And when you take me for walks and I feel the warmth of the sun , the cool breeze brushing by my skin , with you by my side.  

You ignore the words of others, telling you what I cannot do- and then fill the hours of every day telling me what I can.

Every day you see other kids -  doing more, still  you choose to celebrate me.

Pushing away sadness, you focus on the hope of my future , you let my small simple steps, lead us forward. 

Never standing still, always in motion- You move before me , your planning-  protective and positive, prepares me for success- meeting new people, and new everyday challenges. 

..and Mom, in case I ever go- before I can whisper my words of thanks, or wrap my arms around you.

Know what I know-that before you someday soothe me into heaven's sleep.

With you, I live the fullest life and I see the world, through your understanding eyes.

And with your gentle touch you fill my life to overflowing, with the greatest kind of love. 

Written by Suzanne Perryman, www.SpecialNeedsMom.com

 

 

A Mother's Day Letter for Special Needs Moms

I start and end each day thinking about my kids, my mothering,  and I always question if I am getting it right?  Like most other families, we have our normal moments of fun and games and everyday silliness, but we have the other moments too- when kids are tired, and stressed and there are tears. Times when we have to talk about medicine and doctors and how we are feeling, and then decide how to best handle it. 

We shouldn't second guess ourselves, but we do. We should do more of celebrating the small moments.

In our house, we get up each day and just try our best. Something I have always taught Zoe, my youngest daughter, affected by mitochondrial disease and her big sister, O - now in high school. We may not feel good at first, or we may not achieve what we hoped to achieve that day, so we try our best and we adapt and adjust.

I don't know why I never considered this philosophy for my own mothering, the idea that just trying my best is good enough. 

Yesterday was my birthday, and for the first time since her early childhood, Zoe's big sister, wrote me a letter via my blog, below.  I want to share with other Mom's of special needs kids too,  because it was written from the perspective of the older teen sibling. I want you to read her words and know that all those small moments? They add up. And that sometimes, just doing your best IS really good enough. 

 

HAPPY BIRTHDAY MOM ( Originally posted by O for my birthday) 

    
This is not Suzanne. This is her daughter O (don’t worry she knows I’m posting this). It’s my mom’s birthday, so this is a mother appreciation post (half revenge for the times you've hacked my Instagram/Snapchat). Funny story, my mom actually forgot how old she is turning, so she had to do the math. My mom is the best mom, in my opinion, but I’m biased. My mom has done so much for me. Ten months ago, I started high school and I came home the first day and cried about how hard everything was. She told me I’d get better and everything would be okay. She was right, like she always is. Now, those hard classes aren’t too bad. High school isn't the only thing she's helped me through. She helps me through everything, and I love her to the moon and back.

            This is actually part one of my birthday present. I think I'm going make a coupon book for hugs and laundry folding. In addition to cooking and mothering, my mother is great at spoiling shows for me. I’m sure some of you have read her “How I Can Connect to Kristina from Parenthood,” article. Well I'm on season 2 of Parenthood and she sent that article to me. Spoiler alerts were not given to me before I read it. Thanks, Mom.

             My mom does do a lot for me. She recently chaperoned my show choir trip to Anaheim. She sat through lots of sing alongs, Hairspray, complaining, and laughter just to make sure I felt well the entire time and to watch me do something I love. We also went to the happiest place on earth for the first time. She says she didn't like it, but I know she secretly did. I'm so glad she was there the entire time, especially because I was so proud to be on that stage and I could tell she was too.

On her birthday today I would like to make the point that my mom is my favorite person in the world. I'm so glad and thankful that she is my mom and I couldn't imagine a world any different.. And Mom, I love you. I hope you enjoy your special day. I love you, Zoe loves you, and Dad loves you, too.

Xoxo,

O

Saturday mornings at my house start with delicious sleepiness. Not to be confused with actual sleep, this is simply the act of allowing myself a slow Saturday start, being awake and sleepy and not feeling the pressure to be productive. After my coffee, cruising the news on my Ipad, and feeding the kids breakfast, I reach for the remote for some Ree Drummond time. 

 Just like her books and blog, it is the celebration of her lifestyle and the beautiful images that I find so relaxing.Ree opens each Pioneer Woman, Food Network show reminding us of her roots, introducing herself “ I am a Writer, Blogger, Photographer and Mother”, and that is who I connect with, this same woman who welcomed bloggers at the Kickoff Keynote at BlogHer’ 2013.

After my daughter Zoe was diagnosed, I would find myself in the middle of the night at my bookcase searching for the right book. I had filled more than two shelves, overflowing with books about understanding the special needs child. Books about epilepsy, sensory disorders, inclusive education, cognitive issues, and in a way.. all of these books were helpful. Reading all of these books taught me to parent with more confidence. Yet none of these books helped me to feel less afraid, or less lonely, because these books weren’t every day, real stories, about simple moments of parenting a special needs child.

I wanted to feel encouraged and needed to be understood. I was feeling left out in my social circle of typical moms and craving the common bond- of knowing another Mom like me, living a similar life. 

Women everywhere have always talked about motherhood and connected with a common bond; in the produce aisle at the grocery store, in the waiting room at the pediatrician’s office, the hair salon, and thanks to blogs and online communities.. on our laptops and Ipads. We are experiencing moments of affirmation, understanding,  even comfort if that is what we seek and it’s happening when we share our stories. 

I held my first daughter tight against my breast as I watched the Twin Tower tragedy unfold on television. Tears dripping onto the soft red curls on her infant head, she slept soundly, as I held her tighter and tighter, believing this would keep her safe from the terror at hand. Innocently she slept, unaware of my growing grief,  only awakened by the fear in my voice , as I phoned my husband, describing minute by minute,  the unimaginable images.

