Shining Beyond Limitations

20140418-132214.jpg
Another year. Another new challenge. Many new challenges. New challenges and old challenges mingling together, becoming inseparable, strengthening each other.

Another year. Another new joy. Many new joys. Easily overshadowed by the challenges, but there all the same. New joys and old joys slipping in unexpected, hiding in the moments, waiting to shine.

Another year. Another Joy Prom.

Weeks before the event, I received a phone call to see if Savannah would like to try on a donated dress. I could only laugh. The previous year Savannah had a “fancy” dress. Bright pink and puffy and crinkly. She giggled and squealed and wore it for days. Until the day of Joy Prom. That day it was vehemently thrown to the floor and replaced many times over until a common cotton house dress took its place to the formal affair.

Fashion is Savannah’s thing. She puts things together I would never consider and wears them better than any model. Winter boots and mini skirts. Glitter and plaid. Sparkles and joy.

Sure. We could try some donated dresses, but I had no expectation of her wearing one. Little did I know there was a dress waiting for her to find it. Waiting only for her. A soft pink dress, with golden sequins and a brown bow. A dress that would look amazing with knee-high, thick-heeled, clunky black boots.

And it did.

Like every year before, the night began with the magical red carpet entrance. Savannah entered, escorted by her Dad and Grandaddy. The flashes popped. The crowd cheered. The princess smiled. She buried her head in her arms, closed her eyes, and began to shine.

Savannah shined in the horse drawn carriage, shined as her nails were painted in sparkles, shined in the flashes of the photo booth. The sequins of her gown shimmered and glowed, as her boots carried her through the crowds. Her inner princess shining through. One high school boy, a personal crush of hers from the summer, took a double-take, turning and watching her walk by. True to tradition, his mouth fell open a bit. The sequins and the boots and paparazzi atmosphere had transformed her from disabled to unattainable.

Then came the new challenge: the Carnival Games. Savannah approached the carnival area hesitantly. Her skeptical eye and nervous pace answering each plea and coax to convince her to enter. Until finally, with trepidation looming, she did.

The joy she found surprised us all.

She was first greeted by an orange balloon poodle, made just for her, the girl terrified of dogs. And she loved it. She loved the horrid bright color that clashed with her dress and the smooth rubbery feel between her fingers. Most of all, she loved the way he looked as he tumbled from the sky each time she helped him become airborne with a squeal. Savannah carried him with her to the corn hole games (which she surprisingly won!) and to walk the cake walk (which she thought was great!) and to the parachute play (which she insisted he ride on!). The orange balloon poodle never left her. Weeks later, he is still sitting next to her favourite chair, half-deflated, waiting for her return from school.

The night ended in style with Savannah’s first limo ride, around the church parking lot and to our car. Night was falling, the church was emptying, and yet Savannah could have kept partying. She had stayed the entire Prom.

Another first. Another challenge overcome. Another joy.

Each year Joy Prom brings Savannah something new. New challenges and new joys. New friends and old mingled together, becoming inseparable, loving her stronger. It gives her the opportunity to dress up and be noticeably gorgeous instead of noticeably disabled. It gives her memories that can sparkle through her dreams for years to come. It gives her a chance to shine beyond her limitations.


the Bike That Wasn’t Pink

20140322-212906.jpg

When Savannah was three she would cling to the padded pink handles of her princess bike, hands gripping from underneath instead of above. She’d petal her legs and squeal “wee!” with each press of the pedal that lurched her forward. Slowly and cautiously she sputtered around our apartment and then and eventually our house.

“Wee! Wee! Wee!”

At five, after we moved her away from her friends and family to a new state to find her voice, she looked out the window at the new neighborhood kids riding their bikes. She took my hand and lead me down the stairs then down the basement stairs and to her bike. She climbed on her larger pink bike still with its training wheels, gripped the pink padded handles from underneath and sat there. She sat there and then she sat there and then she cried. She knew she should know what to do, but she didn’t and so she cried some more.

