Friday, October 28, 2005

I'd of had to miss the dance

This is another one of my older pieces... I wrote this about a year ago. It's based on a discussion some of us had about medical conditions, how you deal with them and that alien concept of "a cure"
click her to read I'd of Had to Miss The Dance
I have cerebral Palsy (CP) or to give it the exact diagnosis Spastic Cerebral Palsy Diplegia. I've had it my entire life and I've had to use a wheelchair to a certain extent my entire life. I think I find it relatively easy to deal with the majority of the time because I have never known any different. I've known what it's like to be able to walk a slightly longer distance than I can now but I've never known what it is like to run or jump/ I have known what it is like to be able to walk without the fear of falling over and hurting yourself that I sometimes feel when walking in crowds now. But that was when I was six years olds and all six year olds are invincible, nothing will happen to them, they won't get hurt. Or so they think.

Now though I am 22 and I know I'm not invincible. I have suffered the scraped knees, bumps on the head and suspected broken bones that can result from the falls which are a part of day to day life if your balance is as bad as mine is. But I don't let that fear stop me. That fear is a very healthy thing for me, I believe, but only because it doesn't stop me. Instead it keeps me safe to a certain extent. Because I choose to deal with my CP by being very upfront about it, by viewing anything that can help me as a good thing and simply getting on with it.

Until I was 17 I used to walk the short distances I can handle unaided and spend the rest of the time in my wheelchair. I would grab onto the walls, the furniture or other people who happened to be around whenever I felt I was losing my balance. But I would always be too frightened to walk very much even though I wanted to in case I would fall so I would pretty much be in my wheelchair unless my parents or someone else in authority insisted that I walked. Then at 17 I got a rollator (walking frame) again for the first time since I was five or six. I also took a few minutes to explain to people that would be around me when I was walking about my limitations - to make sure they knew not to cut infront of me suddenly (I can't stop suddenly without falling although my walker helps a lot with this)., to make sure they knew that sometimes i do just fall for no apparent reason because that is part of what CP does. And I wouldn't say that I've completely gotten over my fear, I'm still nervous the first few times I walk in a new place or if I don't feel 100% well. But with that walker and by telling people about my CP and my walking I am able to feel that fear - but do it anyway.

When it comes to acceptance I believe that I'm as close to fully accepting my disability as I ever will be. Like i said above, i have never known anything other than having CP and although my condition may appear to others to have gotten worse, it is not something I have had to struggle to accept because that deterioration was something I choose to allow to happen and I know that in a way it was a good thing. I began to use my wheelchair so much more because it allowed me to do more, I didn't get so tired and I could get to classes at uni quicker. The problem that has come about as a result of that is that I can no longer walk as long distances as I used to be able to. So it could perhaps be said that my CP is worse. But I know that it's not really, and I know that if I worked at it I could get it back to a certain extent. I am working on my walking to make sure I don't lose the amount that I still have and I'm trying to gradually increase the number of times a week that I walk short distances. However I'm also a realist and I fully realise that my CP will never go away and there will always be decisions to be made and opportunity costs to weigh up about the way I live my life with my disability. So walking will always be very tiring for me, will make my legs hurt after a few minutes and be slow. Using my wheelchair solves most of those problems for me (and if i use my powerchair the speed problem is solved too) but the cost is that sometimes I use it when I could walk and then I gradually may lose some of my ability to handle distances walking, i may have more pain or i begin to walk slower. But if I'm not so tired and I can live a fuller more active life simply by spending 95% of my time in my wheelchair then it's a price I'm willing to pay.

I think that shows how much I have accepted my disability, something whihc some others might not understand me saying. I know some people who have CP and walk all the time with a mild limp or poor balance or whatever who say they hate having it and I think that maybe that stems from how well (or not) they have been able to accept the hand that life has dealt them. Obviously I am not in any position to be able to judge people and say for definite that is why but from my experiences and what I've seen I would assume that is why.

I use humour in a lot of situations as a way of helping to deal with it. I can't remember the exact quote but I once read something which said the one way to definitively take away the power tha insules and derogative terms have over you when someone tries to use them to get at you is to use them yourself. If i refer to myself as a spastic or a cripple it isn't hurtful any more and even if someone says it to you meaning it to hurt you it won't - it's lost its power and it once again appears as just one little word which can't do anything to hurt you. and that's how it should be.