It was the terror that every one talked about that week. The true stories of the heroes, took weeks, months and even years to be told. News events were still reported then, in the paper, on tv and online , at the time of 9-11,  social stories were not “ shared.” 

When my daughter Zoe was little, I looked to the doctors to forecast her future. After all , they had the clinical experience from thousands of patients , and I was the first-time parent of a special needs child. I  would cover Zoe’s baby face with kisses, all the while wondering, “ Will her words ever come?” Will she ever walk? The doctors were uncertain. 

As Zoe grew older, she missed  “ milestones” , yet amazed us with her tenacious achievements. We learned to embrace her uniqueness,and I found peace with the fact that as her Mother, I knew her the best. 

I am fiercely passionate about what happens in my home, and the family life we make. My mothering, my marriage- the relationship we have with our children , how they feel our love, and the connection we share. I am not aiming for perfection, and it has nothing to do with Zoe’s special needs and acceptance. It is all about belonging, I want my kids to know that family is a place where they belong. I am adopted. 

I am an adoptee, I have searched for and found my birthparents. I was lucky enough to unravel the truth behind the false birth certificate I grew up with. All of my original  records remain closed,( for now in the state of Ohio ) yet still I was able to first find my birthmother, who told me the story of my “ famous” father. I was able to reunite with my birthparents and find that part of “me”. I was even fortunate enough to co-present with my birthfather, the keynote address at The 30th Annual American Adoption Congress , Adoption Network National Convention.

My girls are twenty months apart. " O" the big sister, is almost a teen- she wears wedge flip-flops, designs elaborate doodle drawings and can master most online games; All enviable accomplishments to her little sister, Zoe, who does her best to follow in her sister's  footsteps. Where " O" can run , Zoe uses her walker. When the girls do "" Just Dance 4" on the Wii, Zoe has some pretty mean moves that are meant to model the spins and bounces her sister effortlessly exerts. The girls share the same medical diagnosis, however in our house, O is the " typical " kid ,and my expectations for her are great, maybe maybe even sometimes..unrealistic. 

Olivia was about 8, when we started talking in detail about Zoe's diagnosis. It was then that I realized through O's little girl eyes, that she was expecting Zoe to get better. The medicines, the therapy appointments, even doctor's visits.. were all meant to make Zoe better, help her learn to walk and speak clearly. O was just waiting for it to happen, and waiting and waiting, until one day when she asked me if it ever would. And I told O what I knew to be our truth,. I watched her eyes fill with tears and waited for her words of grief, and instead heard her little girl voice ask" Does Zoe know, Mom?" She was protective of her little sister, trying to imagine if Zoe knew this, if Zoe, with her great  love for life and easy laugh, knew this to be her future or if there was more hurt to come.

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.

 Well, technically the question in the packet of papers read “ What frustrates you most about your child?” The questions were typically brief and non-descript and this was the only question that made me pause, put down my pen and sigh. There was less than one line to complete my answer, not anywhere near enough enough space to tell my daughter’s story. 

  It was laughable really, that someone would ask such an open ended question that sounded so insensitive, at least to a Mom like me. The packet was specifically written for parents of kids with special needs, the question and answer process designed to know my child better.. but frustrates? Typically, when my kid misbehaves there is a  “wiring” issue involved in the behavior.. processing, impulsivity, fatigue etc. There is nothing about my daughter Zoe that “ frustrates”  me, as  in.. “ gets on my nerves, drives me crazy, or really *#**#$* with my day.,..yet really... now that you ask.. almost EVERYTHING about Zoe FRUSTRATES me.

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. 

                                     

 

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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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. 

My girls have had a ton of doctors appointments over the last ten years. And something I have never really shared before , is that sometimes I feel lonely doing them all by myself. They are a long process, as you Mom's know. The driving and the waiting of it all.  I am a practical, efficient kind of gal though, and it has never made sense to have my husband leave our small business unattended. It was only after seeing other Moms in waiting rooms, accompanied by BFF's, or their Mothers, that made me secretly wish for my own willing accomplice, just to hang out with me.

There was this one appointment for Zoe, that I won't ever forget. This one appointment, that  I especially wished someone had shared with me. Not just because of the tears shed on the drive home, but really , just to share the clarity of what I DID see on that drive home.

 

Dear Mom,

Even without my words, 

you have always known my needs. 

When I am hurting or afraid, -

frustrated or fatigued, 

You gather me home 

into the safety of your arms. 

You know what makes me smile, delights me and fills my face with light-

You make my happiness.

When you sing my favorite song, 

 and sweep the softness of my favorite blanket, across the curve of my cheek.

When you take me for walks -

and I feel the warmth of the sun , the cool breeze brush against my skin.

 You disregard the words of others, telling you what I cannot do-

 and then fill the hours of every day- 

Telling me what I can.

Every day you see other kids -  reaching further-

Yet you celebrate me

pushing away sadness, 

you focus on the hope of our future

Letting my small steps, continue to lead us forward. 

Never standing still, always in motion-

You move before me.

Your planning-  protective and positive,

prepares me for success- 

meeting new people, 

new challenges, 

learning new worlds.

..and Mom, in case I ever go-

before I can whisper words of thanks, 

or wrap my arms around you.

Know what I knew-

before you soothed me 

into heaven’s sleep.

 With you -

I live the fullest life-

I see the understanding in your eyes.

the gentleness in your every touch-

as you fill my heart - with the greatest kind of love. 

