"If you hadn't told me,I wouldn't have thought anything was wrong."
I can't tell you how many times I've been told these things and had to explain Caitlyn's health problems.
It is the hardest thing to suffer or have a child suffer with an "invisible ailment."
You often don't receive the compassion that a parent with a sick child would get. There aren't visible cuts and scrapes to kiss and bandage.
There aren't tears that come with pain,there are tears that come with doing every day things the average person wouldn't think twice about.
There aren't just rough patches,cause you're in the hospital-there are daily struggles and when you've climbed one mountain and accomplished one thing,there's always the next 50 things waiting for you.
It is an invisible load that we carry on our shoulders and most special needs parent's- are so strong and don't ask for people to feel sorry for them. We just want people to understand,that just because our children are not terminal or "sick," We fight a constant battle as well.
This is not meant in anyway to diminish the struggles of parents who have children always in the hospital, I've been there too. I mean no disrespect whatsoever. Just showing how much more attention situations such as that typically get,while a parent of a child with Bipolar/Depression,Autism,Sensory Processing Disorder,ADHD and many other things often go through sacrificing every thing in their life for their child,quietly crying when the load gets too heavy,relying on just a couple hours of respite care to squeeze in a day's worth of a to do list,always in need of relief-but rarely is it provided.
Just a few of my daughter's Invisible Ailment's-
She had severe apnea and periodic breathing,so she required oxygen till she was 13 months.
She has hearing loss,but she's not deaf-she just always needs ear tubes in,to hear well.
She has chronic lung disease-RSV,Bronchitis,Pneumonia,Tonsillitis-We've been through it all.
She was born with a cleft palate and people would say,"Oh,Thank goodness it isn't a cleft lip;so people don't see it on the outside."
She has an unspecified eating disorder and people would always say,"Oh,her weight looks healthy." Yes,that's because up till 3 years old,she still drinks over 40 ounces of liquid through a bottle. She is given thickened liquids and many droppers of vitamins and supplements to keep her healthy. She has never in life,sustained her weight on solid food.
She has a sleep disorder. There is rarely a night that she doesn't get up and EVERY thing anyone could possibly suggest has been tried and there isn't a reason the Doctor's could give us,other than they suspect children with autism's bodies don't produce enough melatonin,therefore they don't require as much sleep as the average child or are restless sleepers.
She has a sensory processing disorder. She won't eat things of different textures or temperatures. She won't wear jeans,without a big fight. She hates even a drop of water on her clothes. She gets scared upside down. She thinks light touch is pain. She hears things much louder than you or I and gets easily overwhelmed by noises and voices.
She has Global Developmental Delay. This doesn't mean I don't work my butt off with her,it means DESPITE me dedicating my life to her,she still has some catching up to do;though I feel after a year that diagnosis can be removed-because she has come so far.
She has autism. Not high functioning, in fact when she was diagnosed she was functioning at not even ONE percent for her age range. Everything she does now is just a miracle and a result of very long days, very great therapists, and parent's who pour our lives into making hers better.
All these things,no one can see. No one would ever know. But my life got turned upside down by all these things. Caitlyn has to work twice as hard for every bit of progress she makes.
I lose a lot of sleep. I juggle a lot of things. I have cried many tears. I have a faith,you can't break-because sometimes it's all I have. I have a determination,only trumped by that of my daughter.
I have a compassion for these parents,who have one or any of these issues my daughter has,because I know a little of what their days look like. I have a passion for bringing awareness to all these invisible ailments,because they're very real and they have a very big impact on our lives.
