Special Needs Mom

Being a Special Needs Mom

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.

I confess..

...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.

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!

Books and more books!

As a stay at home Mom , I believe in the benefit of books! In today's economy there are many affordable options for buying books online- visit my online store and save! Keep reading - for your health and keep your kids reading - for their good health and development too ! Hundreds of new books coming soon; children's, bestselling non-fiction and fiction, parenting books, chick lit for moms, self-help etc. Please check back often.  

  Special Needs Mom Bookseller 

 

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 .

How I wish..

   

    

 

 

 

 

 

 

 

 

 

 

 

 

 

This is an old post, I think of each Fall.. sigh!... My husband and I stole a day away a couple years ago. We trekked through the creeks and rocks in Sedona. He, fly fishing.. me perched on rocks, reading and writing and just being.. We ended the day with a champagne brunch creekside at a beautiful restaraunt in Sedona... this is what I wrote after that lovely day together.

Stealing Sunday

Welcoming Fall. 

Holding Hands.

Slow and Easy Conversation.

Quiet Spaces.

Gentle Words.

Pen to Paper.

Sounds of Nature.

Turning Pages.

Smiling Eyes.

Stealing Sunday in Sedona.

This is an old post, I think of each Fall.. sigh!... My husband and I stole a day away a couple years ago. We trekked through the creeks and rocks in Sedona. He, fly fishing.. me perched on rocks, reading and writing and just being.. We ended the day with a champagne brunch creekside at a beautiful restaraunt in Sedona... this is what I wrote after that lovely day together.

Stealing Sunday

Welcoming Fall. 

Holding Hands.

Slow and Easy Conversation.

Quiet Spaces.

Gentle Words.

Pen to Paper.

Sounds of Nature.

Turning Pages.

Smiling Eyes.

Stealing Sunday in Sedona.

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.

Finding My Father...

How a daughter given up at birth learned her father was Joe Eszterhas

Sunday, August 03, 2008 , James Ewinger

Cleveland Plain Dealer Reporter

 

Joe Eszterhas sits on a big leather couch next to his grown daughter.

It is a quiet moment at the Geauga County home of a writer renowned and reviled for "Basic Instinct" and his other violent, sexually charged movies.

But for him and for her -- father and daughter -- this gentle suburban idyll is far more dramatic than anything he's written. This is the first time either has spoken publicly about their relationship.

Until 1996, these two were unknown to each other. Suzanne Perryman, as she is known today, was adopted at birth by others 40 years ago. She moved to Arizona , where she still lives.

After the death of her adopted father in 1986 and the collapse of her first marriage, Perryman was ready to look into the eyes of a blood relative.

She did not know that she was looking for the man viewed as Attila the Screenwriter.

She did not know her biological parents, did not know their names, where they were, what they did or whether they even wanted to see her.

"I grew up very comfortable with the idea that I was adopted," Perryman said. But she wanted to know her own story.

 To read the complete article, please click here..

http://www.cleveland.com/entertainment/plaindealer/index.ssf?/base/other/1217752259317541.xml&coll=2

The Trip

 Soon we will leave for Cleveland. Seven days scheduled away, for the girls and I . We enjoy the comforts of home and I will miss the peaceful chaos of our being together. My husband can’t go with us this time, and that’s okay. We will miss him , and Max ( more pics to come) , but we are looking forward to staying at my father’s house. He has four boys- the girls love being silly with them, and generally just hanging out, playing barefoot in the grass . Rare time spent together to be savored.

There will be high points of the trip- no doubt. Quiet moments with my father, still a new friend in my life, a lunch with an old contact who helped me search for him long ago…( more on this later..).Great conversations with his wife, whom I admire and am happy to call my friend.  There may be challenges too… two EKG’s, two metabolic work ups, one EEG, two kidney doctor checkups complete with finger pricks, two brain MRI”s with MRS, complete with anesthesia , lots of labs– and the question and answers with our expert doc. Three days of driving into the clinic ,and always unexpected developments . Yet still, we are blessed to have this place to go, to have the support, the knowledge and expertise, even if it’s a plane ride away.

