Findings and Failures

I’ve been immersed in information.

Sensory Processing Disorder, Obsessive Compulsive Disorder, recommended therapies, parenting styles for special needs children, how to handle highly sensitive kids, the best route to social integration.

I’m trying so hard to remain positive.  The truth of the matter is, Blythe is already improving, thanks to her wonderful, amazing, -insert a million positive adjectives here- therapist.  Last week she touched a feather boa!  Touched it!  Willingly!  I can’t tell you what a huge step that is for her.

I have so much hope for the future.

And yet, I’m also angry.  Resentful, even.

Blythe has a lump on her head.  A lump I noticed when she was about 3 months of age and pointed out to her pediatrician – the same doctor who blatantly ignored Blythe’s food allergies – the one assigned to us by the (expletive) HMO we had.  She told me it wasn’t a lump, it just felt like one because she had a flat spot in front of it.  She suggested we get a sleep positioner and encourage tummy time.

Ok.  Done.

She was wrong.  It’s a lump of Cerebrospinal Fluid, located between her skull and her scalp.  It’s the reason she won’t let us touch her head, why she cries when I attempt to brush her hair, why she screams when I reach for the shampoo bottle.  It’s the reason for a lot of things.

I’m angry because that (expletive) HMO, and that pediatrician failed my daughter.  Repeatedly FAILED. 

And she has SUFFERED because of those failures.  Her food allergies, her gastro-intestinal problems, the LUMP ON HER HEAD. 

FAIL, FAIL, FAIL. 

Until two weeks ago, Blythe had only slept through the night a handful of times.  Most nights, she’d wake up crying at least twice, but sometimes four or five times.  That’s over 2 years of horrible sleep, for both of us.

Since we’ve started the physical therapy for her lump and her upper GI tract (daily massage) she has only woken up crying once.  Two weeks worth of amazing, wonderful, sleep.  Oh, the joy.  But that’s sleep we could have been getting a long time ago if only the people we trusted to treat our daughter hadn’t failed her.  FAILED!

My child has suffered through what I can only assume are terrible headaches and belly pain, almost every night of her life. 

My baby.  Suffered.  Almost every night of her life. 

I would be lying if I didn’t admit that I feel as though I’ve failed her, too.  But I am not a medical professional, I am a mother just trying to help her daughter to be well.  Is that so much to ask?

With all this talk of health care reform, I don’t know what the future holds.  What I do know is, people deserve decent care from their doctors.  That (expletive) HMO we belonged to was great for routine care.  But for someone with special needs? 

Failure, ignorance, and a horrible attitude.

I begged them to help me find out what was wrong with my baby.  We saw every available doctor in the facility, trying to find someone who could tell us something.  They would look at her chart and confirm the previous doctor’s diagnosis, sometimes without even looking at Blythe.

They wouldn’t even look at her.

I don’t care how cheap it is, I will never entrust my family’s care to that kind of organization, ever again.  I will pay the $1000 per month health insurance, even if I have to sell everything I own, because my daughter deserves real help.

No one should be made to suffer because of lack of decent health care. 

Especially not my sweet little girl.