 

 

  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.

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.

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.

 Since the kids were little, Saturday and Sunday have always been referred to as.. " Stay at Home Days." In effort to help Zoe, learn her days of the week, I have been assigning a similar sounding phrase to the name of each day. Friday is " Fun" day.. she has free choice time in her second grade class, and we do Family movie nights here at home.

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)

 

 

 “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.

There is no better place for this confession than here. Like most moms- I experience many moments of pure bliss- and those other moments that are down low- you know, those times when you just aren’t sure what to try next.. how you are going to make it better. And at many of those times, I confess.. Google was there for me.

It started with my desire for pure efficiency. Google was the fastest way to find out . And I have googled a lot. I have googled favorite authors, hard to find items to purchase, news stories, long lost phone numbers, recipes, puppy training questions, herb growing recommendations, art projects, lyrics to the kids favorite songs..

I have also googled abnormal lab values, while I worried and waited impatiently for the doctor’s call. I have googled the prognosis for my daughter’s retinal deterioration, to see the collected Google opinion about how much longer she will be able to see. I have googled myself (okay who hasn’t) but only after my Fathers’ book Crossbearer was reviewed and  New York Times book reviewer Christopher Buckley  referred to me as the “ out of wedlock daughter” , but the all time low was when I googled this.. “ how to make 8 year old girl happy” .

Seriously. (seriously as in, that one word made famous by Gray’s Anatomy that conveys disbelief, amazement, defeat, acceptance, condolence) I actually googled “ How+to+make+an+8+year+old+girl+happy.” Seriously.

I missed her smile, her charm, her affection , the way she shimmited across her bedroom floor as she sang her favorite songs- the way she used to start her day by sleepily climbing into my lap in the early morning, her body still warm from deep sleep, her eyes only half open as she wrapped her arms around me and settled into me. I missed her and I was trying everything. I went back to basics, more love, more sunshine, more backyard time- and when nothing was working I actually asked Google what I might be missing. Today she is getting better. New medicines, some new doctors- eventually we got to the bottom of it. But along the way, there were times when she looked terrible and I felt worse.

Here is what Google won't even try to tell you. How you should answer a curious child who approaches Zoe and I , loudly questioning- “ Why can’t she walk?”  What to say as the child stops and stares at my intelligent, sweet little girl, whose face falls as she realizes that the child isn’t just saying hello but  instead staring curiously at her walker or wheelchair . What I am supposed to say as the child looks at me m staring past Zoe  as if she isn’t even there. And  I feel for the parent standing there awkwardly , mouth hanging open- but I feel for Zoe more. And I don’t want Zoe to feel any more different than she already does, I don’t want to call attention to what she cannot do- I don't want to talk about what challenges her. And so for this question, there is no perfect answer. Even at Google.

  

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.

I am not sure when it gets easier. There is no road map, no instruction manual. You just do your best to get through the day by day, living life to the fullest. We go months, just living a typical family life and then something else comes along.

Things changed for me with Zoe’s original diagnosis, and again with Olivia’s. I look at life differently and am unable to explain how grateful I am, for the even the smallest graces .

Then one day ,, I took Zoe to the eye doctor- and the diagnosis was that Zoe would lose her vision. Looking out the car window on the way home, I saw everything anew, beginning with the simple blue of the sky. I tried to imagine not seeing any of it ,and felt fear. I went to a school orientation that night for Olivia, and sitting in the brightly colored, decorated classroom, I wondered if Zoe would see these things on her classroom wall, when she reached first grade.

It has been a year since that time. We have done everything we could to prepare for the possibility.

But along the way, we also saw two other doctors. Two other expert doctors , that disagreed with the first diagnosis. Two other doctors that did not feel Zoe would lose her vision. And with the score 2-1, I began believing that it would not happen. We have been learning Braille, and giving Zoe the tools she could someday need, but in my mother’s heart, I just did not want to believe it could happen.

And then last week, we saw another eye doctor, to study Zoe’s vision function . Although she did not want to be involved in the medical debate, she felt compelled to tell me that she saw optic nerve atrophy when she looked in Zoe’s eyes. She also saw damage to the retina. . Two irreversible things that lead to vision loss. So there it was .Game on again, score 2-2.

Since that day, I have been moving through our daily life. Appointments at school, working – homework projects, quiet late night dinners with my husband, board games on the floor with the kids, snack at the kitchen table each day after school.

And when my eyes rest on Zoe’s face- so grown up with her newest pair of glasses, I feel the shock of the scream that reverberates within me. It is right there under the surface. So present, that I am surprised that others cannot see it, feel it, even hear it sometimes. It is a deep painful cry of grief, the possibility of things to come. The unbelievable chance that in addition to not being able to walk, someday Zoe might not even be able to see; the books that she loves, her favorite doll, the pictures that we draw for her and the pictures that she has just begun to draw for us.

I have been through this grief before. I know that it will fade, and when it does I will feel whole again. And because I know that you can’t mother this way, or live fully this way- I bury it within me.

It takes all my effort to focus on the positive in each day; The bright sun that rises in our desert each day, the warm spring breeze that has begun to blow , the little girl smiles that greet me each day, the hugs that envelop me each night, all of these things that in time will cause this grief to fade.

She is sitting poised and purposefully, leaning forward with intent as she exams the controls on the arm of the junior sized wheelchair. Her blonde hair is pulled into pigtails, a popular hairstyle with the preschool play set and her pink t-shirt is embellished with rhinestones and the title “princess”. And she does, look like a child princess who is perched upon her throne. She looks confident and mischievous, as she listens to instructions from Atalie, her physical therapist. Within minutes her four year old hands grasp the joystick control and she is moving past me down the hallway.

