Advocacy, Bowen, Brady, Tess

Pediatricians, Planes and Prognoses.

There are so many things swirling in my brain lately.  I think that happens occasionally when your mom of nine (she says as she chuckles).  These swirling thoughts are largely medically related though.  And, not all of them to do with our ‘special needs’ children.  

Middle-Middle in Disney World with his hat courtesy of The Sassy Stitch.

Middle-Middle (M-M) has been having some tummy troubles for over a year.  It got particularly bad over the last few months.  We tried diet changes, we tried eliminating certain foods, we tried adding probiotics.  Finally, we drove to the big children’s hospital to see the expert.  After some poking and prodding M-M has been diagnosed with Eosinophilic Gastrointestinal Disease (EGID).  He will start steroid therapy for this in the next week or so.  This isn’t something that can be cured.  Tummy troubles will likely always be a part of his life.  

This is one of my “non-special needs” children.  Now there are decisions to be made about his therapy, blood draws and medications to administer.  Life can change so quickly.  His prognosis scares me a little.  

Meanwhile, my “special needs” child with Dwarfism has yet to get the sniffles.  He is amazing.  Mighty has been here three months now and I keep waiting for “the other shoe to drop.”  I keep waiting for him to explode into a ball of grief and then fall apart.  I don’t think it’s going to happen.  I think he’s going to continue to just take change in stride.  His english is progressing beautifully with the addition of new sentences like “I play video games now?”  

The time has come to take Dolly to Boston too.  We’ll be there May 19 and 20th getting the final imaging she needs to decide if she is eligible for a bi-ventricular repair or if she will be staying home and having a Fontan.  Both are considered “palliative” rather than “curative” for her.  At some point, her native heart will fail.  Her prognosis scares me a lot.  

We continue to move forward though, one foot in front of another until we get where we need to be.  If that’s Boston, or the major city only 90 miles away, I have to be okay with that.  They need me to be okay with that.  

No matter what, I wouldn’t change a minute of it.  I wouldn’t do anything differently.  We adopted a little boy who we thought was completely healthy.  Life had other plans.  We adopted a little girl we were told by her country of birth was terminal.  Life had other plans there too.  

I read an article yesterday, actually, I read it out loud to FullPlateDad because it touched me that deeply, about the importance of special needs adoption, specifically special needs adoption from China.  You can read it here.  You can plan to adopt a child from “here” with no special needs and life can have other plans.  You can step out in complete faith, into the scary unknown, and adopt a child from “there” and life may bless you more than you could possibly imagine.  

Either way, please consider all the ways you could be making a difference.  

who knows that from ‘here’ or ‘there’ doesn’t make a dang bit of difference.  A child is a child.  

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