Getting Ready

  

This is what I know- living with, and parenting a child with a medical condition isn’t easy. But it’s not that different from parenting typical kids either. You stay positive, and patient. You encourage, offer hope, show them how to make friends, share excitement, dry tears, color with your kids, soothe their fears away and at the end of the day you make sure they know they are loved, cherished and protected. You live your life with the right priorities, so that you have no regrets. You do lots of laundry, kiss boo-boo’s and you try not to think about the future in detail.

 

 Both of my girls have a metabolic disease that is defined as “ progressive”, yet that word goes against everything I believe. You can’t teach others to be positive, to dwell on accomplishments, to have fun, to live on the lighter side, to let my daughters just be kids- with that word hanging over you. It’s an acknowledgement that things will get worse. Using that word is an admission of fear.

 

Because there is no treatment, the key to managing their health is to prevent the progression of the disease, keeping them as healthy as possible. By preventing fatigue, by keeping them out of extreme temperatures, by reducing their exposure to virus and infections, … By managing their individual symptoms like epilepsy , and kidney disease. Most of the year I am in management mode, safeguarding, nurturing and not focusing on future prognosis.

 

We travel to the Cleveland Clinic, once or twice a year. There we see one of the few specialists for mitochondrial disease. A neurologist who has seen so many patients over the years- that he has developed the unique ability to offer insight to the future.

 

In previous years, on previous trips I would ask “ Will Zoe ever walk, will she ever talk?” He gently encouraged me to hope, to try but most of all to be patient. The course of this disease is different with every patient. When we have health issues, he often knows what comes next. Yet still, there is no standard, no road map. We have accepted this. So instead we just steer around the biggest obstacles, accepting the fact that sometimes you just drive, even when you don’t  know where you are going.

Our Puppy Max

Life is sweet with a nine week furry bundle of joy nipping at your heels. Pure Bliss.

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.

Growing Up

I crept into each of the girls rooms tonight, long after they had gone to bed.

Standing first in Zoe’s room, I watch her sleep. Almost six years old now, her body is long , like mine, and her father's. Her hair color is turning from a dirty blonde to a peachy blonde, if that makes any sense. The same copper penny color that claimed big sister Olivia’s hair color for so many years, seems to have gently washed over Zoe’s hair overnight. Her face is maturing, and I can see more of Olivia in her face each day. Her cheeks are flushed now , her skin bright pink in the low lighting of her room. She is facing me, hugging a snow white puppy dog and her blue baby blanket afghan. She looks content and I try to imagine what favorite thing she might be dreaming of; being at recess with her kindergarten friends, playing on the playground, free choice time in the classroom or maybe she is lost within the precious pretend world that she and her sister visit often.

Due to Zoe’s increased vision loss, without her glasses she does not see well. The other day , her glasses were off and I was sitting very close to her. “ Can you see Mommy’s face?” I asked, “ without your glasses?” “ No.” she began to answer.. “ But it’s okay Mommy, I know what you look like!!!” We both giggled at the simple truth of this. Zoe likes to have extra light in her room at night , I believe it helps her sort out the scary shadows from the familiar favorite objects that fill her room.

She sleeps better now, often through the night. She is tired each night from her full day in kindergarten. Her school day starts at 8, her morning filled with academics, her afternoons spent learning Braille, and doing speech, physical and occupational therapies. It is a treat for her to participate in the fun stuff like classroom events, library, and playground. She gets too have free choice time everyday, and never complains about the work. Everything she does is with determination and a smile on her face. She has mastered her pink power wheelchair, at school and in our community, and she has many friends at school. Although her last MRI showed that she had suffered a stroke like episode, she continues to progress academically and cognitively- it is only her energy level and ataxia that seems to have been affected, so we balance her days with great care- allowing her to live life fully yet not exhaust herself. She begins to stir now in her bed and I imagine she is dreaming.

