I couldn't help but write you this letter, and I hope that's okay. I have so much to thank you for, first for being Zoe's ' buddy" at summer camp.There is more I want to share with you too. My hope is that you will tuck this letter away and read it again at different times in your life.

I hope it will help you make sense of your world, maybe inspire or comfort you when words like these are what your heart needs.

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.” 

I never imagined Zoe as the 'tween she has become. She talks alot now about growing up , and asks those difficult questions that make me feel old and sometimes sad. The last ten years have flown by, but when I look in the mirror I can see every moment. The way my life evolved from a master plan to just getting through each day.. learning to shift my life from " black and white" to an okay shade of gray. The way there is little time for anything besides family, home and work.

Things have been kinda calm lately, and after a whirlwind of working non-stop for the last year,parenting my girls ,ten plus years of not sleeping through the night, and long talks with my husband with his repeated reminders to " slow down" ,  I kinda had a revelation. Something has to give.

It’s seems like only yesterday I was sitting in a small room, with a desk between Zoe’s Doctor and I - as I ask him question after question- all of them starting with “ Will she ever..?  And in that moment, instead of feeling tragically overwhelmed- I was empowered. 

Finally, I was getting confirmation on something my mother’s instinct had always known. I was getting answers.  

Seven years have passed since then, and for the first time, in a long time- I find myself starting over asking questions again, researching and  learning new methods for tackling daily life and Zoe’s physical and medical challenges. Zoe is 10 now , and continues to give her all to everything she does. She approaches becoming a “ tween “ no differently,  reaching for more freedom, becoming frustrated at times that she can’t enjoy certain privileges her “ almost teen” sister earns. 

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. 

 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.

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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. 

“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. 

  It is past 8 o'clock at night, and my ten year old should have been asleep a half hour ago. But she isn't, she had to finish her book, have another snack, get a drink of water and now she is over tired. Her face is pale, her body is tired, and the aches and pains of a busy day have caught up with her. As I check on her one last time, dim her lights and prepare to kiss her goodnight.. I get a verbal  recant of all that went wrong with her life that day, and all that my tired girl thought I was to blame for.. I get a litany of not so nice little girl words. Within minutes, I know she will be passed out from exhaustion. She has an ice pack wrapped around her leg, her baby blanket around her neck and her favorite stuffed animal tucked against her chest. I kiss her goodnight and let the words flutter and fall from the air.

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.

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.

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.

When Zoe was little, each moment of truth was stunning. She will never walk by herself. She won't run in the grass, walk in the sand, or recklessly dance her way across the room. These moments have continued as she grows older. Drive a car. Have a child. Grow old.

 I grieve these truths and then move on, trying to live so typically that sometimes I can forget for a long, long while. Until now, now that Zoe, and her big sister, are coming to know these truths- and understanding them enough to shed their own tears.

 Zoe is 8 now, and loves to sing and dance- read about Ramona, and is smart, especially in that " when you least expect it" kind of way. Zoe's big sister is almost ten, and I have spent these years teaching them that they can do anything,that everyone is beautiful in their own way, that they are just like everyone else. For Zoe especially, she believes this to be true- and only recently has she started to see how truly different she really is.

During a recent bedroom dance session, I caught some of her awesome moves on video. She grabbed my iphone the other day and began playing the clip. She was stunned. " Mom, I looked horrible ( one of her favorite dramatic declarations.. horrrrrrrible!) I thought I danced better than that she said- and then she sat .. silent for a few minutes. And then just yesterday, we were talking about her book report presentation, nearly a month away.. and in the midst of all of her objections, was that truth that came before the tears... " I can't speak like the other kids."

And yes, I know how to fix these things. We will practice, and practice and adapt. The awesome team at school will help her practice too, and her confidence will grow. I know it will be another accomplishment for her.. until the next truth comes. And is that what comes along as your special needs child grows older- teaching them these truths?

I get emails sometimes from other moms in the special needs communities. Asking about what I deal with or how. Have I ever experienced this or that.?. and the answer is most always yes. I just can't share that. The grittiest ugliest stuff, the seizures, the stroke, the sicknesses- to me the details are private, and to my husband and others who love them - It is painful too. And sometimes, there are no words. I try to protect my daughters when they are at their worst, I want to care for them, heal them the best I can and we just hunker down until the storm has passed.

The start of this school year has brought many of these reminders, the adaptions, the schedules, the fear of the fast spreading school germs that can knock the girls down in a moments notice. I have been scheduling the MRI's, The EEG's, evaluations, updates and labs. Soon it will settle down, and I will slip into the school routine again. And I look forward to moving on , keeping the painful moments private and living so typically that I can forget for a while , until the tears come again.

