Children's Hemiplegia and Stroke Association

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parents speak

When you dream of becoming a parent, you never think that "you " will become that of a disabled child. At first it is devastating, for you. You lay on a guilt trip, you cry your eyes out, you think what am I going to do. You will think the worst. And when all that is through you will look into those baby eyes and say this makes me love you no less, only more........... You will find strengths inside yourself that you never knew you had. Take one day at a time, and remember that this child is your miracle......... Best of luck and to a miraculous future, welcome to CHASA! -- Kristy

To the parent of an infant, newly diagnosed with hemiplegia... The first thing I would tell you is that your baby will surprise you with the things he will be able to do. I know dreadful it is when we find out that our kids may have impairments, and it must be even worse to know that someone has made a mistake, but this IS past, there is nothing we can do to chance the PAST, and there are lots of things we CAN do to change the FUTURE.

One thing you should keep in mind is that the brain has a strong capacity to reorganize its functions and recover itself. My doctors use to say that it is even easier for the brain to recover the closer to the birth the damage has been made. And there are many, many examples of people, children and grown-up people, who overgrew strokes and regained their movements.

One of the things that CAN help our kids make their ways is PT and OT and water-therapy, because they keep sending the right impulses to the brain and that helps the brain to learn how to function the best way. Sometimes it's tiring, sometimes it seems it's not working, or working too slow, but it DOES work.

I can imagine how overwhelming it may be, especially if you have other kids at home, but I just wanted to say that all the work and stress will pay back. -- Ana, mother of Sofia, 2y8m, right hemilegia (stroke in-utero), from Brazil

"I forget all the time that my child is disabled."

When I read this statement, I thought about how grateful I am to also be able to forget that Annie has a disability. I remember when she was an infant and first diagnosed and until she was maybe 2-2 1/2 yrs. old, the fact that she was disabled was in my mind much more. Before that, I didn't know what she would be able to do, if she would be able to do the things other kids could, like riding a trike, even walk.

My daughter has taught me that she can do pretty much anything she wants to do, sometimes it takes her longer to master the task, sometimes she does it in her own way, but she does do it. She amazes me sometimes. I am blessed with having her, she has taught me so many things. Sure, there are the times that "hurt my heart" when her arm and hand, in particular, won't do what she wants them to do. Those are also the times that we become even closer, because we sit down and figure out a way to be able to accomplish what she wants, we work together.

Yes, I am grateful to be past the uncertainty of where so many of you are, not knowing what the future will bring. Our children are amazing, strong little people. They are survivors, they survived what got them here in the first place. As long as we love them and encourage them to do the best of their ability, they will be okay. All children have their ups and down, their rough times, their limitations, our children are no different. -- Diane, blessed with being mom to Annie

Please take the time to explore this area of our website. We encourage you to get in contact with other families through our Email Support Group, Hemi-Kids, our local groups, or our annual retreat.

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The information contained in this Children's Hemiplegia and Stroke Association (CHASA) Web site is not a substitute for medical advice or treatment, and CHASA recommends consultation with your doctor or health care professional.