Wednesday, June 19, 2013


some of these things may come across different than how i mean, but i think it's important for people to hear this.

there are lots of things about Down syndrome that have changed over the last thirty plus years.  we no longer institutionalize people with Ds.  matter of fact, lots of them are being mainstreamed in school, and some even go on to college.  there are people with Ds getting married.  the beliefs about Ds are slowly shifting, and people are learning that it is not the horrible, life sentence that people once viewed it as.
when we set out to adopt a kiddo with Ds, i was prepared to push hard, and show the world that our child could fit in with everyone else.  we would push hard in and out of therapies.  we would have the same expectations for obedience that we do with big.  we would be a family that showed the world how great Ds is.
i have had to be kicked in the gut a few times to realize these were all my thoughts and dreams.  i have had to come to accept that shilo may live with us the rest of her (or our) life.  she may have significant delays physically and be on the more extreme end of cognitive delays. please note that nowhere in that paragraph do i say that these things are true of shilo, just that i had to accept that they were possibilities.
we have no idea what the future holds for our little (or our big for that matter).  but, i have come to realize something.  this story, it's not about me.  i can kick and scream, whine and fuss (and i have), that this was not what i envisioned when i tried to be obedient to God's call.  matter of fact, i think i believed i deserved a child with Down syndrome and no other complications, to some degree; like adopting a kiddo with Ds meant that i got one of the 'easy' cases.
but shilo isn't one of the 'easy' cases.  matter of fact, she is on the more extreme end medically at this point in her life.  but, with deepest honesty, i can't imagine a more perfect little for our family.  we are all head over heals in love with this little girl.  she has revealed to me ugly parts of my heart i didn't know existed.  she has shown me  that while her 'special needs' may be glaringly obvious to outsiders, mine are there too.  i just have the opportunity to hide mine.
 for a long time, i envisioned heaven as a place where there would be no more Down syndrome.  i have to apologize for that.  i hope in heaven there is no more 'normal.'  no more sorrow over things like extra chromosomes, and no more woe is me.  because the idea of spending eternity with my little, and her not having an extra chromosome, well, that looks more like hell to me.
don't get me wrong.  i'd take away the heart surgery, the hypothyroidism, and the other medical junk faster than you can imagine.  but the Down syndrome, and even the cognitive delays, i'll leave those intact.  certainly in the garden of eden, where everything was perfect, God envisioned a beautiful little girl with almond shaped eyes, and short chubby hands.  i can't for one second believe that when He made the perfect place for mankind, that He didn't already have a plan for a person with an extra 21st chromosome.  it was the fall that lead to the medical things that can come along with it.
and perhaps, when He created the same garden, He also saw a dark skinned girl with chocolate chips everywhere, and one loan freckle in her right armpit.  and it was good.  until that fruit was eaten.  and then it became the marker for scarier things that could come.  but, when all things are made right, i hope that my big still has her chocolate chips.  and her freckles.  she wouldn't be my big without them. 

when most of us say that we long for things to be made right one day, we envision heaven being filled with people like ourselves.   i have begun to pray that heaven will be full of the beautiful differences, that we have decided are mutations.  i pray for almond shaped eyes, and low set ears.  i pray for brushfield spots and lisch nodules.  perhaps when God says He will make all things new, He is talking about the minds of those of us who believe that we are what 'being made new' will look like.

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