Debbie's Lesson to Parents

Does your child have a disability? My daughter does, and here's what I've learned, and here's what she's taught me. I learned that I didn't lose a person in my life, only the idea of who that person would be. This understanding made it easier to accept my little girl in the limited body that she was born with.  I know that some moms don't get to breastfeed, and that some parents don't get to watch their babies crawl or stand or walk. I know how hard that is. 

My Maura was a preemie and I was scared because she was so tiny.  There were a lot of things that as her parents we had to get beyond. I think that's always the case when you end up with a 'different' child. For instance, it wasn't always easy to pay attention to the gifts she brought to us. Differences can be painfully apparent, and the parental guilt sometimes all consuming.  Both of these are tremendous barriers to be crossed to reach a state of peace and acceptance. 

I learned not to let health professionals give us all the negatives.  Never accept words and actions that communicate the word 'never'. If they say "never",  I say go somewhere else. 

As daunting as it might appear, I learned that the Internet is a friend.  Though searching for information and support can be time consuming, the effort is worth it.   Learn how to evaluate the worth of the information you find on the web, traditional  and  nontraditional, so that you can go about deciding how valid the sources are that you discover. Find yourself a support group, too. I found that personal therapy proved to be invaluable. Grief therapy helped me, as did the support resources on the Internet. There are many electronic support groups out there, and they make a tremendous difference to so many parents in our situations. 

Maura deserves the  best future we can provide her. I'm sure you feel the same about your child. It helps to know that you've tried...even if something doesn't work that you attempt. You've tried because you care, and your children will know that. They know that you're doing the best you can.

It's easy to be overwhelmed when your child's needs seem so enormous. I learned through it all that it's NOT helpful to run yourself ragged. In order to be an effective parent, I found out that I needed to nurture myself. You just can't give when you don't have the resources inside that you need. 

Thanks for 'listening' to the wisdom I've acquired in this adventure of parenting a child with a disability.  I hope that you'll share what you've learned, too, so that parents will have the benefit of many "tips" for coping.

All the best...

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: March 27, 2009