Category Archives: chronically ill children

Child care, children's therapy, chronic conditions, chronically ill children, family impact of MS or other trauma, family life, Uncategorized

Disability

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What, you mean that doesn’t look like a comfy sleeping position?

Disability is relative and not a  good determinant for value.

Our family recently found ourselves in need of a new dog to be a companion to the hyper one we already had.  With our family’s make up of various medical conditions, we got excited when J saw pets with disabilities.  When we  realized they were close to it, J started combing through their dogs looking for an ideal match.  We all piled in the van and headed off to meet a one-eyed dog in need of a home.  However, the one-eyed dog was intimidated by our loud and crazy 4 kids and hyper dog.  It wasn’t going to work…but thankfully the lady who runs the place thought of another of their dogs who might match.

Ziggy had his back legs/hip hurt when he was younger, but he is such a bundle of happiness.  He loves everything and everyone.  He trots after our hyper dog or plays stationary defense when he gets tired.  He lets our two-year old lead him around.  The biggest “disability” he seems to suffer is an inability to jump.  When I talked about him to my coworker, she said, “That’s a disability? I wish my dog had that disability.”  I figure his making the most of life without being able to do something other dogs take for granted just means he belongs with us.

Last week, I had a conversation with my son about MS in my life.

O: “Do you ever wished you didn’t have MS?”

Me: “I used to wish that I didn’t have MS, but over time I have come to accept it as just a part of the hand I was dealt.  I realized getting angry about the head aches, lack of dexterity, poor memory, etc. was not really helping me.  In fact the more I focused on it, the worse I felt.  In truth, I think I hit the lottery when it comes to the hand I have been dealt to live.  I grew up with parents who cared about me.  I’ve always had enough to eat and opportunity to learn.  Now I have a beautiful wife, four kids, a good home and some dogs to keep us company.”

O: “The headaches and stuff suck though.  I wish you didn’t have it.”

Me: “At this point I think wishing things like that is about as useful as wishing I had been born with the talent to be an NFL star making millions of dollars.  Wishing to be other than I am seems to belittle so much of what I am and can do.  I am probably not going to gain fame from my singing unless you can figure out how to make me famous for how poorly I sing and dance.  My bet is you will not grow to be the tallest man in a generation.  I think there are still a ton of things you can do with your life.  Should I waste time wishing you were a giant or just appreciate you for the smart, athletic and empathetic kid that you are?”

O: “I guess that makes sense.  It’s your whole thankful for what we have bit again isn’t it?”

Me: “Yup.  Our family all came together bonded by our ability to live with medical conditions.  I can not wish too hard for us never to have had our conditions.  Without them, we might never have met, much less become a family.”

 

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change, children with heart disease, children's loss, chronically ill children, emotion, kid's medication, letter to my daughter, MS symptoms

"It’s Just Not Fair!"

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To my daughter,

I’m sure every parent feels like they hear “It’s just not fair!” from their kids a thousand times a year.  The hard part is when I find myself agreeing.

“Honey, you have no idea how much I agree.  No seven year old should have to take as many meds as you do first thing in the morning or in the evening before bed.  Then again, no young kid should ever have to live through all you’ve made it through or fear you will go through.  Try to remember you are the miracle.  What life gives is some times unfair, but what you do from that point on, is on you.  Take the meds.  I know it’s unfair, but do you want to be miserable?”

Saying all of this leaves unsaid your need to go through it all while in the process of  losing so much of the life you have known from visits with Blue a child you heard reunited with a biological family he feared… to your therapists with whom you took 4 months to open up… to your best friends (leaving for 2 years in a month)…With all of this on your shoulders, you begin a new school year.  Yes, life is unfair some times.

Maybe it’s because I had these thoughts, but for the life of me I just couldn’t get you to take your meds this morning.  Forty five minutes of silence (ah golden…if only the others complied too), stubborn refusal, deal making and finally deal breaking.

I get it, Dear.
Believe me!
I get it.

As much as anyone in the house, I get it.  Sadly the cocktail of meds is the best we have for your heart, emotional, and colon issues.  For what it is worth, I take my own cocktail of meds.  Your most common complaint is “You just don’t understand me!”  When you says this this, I almost always find myself wondering if you will mean it more or less as a teen.

Then I think how little I want my family to understand my symptoms and how different we are in this.  You long for understanding and seem to despair when nobody does.  I fear my family will understand because I don’t think they can without going through my ringer of symptoms in the worst moments on bad days.  I could never wish understanding on my family or any whom I love.

I do understand the original sentiment though.

It’s just not fair…and through it all, I am amazed at your will to give.  When you are down on days you have to take meds you just do not want, your biggest fit was reserved for not being able to give a gift to your friend leaving at the end of the month. When your biggest tantrum was a mere 20 minutes over having to wait a day to give her a gift you knew she would like, a gift to remember you for the next two years until back in America…that’s when I realized.

I have so much to learn from my kids.  Sometimes, there are things worth a good fuss.  Waiting till tomorrow seems an eternity to make happy someone about whom we care. After all, who knows what tomorrow may bring.

Love,
Dad

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