I move into Olivia’s room and find that she is upside down, her head at the foot of her bed, resting upon the pile of blankets as if they were a pillow. In the dark I can make out her long, lean body and I gently try to move her around so I can cover her for the night. " Will you lay with me, Mommy?" she asks sleepily. I pull her to me, knowing that if I gather her in for quick hug , she will be satisfied and will fall back to sleep again.

She is much happier these days. She is seven now, and her escalating anxiousness is practically gone, her clingy nature replaced by affection and a silliness that was hiding beneath, just waiting to be discovered. She takes her kidney medicine each day, and now she takes a new medicine too. The anxiety disorder is a result of the same mitochondrial disease that affects Zoe. This new medicine has erased her panic attacks and worry, the anxiety she was suffering from , that ravaged her tummy and kept her from the innocent, joyous happiness that all little 7 year old girls deserve. She rarely wakes now throughout the night, and in the morning begins each new day with enthusiasm and excitement.

In the folds of her blanket is a Cam Jansen paperback. She reads in the morning and into the bedtime hour too. She tells me she is good at solving the mysteries, her favorite, figuring out “ who did it.” She insists we visit the library at least once a week, and for this, I am thrilled, and decidedly blessed. I tuck her in gently and notice that one of Zoe’s dolls is in her bed. The two of them trade off their favorite possessions, sharing them equally, and bestowing them upon each other as special gifts. The other day Zoe was following O down the hall, using her little old lady aluminum walker, singing “ We are sisters, We work together, We make up one big family…”

Their bedroom doors closed, I turn out the rest of the lights and head to my bedroom to find my husband, also tucked into bed and waiting for me. “ Are the girls okay?” he asks. “ Just fine” I answer . His voice is gentle and full of affection.

Tomorrow will bring a new day. Deadlines for work. Medicines to order/ pick up, appointments at school and more to schedule with doctors, the same insurance arguments, extra snacks, milk, medicines and pull-ups to pack for kindergarten, but for now I don’t think about the crowded calendar that hangs on my kitchen wall, or the loads of laundry waiting to be washed.

I crawl into bed and settle into the curve of my husbands body, I wait for the warmth of his arm to wrap around me. I think about the contented sleep the girls are enjoying down the hall and smiling myself, I close my eyes.

Princess Power

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.”

Dear Little One,

Things are not always as they seem.

We were at the park the other day, you and I, and your big sister too. She is four, only a year older than you, but she can run and jump and climb. And you, completely in love with her, always laugh and clap- and share her joy. Maybe you imagine yourself traveling in her fluid body instead of resting on your own flat feet, managing your weak muscles that prevent you from walking independently.

On this day we can see the playground ahead, and your sister begins to run. My hands are on your waist, supporting your steps with a solid strength that enables you to shuffle your feet into an awkward yet productive gait. You are impatient; there are probably hundreds of tiny footsteps between you and your sister. You reach your arms up asking for help. You want me to carry you. I refuse the voice in my heart and I say “no”. I take your hands in mine and we begin the slow walk together.

Finally when we arrive at the playground, you want to climb. I hold your waist, your arms and sometimes just your hand to stabilize you as you move carefully up the steps. A little boy, almost half your size walks by you, too close -his body briefly making contact. It is enough to challenge your balance and you begin to fall. My hand quickly pulls you upright to the stance you had worked so hard to establish.

Your hands in my hands, you lead me climbing clumsily to the top of the slide.  I place you in my lap. You begin to scream loudly and I see the boy’s mother studying you and me. Your sister waits below, calling encouragement, anticipating the excitement of your accomplishment. We push off the top of the slide and you are crying in fear as you always do. And five feet later as we reach the bottom I hold you in front of me and you laugh! We are closer to the boy’s mother now, and we make eye contact. Before I can even consider conversation she asks “How old is she?” Almost three”, I reply... “And your boy?” She answers that he has just turned one, a few months back. She abandons the conversation, afraid and unable to ask the obvious questions. She turns her head and her eyes follow her son instead.

