5 things I want kids (and parents) to know about living with a disability

Kelsey Kleimola, Ms. Wheelchair Michigan, and her family.From the minute a child is born, that child’s parents develop dreams for their child. While rocking them to sleep at night, and looking into that perfect little face, a parent dreams of who that child will become, and what he or she might accomplish. An author, a photographer, a doctor.

I’m sure my parents dreamed of these same things, even after I was diagnosed with cerebral palsy. Since then, I’ve come a long way. I’ve accomplished so many amazing things, despite my disability. I’ve overcome numerous hurdles, and faced countless challenges. And through it all, I’ve learned some things during this journey.

  • It’s OK to ask questions. It happens more often than you’d think. I’m in a public place, a restaurant or store. A child is with his or her parent, and the inevitable question is asked. “Why is that lady in a wheelchair?” And, more often than not, the parent steers the child away from me, quietly whispering that asking that question isn’t polite, and didn’t I teach you better than that? Personally, I’d rather that child have asked me. How else do we learn? How else do we push past our own assumptions and choose to grow? We seek knowledge. So, ask the question. Learn.

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Nothing can hold us back: Our family’s tube feeding journey

Ava Jones When Ava was born in February of 2011, all was well in our home as we were figuring out how to juggle a newborn and her two siblings, who at the time were 3 and 2. We noticed that Ava was not gaining enough weight, but we were not sure why. One day in May she developed a high fever and we brought her to the emergency room where we were quickly admitted. During that long inpatient stay, doctors discovered what was causing the fever and the answer to why Ava was not gaining weight — she had difficulties swallowing and was aspirating liquids into her lungs.

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Coping with pain and discomfort

Tips and advice for kids, from kids

In this week’s new Kids4Kids video, patients from C.S. Mott Children’s Hospital talk about tips for dealing with pain and discomfort from chronic illness and medical procedures.

Tell us:

What tips do you have for coping with pain and discomfort?  Use the “reply” tool at the bottom of this post to share your advice with others!

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The role of friends and family during your treatment

You’ve probably heard the lyrics, “I get by with a little help from my friends.”

In this week’s new Kids4Kids video, patients from C.S. Mott Children’s Hospital talk about the important role their friends and families play in supporting them during treatment or living with chronic illness.

Tell us:

What tips do you have for letting friends and family help you through illness?  Use the “reply” tool at the bottom of this post to share your advice with others!

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Keeping up with medications

Advice for kids, from kids

Living with a chronic illness often means taking medication…sometimes, a lot of medication.

In this week’s new Kids4Kids video, patients from C.S. Mott Children’s Hospital talk about their experiences keeping up with complicated medicine regimens, and some of the tips they’ve used to stay on top of taking meds.

Tell us:

What tips do you have for kids and teens on keeping up with medications and treatment regimens?  Use the “reply” tool at the bottom of this post to share your advice with others!

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Adjusting to the reality of your diagnosis

Coming to terms with the realities of chronic illness or a new medical diagnosis can be difficult.

In this week’s new Kids4Kids video, patients from C.S. Mott Children’s Hospital talk about what worked for them to “keep it real” while adjusting to their diagnosis and treatment.

Tell us:

What tips do you have for kids and teens on how to adjust to a new diagnosis or changes in your treatment plan?  Use the “reply” tool at the bottom of this post to share your advice with others!

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