Savannah was eventually put into physical therapy to help with gross motor skills and motor planning. One out of eleven goals was to learn to ride a bike. The bike was large with three wheels. It had an ugly curved black back support, a belt and clunky non-pretty pedals.

No part of the bike was pink.

One year later Savannah was riding the ugly bike with minimal help from her therapist. (Steering was still a challenge!) Savannah was so proud of herself. It was fun. It was typical. It was something she could with friends. Savannah loved physical therapy. There she could ride a bike. Unfortunately that is the only thing she could do. Despite her best efforts, she had not met any of her other goals. The insurance company decreed the physical therapy was not helping and services where discontinued.

Savannah lost her bike. For the past five years, we have tried to obtain an adaptive bicycle. We have applied for grants, for government programs, for private programs and jumped on every waiting list we could find. We are still waiting. Each day we wait is a day Savannah cannot relate with the neighborhood kids. Each day she gets older, the more awkward it becomes.

There is a new contest. Please vote and help Savannah get her bike.

https://www.friendshipcircle.org/bikes/triaid/


Thank you, Katie!

20140116-172850.jpg
I’m not one to watch daytime talk shows, but then Katie Couric had an episode on mental illness. I knew I had to watch. Usually, when a talk show addresses a disability (Autism and ADHD are popular subjects) it’s to draw in an audience, make a statement and, to be honest, rarely is accurate. So, holding my breath and with great skepticism, I watched Katie.

I can only say thank you.

Okay, I can say more. Living with a child with mental illness, the sometimes violent, aggressive and too often self-injurious kind, I can say how much I appreciate the bravery of the parents on national television, the realism of the professionals and the honest decision of Katie Couric to shine more light on a subject no one wants to face. The show exposed the horrid and ugly truth of living with mental illness and alternative reality of everyday life.

Everything the parents, Jeff and Sarah Blalock, mentioned resonated within me. They could’ve been talking about my life. “Watching your son change right in front of you”, “he’s a good boy, but he can go off just like that. We don’t know where it comes from”, “it could happen in the grocery store or over dinner.” All are statements that describe life with Savannah, but the one who that hit me the hardest was, “There are moments where all you can do is cry and pray tomorrow will be a better day.” I have lived that sentence countless times. Every mother I know with a special needs child, whether mental illness or physical defects or developmental delays, has lived that moment over and over and will continue to. It’s a moment that ebbs and flows, not like a gentle tide but instead a massive tidal wave, drowning you in sorrow and desperation until somehow you can breathe again.

“We live a dangerous world,” Sarah says, and its true. Living it everyday, I easily forget this is not the norm. Most families do not worry about leaving two children alone in a room together to play. Most families don’t regularly patch holes in their walls or keep pillows in every room for easy access in case a self-injurious head flies in the floor, the chair, the wall. When was the last time my neighbor had to restrain their child just to keep them safe? I have an eight year old son who still gets up in the middle of the night to come sleep with me. I’m sure he is too old, but how can I say no? This is a child that has been woken up by being hit or shoved or to the beastic screams and thuds of a neighboring room. How can I not let him sleep somewhere he feels safe?

Jeff and Sarah talk about the effects mental illness has had on their neuro-typical son. It’s tragic that the person usually most effected by a child’s disability is the one most often overlooked. I tell people, it’s not a special needs kid, its a special needs family.

But that’s another blog for another day.

Jeff and Sarah both stress how deeply they love their child. I’m certain that is the hardest part. You cradle a colicy baby full of love, knowing it will pass and hoping for future triumphs and dreaming of years of fun and laughter. Somewhere along the way the fun and laughter turns into coping and surviving. I have replaced couches and repaired walls. Savannah has given me bites and punches and kicks and one concussion. But she is still the baby I held. We still have fun. We paint our toenails and work puzzles and giggle at cute boys. But when she sleeps, most often after one of her bad days, when she lays sleeping after the banshee screams and self-abuse, that’s when I see the sixteen month old girl who loved to dance, the two year old with a contagious laugh, the three year old that played drums at three in the morning.

