Special Needs Mom

Message for ALL Mom’s .. LOVE your kids, as if they were dying..

 

My day had started like any other, I was up at 5 packing lunches and backpacks, while trying to gulp down some coffee. I had an appointment at the office later, so I spent a few minutes standing in front of my closet perplexed and sighing. I looked in the mirror, briefly noting the major damage 40 plus years and nightly interrupted sleep can bring.  Finally, by 7 am, we were all dressed and ready, so we hit the road to drop Zoe’s big sister O, at her school first. 

 Later, it was just Zoe and I in the car. The sun was streaming through the car windows, the radio was on and I was trying to make Zoe laugh..  we were singing to the music and making small talk about her day. 

I am used to the starts and stops in our frequent conversation. Zoe, almost 10 now,  is a thinker-  yet she slowly forms her thoughts, chooses her words and processes it into speech. There are pauses as she searches for the word she wants, and fatigue can slow the pace, slur the word . Remembering all the years she could barely even communicate, I wait patiently and am still grateful each time she begins to speak. 

 Her thoughts come in word pieces and listening carefully, I fit the puzzle together ..

“ Mom, when I grow up and become a Mom, would this be a good car for me to drive and how do you learn to be a Mom anyway?”  There it is, her question. And suddenly it’s as if the clouds have pushed the sun away, and my daily “ cup half full" approach to life has been smashed to hell. Zoe can't see my face, and I am glad. I don't want her to know the raw pain that is causing me to to hold my breath .

My girl is growing up, and thoughts of the future, are naturally close ,more menacing than when she was 3 or 5, and although she is an awesome kid doing amazingly well- she still has a progressive metabolic disease. She still has generalized epilepsy, kidney disease and although she grows more steady with the growing size of her body- she uses a wheelchair and a walker to discover and experience her world. 

What I couldn’t say to Zoe is that with her vulnerabilities I can’t imagine her “ being a mom”-  that her physical impairments alone ,will prevent her from ever driving a car. I refuse to even contemplate the complex medical conversations we have had about Zoe’s life expectancy, we just don’t go there.

Yet this reality is what sometimes separates me from other Mom’s. Tragedies that take kids too soon are always unexpected. As busy Mom’s we just forget  that we are all fragile. We sometmes forget that the messy room, the lapse in homework , the bad grade -aren’t the important things about mothering.

In the last few months, my local community of special needs families have lost two girls, and this loss hits  close to home. These girls were very close to Zoe’s age, with some similar issues. These families were fighting, and winning. Their kids survived surgeries, hospitalizations, and the everyday challenges that often come with raising a special needs kid. These parents were managing their kids health, their kids were stable, even improving with therapies. Their parents were seeking refuge in that stability that meant success-until the day their kids weren’t stable. Until one day their physical vulnerabilities were  cause for taking their child’s life, and they were just gone.

I am guilty of doing it too sometimes. Getting caught up in the day to day. Zoe is doing well, we are managing , we are “winning” and then an illness comes along, a medical test, or a conversation like this one Zoe and I shared - and reality comes crashing through, grounding me again to what is really important.

 And it’s this reality , that I wish every mom knew. It sounds  harsh, I know.. - but it’s a secret that special needs moms have learned along the way. It’s something that I think all Mom's should know, or just think about sometime. That all that other stuff- just really doesn’t matter. 

Let your KIDS be that sunshine that lights your soul and commit to really love your kids, love like they are the MOST important , love with the heartbreaking pain that comes with it. LOVE your kids, as if they were dying.

 

 

 

 

The Anonymous Note, Part 2 And Those Kids Who Inspire Special Needs Moms

 

When my daughter Zoe was a toddler, she didn’t spend her days spreading out her toys and playing on our cool tile floor , or toddling around clutching her favorite doll with sticky juice hands like her big sister Olivia did.

Instead,  Zoe preferred to cuddle for comfort. Her speech didn’t develop until late so I spent a lot of time trying to interpret her sound and movement, solicit a response, and get to know my little one, trying to discern what made her happy and what was making her hurt.

Zoe was 3 years old when she was finally diagnosed, when we learned she would never walk by herself. She was 4 when we learned she may eventually lose her vision, and when she was 5 she experienced a stroke like event- yet through it all, when she wasn’t sick,  Zoe has been a pretty happy, smiling kid. 

