Blog posts by mommy Shana and mommy Jess

Three children, two moms, one C.P. diagnosis....and a partridge in a pear tree.

Sunday, October 2, 2011

A Guide for Parents by mommy Shana

Last week I went to see my Gastroenterologist. Though I would love to go into great detail about my colon and experience living with ulcerative colitis I will spare our reader’s that particular info.
However, I couldn’t help but notice a wall of brochures next to me while I waited to meet the Doctor. One of them was entitled “A Guide for Parents” and was published by the Crohn’s & Colitis Foundation of America. I quickly grabbed this brochure and was perplexed. I was of course glad that parents would be given information specifically for them because as a person with ulcerative colitis I know that those who don’t have it know very little about it, but at the same time I thought about how I didn’t get a brochure for Greta and wondered, is there one?
When we found out Greta had a stroke, we didn’t get a brochure; we didn’t even really get a diagnosis. The only thing we were told was that her seizures, which brought her to the hospital, were benign myoclonic infant epilepsy which meant that her seizures were a result of her brain misfiring over the damage that had occurred in her brain and not generating new damage. We were given a crappy print out (I’m talking circa 1990 medical journal photocopy) of what benign myoclonic infant epilepsy was and was told she had a stroke, wouldn’t have another one, and we should be on our way. That was it. I’m serious. No one told us why she had a stroke only that it occurred sometime shortly before, during, or after birth. No one told us what to expect. We left without any answers and with more questions than when we had arrived.

What is it like to find out your child has permanent brain damage in the same way someone might tell you your child has brown hair or green eyes? It is odd, weird, confusing, scary, and incredibly frustrating. My daughter has permanent brain damage and yet the medical community acted as though it didn’t matter. Maybe there is a good reason why everyone remained silent about Greta having Cerebral Palsy but whatever the reason, it’s not good enough. The information we were given changed our entire family’s life, and yet no one wanted to talk about it. Isn’t early intervention key here? Not being doctors ourselves we had to rely on our own research and we feared that Greta would need a lot of care, and we were right.

What does it mean when your child has a stroke? I can tell you it takes a team of doctors to treat your child. Neurologists, orthopedists, physical therapists, occupational therapists, ophthalmologists, ENTs, the list continues. Greta has damage to her brain, which means a great deal. Her brain works so hard just to control her movements that stimuli around her can sometimes be too much. You will often see us join a fun group of kids, or try to enjoy an outing in public, only to leave 30 minutes later with a screaming toddler in tow. If there is too much info for her brain to process, she becomes overwhelmed and frustrated quickly. While she wants to keep up with children her age, doesn’t have the ability. We learned quickly after a failed attempt at part-time daycare, that Greta couldn’t do it. She came home tired, crying, and sore, and also seemed to be in pain. It is important to socialize, but Greta can’t socialize like other children. However, she is extremely social when you meet her! If you are in a quiet environment, or you come over to our house, I guarantee she will charm you. She hugs you and loves you. On her turf, you can see that Greta is a warm, loving child who just happens to appear to be suffering an exorcism in public.

So back to the brochure. Wow, what would I include? Maybe an introduction to the diagnosis;, the impact of the diagnosis; what causes it; what medications/therapies are used to treat it; side effects of the treatments; emotional impact; how a parent can help their child cope; how to tell family friends, teachers, etc. At least the parent would walk out of the room with that instead of nothing. A brochure would have been the smallest gesture of kindness and concern in a very difficult time. I did end up finding a brochure but it wasn’t from any physician or hospital, but an online listserv. Where I learned about future problems like riding a bike, learning disorders, and other problems that I hadn’t considered, and now feel more prepared to deal with should I have to. I also learned how to help Greta learn things and modify things so she could participate.

So what would have changed with a simple brochure? Certainly it wouldn’t have fixed the damage to Greta’s brain that I am reminded every day is permanent, but maybe it would have left me feeling less alone. We walked out of the hospital in the same emotional state we walked into it, and no one at all seemed to care. It wouldn’t be the last time, but it was the first, when we realized just how alone we were in this new world of disability.

And we didn’t even get a brochure.

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