Tag Archives: non-fiction
It has started, and this year it is already so much more. More joy. More dresses. More excitment. Joy Prom is seven weeks away.
Our church, the creator and host of Joy Prom, has dresses and tuxes at no cost for the honored guests. So, on a joyful Tuesday evening, Savannah and I met up with Ms B and Ms D. Ms B is the large-hearted woman who co-ordinates not only Joy Prom but the special needs ministry at our church, and Ms D is Savannah’s personal angel who makes personalized lessons every Sunday just for Savannah to learn the greatness of God. They are our blessings.
We arrived at the church for Savannah’s personal fitting. Like some upscale store catering to a movie star, dresses were brought in and shoes were laid out and accessories were bountiful and pop-tarts and VeggieTales were there on demand.
For over an hour, Savannah was Joan Crawford, Grace Kelly, Betty Davis. She tried on purple dresses, black dresses, pink dresses of one shade and then another, Dresses with sequences. Dresses with layers. Dresses with many colours. The child with sensory issues wore bracelettes and rings. Eventually, she settled on an off-red, one-strapped dress with flowing scarf, accented by silver sparkly three-inch heels. Her first pair of heels. She chose, out of all of the shoes showered at her feet, her first pair of heels. I took my little girl to try on dresses and an hour later left with a beautiful excited young lady.
Savannah left that evening with a new dress, a purse, jewelry and of course shoes. More importantly, she left happy, confident and feeling both beautiful and loved.
Seven weeks before prom: let the Joy begin.
The final results of last year’s Mayo Clinic tests, cumulatively over 500 degenerative possibilities, came back negative December 28th. There it sat in our mailbox like some generic Christmas card. Typed up, mass produced, a statement of facts all combined to carry the wishes and blessings we hoped for.
As wonderful as the news was, it left a gaping hole of what was next? For six months I had lived with the fear my child was dying, waiting for the why and the when, clinging to every moment and feeling guilty for the times when I didn’t. Now what?
It does seem to be the pattern. Every test, every doctor, every hope ending in a new beginning. A new quest. A new start down a different road that is yet to be found.
Our next path is to retrace an old one. We are headed back to the Mayo Clinic for yet another MRI and EEG in the doubtful hope that this EEG will be successful. It will be our third. The first was inconclusive but didn’t show signs of seizures. Four years later, Vanderbilt re-visited the EEG. They wanted an overnight EEG. After an hour and a half, Savannah woke mid-panic attack, swiping the leads from her head in one swoop of her tiny arm. She proceeded in full panic form to rattle the metal railing and toss the nightstand across the room. We were kindly escorted out at 1:00am. We were assured that enough data was gathered to rule out seizures.
Seizures were an early concern. Spontaneous loss of skills is commonly the result of brain trauma or seizures. But we haven’t found either.
A few months after the Christmas news sunk in, I met with Dr. S and spoke with Dr. T. Dr S was stunned by the negative test results. “That can’t be,” he responded. “I’ve seen this child for years. I’ve seen the regression.” I bounced Dr R’s idea of revisiting the EEG for forty-eight hours. I can’t imagine forty-eight hours of leads and wires when Vanderbilt couldn’t accomplish two hours of it. Dr. S made the point, “It’s like chasing tornadoes. You can see the devastation after a tornado but its hard to pin-point exactly where a tornado will hit beforehand, making it near impossible to catch.” We may not have seen or caught the tornado in her mind, but we can see the devastation. We have to at least attempt to catch the tornado and the longer the leads are on, the better the chance.
Dr T informed me that there are certain types of seizures that exhibit in violent and aggressive outbursts, and seizure hallucinations present differently than regular hallucinations and would not have been noticed at her time in the Vanderbilt Psych Unit. More options. More hope. More needles to grasp at in the hay.
But I have to know.
There was an ancient belief that to name something was to claim power over it. That’s what I need. I need to name this demon that strives to steal my daughter from me. I need to know the medicines, the therapies, the daily life modifications are what they need to be. I need to know what life will look like for her 20 years from now and how to make those decisions. I need to know there will be a 20 years from now.
