One Foot in a High Heel and One Foot in a Sneaker: A Daughter Nearly Lost

Most people swear by their doctors. Specialists are even more revered. I needed both for my daughter and looked long and hard for the best of the best. It has been an indescribable journey to places in the heart and states of mind impossible to ever fully convey, with an extensive cast of characters in and out of the medical profession. One small conclusion? To this day I still maintain that every doctor should spend some time with their patients in their homes. Imagine what my daughter's neurologist could have learned from watching her have seizures, slurred speech, memory loss, and coordination weaknesses, with nothing but tactile memory to reassure her that she belonged where she was and not somewhere else.

Sometimes having the very best doctors just isn't enough.

When my four year old daughter developed an unusual seizure disorder we immediately began searching for the best doctors we could find.

The initial diagnosis, or lack of one, came from a renowned neurologist: Christine was not epileptic. Her seizures were non-convulsive. None of the standard seizure medications worked. She would simply pass out and stop breathing. All we could do was sit there and watch her turn blue and be as limp as a rag doll while we waited for that all-encompassing big breath that came after agonizing seconds.

This went on day after day, night after night, sometimes ten or twenty times a day. A good day was around fifteen and bad days ran fifty plus -- for the next eleven years.

It wasn't a disease, it was a condition. It might or might not last. It definitely was causing brain damage, motor skill damage, speech delay and memory loss. Imagine looking into your daughter's face and having her look back at you not knowing exactly who you are or where she was or why she was lying on the floor, day after day after day.

Sometimes even the best of doctors can be wrong beyond belief.

Standard seizure medications did not stop the seizures. Combinations of stronger seizure medications were prescribed, all toxic and with myriad side effects.

Christine was lost and confused most of the time. Many of the medicines left her little better than a zombie. She never complained, rarely cried, spoke very little, moved even less. And still the seizures continued. By age eight we were advised by two specialists to institutionalize her.

This was when I decided to take control and follow my instincts. No one knows Christine better than I do. I know exactly what she can and cannot understand. I simply capitalized on this information.

After each appointment with the neurologist I began spending more and more time with Christine, repeating all the hand and eye examinations the neurologist generally began each session with. I taught her how to walk on tip-toes, to walk backwards, stand on one leg and then the other, sip through a straw and lastly to jump. I created more and more games just to keep us all doing and thinking but most of all to keep Christine's fund of knowledge from slipping further away.

In my mind, the more I could teach her to do the better she would be. I had no idea where I was going with this and I certainly did not have any particular goals in mind, I simply wanted Christine to be able to understand and accomplish everyday things. I did not look to the future -- I simply stayed focused on today, right now, this minute.

The specialists told me I was wrong, it was pointless, and I should give up and consign my only daughter to the sterile hallways of some faceless institution. I ignored them, I defied them, I refused to surrender.

Sometimes the best of doctors have very limited imaginations.

Christine will be thirty this year. Our family has survived...damaged but together still. She lives in a wonderful group home over an hour away. She has kept her job at the local college's dish room for over two years. She's an avid reader and loves to write stories. She currently has five published books (each about 25 pages) with original art. She can cross stitch, crochet, and bead. She's a whiz at 500 piece jigsaw puzzles. Her abilities are simple but her imagination is huge. She may require twenty-four-hour supervision, but every year she matures by inches. She will forever live in a world where she wears a sneaker on one foot and a high heel on the other, but at least she has a life and not an institutional identity.

I've learned many tricks and a few huge truths along the way. I remind myself of them often in order to keep my depression at bay and my emotions under control:

False hopes are more dangerous than your worst fears.

Expectations can kill you.

Don't wish for anything.

There's no going back except in your memories...and most importantly:

It takes a lifetime to sort things out.

This is not a world for the disabled. My daughter is mentally challenged. She is at the mercy of a number of poorly constructed, limited or outdated programs, but I've become a fierce advocate for her and can go toe to toe with the best of doctors and specialists. I learned long ago that sometimes even the best of doctors are not enough -- but I am.

This is the final paragraph of my daughter Christine's first book, The Story of My Prince and Me:

In honor of their love for each other being so strong and true Christine and Vincent decided three months later to renew their wedding vows and this time Christine was dressed in golden yellow like any princess would who would one day be a queen. Vincent wore a orange and brown suit since any prince who would be king one day would be allowed to wear and after they had a long kiss and were married a second time in the presence of God Christine and Vincent knew they were the most devoted husband and wife there had been in years. Their passion together and their story was only at the beginning. Their story still had many chapters to it that had not yet been told but hopefully would one day be written in the stars. To be continued...

Comments

[Winterrobin]

I’ve known a few doctors who have taken at least some time to try to get to know their patients and the families. I agree, however, that doctors of that ilk seem to be few and far between these days, and socialized medicine does not help the situation. I knew some of the story you wrote but not all, and I now know from where your son gets his talent for writing. Thank you for the moving and well-written account of yours and your daughter’s story.

[Kyrina McCormick - Huffpost Blogger]

Doctors will always be my first line of defense. We need what's in their heads, their hands, and of course their experiences. I learned to not be robotic about illnesses and simply do as I'm told.
I also learned that gut instincts should never be ignored. As for my son...word­s were always his first passion.