To The Author of The Anonymous Note Left On My Car Window

I think I recognize you!  I do.. I used to live in your world of Black & White, everything in order- in it’s place- I  got a plan- got a schedule- a list of finished projects- checked -off checklist and all. How wonderful for you that your life is so structured , so dependable and predictable that you cling to that line dividing right and wrong, black and white, and that you feel compelled to comment when you think someone is coloring outside the lines. 

 This time though, in your hurry to keep things neat and orderly.. you didn’t see the whole picture. I guess you didn’t see the accessible permit hanging from my car mirror, giving me permission to park close to the entrance. You didn’t see the wheelchair lift permanently installed into the back of my SUV, and you didn’t see me unload my nine year old daughter’s pink manual wheelchair that we use for “ quick “ trips. Maybe from your view you only saw my 11 -year old daughter and I, and not Zoe’s pink wheelchair.

Ordinary Acts, Extraordinary Love

My girls have been in school a few weeks now, settling in- despite the challenges- two weeks of record Arizona heat, new classrooms, new schedules and the same old pressure to eat snack, eat lunch, drink water and do their best work.  Two different schools, two different nurses offices’ stocked with medicine and strategically planned driving routes to include both schools and a quick commute to / from work. We are all doing the best we can, and achieving more than we even realize.  

We have set routines, schedules and some pre-packing we do the night before; lunch boxes, snacks and backpacks. This allows me the much needed luxury of drinking serious amounts of coffee each morning, while I navigate my normal morning “ Mom” jobs.  

I have watched in awe each morning as O works through her anxiety and jumps out of the car, moving as if she is in flight, streaking past the slow kids on the sidewalk, excited to start her day.

Read the rest at 5 Minutes for Special Needs 

The Value in Life

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

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

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

The Words That Matter Most

I remember the exact moment I got the news, when my world stopped and for the moment -nothing else mattered. I remember the way the doctor led us across the recovery room and into the makeshift office of the medical tech I saw scurrying away.  Some guy who, at the doctors urging, left so fast, his abandoned cup of coffee still sat steaming on his desk. We sat talking until that cup of coffee grew cold.

 At first there was relief, I was strung out from sleep deprivation, and determination. I knew something was very wrong, but no one in  Arizona could figure it out. Thanks to my father’s celebrity connections,  Zoe and I had flown across the country to meet with a team of special doctors. 

  I made it through that meeting , learning a lot from the doctors words and more from those converstions that  followed.  Most doctors are practiced at the art of breaking bad news.

 Over time I have learned how much to say, how to have these conversations- and when it is best not to try. 

Cool Tools To Help You Tackle Your Day

 

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

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

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

Keeping Your Head Above Water

I am not sure when it was exactly, that I stopped planning ahead. It could have been when Zoe was little and ill all the time. Maybe when her big sister Olivia was still catching every virus too- but somewhere along the years with appointments, kids school stuff, daily care and flu seasons- and trying to work from home- I stopped looking ahead on my calendar and started my focus of just keeping my head above water. One day at a time.

Sometime after that, I gave up the guilt  too. Feeling remiss about the appointments I had to reschedule, the lunches I could never follow through with , the birthdays I missed, the social calls I could not return. There isn’t enough room in my head to stuff guilt in there too- it’s already full of worry, constant care reminders, health stuff and detailed plot plans for tomorrow on how to be more productive, more efficient and to have a better day. A long while ago I gave up pedicures, dinners out, date night or hobbies- I am good intentioned, but it’s tough. And I still feel bad- but mostly I have accepted the idea that I am probably misunderstood. That others just “ don’t get it”.

I think a lot about how to apologize and explain. Continue Reading  This Post at 5 Minutes for Special Needs.com

Slowing Down To Savor The Simple Moments of Summer

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

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

Back to the Basics of Mothering..

Arizona's scorching heat returned the end of this week, and because both my daughters’ have metabolic energy issues, and the school week was extra busy..  this made for very grumpy girls. Being hot makes us all a little grumpier, but for my girls when their bodies are truly out of fuel- it can reach a new level ... To read more visit 5 Minutes For Special Needs. 

 

Special Tribute to Mom, A Letter From Your Child

A Letter From Your Child, this Mother's Day

 

Mom,

Even without my words, 

you have always known my needs. 

When I am hurting or afraid, frustrated or fatigued, 

You gather me home 

into the safety of your arms. 

