevent her falls, keeping an eye on her seizures that break through the medicine barrier. It’s true that O’s health issues have progressed, her anxiety, an unpredictable new issue. But really, we are so very lucky.

 

I know a lot about mitochondrial disease now. It was five years ago when an expert doc handed me a packet of info saying “Go home and read this. Clinical cases vary, so please don’t focus on the internet case studies.”

 

Back then, the disease was so newly documented, only the worst cases were published. And yes, I read them. Most were fatal, devastating descriptions about loss of vision, mobility, motor functions and eventually...life. Over the years, that’s why I have been reluctant to tell others where to go on the internet to read more about it. The information is misleading, depending where you go, what you read. Depending on how you look at the world. But here are the facts; it is a progressive disease. There is no treatment or cure. But here are the even more important facts: Every case varies. Patients can have periods of time where their health can stabilize. Managing good health, and avoiding metabolic stress or illness, can delay the progression of the disease. And most of all, none of us have the unconditional promise of tomorrow, no matter how healthy we are today.

 

Over the years, I have come to know other children affected by the disease. Children who have been cherished. Children who have accomplished much. The same children who have eventually lost- and left the lives of the family who loved them.

 

Last week, we saw the local eye doctor who confirmed that Zoe’s retinopathy is slowly progressing. For a moment I stood there thinking about how to make the most of her seeing years, however many there could be 2, 5, 10 years?  Scene after scene flashed through my mind, more painting, more play dough, pink ruffled dresses, more glitter lip gloss- promising myself not to waste a moment. But then the doc moved on and talked about the new glasses she needed. Her vision decreasing and requiring a new pair of enhanced lenses. And with her new glasses she would see even better than she was at that moment- improvement. So with the help of her sister, Zoe selected a snappy new pair of Juicy Couture rose pink colored glasses.

  

Yesterday, we picked them up. I drove home from the appointment smiling, listening to Zoe happily singing along to the radio.. I checked her reflection often from my rear view mirror. She looked pretty and so grown up as she sat looking out the backseat window.. Did she see more today wearing her new glasses, as she looked out the backseat window? How would she feel when someday she saw less..?

 

Her sister was at home with Daddy, napping on the couch, curled up in her favorite blanket . A trip to the doc had procured a medicine for her nausea and she was finally resting comfortably.

 

I felt the flush of warmth within me. For today, we are doing something. Being proactive we can keep them healthy.We are managing. Medicines can make the girls feel better. Glasses can help Zoe see more. We are choosing- to look at the world through rose colored glasses.