You’re Not That Special

Well isn’t that just a cheerful little title?  If you’re not already offended, read on, you probably will be by the end!!

I think about this topic a lot because I hear this phrase A LOT:  “Wow, I could never do what you do (raising a child(ren) with special needs);  God really knew what He was doing when He chose you”.  If it’s not those exact words, it’s something VERY similar.  October is National Down Syndrome Awareness Month and what I want to highlight first and foremost is that just because you’re the parent of a child with Down syndrome (or any other diagnosis), or you know someone who is, that doesn’t make him/her special.  Well maybe you’re special, but I know for a FACT that I’m not.  Yes, I am on a different path than the majority of people on planet Earth.  The scenery from my vantage point is different from most families, the schedule of my child’s milestones is different so therefore everything we do is a little “off” from the normal schedule of things (sitting up, walking, riding a bike, talking, singing, playing a sport, etc….), but I’m not “special” or different than anybody else, with one MAJOR exception:  God did create each and everyone us very uniquely, each one with our own original design and when you say yes to doing things God’s way you instantly become very, very special and your life will never be the same.  If you haven’t said yes to God yet, I encourage you to do so you can feel His unbelievable love and affection for you.  But other than choosing God’s way, I bring absolutely NOTHING to party, believe me.  And I know what you’re thinking.  You’re thinking, “Well those people who say that don’t mean anything by it, they’re just trying to be nice”.  Well today I just want to cut to the core of that statement and what it really means.

The ONLY thing that makes a parent of a child with Down syndrome special is if they decide (and for me it was a conscious decision) to truly JOIN their child on THEIR special journey through life, because let’s look at this logically from a current world view:   no one in their ever-lovin’ mind would sign up for some of the stuff we as parents of kids with Down syndrome face every day, or throughout the course of a year.  IMPORTANT SIDE NOTE HERE:  Not all kids with Down syndrome have major health issues, in fact most of my friends from where we just moved from do NOT deal with ANY health issues at all, but some kids do experience moderate-severe health issues as a direct result of that extra chromosome on the 21st gene.  Okay, back to our regularly scheduled programming……………I remember specifically going through an adoption questionnaire from our local department of social services when we decided we were going to go through the public system in order to adopt (side note here: we had ALWAYS, ALWAYS wanted to build our family through adoption, it was NEVER a consolation prize if we “couldn’t have children of our own”—ugh, I HATE that phrase, as if the children you adopt somehow AREN’T your own….WHATEVER.  Forgive me,  I digress).  We specifically said no to things like seizures.  ”Seizures??  I read that and said, “YIKES, there’s NO way I would have a CLUE how to deal with a child if they had those”,  and so we checked off “not consider” in our choice of boxes which read “Not Consider”, “Might Consider”, “Would Be Open To”.  The other things we said a firm “NO” to were heart conditions and mental retardation.  Those were things I knew for a fact were just not qualified to deal with.  I remember thinking babies with those types of issues would be MUCH better off with a doctor or a child development expert.  Nothing in my political science background would equip me for THOSE sort of things.  I remember when I saw “deafness” on the questionnaire though, I thought, “Hmm, we could probably deal with that, I’ve always wanted to learn more sign language anyway, and I know it’s good for ALL babies and toddler to learn”.  and so we checked the “Would Be Open To” box, finished the rest of the questionnaire and sat back thinking, “Alrighty then, we’ve told them what we want, we just have to wait for our order to be filled”.  I somehow missed the chuckling sound from the heavens.

The other thing I hear A LOT in reference to not just being the parent of a child with Down syndrome, but in response to all sorts of challenges that we all face every day is, “God doesn’t give you more than you can handle.”  As if that explains why your child just died, your husband of 20 years just left you, or your best friend has been diagnosed with cancer.  As if I have some kind of “special” DNA that enables to help me deal with the fact that my 14 year old son has magnificent global delays (thanks to an infant seizure disorder traced to the pertussis vaccine), may very well NEVER have verbal communication (so much for starring on television like the rest of our superstar kids with DS, huh??), and as I write this, is facing his NINTH major ear surgery in a matter of days.  People, hear me when I tell you, I’m NOT THAT SPECIAL and either are you.  God REGULARLY GIVES US MORE THAN WE CAN HANDLE FOR THE SPECIFIC REASON THAT WE WILL TURN TO HIM FOR STRENGTH TO GET OUT OF BED.  Tragedies and horrific things happen ALL OVER planet earth every single flippin’ day.  These incidents are random and heartbreaking, but in NO WAY are we as humans supposed to believe this drivel that “God never gives you more than you can handle”.  Actually that statement is just offensive to me, almost like the person who says it to you is saying, “Well you’re all alone in this because YOU’RE so special and YOU can handle it.  I’m sure you’ll be just fine.”  Horse pucky.  When life hands us “stuff”, including having a child with special needs, no matter what it is or how “bad” it is, or how long the situation is going to last, it’s in that moment that we need to realize that we’re not that special and we have no special skills within ourselves to deal with it.  We just have a God (whether we recognize His presence or not) who wants desperately to take the burden of heart ache from us and BE our strength for whatever it is we’re trying to cope with.

So how do you decide to take the plunge with your child?  I mean isn’t enough that you HAVE a child with Down syndrome?  Doesn’t THAT make you special?  No, the truth is you’re going to miss A LOT of the amazing scenery on your path if you don’t really have a gut check and decide to accept that person NO MATTER WHAT life has for them.  A few years ago I heard a mom say of her son who has Down syndrome, who had just come through another illness but had been relatively healthy for the previous few months, “Ya, we’re glad Josh is finally better, now he can really be a part of the family.”  OUCH.  Knife stab to the heart.  That mom hadn’t yet accepted that her son’s path was going to be very different than what she had planned and she had plenty of anger and resentments built up already in his relatively short life.  There’s still time and I hope that mom turns it around and stops blaming her son (and God) for him having Down syndrome and a weakened immune system.  I know it puts a crimp in their busy gotta-be-on-the-run-all-the-time lifestyle.  If there’s any “specialness” to any of us, it’s because at some point we gave up our own agenda and we’ve decided to truly join our child on their path.  Is it easy?  Hmm, let me think about that for a minute…..NO!!  I just got done saying I said a firm “NO” to seizures, heart conditions, and mental retardation-not my cup-of-tea, thank you very much.  What I said yes to was the most precious baby boy ever born in the history of the universe (okay, second to Jesus….I do have SOME perspective after all).  I fell in love instantly, and while I knew we still had much healing and grief to work through (see the post, “The Day Hayden Was Born, I Mean Really Born”), I knew that that precious baby was going to have an adventure of a lifetime and I didn’t want to miss a minute of it.

So, maybe the specialness comes from being loved unconditionally every single day from a child who not only has an extra chromosome but seems to possess endless amounts of pure love, maybe it’s because his love has sanded off the rough edges of my heart, and maybe his love has been a beacon of light for me to find other like minded parents who have said “yes” to the special journey.  All I know is I hope to one day become the Velveteen Rabbit and to see you along the way.

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