This Saturday I will be speaking to a room full of people like me. People that used to maybe escape for weekends at the beach when their work life got too demanding, someone who would pick up the phone to gather friends at a favorite restaurant.. someone content to spend hours of  quiet time with a good book, a good movie, a good friend. This was all before they began living with an illness, looking for answers for their child, or for themselves.Before the day a  doctor sat across from them, telling them about mitochondrial disease and everything changed.

I don't talk about mitochondrial disease . Especially around my kids. Mitochondrial is a big word, disease is an ugly word and the two words together ? Well.. it's complicated. Essentially, mitochondria is in every cell of your body and responsible for producing more than 90% of the energy the body needs to sustain life and support growth. When  mitochondria fail, less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. You can read more, but once you learn that it is progressive and that as of today there is no cure.. the documented details can be grim.

Learning about mitochondrial disease changed me. Finding the diagnosis we so desperately needed - was a relief. But after that, there was grief,  frustration and finally... determination.

Cancer used to scare me until this happened.  Because when you have cancer, there most always is some type of treatment, a foreseen idea of what the future will hold, how the illness will progress. You can plan, you can prepare. You can even fight back.

We take my daughters to the Cleveland Clinic, and there we see one of the best, most knowledgable expert physicians , and for that I am so thankful. But still, there is no real treatment, no real plan and no expert guess as to what the future will hold. You can only manage today, and your only chance in delaying the progression of this is to be vigilant . Illness, infection, and physical stress can increase progression. And so I am always monitoring sleep, food, heat stress, energy levels and illness. And always monitoring, is stressful . I want us to live each day fully, make memories, be normal, but I also know that the decisions I make today will affect their life tomorrow.

Today I am not as social as I used to be. I still like music, movies and good restaurants. I still can make people laugh, yet today it's mostly my husband and at the most unexpected times, usually at the end of the day as the children sleep and we settle into our new normal.The great restaurants are replaced with new recipes we try at home. We make the most of our time together, enjoying the backyard, the simple thrill of opening the french doors during dinner, letting the desert breeze in and marveling at the Arizona sunset , magentas and purple splashing the sky.

I am losing touch- with friends, people I admire, even family I love. There is not enough time to pursue and even maintain relationships, personal interests, and it hurts. It is hard  to steal the time away -on the phone and especially in person. There are medicines, appointments, unexpected illnesses. There is daily living, fatigue, the summer heat , seizures and even more to manage. My children's lifestyles which require hands on supervision or assistance. I am working part time, trying to support my husband's business as well and sometimes, I am on the verge of even losing touch with myself. Each day I try to find a few minutes so that this doesn't happen. Time to pray, time to write, read a book, knit,  a few minutes outside. I  know that my health is essential to theirs.

So on Saturday, I am presenting a session at the United Mitochondrial Disease Foundation Annual Symposium, a gathering of physicians and families from all over the country, brought together by the common need , the desire to know more about Mitochondrial disease. The desire to understand it better- and the desire to be understood.

I will be talking about blogging and journaling, how to do it- what it can do for you- how easy it is. How blogging allows you to express yourself while connecting with others.

And on this day, I know the people I meet, will understand the complexity that comes with living with mitochondrial disease. To them, I won't be the friend who doesn't call, the childhood buddy they never see. The relative that is always behind at writing a note,  sending a holiday card or staying in touch. I won't be the casual acquaintance who is often uneasy and awkward with small talk, especially  when I am worried , stressed or on a tight schedule.

 To these people I will just be the mom of two girls with mitochondrial disease, the one who writes about living with it, the one with the upbeat attitude, another mom who does the best job she can each day, just holding it together.

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.

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.

Blog post  www.specialneedsmom.com  Dec.2, 2009

There is a lot about my life that separates me from other moms. Enough that often I feel as different as my special needs child. My husband and I have two children with a rare genetic disease, a disease that is hard to explain-and harder still for  others to understand. It’s called mitochondrial disease and Stephanie Shapiro of Atlanta, a mom with two children severely affected, recently wrote this honest account  for  CNN Health.

I have two beautiful girls, who are in many ways-age appropriate, but in other ways are not. Being their mom, means I have had to learn about generalized epilepsy, renal tubular acidosis, brain abnormalities and strokes, GI issues, anxiety issues, memory and learning issues, acidosis, retinopathies and blindness, even endocrine abnormalities. These are some of the symptoms of mitochondrial disease, the parts of the disease that are easiest to talk about. The every day.

