guru

Last night upon being woken by our almost 6 year old, insisting he "lost" his lovie and searching tirelessly all over for it, finally succumb to, "I lied, I hid it to sneak into your bed!"  WOW this one, I tell you he's clever and sneaky, watch out for him....but I lie there, heart pounding mad at his manipulation and interrupting my sleep and leaving me lay there like a preggo insomniac, ideas swirling in my head.  Thinking about...this (amazing video that if you have time please watch.)

World Down Syndrome Day, 3-21.  Every year it's celebrated, talked about, awareness is hopefully raised and at least one person views someone a little differently then perhaps before and isn't that what we want?  Yes.  Lately it's been rough, not gonna lie.  There has a been a lawsuit, that if you aren't in our special world, perhaps you weren't aware of.  It's painful to even send a link to it, but essential just the same, you can read about it here.  The gist of it is this.  The couple with two older children did CVS early testing and it concluded their baby was "typical" and so they proceeded to give birth to a little girl that has down syndrome, they are now stating that, because of this error in testing, they are suing for millions of dollars and guess what? They won.  She is 4 years old now.  They testified in a court of law that had they known she would have down syndrome they would have killed her.  I know that's harsh, I should implant a nice little pc word like what? Terminate? End? Abort? Listen, they would have killed her.  Yikes.  They just "won" 2.9 million dollars for that error.  For a life they have to "endure" with THEIR CHILD that wasn't what they wanted.  Wow.  People.  They just stun me.  The ignorance and naivety.  The craziness, I literally can barely digest.  These "tests" we as humans determine whether life is worth it and to the point that we GIVE PEOPLE money if we mess them up, that is just amazing to me.  I am scared for the future of our culture, this throw away world of anything less than perfect.  I am scared for that little girl, who will likely comprehend what her parents said and did years from now, for her siblings and how that feels to them.  They insist it is for medical care and housing for the rest of her life that they are not prepared to carry the cost of, why did you have a CHILD?  Do you understand they cost money? Do you understand if they get cancer, you can't simply state sorry, you aren't worth it anymore and stop treating them?  You are a parent, the moment that baby is conceived, a life is created and your obligation no longer falls to yourself....ugh, it's tough for me, because I don't stand on a biblical platform, don't shout it's against God, I just simply say, it's your baby...enough said.

Getting back to 3-21, I was thinking about all the gifts that lie in struggle, in hardship, in growing.  It's hard to navigate them sometimes, you look away, live in denial, continue to make the same mistakes because really it's hard to see truth and not so pretty sometimes.  But, our children they are teachers, they are students, and in the end we have so much to be gained by them.  And I feel like Nolan is my guru.  My ultimate teacher of all things beautiful.  There are things that may look difficult and truly are about having a child with special needs, a challenge I didn't voluntarily raise my hand to participate in, a journey I didn't want my life to go down.  But, that's the thing about a guru, you don't know, what you don't know.  I have written numerous times about the influence that Nolan has had on our growth as a family and personally.  The little things he teaches me almost daily.  But, something I haven't written about is what a true miracle he is.  The odds I had at 33 of conceiving a child with down syndrome was .0025, according to our geneticist.  I remember in our first few months, we kept saying that, over and over, we were obsessed with how this happened at all to us, why us?  We couldn't seem to get past it's negative connotation, so focused on the heartache.  But, perspective is a beautiful thing.  When you really break down the odds of his survival, he is more amazing then most births.   Now we see him as a hero of sorts, I mean, first of all something like 85% of all genetic problems result in a miscarriage before 12 weeks, then with early testing about 90% of those that survive are aborted, still another 50% have major health complications upon birth and require major surgery.  That's all from a measly .0025% chance, so my Nolan, he is beating the odds every day.  Kicking and currently screaming :0 his way to survival.  You see, he knows more than me, than you, than most of us.  He is a true teacher.  His lesson plans are deep and subtle.  He squeezes your heart and won't let go.  The moment you stop and think that you can't go on, he pulls you back in and says you can.  And you do.  I only hope that I can give to him a little return on the love he has given to all of us, to make him proud as his mama.  It's the least I can do for my guru.