“She can’t walk? “ Why does she need the wheelchair” “How cute she is!” The questions and comments play in my mind as I imagine what strangers will say now, when they see my daughter, Zoe navigating her power wheelchair at the store, the mall or our neighborhood school. I continue the imagined conversation now asking myself “Why are you emotional now, come on... you knew this was coming at some point, didn’t’ you?  You know it is a good thing. How much longer can you carry her and her walker when you go places? She looks happy, why are you feeling this way?  I feel stunned, raw and hurt and even vulnerable. As if I am learning for the first time about my daughter’s diagnosis.

I called my husband on the way home from the physical therapy appointment, with a naturally easy and honest excitement in my voice; I told him the big news about the power wheelchair experience. Zoe had loved it and was disappointed when she had to climb off the chair and return to her little old lady aluminum walker. She used her walker easily, as she walked within the limited areas of our home, and other outside smaller places. Her strength and stamina were limited in larger environments, so as we explored places like the mall, the grocery store or local library, she was captive in her special stroller, dependent on me to push her in the direction I thought she wanted to go.

He paused for a moment, before he responded to my news. And in that moment, I knew his heart was hurting as he struggled. “Oh, well, we knew it would happen sometime. I just didn’t think… She really liked it?”  He was recovering from his own disappointment quickly and within moments his voice was upbeat again. “Bittersweet” I said, “Isn’t it?” The reality was harsh, but the reward of regained independence for Zoe, was very, very sweet.

I struggled to settle my own conflicting feelings. I phoned a friend the next day, and told her the news. Pushing my emotions aside, I touched on the positive aspects, how quickly Zoe learned, how excited she was, how she smiled. I heard my friend’s sharp intake of breath, immediately following my announcement that Zoe would be getting a power wheelchair. There was that pause again, and then an “Oh!” she sounded a little embarrassed by her response. She stammered a bit. “I mean…” This is a friend whose eyes often fill with tears, as she listens to the details of my daughter’s diagnosis. I know how much she cares. “It’s okay, “I assured her. “I understand completely.”

I sit and I sigh. In the quiet early evening, after my daughters are tucked into bed, the house is restored to order and the lights are turned down low,I sit and I sigh.

I sigh because I am weary from the physical act of being in motion all day- spread thin between appointments, a desk buried with work, a home that needs tending and my young daughters ' constant need for hands- on mothering.  I sigh , and with my exhale I shed my memories of the tears, and cries, and frustrations from the day. I release the stress of worry and tension with a sigh so dramatic,  I imagine it is heard for miles. But really it is soundless, or perhaps it is a simple "whoosh" of air, suspended.

I sit in the silence. I am amazed that my breathing is soft and even .Within me, my sigh echoes loudly shouting my emotion.

My husband is beside me. I am tired but I reach for his hand, and he gently opens his, accepting my tight grasp. We sit like this in the quiet .His eyes follow the images on the television across the room. My eyes still and closed begin to visit the memories of us in my mind. I can see days upon days, full of lazily spent hours. Sitting in the sun, reading,and napping, creating wonderful meals from complex and precisely detailed recipes. We talked , and talked .. Wasting the words and the quiet as if we had all the time in the world. But we didn’t.

Now those quiet and open opportunities for deep conversation are rare and simple treasures. I sigh, a short sigh of pleasure, grateful for the gift of his strong hand and our physical togetherness.

Now we have our daughters. And just when Ithink they are extracting every little bit of life right out of me- they burst into the room overflowing with smiles and excitement and fill all of the empty, open spaces with joy.Just when I think that life with them will surely break my heart- I am unexpectedly showered with their love and happiness , their desperate need for my presence- so much so that my heart feels as if it may burst with fullness.

I sit and I sigh.

Recently our family spent a much-needed weekend away at a cabin up in Northern Arizona. The cabin was spacious, and comfortable. While Daddy was flyfishing for a couple of hours, the girls and I painted watercolor pictures that we hung above the dining room table.We explored inside and outside of the cabin .It was nestled atop a slight hill, with a dirt road leading down to the main area where barns held the horses and cows that worked the ranch. The yard surrounding our cabin was small, so we decided to head down the hill. Zoe was in her Conaire cruiser stroller and Olivia kept pace walking beside me. The first obstacle was the four feet width of metal grates blocking our path. A cattle guard, and crossing it was the only way down the hill. The grates were far apart, so I carefully held 45 lb Zoe, balancing as I stepped across sideways. Next the stroller, and finally I hold Olivia’s hand and we cross together. We begin pushing Zoe down the hill and the moist dirt is soft and deep and resisting, but we push harder and soon we have made it to the bottom of the hill. We meet Daddy there, and suddenly horses begin galloping toward us. It is feeding time in the field before us, and horses are arriving from all directions, at different rates of speed. It is impressive .Soon there are more than twenty, gathering to eat. The children are squealing with delight. We celebrate our good fortune that we have come upon such a spontaneous, yet awesome event.

The next day we travel down again to the fishing pond. There, Zoe holds onto my hands so she can walk to the ponds edge. I am her legs, taking her somewhere her walker cannot go. I sit on the damp ground, supporting her waist while she stands, learning how to toss rocks into the pond. Olivia is receiving her first fishing lesson from Daddy. Within minutes, Zoe becomes impatient for her turn and begins pleading “ ….ish ….ish…” She wants to hold the pink Barbie fishing rod and start her lesson, too.