I manage the everyday for my 7 and 9 year olds still, the way that newer mothers take care of their young. What time they awake in the morning, how long they have slept, the time lapse between meals and snacks, their daily energy output how much they have drank- even their bathroom habits- still. I try and determine when Zoe should use her power wheelchair, and when she should be pushed in her wheelchair stroller. I have to weigh the repercussions of letting O, now nine, stay up until 7 to watch a TV special, when I know she had PE today and she usually falls asleep around 6:30. Often I have to cancel an after school activity, a night time event- or   my husband and I must split up- as it is rare that both children can be out after 5 pm at night. I have come to dread declining the social invitations that sometimes are for these late hours at the end of the day, when the girls have run out of energy, and it just won’t work. It is awkward to explain, that we would like to come, but can’t- because whatever hour is appropriate for other kids, just doesn’t work for ours. My husband and I have a limited (non-existent) social life for the same reason.

The future is something I rarely talk about. When others ask me if the disease is progressive, it is like a blow to the stomach- that luckily does not strike too often. I have to focus on the here and now. I pray that our family will continue to thrive and do well. I am thankful that my marriage is not affected by the statistics of divorce that come with the majority of families dealing with chronic illness. Sometimes I am sad for the friends I have lost, the friendships that my lifestyle and the demands of family, I just can’t afford. There are days I am afraid, feel alone and days I am determined, and strong-it has changed who I am, how I manage, what I value, what makes me happy and what makes me cry. It has made me a better mother who does not take life for granted.

...there are lots of different types of people who read my  blog www.specialneedsmom.com . Over 15,000 visitors in it's lifetime, There are moms of special needs kids who have followed ,or found me in blogosphere,  There are people who know me, from all different places and walks of life ( My past life as  a  tough, aggressive, workaholic,  group publisher, at a publishing company for 15 years pre-children, still haunting me.. ( new friends from the American Adoption Congress keynote last year.. ) .

And often when I sit down to write ( projects in the work!) I think.. uh, don't want to post that.. I will sound like I am ... weird, whining, waxing philosphic, .. whatever. It's called blog fright, worrying what people may think.But guess what.. I am done. Life is what it is .And this is TOO GOOD to pass up. .

In the special needs community, there are certain stories, poems, cliches and sayings.. one of which , has been said to me many times.. "God (or Life, depending on your religious views..)only sends us challenges we can handle. ) This has been said to me , written, hallmarked, etc. But today.. Today it was my flippin' horoscope.. beginning with " If you feel as if you're under pressure..." Remember, Life only sends us challenges we can handle.In black and white, calling out to my Aries self.

Under pressure. Hmmm. I have pneumonia. Short of breath, tired. Kids are three weeks past their H1 virus, but Zoe is still run down, and tired. O is okay, excluding the fact that a concern over her enlarged thyroid and blood sugar levels is sending us for labs Wednesday. I Have a list of 3 other specialist appts. they are needing due to other concerns.. My list of things to do to long, my list of things I want to do, untouched. And Last night , I was up 6 times between midnight and 5 am. I am accustomed to 3 times per night, no problem. Sleep really is overrated people.. but 6 times?  Snacks, and milk are necessary due to the metabolic component, a couple bathroom runs, and there you have it! Time flies when you are having fun!

I have some writing projects pending. Marketing opportunities pending. Domestic duties that should be completed.. PENDING! and so much I want, need , HAVE TO DO..

So, I pick and choose, and do the best I can to make sure we  live a quality life. I cut myself some slack remembering I am not perfect. Mostly, I remember that in my heart it's God that makes it happen, and those challenges- presented to my overly capable self? If you look closely, those complex.. challenges.. are really are just blessings, -- blessings that make life so much richer.

Before I was a Mom, I rarely cried. Maybe when I fought with someone I
loved, I cried. And when I lost someone I loved, I cried.

But now, you can see me cry everywhere. At field day, I cried. I cried
for the amazing power of what other children can do, and how much it
is taken for granted. The way a second grader can throw his body
towards a finish line, running at high speed. I cried then for how
joyously Zoe worked just as hard, traveled the same route in her power
wheelchair, squealing and happy to be at play.

I cry at school performances, marveling at the other children’s
abilities, and the way my child performs with the same excitement,
always exceeding the expectations. I remember at those moments how we
once wondered if she would ever walk or even talk. Sometimes a tear or
two will travel down my face, embarrassingly because I wish that she
could do more- not for me, but for the thrill of it. To be like the
other kids, just once.