You see, little one….things are not always as they seem. When you are tired and I help you walk, when your weaker muscles need the support of my strength, or when I carry you, you may cling to me. You may even be restless or fussy. Others may see your physical size, your neediness and think I am indulging you. But things are not always as they seem, I know your needs.

Sometimes, you may cry or scream in public it is because I am challenging you. Expecting you to act like other children as we move through public life socially as a family. Others may see a tantrum; I know your special needs.

And when you move your body, quickly, repetitively, distracting or disturbing those around us, they may see immaturity, disruptive behavior. But I know you are adapting to the challenges of your environment the best that you can. I know your special needs.

Love, Mommy

My Heart Sighs

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.

What Our Chldren Need: Expectations

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.

Dr. Mom's Intuition ?

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.

Stealing Sunday

Welcoming Fall.  Holding Hands. Slow and Easy Conversation. Quiet Spaces. Gentle Words. Pen to Paper. Sounds of Nature. Turning Pages. Smiling Eyes. Stealing Sunday in Sedona.

Twenty Years of Food for the Soul

Her corkscrew curly brown hair falls carelessly past her shoulders and down her back. In the dusk of early evening, the champagne colored beads on her dress are shimmering in the soft light. She looks beautiful. She is smiling her silly, relaxed smile and her eyes are shining. She places one hand on her fiancé’s shoulder, while the other, gracefully holds her glass of champagne. Nervous and determined not to cry, I move my eyes away from her image and begin the toast I have written for her.…

“Jill lives her life with great passion. And, we have been so fortunate

To receive, the many gifts she gives us.

Gifts of loyalty love and support.

And now, a man who knows her heart,

her smile, her spirit. Has chosen her.

May he give to her these very same gifts, and more.

That she so richly deserves”.

The toast is finished, and I am watching her walk toward me. Her familiarness stirs something within me.I surrender my mind to the memory of when we first met, over twenty years ago.

She stood then, amidst a cluster of fifteen year olds. They were gathered around her, echoing her laughter, and following her animated gestures eagerly. Her voice , not yet the sexy purr that it is today, was fresh and fun and full of bounce.

I was a new student at a large public high school. She brought me into her circle of friends, and soon after, into her family. She fed me wonderful Italian meals and welcomed me into the warmth of her home. She accepted me, looked after me, encouraged me.

Today, she is a gifted primary education teacher. Each year, a new classroom of smiling, adoring little faces are thrilled to be in her classroom. Because she accepts them, looks after them and encourages them- like she did me.

She relates to the special needs of my children, and provides amazing insight to the challenge and care of raising them. And when Zoe is ill, and we have to go to the hospital , urgently and unexpectedly, she is the only friend that visits us.She comes to check on Zoe, and she comes to check on me. She wraps her arms around Zoe and makes her smile. She feeds me homemade spaghetti and words of encouragement. She brings me socks to warm my cold feet.

She has promised to be my children’s advocate, guardian and mother, should the day ever come.I know there is nothing she wouldn’t do for them.

And now, she has given me another gift of forgiveness, and understanding.

Soon she will marry, and I, her best friend will not be there.

Tonight, I invited her into my heart, so she could feel my troubled spirit, my weariness and worry. She felt the pain of my children’s illness. And when I explained how I could not leave them, to travel to her wedding. She understood.

And once more, she fed my soul with the love of her friendship- as she has for twenty years.

Faces

Weary, is how the mother looks. Her eyes are full of pain and her face shows the stress of extreme heat. Tears stain the light film of dust gathering in the folds and deepening lines beneath her eyes. . She is looking directly into the camera as her words whisper through her cracked lips. She is holding her baby, his head curled into the crook of her neck. Clothed only in a diaper, he hangs limply against her body. His mother turns, so we can see his face resting against her shoulder. His red flaming cheeks, his closed eyes, and the stillness of his torso tell of his defeat. She pleads for help. With no water, her baby has become overheated and lethargic.