Had we stayed inside our comfortable cabin that first afternoon, waiting for Daddy’s return- we would have missed the awe inspiring show of the horses at feeding time. But from the windows in the dining room where we sat painting, I could see the barns at the bottom of the hill. I knew it would be a challenge walking our way down, but I wanted the girls to experience more of the ranch. An afternoon we will always remember, I am sure. I hope the girls remember the challenges,too. A simple lesson that you have to persist –when there are obstacles in your way. Even if they are physically challenging, the reward for your efforts can be great.

When Zoe was just a baby, we sought the opinion of the professionals involved in her care. Asking her physicians and therapists  “ What are your expectations? Will she ever walk,  or talk? They were the experts, back then, and there was only their opinion.

And so we held her, nurtured her, worked with her, cried with her, fought for her and protected her. She has grown into a happy, three-year old little girl. And now, I believe, it is the expectations that we,her parents have of her- that will define her. We have become the experts. We can empower and strengthen her, by helping her develop her capabilities. By expecting her to try, before she determines she is unable to accomplish something. By expecting her to practice, before she determines she cannot learn a new task. By expecting her to pursue her interests, experience new things and develop her abilities and talents so that she will live a passion filled life.

I struggle daily, reminding myself that she is no longer a baby, a toddler. She is a little girl, and for her to grow and develop to the best of her potential- we must expect her to accomplish certain things.

For today, I have begun with a blank sheet of paper. I am making a list of everything I do for her each day. I am specific, even with the small tasks- cleaning up, returning objects where they belong, turning on/off the lights in her room. Some of these things, we are helping her learn how to do for herself. And many are long term goals. But some of these little tasks, the ones I may overlook and not think about as we push through our daily routine, she can do. Albeit, with adaption, more time spent, and maybe not to perfection. First I cross off from the list the things I must do for her. Changing her diaper, putting on her shoes, administering her medicine. What is remaining, are the small tasks she can do for herself. This is what we will start with. These “ mini” tasks will be my starting expectations for her today. Something for her to accomplish, and something for us to celebrate. Just the beginning of a special needs mom, understanding what my child needs……. expectations.

It was 5 am and after awaking to a lonely, empty bed, my good husband brewed the Starbucks coffee and went outside to pick up the paper. A few minutes later, he found me asleep next to Zoe, half out of ( as only my 6 ft. body could be) her less than twin size bed. " Hey Suze" he called, "you guys are on the front page of the paper." I drank a good half cup of the hot brew before I dared to read the story. You can read it here.

I have been interviewed by a few reporters in the last two years, on subjects important to me; the pediatric medical community, advocacy for children with special needs, and of course, mitochondrial disease- which affects both my girls.

My greatest hope is that the words that make it into print , reach into peoples hearts and minds- to motivate. That the words motivate physicians -to continuing listening and learning. That the words motivate teachers-to raise discussions, ask questions and learn more about our children's challenges. That the words motivate parents- to find the proper resources to help their child and to help them find the energy and determination to keep trying fighting.

A lot of the " great" advice I thought I offered- did not make it into this article, but our story of persistence did. So did the words mitochondrial disease- and the general theme that  sometimes the Mom is right- even when no one else agrees, will hopefully empower other families.

This article portrayed the image of a strong woman. Sometimes I am. Right now, however, I feel vulnerable again. Tomorrow, we travel as a family returning to the Cleveland Clinic.

There will be tears, and needles, and anesthesia, and scans- and a very gifted doctor caring for our kids.

We are walking the same path we traveled with Zoe, a year and a half ago. But this time it is Olivia and Zoe, more tests, more doctors and finally more answers. This time, I am not weak with worry or even seeking validation. I am just thankful that we have somewhere we can go to get the answers to our questions and care for our children. I am in love with their smiles, and their tears- and the kisses that they give me each day. And I am thankful that our journey of persistence was ultimately, successful.

Zoe was standing right next to me in her walker, balanced and ready to scoot onto the sidewalk. Olivia, her big sister, was alongside her waiting for my signal to go. Turning my back for less than a minute,I grabbed my bag from the passenger seat of the car, shutting and locking the door. And at that moment, I heard it. “Wham!” .

I spun back around to find Zoe , slightly tangled , but unharmed, laying on the ground. She had fallen back on her walker. Olivia’s arms were outstretched beneath her, cushioning her from the hot, hard ground of the cement parking lot. “ I caught her, Mommy” said Olivia . Her voice was slightly shaken but she was grinning. She looked down into Zoe’s surprised face as Zoe reached out her arms for her big sister.

In my kitchen, on the refrigerator, hangs our medicine chart. There are 12 boxes to be checked daily. Twelve times each day that require discipline, patience, organization and a few minutes of prep. I used to be resentful of this chart, the intrusion and hold it had on my life. Until my mother pointed out that maybe I should instead,be thankful. That in the same way I appreciate Zoe’s 7 weekly therapy appointments,  I should be thankful that I can give my children something to help protect them from a progressive disease , to protect Zoe from experiencing more seizures, and protect Olivia from the symptoms of asthma. In that moment with my mother, it changed. And now I am thankful that I can do something to protect my daughters.

The other night, I was busy in the kitchen. My body in perpetual motion, my mind concentrating on the tasks at hand, when my husband called to me from the patio. A storm had just passed- he was outside grilling fish for dinner.“ Come quick” , he said. From the sound of his voice, I thought it might be a passing airplane or something to see in the desert behind our house. “ It’s a rainbow, come here.” He urged. Still distracted by the chores I had set aside, I went. I looked and just barely ,could I see the arc of colors streaking the sky. I went to grab my camera.