It’s the love that makes it so hard, and I think that’s something Katie Couric’s show exposed.

If you would like to take 15min to watch Katie’s recent show on mental illness, it can be viewed for no cost at the links below. I highly recommend letting it expand not only your knowledge but your compassion.

Jeff & Sarah Blalock: http://katiecouric.com/videos/parents-of-a-child-with-mental-illness-share-their-story/

Professionals Dr. Harold Koplewicz & Muriel Jones:

http://katiecouric.com/videos/what-every-parent-needs-to-know-about-mental-illness/


Back to Better

20130930-063141.jpg
We finally caved when Savannah’s boot breezed past my face, the heat of it tingling my lips. We drove the rest of the way home with her screaming and banging on the glass, trying to escape. She repeatedly smashed her head into the window and her fists and her knees. Fears of cops filled the gaps of the anxiety laden air. We had to make it home, but we were hours away, and had found traffic.

The next day we sat in the doctor’s office. Our regular and fantastic pediatrician was on vacation, so we were seeing his partner, Dr B, for the first time. Purples, blues, pinks and greens tainted Savannah’s beautiful fair skin. The bruises and knots and scrapes started in the center if her forehead and littered one cheekbone and her chin. They covered her arms and legs and torso, even the tips of her feet were tarnished. The deepest stains were on the sides of her hipbone, from punching herself; the tender length of the outside of her arm between the wrist and elbow, from slamming her arm on the floor, the table, the chair; and above her Achilles’ tendon, from repeated beatings into her footboard.

My bruises seemed minor only to hers. They fell across my skin, down my arms and legs and back and hips and shoulders. They were from punches and kicks and bitings. My muscles ached, and my flesh was tired. My body seemed fueled by adrenaline and fear. The fear coursed through my veins, making me jittery. What if Dr. B didn’t believe her bruises were self-inflicted? It did seem unbelievable that this beautiful little seven year old child could inflict this on herself. The fear we could be blamed was poison. I held my breath and bit my lip.

As we talked with Dr. B, it hit. A full blown, albeit short-lived, episode. She lunged and screamed and threw her head into the wall. John tried to pick her up. She scaled him, still wailing and kicking and beating and biting, until she finally passed out. The doctor turned to me. “You realize this is not normal?”

I exhaled. Dr. B understood, and the process of pediatric psychiatrists to medicate for self-abuse began.

It’s been four years. Medications have helped, although it fluctuates. There are always adjustments to be made and tolerance levels change. Some days are great, others are as difficult as before. As I sit and look and the recent bruises staining my thigh and as I ice my wrist, I remind myself it’s just one day. This used to be everyday. I cling to the hope or prayer or whatever it may be, that tomorrow is back to better and not the beginning of a decline that tells us its time to change medicines once again.


More Eggs, Less Sand

20130913-061042.jpg
More Eggs, Less Sand

We had found our wonderful rhythm. Joseph accepted there would be daily bookwork, and we got it done and were having fun. We had found our daily Tuesday. The flow was easy and active and effective. We had our eggs securely in the mason jar and enjoyed letting the daily sand fall around it, until we added more eggs.

This week therapies started back. Monday, Tuesday and Thursday, Joseph has a therapy at one o’clock, which means leaving at 12:30. Therapy ends at 2:00, when we rush to pick up his sister at 2:30. That’s an hour and a half those eggs have sucked from our day. All schooling after 2:30 fluctuates on his sister’s disability and her needs on that day. Besides, on Tuesday afternoon he has acting class and Boy Scouts, and Wednesday afternoons there is horseback riding and his sister’s therapy.

We are at the end of our new egg week. I think we’ve figured out where to put the eggs, the problem is sliding the sand back into the jar. I’m certain by the end of next week, we will be content with our new rhythm, but all of those tutors I was so looking forward to adding, will have to wait. One more egg and there will be nothing left except an omelette.


a Fearless Fieldtrip

20130912-145944.jpg
The morning of our first field trip, I was tired and sluggish. Hiking and exploring and discussing was the last thing I wanted to do. Besides, we had finally found our studious rhythm, and I wanted to enjoy it more. I knew Joseph would be flexible, but I also knew it was just an excuse. I poured myself some extra caffeine, and we headed out the door.

