Category Archives: Child care

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

Disability

Link 1 Comment
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.”

 

Share
a good life, acceptance, Child care

Growth Is Meant To Be Slow

We talk about O's difficulty following directions. When everyone else follows directions to stop pulling...
We talk about O’s difficulty following directions. When everyone else follows directions to stop pulling…

We spend so much time wishing for growth.  When we are young, our desire to grow leads us to say things like “I’m eight and a half.”  Somewhere along the way, we stop wishing to grow older and wish for other growth like in our bank accounts or biceps.  For those of us who have a chronic illness, we wish for growth in knowledge of how best to care for our illnesses.

Lord knows as parents we wish our kids would grow out of some things.  I keep hoping O will grow out of his instant rejection of any directions.  I will enjoy it when K grows out of the need for diapers.  I will love if A grows out of her anxiety, and if not the cause at least the behaviors of picking herself to the point of constantly needing band aids.

Still, maybe this is simply us as parents forgetting to just enjoy the process.  We should laugh when our eight-year-old can squeeze himself into the Halloween costume he wore as a three-year old.  We should probably marvel when K at almost four years old is in the 0.05th percentile for height, meaning in an average group of 10,000 children her age, four will be shorter than her.

It seems we grow them small in our house. This is O in the tigger costume he wore for Halloween when he was three. Both he and A wore this costume as babies. This year is K's turn.
It seems we grow them small in our house. This is O in the Tigger costume he wore for Halloween when he was three. Both he and A wore this costume as babies. This year is K’s turn.

We should probably even take the time to enjoy the innocence which leads K to want to share her most treasured possession with her mom (J).  Seeing her do this reminds me of a speaker I once heard telling parents to treasure everything their child gives them.  It may not be a new car, but the odds are it is everything they are capable of giving.  I think J realizing this is why she is smiling even as a gross wet pacifier is put in her mouth.  I need to remember to enjoy the journey, even if parts of it seem to drag.  For even if the hard parts outnumber the great moments, they do nothing to diminish the best parts of living.

K shared the item which meant most to her with a playful J.
K shared the item which meant most to her with a playful J.
Share