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

You make my happiness.

When you sing my favorite song, 

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

When you take me for walks -

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

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

 and then fill the hours of every day- 

Telling me what I can.

Fixing What I Can Fix With Duck Tape and Aqua " Happy" Paint..

Moms of kids with special needs ( or special powers as Love that Max Mom, Ellen says) aren’t that different than other moms. One minute our kids are laughing, smiling , feeling good, and we feel like rock stars.. and the next minute well .. we wonder what the plan was giving us more than we can handle, because we just suck at this “ special “ mothering thing.

Like other moms, I bounce back and forth- feeling like I am ahead of it sometimes.. ( meaning not overdue with doctors appointments, medicine pick ups, homework or library books..)  and then, totally feel like last on the list when my kids are hurting, unhappy or have some type of problem I just can’t fix.

Continue Reading This Post Featured At 5 Minutes For Special Needs.com

 

 

Asking For Help and the Power and Promise of Hope

 
This is the story about asking for help, the power and the promise of hope, about two sisters, lots of glitter and curls, and how fairy tales can come true. 

I have this standard joke I make, when people ask about our family’s summer vacation plans.“ The Cleveland Clinic” I joke. Serious , when I consider the expense, time and planning these trips require.  

There is also an Arizona ranch we visit, making great family memories sharing unplugged long weekend time in a log cabin, painting watercolor pictures, visiting with the horses and connecting with nature and each other. These visits too few and far between, are still a medicine for the soul. Visits to the ranch are often spontaneous escapes designed to heal and soothe, refresh and recharge. 

Silent and Stunned.

So here we sat, Olivia and I , side by side on the couch .It was almost 6 am and I was gulping down coffee and helping her do some last minute study for her Science test... the functions of the cerebellum, the nervous system and the role of the brain. The timing seemed right to explain again how much of  Zoe’s cerebellum was missing and how that affected her balance, and motor function, Zoe’s epilepsy and how her episodes of dizziness are most likely seizures. We talked about the differences in Zoe’s brain and Olivia seemed to really understand. It made sense, her book open on her lap , the scientific explanation there in black and white.  

We finished our review and I sat watching O’s still sleepy face in the early morning light, admiring her beauty, amazed by her intelligence, her ability to empathize and understand her sisters challenges in a different, newly mature way.. “ But one last thing Mom,” O said. Laying out the words that would tell me that although Olivia may have analyzed and acknowledged the definitions of the words she heard, her heart simply would not let her understand.. “ Zoe won’t need her walker or her wheelchair forever will she? Her muscles will get stronger, when she grows up. Right?”  

I took a sip of coffee, considering how to answer her question. Considering Olivia’s future, Zoe’s, their shared diagnosis and how far Zoe has come..and I came to this truth. “ You know Olivia, when Zoe was a baby, we weren’t sure she would ever walk with a walker, much less run with it, or do half of what she is doing now. But she has amazed all of us, she still does, every day.” 

Olivia sat silently, considering my words, seemingly accepting the natural end to our conversation. My heart was pounding as I thought.. that was a positive answer, something for Olivia to reflect upon and accept as truth , and as her heart and mind allow her to see more of the truth , when she is ready to understand .., the meaning of my words will change.  

I stood, pulling my robe around me and reaching for my mug of coffee, and as I turned.. facing the kitchen , the empty open lunch boxes waiting on the counter....there was Olivia's voice again  “ But Mom, how will that even work when she has kids, you know when Zoe is a Mom  and has to use her her walker and a wheelchair ?  How will she do it? "

I stood still, and silent- my breath caught in stunned surprise, thankful that my back was turned ..as the tears fell from my closed eyes. 

Moments Like These

  It is past 8 o'clock at night, and my ten year old should have been asleep a half hour ago. But she isn't, she had to finish her book, have another snack, get a drink of water and now she is over tired. Her face is pale, her body is tired, and the aches and pains of a busy day have caught up with her. As I check on her one last time, dim her lights and prepare to kiss her goodnight.. I get a verbal  recant of all that went wrong with her life that day, and all that my tired girl thought I was to blame for.. I get a litany of not so nice little girl words. Within minutes, I know she will be passed out from exhaustion. She has an ice pack wrapped around her leg, her baby blanket around her neck and her favorite stuffed animal tucked against her chest. I kiss her goodnight and let the words flutter and fall from the air.