Sometimes I think it would be easier if she did though. I mean, the Down Syndrome community and Autism families all seem to have each other to lean on. Visually Impaired kids have camps to go to. There are tons of support groups for kids with Diabetes and even Epilepsy. There are walks and rallies raising money for a cure for specific syndromes.... but not one that encompasses all of our issues.
We weren't allowed to attend the Diabetes class because they thought we would confuse the other parents and educators. Kendall's an exception to every rule on the Ketogenic diet. When her Ketones are low, we give her apple juice. When they are high, we give her insulin! I can't read the posts from the cataract/aphakic list serves anymore because they bitch and moan about having to patch their kids eye for 4 hours a day. Cry me a river.
If we did a 5K for every diagnosis Kendall has, we'd be walking every weekend until Christmas! We don't really have a reason or a one word diagnosis. She has multiple issues, none of which are related, and she's one of a kind. I usually just say Cerebral Palsy, and I guess that just about covers everything....minus the Diabetes and cataracts.
I guess I don't really need a crowd for her, and I'm sure she couldn't care less. I'm secure in her being her and our family being who we are. But it sure would be nice when filling out insurance forms, Dr.'s office forms, or school forms to check one box instead of 15. Or to answer the nosy old lady at the grocery store with one phrase.
Oh well.
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8 comments:
I know what you mean about having to belonging to multiple groups but still at the same time you don't really fit in because of the other quirks.I haven't looked at the cataract group in a very long time because of his other eye issues we didn't really fit in there. I joined the Keto group but haven't visited there in months as he is mainly tube fed formula he will eat a few things but not enough to sustain him. I am a member of the CP group but now they say he doesn't have CP he has an undiagnosed movement disorder but the ortho says he is a spatsic triplegia with low tone in the trunk, neck and face. But you know something no matter how many names they come up with for his "quirks" to me he is still Finnian.
Now we can add the other lad into the mix not only does he have EE he is showing signs of something else cooking. Tonight when I checked is blood his sugars were only 50 they say he is not diabetic but I have to watch him they think he might have an absorption problem but until he shows more symptoms they don't know for sure.
Hang in there
Kendall has THE BEST smile! We don't fit in either Jocie...I hear ya loud and clear and I've finally learned to accept it :^)
I'll be in her "crowd"....with a smile like that, how could I not be?!?
Love you guys!!!
God, I hate to say this but I'm glad we have 1 problem to deal with. Seizures. They've caused developmental delays, but she's happy, can run and jump. Climb also which isn't so great with the delays! It's like having an 18 month old brain climbing as high as possible, with seizures!
There's no group that has all her problems but there's definately parents who's kids don't fit any mold also. There's a boy at therapy who has Arthrogryposis multiplex congenita and severe scoliosis. The AMC isn't typical, it affects every joint below the neck, but he also has little to no muscle. So his mom is having to fight to get him into a category so he can get help. Which sucks!
Hoping you feel the support of other parents here. While you might not find a 'group' with whom you share the same issues, there are organizations who support all children with medical problems ~ Shriner's, Scottish Rite, Easter Seals...
Barbara
I know what you are talking about. I say that Anna had encephalitis, which could be the truth, or was she born with her issues. So frustrating. My poor parents think that she is going to grow out it. I don't have the heart to say that I don't think she will. Love the picture of Kendall. She is so sweet!
Jocalyn, AMEN sister! I have been lamenting this for years! I feel the same way! What an angel though!
I love that picture!
Yep same thing here. You should see my Yahoo Group page....it's ridiculous! Having multiple complications only means more friends to relate too in certain but different ways.
Although it would be nice to go to a monthly meeting for Gastroschisis, Short Bowel Syndrome, CVI, PVL, CP, premature, FTT, Microcephaly kiddos :-)
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