[Irishdawn]

I'd be interested to read more details of how your daughter developed; what worked, didn't work. What or who to avoid. Where do we need to focus our energies as a society,? Who's doing creative work in the area of rehabilitation? How would a doctor respond to this blog post? Where is the conversation happening, if at all?

[Kyrina McCormick - Huffpost Blogger]

When my daughter was experiencing seizure after seizure and her basic fund of knowledge was slowly deteriorating I learned to get some information in (ABC's, left, right, naming things) in very short spurts. Index cards and pictures cut out of magazines gave me a quick way to keep reinforcing information. Removing all additives and preservatives and including vit.E and selenium to her regimine of meds worked for her as well. Routines were essential and reading out loud a must. As to who's doing what now, well that's what I'm searching out. My daughter will be 30 this year, I need to look for things that will work for her aging.

[Rakshaka]

It's amazing what you learn about the people you grew up around and with so many years later. I didn't know what I was reading when I first started reading it, but caught on quickly. Your story really touched me and shed light on a lot of things I was always afraid to ask.

I miss you and your whole family and wish them well and keep them in my thoughts often.

[Kyrina McCormick - Huffpost Blogger]

Never be afraid to ask. Never forget to be curious. Ask my sons, I still hound them with questions!

[Noelle Bataille]

Both heartbreaking and heartwarming at the same time. Sharing your story puts a human face on what people think of as "instituti­onalized". So rarely is there"textbook" case, and I often think that sometimes no words will describe what a doctor would see if they were in your home. Your strength and realism is inspirational, as is Christine's own bravery.

[Kyrina McCormick - Huffpost Blogger]

Christine represents a whole world of individuals who simply fall between the cracks because they can do some things but not others. They can speak but have impaired judgement. Are healthy but developmentally damaged. She's a wonder, I only write about her.

[Ours]

Your story, and the story of your daughter, is both heart-breaking and heart-warming. It is a tough, sad thing, but also a message of pragmatic hope The truths about the stumbling blocks within the medical system are bad today, and I can only imagine how much worse they were twenty years ago. When you were trying to find your own way, what resources did you use, other than your gut? What kinds of networks of support or information did you tap to try to find other answers than the ones you were being spoon-fed?

[Kyrina McCormick - Huffpost Blogger]

25 years ago all I had was the library's reference section to delve into. I'd take my kids to story time and run to the section with my notebook and start writing down bits and pieces of info to look into.
Eventually I got good at medical research and finding the names and places to call for more information. My last step was nutrition. My daughter was on such toxic medicines that I needed to understand how to feed her in order to keep her healthy. This took the longest but it worked from day one...no additives.­..no preservati­ves...no nitrites..­.no animal fat...vit.­E...seleni­um...As for networking, I had no one and no group literally.

[PlaceboStudman]

This is what bothers me so terribly much about the whole "health care" debate. Politicians don't talk about health care, they talk about health COST. How to save money. How to best serve the patient without making the patient (or the insurance and drug companies) go broke.

But, somewhere in the equation, the politicians, and even the doctors forgot the human factor. People don't understand why I am so vehemently against a single payer Socialist type system. Simply, because it reduces people down to cost-benefit analysis statistics. And the moment someone is turned into a number or a figure, their needs are put lower on the priority list.

Doctors, nurses, specialists all need to do a serious revamping of the medical care system. From the inside out. Financial cost be damned, right now. Let's get those wonderful people who work in the health care professions to start treating people, not diseases. Worry about Health Care, not Health cost.

[Kyrina McCormick - Huffpost Blogger]

We live in a system filled with financial considerations and insurance costs that fundamentally rule. Pharmaceutical companies are untouchable. No matter what, in the end, you are responsible for your health and wellbeing. That's what I learned and that's what I work with first and foremost.

[Catriona]

Brilliant.

I was a disabled child -- I still am somewhat limited -- from injuries sustained in a crash. You are spot on. Especially this:

"False hopes are more dangerous than your worst fears.
Expectations can kill you.
Don't wish for anything."

The hope-junkies with their hyper-cheerful attitudes and expectations of endless miracles, beliefs which they expect you to share, will destroy what strength you have. (Of course, these people are never there to deal with the day-to-day difficulties and setbacks.) You have to deal with REAL possibilities, with both positive and negative outcomes.

It helped that I had a savvy doctor who always told me the TRUTH. No false hopes. Some 'nevers', lots of 'we'll just have to sees', and the occasional 'I think so' was how he dealt with my questions, limiting those false hopes and expectations to the possible.

Years later I sent him a photo of me atop a small mountain in Mexico. Still scarred, still limping (as I would remain for life) I had managed to climb the steep path to the top. (I never was able to run though. No matter.)

[Kyrina McCormick - Huffpost Blogger]

I could picture you standing at the top of that mountain you know. You have your own truth and strength and that's what matters most. I'd rather have the truth than a soft version, and I'd rather know what I'm dealing with here and now than ever hear "we'll just have to wait and see". Now that's something I know you understand. Write your story, it matters.