Myasthenia Gravis - The Resource

 

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Jim Lubin's disability resourcesHealth Links Select Site

PARENTING WITH AN ILLNESS

This section is dedicated to Kathy :)

 

When you have children, you battle to be the best parent you can be in today's world. You want to give them things, teach them the right way to be, encourage.........Being a parent is an uphill struggle against finances and time. AND NOW YOU'VE BEEN DIAGNOSED WITH MYASTHENIA GRAVIS. As if trying to be a good parent didn't take enough out of you before, you now have to deal with the illness and the effects on your body. And you still have to be a parent. Get ready for the guilt.

It usually doesn't matter what age your child is, at some point role reversal happens. The child becomes the parent and the parent becomes the child. The lines get blurry...you rely on them in ways you never realized you could. They want to help and don't know how. You want them to be a part of things but want to protect them from seeing just how bad it is.

Even if your children are small, they need to know what is wrong with you. Some kids may even feel that they've caused it, somehow. Ridiculous, you think? Think again. They will feel grief because mommy or daddy just can't do some of the things they used to. They will get angry with your disease and maybe with you, too. They might get embarrassed as you bump into something, shake or twitch. The biggest key is communication. Talk to your child, let them go to the doctor with you, let them see you take your medications and if necessary, don't hesitate to consider professional counseling to assist them.

Hopefully, these links can shed some hope and information. Irregardless of the disease, parenting with a chronic illness is a subject that has been addressed. When reading many of these articles, substitute the words "myasthenia gravis" for the disease mentioned.

Parenting with MS is a good article but THE site is Parents with Disabilities Online.

  1. Parenting with a disability
  2. The Looking Glass
  3. Family Resource Center on Disabilities
  4. Short story from a boy with a disabled mom

I've also created a Yahoo group called Parenting with Disabilities so that people can share their experiences, learn from each other and create a forum of support.

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