Later in the late night quiet , I studied the image of that rainbow on my computer screen. Just faintly, you can see the rainbow against the backdrop of the desert sky. I was thinking about Zoe’s fall, the conversation with my mother, the letter I had to write to Olivia’s school about her illness, the conversations about new tests and doctors appointments for Zoe.

I remembered then, something I once read about rainbows. How they only come out after the rain, and you have to be watching for them. That you have to be looking up, searching the sky.. because they are only visible for a short while.

I realized then… The moment I saw Zoe reach for her sister after her fall, the conversation with my mother, listening to her gentle reminder.. Both of these instances….. were like a rainbow.

A treasure, that I might have easily missed….. had I not been looking.

This is the landscape behind my house. A natural piece of desert that exists just outside the fence of our backyard. In the morning, I sometimes try to slip outside with a hot cup of coffee just to take a look.Only two months ago, it was blooming and unusually green. Now, tired and thirsty- it is stark and compelling in the morning light. The monsoon season is here and I imagine the desert is thankful for the refreshment of rain.

In brief, the kids and I had nine appointments during this past record- hot week. Six of the appointments were Zoe’s regular weekly therapies plus three doctors appointments (one bloody ear infection, 2 cavities and one continued bout of asthma). The week ended with new prescriptions, sleeplessness and a middle of the night illness. Then it started to rain.

Looking back at the week, I began to measure my successes. I was able to accomplish some tasks for my business. Some days the guilt and pressure of what I am challenged to accomplish is heavy- but the pleasure of small accomplishments can be so sweet.

And although the appointments this week were taxing- Zoe is making slow but steady progress in her therapies. Some moms I know battle their concience questioning how much therapy is too much. But for Zoe- it is working.

And for the first time in over a year- Zoe battled a nasty infection – that did not send us to the hospital. The doctors were kind- the medicine efficient and her body is strong. Olivia’s asthma seems to be improving with the new treatment plan and it is a relief not to hear her coughing.

Yesterday I was reading a compelling blog that referenced a “best/worst moment”. Defined as a time or incident that you viewed as “bad”- that in fact turned out to be good. Next, I read with interest an email from a special needs mom asking the question “Am I in denial because I don’t view my child as severely delayed?”

All of these things were on my mind late last night, as I watched the rain coming down on the desert behind my house….My week…- including the memory of my husband bathing Zoe in the middle of the night,…. that “best/worst moment” blog, the mothers’ questioning email.

At that moment, I could feel the heat of the desert. I could feel the tired, dry desert embracing the refreshing rain. That’s when I realized it’s about perspective. All of it. The best/worst moment, the mother looking at her child, my week.

It is our choice..We can feel barren,dry , even tired like the desert or we can just be thankful for the rain.

Side by side, my husband and I enter the double-doors. We are, as always when we come here, hand in hand. We make our way through the foyer and into the double doors of the church. We move single file down the aisle. I am following behind him .He stops at our regular pew, and steps aside. I briefly genuflect and move past him to take my seat. He kneels in prayer before sitting. We are in God’s house. And here, hiding from my own thoughts, masking my emotions is impossible.

My faith has always been a quiet constant in my life. So quiet and so natural- that somehow along the journey with my children and Zoe’s illness- I had almost forgotten about God.

I pray- saying the maintenance type of prayers you learn as a child. At night when I fall asleep, before Zoe’s medical procedures- the standard, memorized prayer here and there. But that is all.

I am focused on other things. Making a difference with my children’s care. Being an advocate. Finding answers.Maintaining my business. Managing my emotions and the reality of our discoveries. And in the midst of all this- there are times when I feel overwhelmed, exhausted and very much alone. In these times especially, I have forgotten about God. It has never occurred to me that he is there. Waiting for me, willing to offer comfort and strength.

I am not good at asking for help. In my world, it is the last resort and never my first thought. In times of crisis- my first thoughts are how can I fix this? What can I do to make it better? I look for answers and concentrate on actions. Something unseen like comfort and strength- and God’s omniscient presence appear too passive in these moments.

Sitting in church, the music begins and I know. There is too much quiet- too much empty space alone with my own thoughts, emotions and fears. Not enough distraction. We have shared many special memories in this church. My husband and I, newly married, worshipped here together before our girls were born. We celebrated their baptisms here in this church- with family and friends. When life was simple. Before we knew.

On this day, across the aisle- there is a little girl, about 3 years old. Her hair is a fine blonde like Zoe’s and she is wearing a dress similar to the many that hang in Zoe’s closet. This little girl is fidgety. Fidgety in the way I wish Zoe was .This little girls muscles are strong, her body is healthy. She is energized in the way Olivia hasn’t been lately. This little girl is kneeling down and standing up. She is walking across her family up and down the pew.

I hear the scripture, the Deacon reads the gospel and the new pastor gives the Homily with the message “do not fear”, Sometime before communion there is a song with the words reminding me “you are not alone”.  I see the tear stains on my blouse, and my fingers wipe away the wetness on my cheek.

My husband places his hand on my knee. I realize then- the very resource I had forgotten all about. God. Seeking comfort and consolation- from God. Putting my trust, my frustrations even my fears in his hands with the hope of finally finding peace.

There in that church I began my own prayer. Not the simple memorized verse of childhood- but something for me.

My God, I began. Be my strength and my comfort. Bring peace to my hurting heart. And teach me how to ask for your help. – Amen

I was in the shower. Trying to deep condition my hair for the first time in months .Olivia my oldest was 3 and suddenly her nose was pressed against the shower door. Her voice rising above the pounding hot water insisting “Mommy, milk!”  In the few minutes of quiet, while I hurriedly finished, I realized with absolute certainty that I was right about Olivia’s little sister, Zoe. She was very delayed.