This is the heartbreaking image still playing in my mind, one of the many fallen faces hurt from the horror of Katrina. I heard this mother plead and watched her tears fall. Thinking all the time, of the mothers I know, whose children are too fragile to live through such cruel chaos.

I imagine these mothers-desperate for food and water and without the necessary medication their children require. Plenty of heat, little rest, and nothing to strengthen their weakening little ones. 

And today I give thanks, as we move throughout our day. Traveling …to therapists and doctors offices, to my daughter’s schools, to the pharmacy for medicine refills, to grocery stores for food, and finally, we return to our home.

Our home that is still standing and exactly how we left it…

And at the end of the night, when I kiss my daughters red rosebud lips , it is hard to forget the red flaming cheeks on that baby boy, and the many fallen faces Katrina left behind.

Daughter of Mine

I watch you and I worry.  Sometimes your pink cheeks signal what lies ahead. When I see a slight tremor in your hand I know you are fatigued and your body needs fuel.

Frequently, I am urging you to eat and drink. In reply; you begin to raise your voice. There may even be an outburst of anger and tears.   You cry many different tears. Raindrop tears, that trickle down your cheeks like gentle rain runs against a window, Thunderstorm tears that are fast and furious, and the torrential downpour which fall hard and steady.

You raise your voice in anger. I raise my voice in fear and frustration.  I plead with you to drink your milk. You refuse and the outburst continues. I hold you, hug you, coaxing and pleading. Only minutes after you have finished your milk, you say you’re sorry. Sometimes, while you are eating your crackers and cheese, you tell me that you feel better. When it is over, you often tell me that you love me.

I will always love you. You are my daughter and I will never stop. I will never stop looking for doctors who do not roll their eyes at your complex biochemical patterns that define your diagnosed metabolic disease. I will never stop looking- for more ways to improve your health- and better methods to manage your disease. These are my lifelong promises to you.

For today, your charm, your intelligence, even your beauty tells the world you are simply a typical little girl. And if others see you beginning to grow angry and aggressive- they may question your bad behavior. And for now, that’s okay, I choose not to tell them any different.

I don’t tell them we are waiting for the appointment date to test your brain and heart, and that we hope that both will be okay, unlike like your little sister. I may not tell them that a metabolic disease is the basis of your bad behavior.

For just a little while longer, I will hold this close to my heart, with my dreams, my fears, my hopes and my heartache, daughter of mine.

Looking For Rainbows

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.

You And Me Against the World

" Look around you, everything as you see it now, from this day forward.. will be different"

We stood on an old stone patio in a courtyard filled with flowering shrubs. These were the words the pastor said ,before my husband and I exchanged our wedding vows ,almost six years ago.

The stone courtyards of this rustic italian restaurant brought me back to that moment .. Although we sat here , indulging in rare luxuries.. A Saturday night babysitter, an elegant meal in a beautiful restaurant, excellent wine...There was no doubt in my mind, things were very different

Looking at him, he looked very much unchanged. Still energetic, wise, passionate about life. I wondered then, what he saw, looking back at me. So I asked him, beginning with.." I am so different now, are you disappointed?" Surprised, he questioned my use of the word disappointed

" How could you say that" he asked. " Your the love of my life" I know.. I assured him. " But you don't get it " he said.

I went on... The used-to-be's..Before I was successful, I was focused, relaxed, interesting.. I had intelligent things to say, I could start and finish a business discussion with ease... and I went on. " I have never felt more challenged than I do now, I said. I just wondered...

" You are an excellent mother, you are many great things.... but you are the love of my life. You told me once, something.. the most powerful thing anyone has ever said to me, in my life. Do you remember?" he asked.

My eyes held his as I took a sip of wine. waiting. He said " You and Me against the world, you told me once. That was so powerful, so meaningful".

And at that moment I felt like my old self again . " You and Me against the world", I agreed.

There isn't anyone else in this world, that I would choose, but him.