Tag Archives: disabilities

Annuals and Perennials 

 

Every year it comes, the dreaded annual. 
Living with a child with disabilities, the grief comes in waves. No matter how long you live in acceptance, milestones come that usher in fresh reminders of what your child cannot do, and the grief floods in again.  Another child’s success, a failed outting, the annual doctor’s visit.  
Savannah’s annual visits are my downfall. Every year I am reminded not only of how far away she is from her peers, but how far away she is from where she used to be. There is a review of skills she may have lost or that she is having trouble regaining. Annuals are a reminder of what is not blooming. 
This year Savannah is thirteen. Thirteen is a whole new level of development. The teen years have begun, and my teen still can’t bathe herself. But this year, there are things my child can do. 
In the past twelve months (really just the past six), Savannah has gone to the theatre for the first time; she is getting 80’s-100’s on modified AR tests; she is following directions; she is controlling her anxiety; she has pet, more than once, both dogs and cats; she can type her first name without help; she will spontaneously use her AAC device to communicate; she has eaten in more restaurants; she helps with the dishes; she is wearing eye shadow and lipgloss.  
The doctor sat there stunned at my words of new things and lost skills that Savannah is now able to do. Moreso, the doctor was stunned by Savannah. She teased the nurse and listened to the doctor. She showed the doctor her eyes and nose and mouth and ears. She remained engaged. It was obvious that Savannah was blooming. 
Savannah is blooming. 
Five years ago, and every year before, Savannah’s weight remained in the 10th percentile. Five years ago, Savannah wore a 7 slim.  Four years ago, I could hardly squeeze her into a size 18. Medications had created an insatiable, obsessive hunger. Her weight had grown dangerously into the 95th percentile. Food had to be measured and proportioned.  It was hidden in the basement in tubs and re-measured and re-stocked in the pantry each night. Calories were calculated in a notebook every day, every meal, every snack. Sneakers were bought for walking, which turned into running. And now, after four years, the calorie notebooks are being thrown away and new running shoes have been bought. Savannah is officially in the 55th percentile. We will keep the healthy lifestyle, but we will no longer struggle. No longer worry. No longer obsess over food. The days of food rationing are over. 
This year the dreaded annual was a celebration. This year, it was a perennial. 
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Let the Joy Begin

Joy 2015

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.


Smoking Caterpillars, Vanishing Cats and Humming Girls

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My daughter is so brave.
We entered the Mayo Clinic’s St. Mary’s hospital early Monday morning. We rode the shuttle from the hotel with a suitcase, a purse of toys, an iPad and a giant stuffed cucumber. We were admitted and taken back, past the oil-painted nuns,up the east elevators and to the prepping room in Joseph. She was anxious and edgy, but we made it through the waiting. She did try to escape a few times, but we made it.

She has had two other MRI’s, both with sedation, but I doubt she remembers them or if she does, I doubt she correlated those experiences with this one. I wonder what she thought as we forced her to change clothes and refused her her red shoes with polka dots. I made promises to stay with her until she was asleep and to be there when she wakes, but how comforting does she find that? I told her they were going to help her take a nap with medicine that would give her wonderful dreams like Alice in Wonderland with smoking caterpillars and vanishing cats, but she only anxiously hummed as she was wheeled down the chilled labyrinth corridors. Not having eaten, she begged me for dum dums and red apples, and I promised her all of those as soon as she woke from her nap, never knowing if there were red apples at hospital.

St. Mary’s was incredibly accommodating, allowing me back during sedation. They cooed over her iPad case and polka dotted shoes (which they decided to let her wear). She resisted the mask but once on, quickly breathed her way into a deep sleep.

We were told to expect to wait three to four hours, but after getting a pager and eating lunch and moving rooms, after two pages to the desk for phone calls from nurses and finding the monitor to watch her progress and borrowing a joke from the jar with her brother, it took no time at all.

She was restless but mostly drowsy. The sedation hung heavy around her, clinging to her flesh. Moments after I told her I was there, she surcommbed to the drugs and drifted back into the fog. Her head was bandaged, an attempt to protect the EEG leads. I knew they would be there but wasn’t prepared for how terribly tragic it would actually look. Her entire head was bandaged, her lips pale and trembling, her skin frigid to touch. On occasion, one eye would part and aimlessly roam the room before shutting again, only to let the other eye repeat the action a few minutes later.

She continued to kick the heated blankets off, but her body trembled mercilessly. “Her temperature was down to 35 (95 Fahrenheit) when they brought her out, so we’re trying to keep the blankets on her,” a nurse informed me.

Not only had her temperature dropped unexpectedly low, but so had her heart rate. With all of her sedations, there has never been a complication. I remained perfectly calm, as I held her hand and spoke with the nurses, but my heart thudded against my sternum. A cardiologist was called in. He had already come by a few times to check on her, and continued to monitor her by phone. One thing I have learned about the Mayo, there is never time for a patient to want. Phone calls and texts are made as soon as a need arrives, expected or not. Even though her heart rate was increasing (it was up to 50 by the time I arrived), the beat was irregular. By the time the decision was made for an EKG, Savannah was awake and irritated. She tugged at her finger monitor, grasped at her I.V. and clawed at her bandaged head, fighting to sit up with an animalistic whine.

It was a nursing student from Indiana, interning at Mayo, who had the brilliant idea to fetch an iPad. I wish I was better with names. I wish I could thank her properly. I wish I could give her the credit she’s due. I can, however, be thankful that Savannah’s MRI occurred during her ten weeks with Mayo.

Drowsily, Savannah pushed the nursing student out of the way and began to rummage through the apps. She fussed and hummed and distractedly swatted at the EKG tech, like a bothersome bug, but she sat through the EKG focused on an app, except for the occasional disgruntled look.

With her finger monitor removed, a team of nurses and the iPad still on her lap, we headed up the elevators, back through the labyrinth, down to Francis and our new room for the next twenty-four to forty-eight hours. She had done it. Savannah had made it through the MRI, not fully understanding, at least I don’t believe she fully understood, it was just the beginning.


Too Much To Wait For

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Tomorrow’s the day.
We are tucked in our beds. Savannah’s suitcase has been re-packed with EEG-friendly clothes. We have reached the food prohibition time. Now, I am waiting for her to fall asleep so I can hide the snacks and water and everyday clothes. Then I can pull out the toys I’ve snuck along, just for a hospital surprise, in the hopes she’ll play with them.
The rational part of me wishes she would go to sleep. Midnight has passed, my body is tired, and the shuttle leaves bright and early. The realist part of me knows that even if Savannah was asleep and the food was hidden and the toys were packed, I would still be lying here awake. I would be waiting for tomorrow. Waiting for the shuttle, the anesthesiologist, the insurance approval.
There’s too much to wait for to sleep.


Tornadoes in her Mind

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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.


Bowling Without a Safety Net

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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.

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.


the Bike That Wasn’t Pink

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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/


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