Zoe was 15 months at the time. In that stage of development where some children pull ahead and do more- and some children do less catching up closer to the two-year mark. But it was in those few minutes, standing in the shower that I knew for sure. Zoe should have been approaching the start of high maintenance toddlerhood. The “I WANT IT NOW” stage. It wasn’t just that Zoe wasn’t walking or talking, or that she had just started to crawl a bit. It was her inability to express her needs. In that way, she was like an infant.

That is when I began studying the “milestone” charts with real purpose. These charts mark a child’s early development not only by gross motor skills, but also fine motor ,social and language skills. In a way, these charts served an important purpose, reaffirming my belief that the doctors should listen and pay more attention to my concerns.

Later in our journey ,these missed milestones, and Zoe’s continued delayed development confirmed her need for therapy services . These charts , my perseverance,and Zoe’s continued delayed progress did make medical and therapy professionals pay attention and treat her appropriately.

Without even realizing it, I eventually grew tired of the process of measuring missing milestones. I even stopped  looking at the charts and let my mothering experience take over.I started making my own record of new accomplishments, no matter how small or subtle.

When I would see a specific positive development- that was my mark as to her progressing development. She wants to wear a blue t-shirt every day! (Her sister preferred princess dresses, but the desire of preference began about age 2).  She is using pretend play by herself! Watching her play ponies exchange hello's. Zoe saying she wants to watch Dumbo- ( again!) These cues combined, told me she was progressing to the two year mark. It didn’t matter to me that she had just turned 3, I was celebrating her successes.

This is a much kinder, gentler way to live. I know my child is delayed, and other Special Needs Moms know this truth about their child too. Once this reality is known, is there really a need for us to measure? Isn’t it so much better to celebrate their success- encouraging their progress?

Zoe has many positive personality traits- qualities that are not easily measured on milestone charts. She is motivated, she is affectionate, eager to learn, happy and in her own way.. confident. Her therapists see this too. I think in some ways it helps them bond with Zoe which results in more effective therapy sessions.

But for the first time, these positive self attributes, the gifts that God gave her- came through and were part of a professional evaluation. Zoe's child psychologist completing her annual evaluation confirmed that she is 10 months behind developmentally- slightly further behind than last year. However, she gained IQ points and although still markedly delayed, this professional saw beyond her clinical scores and milestone charts.

She used many positive words to describe Zoe’s potential. She embraced Zoe’s personality, her spirit, her will, her motivation. Confirming these attributes can affect developmental success as much as an intelligence quotient. She told us stories of low functioning intelligence children progressing in mainstream environments- because of their personality and will.

As a special needs mom- my efforts to improve my daughter’s intellectual ability are limited.

I encourage her cognitive development. We practice therapy approaches in our home. We stimulate- we encourage. But there are structural limitations within her brain.

But as her mother- there is no limit in developing her spirit. I can encourage her confidence. I can positively influence her social interest, affection, behavior and nature. I can model tenacity and pray for her developing courage to continue. I can reward her will and effort each day. I can celebrate the gifts God has given her and teach her to celebrate her own accomplishments, just by being her Mom.

Night after night, I found myself standing before my large bookcase. I was searching for the right book. I have an extensive collection of noteworthy resource and educational books on the issues that affect Zoe.. Understanding the Special Needs Child, books about Epilepsy, Neuromuscular disease, sensory disorders, inclusive education, behavioral and cognitive issues. All of these books were helpful. They helped quench my thirst for knowledge and build my confidence. They taught me many different things about helping my child. Very few of these books were heartfelt, and none of them really made me feel less alone.

I found myself re-reading the forward and introduction to these books. I was even scanning the bio on the book jacket, looking for clues about the author. I was eager to find someone like me. Few of these books addressed my emotional needs. The desire to feel understood, less alone. The feelings of separation that a special needs mom might feel in a circle of typical moms. I was craving the common bond- with another mom, living a similar life.

Across the country right now, there are women discussing the subject of motherhood. They are connecting with this common bond. In the produce aisle at the grocery store, in the waiting room at a pediatrician’s office, at the hair salon.

They are experiencing feelings of affirmation, understanding even comfort if it is warranted.

Initiating a casual conversation about my daughter’s special needs is not easy. Finding someone who understands our life even more difficult. After a long day, in the dark of night and in the privacy of my own home- I was looking at my own bookcase searching for this type of solace.

This led me to write these stories, confident that other mothers would appreciate the words of understanding. That late at night, after a long day, these stories would comfort, and inspire and help these other special needs moms feel less alone.

Every mother has this moment. The first moment of awe usually comes when the pink bundle of wrinkled, soft skin is placed in your arms. As you gaze into your baby's eyes for the first time, you are thinking... I made this baby. These awe filled moments continue as you watch your child grow.

For me these moments come at quiet times. Unexpectantly when suddenly the perpetual motion of young childhood may pause and you find your child sitting still in your lap or curled up on the couch asleep. For me these moments are filled with great introspection.

I review my own checklist of good mothering.. Am I meeting her needs? Is she happy? Stimulated? Flourishing? When I look to Olivia at these moments I ask myself-Am I giving her enough attention, balancing her needs with those of her sister's?  I marvel at her beauty, her intellect, her spirit. And then, I thank God that Olivia is healthy. That she isn't affected by the same disease that has shaped her younger sister's development, and that she is able to teach her sister all that she can.