In classroom orientations- I cry. The first time, the day of Zoe’s
vision loss diagnosis. I sat that night in a first grader’s chair,
listening to Olivia’s teacher speak-  my eyes seeking every brightly
colored picture and poster displayed high on the wall and wondering
then how Zoe would function in a classroom like this. And again, I
cried leaving a parent teacher conference, proud of Zoe and her
continued progress but grieving over a difficult conversation with her
teacher about “ life math skills for community living” and  the
complex questions about her future ability to read. The idea that Zoe
may have limitations with traditional reading is realistic, but
heartbreaking. Books are like food to me, something I devour to
satisfy a hunger. Books have calmed and soothed my hurts and worries
away, since I was a small child.

But there are also tears that are of peaceful relief- like when I was
speaking to the principal of Olivia’s catholic school. Sharing with
her my appreciation for the nurturing environment they have created on
their campus. “Please” she whispered,  “ You are making me cry “ as
her eyes were filled with tears too.

There are even tears of comfort, as my husband will pull me against
him in the dark of night, speaking softly in my ear, the words I most
desperately need to hear.

And yesterday my eyes filled too,  as Zoe cried for me excitedly-
opening her arms pulling me into a hug, as I joined her for a surprise
lunch at her school cafeteria. Earlier that day I wiped from my cheek,
tears of wonder and joy- as I went to mass at Olivia’s school and I
was drawn away from my moment of sadness by her voice and
her smile, as she sang happily enjoying her place in the choir,
radiating pure peace- as she has finally found her place.

I look forward to Saturdays as a day to relax-I try to squeeze in some writing time Saturday mornings- and the day is thankfully free of packing the endless stream of snacks, lunches and extra backpack necessities that each school day brings. Saturday night brings a date night of sorts- hubby and I steal our time where we can, with lovely dinners made just for two after the girls are in bed.

So this morning ,I tried some extra " sweetness" for Saturday's breakfast, and of course I plan on stealing lots of sweet hugs and kisses today too. On to the breakfast though.. it should please the pickiest of eaters.. Chocolate Milk French Toast-  3 slices of whole grain bread , dunked into a mix of one beaten egg and 1/4 cup of low-fat chocolate milk, with a dash of vanilla extract. Sprinkle with cocoa powder or mini marshmallows, for other all ages great ideas , especially for the hard to please tasters check this out.. Parents Mag -   Enjoy!

“ Sometimes I feel sad, when I pray for Zoe, I pray that she can do more things”-  

Olivia wrote this recently as part of a homework assignment. She will be 9 soon, and is beginning to realize there are many things that Zoe may never do..walk unassisted, ride a bike, a scooter. We have a diagnosis that Zoe will continue to lose her vision, leading to a complete vision loss. And although Zoe is learning Braille now, we don’t dwell on that eventuality.

I never knew that Olivia believed  Zoe would   develop these abilities in time. Zoe is 7 now, and it never occurred to me that Olivia was waiting for these things to happen. And to her Zoe is just Zoe. But it makes sense, kids watch kids grow up and watch them gain skills as they get older. And that’s what kids remember, how they have grown and accomplished more with each year of their life.

When I explained to Olivia, that helping Zoe “ practice” walking, may not change anything she had this look on her face that said “ How do you act so normal Mom?, how can you say that so easily – that she won’t walk by herself, ever?”

We talked about Zoe’s decreased muscle strength; how she can’t balance- stand unassisted for more than a couple minutes. I didn’t say that Zoe’s body doesn’t make the energy her muscles need, her brain needs, her eyes need, her kidneys need- all the things affected by mitochondrial disease. I didn’t go there because Olivia knows now, that her body doesn’t make energy correctly either, and we are trying to teach her to remember to eat and drink and rest when needed-as her body tires. What I don’t think Olivia understands fully, even though she is so smart, even though she and her sister share the same kidney medicine- is that she has the same deficiency. She was just luckier.

I am sure that conversation will come someday. I have it with strangers sometimes – someone asked me recently if the disease was progressive. Yes. And both girls have it?Yes. This woman gave me the same look Olivia did. Kind of a shocked look as if she was thinking… well how can you just stand there? How did you get dressed this morning? Put on make up?  How can you stand there smiling so calmly?  What about Olivia- she looks okay right now...

