Special Needs Mom

See Me Cry Everywhere..

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

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

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

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

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

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

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

Sweet Saturday !

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

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

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

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 .

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.

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.”

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.

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.

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.