But that has changed now and my thoughts are suddenly different. They are deep and dramatic and so maternal that unless you are a mother, you may not even understand.

Recent changes with Olivia led me to have her tested for the genetic disease, mitochondrial disease, that affects her sister Zoe. The tests were definitive. Olivia has mitochondrial disease too. This means that her body's ability to produce energy is impaired. More tests are pending, but at this point we assume that she is most likely mildly affected compared to the severity of her sisters issues.

I now, am so curious about other mothers of children affected by genetic diseases. I wonder if their awe filled moments shift from time to time, as mine do. If they ever have these flashes when they look at their children- affected in different ways at different times- and feel pain. That deep, maternal ache when you realize that your child's life may be changed or threatened. That your child may experience physical pain or discomfort sometime in their life. That this child has not only inherited from you the color of their eyes, hair and the shape of their body, but also a disease that may cause them harm. A disease their children may inherit. A disease you knew nothing about.

Now, when those quiet awe-filled moments occur as I look at that child of mine. I still find happiness and thanksgiving, but there is also something new. A sliver of guilt. As a mother it is instinctive to protect my child from harm. But the burden of a genetic disease is great. I hold my child and I think... I made this baby.

Although I can’t see him , I know he is there. The problem is that he is at least 10 feet away, sleeping in a different bed. The very last place I want my husband to be. 

It is after midnight and very dark in the room.We are staying in a hotel, close to the hospital where our daughter  Zoe is receiving treatment . My husband and 4 year old daughter Olivia have flown in to join Zoe and I. Our final consultation with the doctor is tomorrow.

Zoe is having a rough night, so I am laying next to her in a double bed. .I can hear Olivia’s deep even breathing as she sleeps peacefully in the outer room of the hotel.

I am wide awake and agitated, and it isn’t because Zoe is sick or even because she threw up all over me the hour before. No, like many women across the country I am laying eyes open, wide awake , exhausted and agitated because of a man. My  partner of 8 years, the love of my life, my husband managed to irritate me before he fell into a deep and, judging by the sound of it, peaceful sleep.

Given the stress of traveling across the country, and the purpose of our visit- various medical tests and consultations for  Zoe’s mitochondrial disease-  it is probably not surprising that the cause of this upset is something completely trivial. However,due to the same stresses conceding to logic and reason at this moment is a challenge. After all, my husband and I have been apart for the last 5 nights, it had been a stressful week and tonight, I was looking forward to his arrival and the comfort of lying next to him as I fell asleep.

Sadly- the topic of our not-so-nice verbal exchange was nothing of importance. In fact it was caused by my fussing and caring a bit too much. In the midst of my trying to soothe one daughter to sleep, he was left with a  short  couch and no available bed. After a long day, he fell into a deep sleep . And, after finishing with my daughter and finding him, all 6 ft. 4 of him, laying half in and half out of this very short couch, I insisted on rousing him and moving one sleeping child so that he could sleep comfortably in the other bed. Which by the sound of it ( again) he is enjoying and sleeping in quite comfortably.

However, for my kind-hearted intentions and good wifely fussings, I receive admonishment from a an overtired guy who protests that he would have been perfectly comfortable sleeping the night away on an undersized couch. Go figure.

So I lay here awake, and wishing that I was asleep, curled within his arms sleeping next to his cranky self. Zoe coughs and I hope it is her last cough for the night. Soon she will be asleep and I will tiptoe across the room, lift the blanket and climb in bed next to my husband. There in my home away from home, next to him, I will find my own peaceful sleep and the comfort that I crave.

She is sleeping next to me. Her baby blanket is curled into a ball and both of her arms are wrapped around it. She holds it to her chest. Her pajamas are made of the softest fleece and chosen to keep her warm throughout the cool night, as she prefers to clutch her blanket rather than cover herself .. Sometimes she turns and through her half-open eyes sees me laying beside her. With this discovery she smiles and wraps her arm around my neck, so that the crook of her elbow rests in the very middle of the back of my neck. When she gathers me in like this –we come face to face with only a couple of inches between us. I can feel the hotness of her breath and smell her still -babylike sweetness.

She is surprised to find me in her bed. This luxury is reserved only for when we are away from home. In this case, we have traveled to see her special physician and complete the annual check-ups and tests that her doctor requires to monitor her illness.

As I lay next to her the early morning light is beginning to fill the room. I am optimistic that this visit will be rather routine as our family is becoming more experienced with her health issues.She is almost three. In just a few hours she will be asleep again, although this time, medically induced for her scheduled MRI.

Hours later I am seated in the waiting area. I hold her until the medicine takes effect and she has fallen asleep. I bend down and kiss her and hurry from the room.

So I sit now, writing.Restless. I say a prayer. I scan the newspaper. I step outside and call my husband who is just starting his day back at home , fifteen hundred miles away. I walk the halls and soon the hour wait is over.

I see them wheel her back into the recovery room. Her tiny body barely visible in the full size hospital bed they have placed her in. Experience tells me soon they will call me to be by her side as she awakes. Minutes later , I am still pacing the hall, I hover near the entrance to the recovery room . I can see the doctors leaning over her, watching her carefully. I see them apply a breathing treatment and I am concerned but not alarmed. Still not allowed to cross the threshold into their work area, I am frustrated. Finally, I am called in. Her cheeks are pink and her eyes are closed. Gradually, she awakes. She coughs and coughs and she lays on my chest for over an hour. Finally almost two hours later, she is awake and smiling. Groggy , she giggles for me softly.We are done for the day.

Check back soon for 4 more scenes from our 7 day trip