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

Standing at my bookshelf, my fingers follow the worn, familiar feeling of my books, old friends that I have forgotten. There are books of poetry, art and religion; books on growing things and making things; books on building business; books of dreams once pursued. Mysteries, memoirs and fiction that used to carry me far, far away.

I have come here now for a book of recipes, yet still, I am drawn to the now-dusty books about parenting. A shelf that started with a copy of What to Expect When Your Expecting and was filled to overflowing when the unexpected happened. Books on epilepsy and illness, advice and encouragement, books I once feverishly read my way through -- looking for answers, that only life would bring.

I find the baking book I have come for, it's sunshine yellow cover calling out to me, the vintage rose color calming me. I bring it to the kitchen where my daughter Zoe is waiting. No longer does she need the step-stool, or even for me to stand behind her. She stands by herself, leaning against her walker for balance. In middle school now, she has grown out of the little girl apron she used to wear, and favors a pink t-shirt instead. She smiles at me, her confidence and excitement radiating as she finds the page and begins to read the recipe aloud. Her supplies at the ready, she starts with slow, careful movements.

And with patience I stand back, knowing that what makes this recipe work is not my help or what is written on the page.

It is the shallow pan that will catch the overflow of flour and sugar, carefully measured by a shaky hand. It is the notepad nearby that will keep count, by Zoe's written " X's, the number of cups she has poured. It is the flattened bowl that will hold a steady surface for eggs to be cracked and pieces of eggshells extracted.

This is different from when I bake with Zoe's big sister, when it is a team effort to try new techniques, perfectly fill each measured cup and and correctly approximate each teaspoon, that puts my teen girl and I in unison. When it is her idea of what to make, her confidence growing with each new creation. Our collaboration brings us closer together.

Later, when I am alone, the recipe book still lays open, the written words worn, splattered and sometimes hard to read, this recipe replaced by real life.

I know now it is the real result that is better than the expected. It is the authentic, on-hand ingredients that deliver goodness. It is the directions we ignore, the techniques we adapt and the new processes we create that make each batch wonderfully unique -- and never exactly the same.

It is the sweetness that rises above, that masks the imperfections and the missed ingredients.

This is the real recipe of mothering.

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 like helping you..” My daughter Zoe tells me. We are cruising through our neighborhood grocery store, as I weave through the aisles, with my shopping bag overflowing and hanging from the back of Zoe’s wheelchair. Zoe expertly balances a half gallon of milk, green bananas and a loaf of crusty bread on her lap as she goes on.. “ I need to learn this stuff,  how to be a Mom for when I grow up. I have been thinking about this....” Her words stop and start again, as she retrieves the word she was looking for and finishes the string of her sentence. She ends with most difficult question. “ Is it hard to be a Mom?” She is smiling, happy to imagine her future- self this way.

I can’t imagine Zoe being a Mom. She is 11, and without detailing her prognosis, and debating the opportunities for adults with intellectual and physical disabilities, there are basic truths I have come to accept; Zoe’s metabolic disorder is progressive, her generalized epilepsy diagnosis is complex, and looking into the future makes my heart hurt.

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

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

I 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.

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.

I don’t sleep through the night. A good night means I am up only twice. My day starts at 5 and ends by 10, and the mothering I do all day is a physical, eyes and hands-on type that Moms’ of toddlers can most identify with.  I am the mom of a girl with special needs, and I have been blessed with the gift of perspective.

It is an awesome gift I have earned. When you hold your child throughout painful or difficult medical procedures one day, and the next she wants a chocolate brownie or to wear her princess tutu to the grocery store.. it’s a no brainer. It’s perspective. 

When the bedroom floor is strewn with toys at bedtime, but the sound of laughter still lingers from her afternoon of play, it’s the gift of perspective that allows you to push the mess aside and climb in - to give your girl a goodnight hug, grateful for a good day.

Managing stress is always an issue from me, managing work, home, marriage and mothering. Years ago, I picked up the first edition of “ Don’t Sweat the Small Stuff For Mom’s” and was moved by the poignant, short common sense chapters. I especially needed support with the accepting that I cannot do everything, taking care of myself was mandatory, and sometimes just surrendering was okay. 

 Yesterday, Zoe RAN for the first time. And it was real, I could feel her determination, ..as she kept pumping her tired legs, to go a little faster ,and climb the slight hill.

I could see the happiness spill from her smile , as she passed others on the running path . I felt the thrill of it, as she finally crossed the finish line, elated and spent.

Standing behind her, I saw what she saw- the incredible imagery of the wii game graphics on the big screen-- the dream-like sequence of images, as my little girl stood in her walker, pumping her legs with a rhythm her legs were never meant to find. As she imagined it was her hair flying in the wind and that she really was that girl on the screen- running in the sun, legs galloping with ease over the grassy hills.

“The hard part is trying to answer the questions Walker raises in my mind every time I pick him up, What is the value of a life like his — a life lived in the twilight and often in pain? What is the cost of his life to those around him? … If Walker is so insubstantial, why does he feel so important? What is he trying to show me?”  -excerpt from Ian Brown’s Memoir “ The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son“

It was this passage of the book  The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son  that first stopped me. We have all imagined the future of “ what if’s?” managing care for our children when symptoms worsen or a disease progresses. So these detailed diaries of Brown caring for his son Walker, did not disturb me. Instead I found the idea- “ What is the value of my child’s life?” inspiring.

As parents we set out to do the best we can for our kids. We take each challenge in stride, try to make the best decision, take the best approach, give our kids the best advantage. We watch how their  talents develop, we nurture, guide, help them grow, so that they contribute, feel valued and posses a strong sense of self esteem. 

 

It was way past bedtime, when emotions often run high. O was tossing and turning -  twisting her blankets into a furious ball and after one more kiss goodnight, putting on an audio book and one final threat from me, she asks “ What’s happening with Zoe and I right now? Why don’t we kiss and hug anymore? What’s going to happen when we grow up?” 

What’s happening with my girls is the age/ maturity gap is getting wider and O is growing up. What’s happening is it’s summer and it’s hot- and when hot, tired or hungry.. courtesy of their metabolic disorder.. my girls get lethally grumpy. What’s happening is Zoe doesn’t have all the social skills or real life experience to transition, process or adapt to the changing routine or emotional climate. It doesn’t matter why it’s happening really, what matters is it’s my job to fix it, or at least make it a little bit better.

At the end of each day, when the lights are low, the kitchen cleaned up- the computers shut down, the kids tucked in- the dogs curled up asleep and my husband and I finally sit down to enjoy relaxing into the quiet, I try to absorb the contented feeling of what looks like a normal life.   And then frantically get a game plan on how to make the next day better. 

 

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.

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.

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.