Sunday, October 25, 2015

I Have a Special Needs Child

There are times I feel like I am failing as a mother. Sometimes think I am an awesome mom. At times I feel overwhelmed with four kids. Other times I bask in the beautiful chaos. 

Sometimes I don't care my son has a developmental disability....

Sometimes I say "he is who he is". I cheer every small triumph. I remember that the baby they prepared me to never walk or talk, walks and talks. I don't care that not everyone understands him or that his movements are stiff. I am blinded by his big smile, gorgeous eyes, that big kind heart and he can do no wrong (well almost). 

Sometimes I care a lot. I cry because he isn't able to do things the way my other kids do. That he has less options and has to work three times as hard as other kids. I get angry when the speech lady tells me "he physically is unable to make the k sound so we are moving on from it". I feel physical pain when my own family says he won't get married and have children, because he talks about when he has babies and he wants to marry the beautiful little girl in his class. 

Sometimes I am overflowing with gratitude for the village I have helping me raise my kids. The grandparents, aunts, uncles and close friends who always have my back and never let us fail. 
Sometimes I am jealous of other moms...

Moms who don't have to deal with what we have, I don't even mean moms of "typically" developing kids. I am jealous of other moms of kids with special needs. (Not sure jealous is the right word but I will leave it there until I find the right word to express my feeling, if there is one) The moms of kids with a true diagnosis. Who know why their child is different and have support groups and communities to back them up. They have other moms who have been there.
My son doesn't have a true diagnosis. The geneticists, neurologists, pediatricians, the physical, occupational and speech therapists, the mounds of other medical staff we have met with all agree he has a genetic disorder. He has very specific structural abnormalities. He is consistently two and half years behind intellectually and emotionally. There is something definitely "wrong". Yet they found no mental retardation on their scans and every single type of test some of the best geneticist in our state threw at him all came back negative. Finally they sat me down and said he has something that probably only one a million people have, that there is "nothing left to test for". Nothing left. No answers. Nothing to research. Nothing to prepare us for what to expect as he grows and changes. Just nothing. 

He is who he is. One in a million. That's ok...sometimes. 


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