But my using terms like spastic and cripple for humour (like telling my sister I was a club class cripple today because I got upgraded to club class on the train) is something which most able-bodied people don't understand. One of my counselors decided that it was a self protective mechanism that really the terms are hurtful to me and I must hate them i just pretend to find them funny as a way of avoiding having to feel that pain. she couldn't accept that that wasn't the case and so I never went back to her again.

The last time someone called me a spastic and actually meant it as derogatory (my sister called me a spastic for a joke the other day), I just smiled at them and said "that's right I am a spastic, I've got that form of CP." and they were just completely thrown off by that.

Spastic. S P A S T I C. Cripple. C R I P P L E. Two words which are meant to hurt me, which are meant to upset me. But do you know what both of those words represent to me... seven little letters in each of those words which spell out a whole lot of fun and laughter.

I've said it before, and I'm sure that I'll say it again. Political Correctness sucks... humour and laughter are the only way forward. Because there are times when if you didn't laugh about all the rubbish that life with CP throws at you, you would cry and I'd much rather spend my days laughing than crying!

Of course there I would be lying if I gave the illusion that there aren't days when it gets me down and I need a good cleansing cry to get it out of my system. But those days are now (thankfully) rare and the giggles far out number the tears. I think you need to have the down days because how else would you appreciate the good days if you didn't have bad days to compare them too? I really do believe that you don't know what you've got till it's gone.

If i was ever offered the chance for someone out there to wave a magic wand and make it so I had never had CP i would turn them down. It's been one of the most formulative experiences of my life - I like who i am and I wouldn't be the girl who sits at this computer writing this if I wasn't disabled. CP is just a part of my life, it's a very important part of my life which I'm proud to have, but it doesn't rule my life totally it just influences it - for the better I believe. It's like I wrote in my CP Rocks poem, how would I be me if I didn't have CP?

I think a lot of people can understand that. Everyone has painful or difficult experiences which at the time you wish hadn't happened but afterwards time brings the wisdom to see that they had to happen for them to grow as a person and become the person they are today. What I think a lot of people would have difficulty accepting is this...

If I found a magic lamp, rubbed it and out popped a genie offering to grant me three wishes like in Aladdin and suggesting that one of the wishes were to make it so I had had cp up until this point but that I no longer had it and from this day forward I would be able-bodied, I would turn him down.

I like who I am - wheelchair, muscle spasms, back pain and all - and I wouldn't want to change it for the world.

So many things I have done and people I have met I wouldn't of had the opportunity to do or meet if I hadn't had CP and so for that I am grateful that I've got it.

I think Garth Brooks said it best in his song The Dance

"This life is best left to chance
I could have missed the pain
But I'd of had to miss the dance."

Wednesday, October 19, 2005

Anniversaries v. Milestones

I suppose it is that time of year again. When I begin remember where I was and what Jenelle was doing last year, two years ago… three years ago. Two years ago today, we were in the hospital while Jenelle was in “status” - hoping she would make it home in time for her first birthday. Oh yes, Birthdays… those are really tough too. You realize your child is getting older, and yet it becomes so blatantly apparent that your child is so very far behind.
Please click here to read more
I’m not sure which is easier these days; anniversaries or milestones. The last milestone Jenelle actually met was laughing out loud. Most children do this at what… age 6 months? Jenelle was 2 and a half. Thank God for that though because I was about to lose my mind wondering if this child felt any emotions at all. It was probably the biggest highlight of the year (still holding out to see if she’ll start sitting up on her own before the end of the year.) The list of anniversaries for Jenelle gets bigger each year; her first MRI, her first EEG, the day of that phone call from the doctor that changed our lives forever and of course birthdays. I’ve learned to appreciate each anniversary as a reminder of where we’ve been, and of all the potential for where we can still go.

On one of my on-line support groups today, a Mother was remembering a horrible experience a year ago when her child seized uncontrollably for almost 2 hours. They were at an airport and had to be taken by ambulance to the nearest hospital… none of the usual methods to stop her seizures were working, and she feared her child was dying. Because we’ve known each other online for over two years, I too remember that scary day and how I cried and prayed for her daughter. I remember fearing that child would regress from the pro-longed seizures, but as it turns out she has accomplished more in this past year than most expected. Hindsight is a blessing, especially when you can appreciate your fear a year later, and know that the child is fine and doing better.

