Magazine article The Exceptional Parent

Just like You

Magazine article The Exceptional Parent

Just like You

Article excerpt

A mother and son offer support

My son Ryan has incontinence caused by a neurogenic bladder, a rare type of nerve damage of the bladder and bowel from spina bifida occulta. He also had an obstructed urinary sphincter muscle, along with kidney damage caused by a congenital obstruction of the left kidney. My son has been through two major kidney surgeries and countless minor surgeries and procedures of both the bladder and kidney, and he must endure constant invasive medical care.

You see, my son's medical problems are rare and there are no support groups of any type. We have struggled in complete isolation, trying our best to cope with the devastation of his medical problems. The emotional and social impact of my son's medical problems are so very difficult and painful, and it is heart-breaking to see him struggle every day with this! I could not just sit back and watch him suffer and do nothing, but we had very limited resources and no support. I watched in horror as my happy, funny, and full-of-life little boy became quiet, sad, and withdrawn. Ryan came home from school every day in tears because he was teased for wearing diapers or having wet pants, and it was tearing both of us apart!

I started to do research to find support groups, protection products, even another person with similar problems. I found nothing! I knew that I was on my own in dealing with this and helping my son deal with it. It was the most difficult and painful thing I have ever faced.

Putting it down on paper

I kept a journal from the beginning of my son's medical problems. Writing was my only outlet, and it helped me immensely. I thought that it could be a good way for Ryan to get his feelings out, too. It took two years, but we turned my journal and Ryan's own account of what he has been through and how he feels about it all into a children's book. After some pressure from friends and family to do "something" with it, we donated the first and, at the time, only copy of our book entitled "Just Like You!" to Sacred Heart Children's Hospital in Pensacola, Florida, where Ryan had his kidney surgeries. It was the best thing we could have ever done! We left the hospital that day changed, like a weight had been lifted from us. No longer did we feel like such victims of his medical problems, and the feeling of our story being able to help another child made us both feel that all our pain and suffering was not in vain. It was our first real step toward healing.

Our local media picked up on what we had done and we made the local news. My son was "famous" at school for a few days, but more than that, he was no longer teased. The other kids thought that what he had done was very brave and special! I saw him change--he was back to his old self: happy, funny, and enjoying life again. He had found the strength and courage to stand up and fight to be treated like every other kid! This has helped him more than I had ever hoped or dreamed. Because of our local media attention, over 50 copies of our self-published book are now in children's hospitals across the US. Though writing our story helped my son, we also found that the best thing in life that you can ever do is reach out to others and offer help, support, and compassion.

The strength and courage that I have learned from my son, has enabled me to become very involved in creating emotional support systems for families that have children who deal with the emotional effects of any medical problem, and I have started a local support group. …

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