What I wanted to say was- yes I get dressed each day, and the reason I am wearing this bright pink t-shirt today is because it makes me happy, even thought it’s not trendy or in style.  And these are my favorite jeans, the most comfortable for loading the wheelchair, lifting Zoe, carrying the walker- running around throughout my day. And my makeup-well it’s not hiding much, not the tiredness or the lines, around my eyes now, , but that’s okay -. And I pray more now- for strength, for happiness, for peace and that’s what  keeps me calm. As mothers we make a choice each day, and it affects the whole family. I choose to make the most of today , whatever it may hold. 

  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)

It’s Spring Break, and while others are scooping up recession result vacation deals and leaving sunny Scottsdale behind- we are at home, enjoying the comforts and taking care of business.

Usually I protect the kids vacation time. Even if we stay home, we make each day a holiday -with fun out of the ordinary stuff. This break however, we needed to catch up with a variety of annual check-ups, a therapy appt, and other miscellaneous health care appointments. The girls have missed a lot of school lately, and I couldn’t justify not taking advantage of their open schedule. So in between, we steal our moments.

Time spent in the backyard- new sand & toys in the sandbox! Croquet golf on the freshly cut grass,chalk drawings on the side patio, enjoying bottle after bottle of new bubbles! Chocolate ice cream in pink and green cones. new pet Betta fish- ( Daisy & Sparky!) A trip to our local Build-A-Bear store , spring sprinkle donuts, a leisurely visit to our local library- with Zoe getting her first library card and proudly writing her name on the back, then sitting in her power chair “self- checking “out all of her books and mine. “ No, I am going to do it myself!” She told the nice library aide.  Washing the dog and getting soaked in the process.. well you get the point.. good clean family fun.

 And in the midst of all the normalcy, I try not to focus on the scraps of soberly spoken statements from the doc's we have seen.. " It may take a year or more for her (O) pre-ulcerous stomach to heal .. It could be an uphill battle with her body producing excess acid from the mitochondrial disease." .. The referral from Zoe's primary peds to a new local neuro.. " the subtle symptoms could be seizure related" our agreement.. to wait and watch. Late today will be in-depth eye exams for both girls. With Zoe's progressive retinopathy and prognosis for continued vision loss, and O's related risks.. This isn't an everyday check up. It is a day spent holding my breath until the exam is over, and we know better where we stand .. for now.

Today will be a day spent soaking in all of the happiness today has to hold- Lunch on the patio, time spent in the backyard, board games at the kitchen table, elaborate art projects with bead bracelet making, the girls mimicking American Idol , Zoe one handed in her walker while her other hand clutches a pink Barbie microphone, O- her face full of joy bouncing around  to the beat of the music, smiling , she is full of energy today.

Life is what you make it. Every minute, every day. And for now, I can’t think of all the what if’s. There are just too many that come with mitochondrial disease .

I know lots of other parents that compare their children, the curve of their face, the color and curl of their hair, their social differences.. " one that is silly and one so shy.." I never realized that I did this too, but in such a different way. Zoe, my youngest was "much more affected than her big sister Olivia" , Olivia was my " practically typical" child, although both have a diagnosed mitochondrial disease. Until lately that is.. until the last months that have led to the realization that Olivia just isn't as healthy as she used to be, that she can't walk as far as she used to, without some fatigue and that sometimes when she seems sad or overwelmed ...she is just not feeling well, is tired. There are more medicine bottles on the counter and in the fridge- and some of the everyday joy of being her mom has been replaced by  worry and sleeplessness. A restlessness and a pressing desire to know what our future may hold.

Each day we learn a little more. We find a different way to happiness, a new way to relax and recharge. Zoe inspires us all everyday , that even with challenges- you can succeed. Just the other day both girls were moved to dance- they began with Olivia leading the beat ,swinging her hips,.  Zoe  joined in too, doing it her way , tall on her knees rocking back and forth and moving her arms. Because Zoe  is unable to stand unassisted, this is how she dances sometimes, with pure joy and excitement , rocking to the music. I watched from across the room and soon they were standing holding hands, dancing together as partners, Olivia  holding Zoe's weight as she leaned into her. This was something new,  Zoe , quite smart, trusts few to hold her balance like this in an upright position and I had not seen her do this with her sister before, especially moving to the music . I realized in watching them, that they are not only friends and sisters who play dolls and Barbies and Pet Shop together, girls that make each other giggle and fall asleep cuddling and sharing secrets,  but they are sisters who get labs together, hold each others hands in comfort, even get sick together, I realized then for the first time , that this disease is just something else they share too.. another common bond.