I supposed I prefer the milestones to the anniversaries. After all we’ve been through with Jenelle; we certainly do have more appreciation for those small milestones that she passes all too infrequently. Once Jenelle finally masters something she should have been doing at age 6 months, it feels like progress, and as if she may exceed our expectations now. Anniversaries are bitter sweet, and like milestones they come in and out of our lives unexpectedly and with great significance. I don’t acknowledge each anniversary out loud, but they are in my mind as the calendar dates fly by each day. A “big one” is coming in just a few days… Jenelle will be three on Saturday. Instead of tears of grief for the three year old child she is not, I have a tremendous amount of pride for the accomplishments she has achieved this year. It gives me hope for the coming days and for her potential in the future.

Thursday, October 06, 2005

Meet my Jenelle

My name is Kelly, and I am a married mother of two who also works full time as a litigation paralegal in a large law firm. I found my way here because our youngest daughter Jenelle has special needs. That sentence seems so simple and yet there is no easy or simple way to describe my child. She has literally stumped most of the world’s leading experts in child neurology yet technically all of the things we’ve tested her for have come back “normal”.

please read more about Jenelle's Journey
Jenelle’s biggest challenge is controlling her seizures. On top of that, Jenelle has very low muscle tone (hypotonia), cortical visual impairment (she’s blind), metabolic acidosis of an unknown cause and she has a G-tube for failure to thrive issues that did not surface until recently. Developmentally, she cannot sit up, does not use her hands to hold anything and does not talk –yet she makes babbling sounds and started gracing us with giggles this last May. She will be 3 later this month.

Jenelle was born at 37 weeks via planned c-section after a difficult pregnancy. She was 6 pounds 14 ounces with Apgars of 8 and 9. Pre-term labor started for me at 28 weeks and was primarily caused by a kidney infection that I had at that time. I was put on Terbutaline, and placed on full bed rest the last two weeks of my pregnancy. At birth, we had no reason to believe that anything was wrong. My gut started to tell me something was wrong around 6 weeks when I noticed she wouldn’t smile, and that she didn’t grab at toys. She could barely lift her head, or support her own weight at 12 weeks. By six months of age, we knew she was delayed, but hoped it was due to her pre-maturity.

She was diagnosed with Infantile Spasm (seizures) at 10 months of age, and that is when things really began. Many medications, hospitalizations, steroid injections, status seizures, immune system compromise, therapy and endless doctor’s visits and specialists soon followed. About 9 months after the Infantile Spasms diagnosis, Jenelle was diagnosed with Lennox Gastaut Syndrome, a severe and rare form of Epilepsy that leaves most of its victims with severe mental retardation, if they live past age five. Though that last part is scary to hear, I’ve since met many, many families with LGS who have children in their 20s, 30s and even 40s. Jenelle finally gained seizure control sometime in late July 2005. We aren’t sure what is working exactly but we’ll take it.

I remember the first time I read “Welcome to Holland.” I cried for hours and understood the beauty in its message. It helped me to come to terms and realize that I needed to be positive and strong about things for Jenelle and my family. I also remember one stressful day when a well-meaning friend left a copy of “Welcome to Holland” in Jenelle’s cubby at school. It was the first time I really “hated” reading it, though for the life of me I can’t remember exactly why. I remember that I wanted to scream, “Holland sucks and I want a refund! I want to be in Italy drinking wine and buying leather shoes like I planned! Where can I file a complaint against this fricken airline, and how can I get my money back!” I know each and every one of you has felt this way too.

So, thank you for including me on this blog. I’ve been writing updates about my daughter since her seizure diagnosis over two years ago. It is very therapeutic for me to put things in writing, and I hope that by sharing those thoughts with all of you I can help you see that you are not alone. They say the first year with a special needs child is the hardest, and I wholeheartedly agree. I’m not sure if things really get better or seem better, or if we just have to take a year to learn the ropes and understand. Today I feel as if having my daughter makes me a better human being. I hope you feel the same. Thanks for reading about us and best wishes to all of my fellow citizens in this land called “Holland.”

Monday, October 03, 2005


Certainly there are things that are far worse, but life with a child who is slightly immunodepressed can be exhausting.

Sleep - for all in the house - is hard when a child has near constant colds, sinus infections, or bouts of diarrhea.

And there's the constant concern: will she get sick from this? And if she does, will we end up in the hospital? All the worry is exhausting. It's so hard listening to your child struggling to breathe around so much mucus, and knowing that this might last for weeks - or months. Poor, poor baby.

Humorously, between when I wrote this and when I posted it, Ellie seems to have (so far!) missed the flu going around her school while I caught it. I am not enjoying the flu, but at least I can handle a couple of days of it without my electrolytes getting so out of whack that I end up in the hospital on an IV. I'd take these illnesses for her any day, everyday.