So we are headed back to Mayo. Back to Minnesota and beautiful countryside and incredible food. We are headed back to the beginning.
There’s no way to know what to expect. There could be a melt down or an aggressive episode or a potty accident. On the other hand, there’s no way to know what to expect. There may be stares, judgements or ignorant words that hurt nonverbal feelings.
Every outting is a gamble. There’s no guarantee nor predictability. All I can do is consider if there’s a possibility Savannah may enjoy it and be prepared with an exit strategy.
Last night we went bowling. Not Special Olympics Bowling. Not bowling with the expectation of disabilities. Not bowling with a safety net. We went bowling. Ordinary bowling alley with ordinary kids on an ordinary Tuesday. . . Well, it was suppose to be an ordinary Tuesday. Instead, it became the Tuesday we went bowling.
Savannah’s brother is a Cub Scout, and all families were invited to bowling. All families. All parents. All siblings. And so we went.
At first Savannah was overwhelmed by the noise. We lingered in the entry way, enjoying the rubber duck collection in an arcade game. And then in happened, her brother’s den leader came over to say hi to Savannah. She visited and admired the ducks with Savannah before returning to the boys. Then the assistant troop leader came over and said hi to Savannah while trading in her shoes.
Once Savannah saw the bowling shoes, she was ready. Once her shoes were on, we cut through the noise and crowd and to the Scout lanes. She only bowled three frames before she was ready to leave with a large proud smile, but while there, with each throw, the Scout parents cheered. It may have only been three frames, but they were three successful frames. Three frames that taught me, we could bowl again.
There’s no way to know what to expect. There can be smiles and bravery and bowling. On the other hand, there’s no way to know what to expect. There can be acceptance and cheers and hidden blessings.
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:
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.
Judy Mae Jamieson was fifteen. It was the summer between her junior and senior year, and the Southern sun was warm and inviting. Her horse, Buck, lingered in the pasture, ready to run on the levee. The inviting waters of Blue Lake called her name in rhythmic ripples. Her younger sister, Sondra, had already escaped the house and entered into summer, but Judy had stayed behind. It was the summer of 1960, and today Judy would be trained on how to have a coloured housekeeper.
Esther and Oodie had one daughter, Baby Sister. She was around Judy’s age. Her skin and eyes were as dark as Esther’s, but her tall, slender, silent nature was like her father. Usually, Baby Sister stayed with Oodie’s mom, but today she had come to the Jamieson’s house with her mom. Esther and Alice had decided that this was the day both girls should get a glimpse into their future.
Judy showed Baby Sister how to use the vacuum and explained what was expected with the mopping and furniture cleaning and base board scrubbing and light fixture dusting and ceiling cobweb removal. Baby Sister towered over Judy, nodding, with the occasional “yes’m” escaping her lips. The gentle words would flutter through the air, causing ripples that carried a heavy resentment which settled over Judy, making her flesh feel tender and raw. It was obvious Baby Sister had no intentions of being a Southern housekeeper. Judy hoped Baby Sister knew she had no intention of keeping her, but Judy said nothing. Instead, she showed Baby Sister where to find the cleaning supplies and thought of Buck alone in the pasture.
Hours passed, and the aroma of lemons filled the small white house. It clung to the lingering resentment, which Judy inhaled with each breath. She couldn’t wait to spend the next day at Blue Lake, drowning the guilt in the wild summer waters. Eventually, Baby Sister came to her, finished and ready for her work to be inspected. Her fingers were pruned with cleaner, her knees tender, her pride tarnished. Judy inspected the cleaning to ensure it was immaculate. She knew that after Baby Sister left, her mother would retrace every step to be certain it kept with her standards. Alice would not only be critiquing Judy’s ability to handle a housekeeper, but would be reporting back to Esther on Baby Sister’s work. Judy had to make sure it met the standard.
That night Judy lay in bed, grateful that the day had passed and grateful that the next day began Esther’s vacation. She was grateful that she would be spending the next day at Blue Lake cleansing the lemon sent from her flesh and the day after that riding Buck far into the future, where she wouldn’t own a housekeeper . . . at least not for many years.