I honestly thought four hours would be too much time. I didn’t realize that it wouldn’t nearly be enough. We looked at beehives and bees and were fascinated at the differences between stingers. We learned about the Creataceous Edmontosaurus, Tennessee’s only dinosaur. We studied the water life and the wild life, and then we made new friends.

We hiked for hours with our new homeschooling friends, teaching each others kids along the way. The boys exploring and discovering together. Joseph collected fungus and leaves and moss and water to look at under his microscope and to press and save. We listened to birds calling and looked at chipmunk holes and touched beaver gnawings.

At lunch we left our new friends and headed for our picnic, just the two of us . . . Or so we thought. A few minutes into lunch, our guest arrived. She was hesitant and curious. Each time we thought she’d not come closer, she came closer. Closer and closer, until she ate a carrot straight from Joseph’s hand.

The experience was immense.

After she ran into the trees, we packed our picnic into the car and entered the surrounding woods. Off the trails, leaves crackling beneath our shoes, our breaths ragged, we searched with a carrot in hand. Joseph tried to track the deer, but she was gone. He named her Fearless because she wasn’t without fear, she just had less fear than other deers.

All together, we ended up hiking just under four hours and still had so much more we wanted to do, but Fearless was the greatest experience. Joseph actually called her to him, with his slow and gentle manner and his soft clicks and whispers. All traits Joseph only seems to discover around animals. He even wrote of her in his journal the next day. Fearless was an experience he could never learn in a classroom, and one he’ll never forget.


Too Many Miles

20130901-143340.jpg
Joseph and I were driving down the street, on our way to CVS, then to pick up Savannah, then to horseback riding, then to occupational therapy. It was an incredibly busy, typical Wednesday. Savannah had allowed me about four hours of sleep, and so I had picked up a toxic 20 ounce vice if classic Coke, hoping the sugar rush and caffeine might keep me awake. Besides, I was fighting off the back-to-school muck Savannah had brought home and knew the carbonated water would soothe the sandpaper coating my throat.

As we hurried down the road toward CVS, I opened the coke, releasing a sticky caffeinated geiser. It spewed over me, drenching the driver’s seat, morphing the steering wheel into a sticky mess. Joseph stared at me wide-eyed. I looked at him, his large eyes waiting for my reaction, uncertain and stunned by the carbonation that still trickled down the bottle, over my fingers, staining my thigh. I couldn’t help but laugh. Joseph began to laugh, forcing me to laugh harder and him to laugh harder, and it cyclically continued.

Since then, I’ve been reminded of our Mayo visit. Somehow, in Minnesota, every meal I managed to spill something. I don’t know if it had to do with the fact that Minnesota has amazing food or the fact I was suffocating in apprehension or just that I was food-clumsy, but every meal created more mid-west laundry.

Our Minnesota week was hard. The air was filled with the fear of what we might find. We carried the burden of entertaining the kids in a hotel room that was much too small. We lived surrounded by needles and tests and sterilization. We also lived surrounded by doctors, waiters, and strangers who were full of compassion and respect. We held the blessing of new friends and fellow patients and magic book-men. We breathed in the knowledge of some of the world’s greatest specialists.

We were trapped in a great freedom.

It is impossibly hard to be miles away from the only people searching for your answers. And yet all there is to do, is wait. Wait and take selfish advantage of every moment. The dual mitochondrial genome analysis takes six to eight weeks. I thought it was difficult to wait the few weeks for the NPC, now there are weeks more to wait. The tests can’t even be run at Mayo and have been sent off to Baylor. There’s nothing else to be done. Still, even though it’s only waiting, even though the tests aren’t even there, it’s too many miles away.


Follow

Get every new post delivered to your Inbox.

Join 534 other followers

%d bloggers like this: