Special Needs Mom

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.

Mistletoe, Mothering and Teaching Kids Kindness

For me, the self-imposed pressure to mother perfectly cranks up at Christmas. Not only do I want everything to be perfect, everyone to be happy, for the family to enjoy the home fire burning ( literally), christmas music to be enjoyed, and the reason for the season appreciated- I also think we all deserve an escape from life’s challenging every day reality. I don’t over-” do” Christmas- I just want the season to be special and filled with lots of family tradition and fun.

We try to embrace the simple stuff.. Read more of this post over at 5 Minutes for Special Needs

Why I Chose You Then and Would Do It Again

It was a magical time for us then, when we first came together. Life wasn't perfect- but we were, from the moment you first held me as we danced across the floor. In our thirteen years, I never tire from hearing you tell that story,. "divine intervention" you call it. How you held me that first time and just knew.
Life has changed for us since then, but we still come together to find our own magic moments. Sitting by the fire, out on the patio, at the dinner table , when it's just you and me.
But the magic doesn't end with just us, you have embraced being a father, and set out to make magic for our girls too. They love their " go-to-guy" who makes them pizza, tells them stories, gives them hugs and everything else that they need to feel love and cherished, just like I do.Our day's are busy with our common goals- your business, the kids, my own commitments - yet you always encourage me- that I am doing it right, that I am talented and when I really need to hear it-  that I can do better.

Finding Family

I was adopted by a family that I will always call my own. Well matched by intention, we looked enough alike that strangers never saw our differences . This family of mine I love, and I grew up knowing - that I was chosen to complete their family, a baby they wanted to love and call their own. I was their chosen baby, and this I always knew. But 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 really looked like me. And when I grew to be an adult, I searched further and found my biological parents, but really I found myself.

It was a different lifetime ago. I was a workaholic in a profession I loved, yet  offered no real life. I was married to a stranger, and became one myself. The process of finding my past, helped me find my future.As a parent now, I finally understand that there is no greater love than the love a mother has for her child. I understand the genetic link too- the way my father and I have so much in common and years later can choose to be family to one another.

But I also understand that adoptive mothers make a choice.  They choose to reach further, they choose to call their child their own, to protect, to nurture , to love as their own. They see no difference, fully loving their child born from their heart.

But that chosen child, should be allowed to someday choose too. They should be allowed to discover their own past - that may complete their future.  To know about the biological parents they were born to, before they were born into another one's heart. 

The Music of Gratitude

Today will be different than other days- Today I will see up close a life that could have been, a life that still could be. The children's faces will be real, as will the fear, fatigue and hope I recognize as their parents pass me by- and as these scenes play out before me, they will remind me- how very lucky we are. Today Zoe and I will spend some time at the Children's Hospital. And I will remember the way I always do- our first procedure there. How I sat by myself that early morning, in the waiting room- wanting to know so badly what was wrong with my baby. I will remember how I watched that Doctor come from surgery, seek out that anxiously waiting set of parents and then take them into the small private room .How I was still sitting there- lost in my own thoughts and wants- when the door to that room opened and the parents emerged hand in hand , pale, and crying. I prayed then- a prayer for them and a prayer of gratitude for my own family and what we we did not know. Today Zoe will make eye contact with the other kids who pass by in wheelchairs and strollers. That sameness will excite her and she will greet them as she always does- though most will be unable to say anything in reply. Today we will navigate the hospital hallways, Her pink wheelchair will hold her small backpack, but no feeding pumps, no oxygen, none of those life preserving tools that accompany most other children traveling those same hallways. Today Zoe and I will be the lucky ones. We won't be staying .My bright eyed girl who always says " good" when you ask her how she is.. no matter how tired, how feverish, or how tough her day was. Today my girl and I will check into radiology for a couple of tests, visit the lab and then we will go home. We will go home. And when we are done and we pack up the car to head home, I will settle her in and give in to my own relief to be leaving. I will push away any dark thoughts and fears, and instead choose to hum along to the music of gratitude in my heart.

Time Discovers Truth

Before I became a mom, I did everything at high speed.  My long legs galloped through airports, trade shows, malls, corporate hallways- purposefully propelling toward my destination. I assessed people too quickly, rushed through conversations, and often missed the simple beauty of everyday life...

Continue reading my post today..  at 5 Minutes for Special Needs.Com