Special Needs Mom

See Me Cry Everywhere..

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.

Sweet Saturday !

 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!

Making the most of it..

“ 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. 

Alone with Autism, A Cup of Comfort for Parents

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

Sara’s First Friend

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

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

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

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

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

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

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

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

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

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

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

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

 

Looking at the World Through Rose Colored Glasses

 

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

 

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

 

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

 

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

 

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

 

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

 

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

  

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

 

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

 

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

Seriously..I .uh… Googled it.

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.

  

Spring Break Staycation

 

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

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

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

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

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

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

Another Common Bond

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.

My Father's Eyes

I have been meaning to post this piece I wrote previously. That tells more of the  story about finding my father... Suzanne Perryman: "My Father's Eyes"
Spring 2007 Mothers Who Write Reading

 

I was adopted by a family that I will always call my own. Well matched by intention, we look enough alike- eyes that are brown, skin the same medium pale shade, our bodies extra long –above average in height. We look enough alike that strangers do not see our underlying differences. From the beginning, this family of mine taught me that I was chosen. They had chosen adoption to complete their family, a baby to love and call their own. I was their chosen baby, and this I always knew. With a child’s curiosity, I could not resist always searching new and unfamiliar faces for my own specific sameness. The length of my face, the line of my nose, the shape of my eyes, knowing that somewhere there must exist, someone who looked like me. As an adult, I found my biological mother. She sent a photograph, sharing with me the success of her summer garden, but it was the detail of her face that was consuming. And when we finally met, I could see the same color brown- dark and deep in her eyes, a reddish brown in her hair. I saw the familiar roundness of her cheek as she lightly brushed hers against mine, my own heart shaped lips as she kissed me goodbye. Knowing that she was soft and kind and yet there was nothing there to bind us together. When we parted, she gave me a heavy brown book, its glossy well-fingered pages filled with paintings by Renoir. She explained  hesitantly that she had received this book twenty five years before. I easily understood its cherished importance by the way she tenderly placed it within in my open hands. Inside a note from my birthfather. “ In the interest of love.” he wrote, and that is how she led me to him. At his request, I sent him a letter. He asked me to visit him, and I did. The first time we met he looked long and hard into my face. Later he told me he looked at me  that day and saw his own mother’s face. His eyes were not warm, but strong and compelling. I found comfort in that.  We sat side by side, looking out on the vast, tranquil blue of the Pacific Ocean . Our eyes shielded from the sun, touching each other only with words. He needed to know I was okay.  He had chosen to life his life without me. Did his choice long ago hurt me? His question hung heavy between us as I described details of my life and he told me about his. The afternoon grew long, and we moved into the kitchen to sit at the long pine table that was centered on the white tile floor. Fresh flowers and a trailing plant of rosemary spilled over from brightly colored pots lining the windowsill. The sea breeze came in the open window, carrying the fresh essence of rosemary across the room, the afternoon sun intensifying its scent and casting a glow upon the yellow kitchen walls.  He talked of his trials as a boy, immigrating to this country, learning a new language , his longing and determinations as he emerged from the shy, scared boy he once was. I told him of my own childhood, that I always knew I was adopted, the separateness I often felt, although I was so badly wanted.  My own determination and drive defining my difference, resulting in my own success. That was the start of our story. In the beginning it moved slowly, like a book you chose because it looked intriguing. And then once you settled in and began reading, you just weren’t captured and carried away. The story of my father and I, sputtered and stalled, and just like a book, I set it aside, our place carefully marked. Years passed before we found ourselves together again, this time leaning into one another in comfortable conversation. The cancer that had ravaged my father’s body had been beaten, and there was no remaining evidence from the struggle. His eyes were clearer than I remembered, explained perhaps by the detoxifying fruit juices that replaced his habit of afternoon and evening bottles of wine. Myself, now a mother of two young children, preferring a hot cup of coffee in the late afternoon instead of the cold glass of chardonnay. Our words came quickly, filling the space.  I grew to understand what his eyes could say, words were replaced by meaningful looks, the shorthand used by people who really know each other.  I now know the way my father’s eyes narrow with worry, and open with laughter and pleasure. The way he looks away while he forms his thoughts, writing his script in his head before he turns to me to speak his lines with words he has carefully chosen.  And then the time came when I needed him and he was there – understanding my desperate need to find a diagnosis for my sick little girl , and he too became her advocate , connecting me with the right doctor- the one who finally could tell us what was wrong and how our life would be. He sat with me , sharing my hurt, touching me briefly as we tried to understand the words the doctor spoke. We went on a drive later that day, my father, his wife, and I. We traveled up and down winding streets and I watched the newly bright green trees against the radiant blue of the afternoon spring sky. The scenes slipped by my back seat window while I sat struggling with the silence. Searching for the right words to thank him for being there, words that could reflect the rawness of my emotion. I looked up and saw my fathers deep brown eyes, holding me, framed in the rear view mirror. Meeting his gaze, I watched his eyes darken with emotion. I understood then that I had finally found sameness. There were my very own eyes, looking back at me.

What You Just Can't See

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.