Sunday, October 25, 2015

It Only Gets Harder

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It was the eve of Noah's father's 40th birthday.  Fall heavily upon us, leaves dropping faster than I could count them as they drifted peacefully towards the grass.   Chris and I were outside for a moment evaluating the weather changes as rain was in the forecast.  His eyes heavy with a touch of sadness could have spoken what I already was feeling too.  The understanding that we're both getting older - quickly.  And none of this is getting any easier.  In fact, it's only getting harder.  We don't often have conversations about it.  But it's always there never far from the surface of our daily thoughts. 

A growing child that requires a lot of care.  More care than he ever even needed as a baby.  We can no longer make due with baby strollers and toddler bath tubs.  Now all of Noah's equipment is specialized, most customized and costing thousands upon thousands of dollars.  Sometimes if we're lucky Medicaid will fund some of it, but more times that not, denials hit us left and right.  There are no more lines of credit, nothing to stand between us and the deep blue sea.  No financial line of defense. And no way to really financially keep up with Noah's needs. He has specialized diets and purees, medical supplies that Medicaid doesn't cover; saline swabs, toothettes, special soaps and creams for his skin... the list is endless. Then there are the big things Noah needs, a stand to roll his adaptive chair from room to room, an estimated cost of nearly $980, A bath chair that exists in the UK that would cost about $4,000 for me to get here for him, then there are the things that would allow Noah to participate in family activities; a specialized custom Axiom Improv Seat with Abductor so that we can walk and run with Noah, a sensory play area so that he has something to do on the floor other than shred large coloring books that I get him from the dollar store, his out of pocket therapy costs, some therapies being abandoned altogether because there is no money... and the list goes on and on.

The worries mount as the years go by.  We can't plan for a secure future, not for Noah - not for any of us.  There is no life insurance policies, no thriving retirement accounts, no burial plots, no savings accounts.  Nothing.  We have nothing and will always have nothing.  Which is hard for me to accept as once upon a time I built a nest that was filled with lots of security, I thought that I was prepared for rainy days and hard times should I ever encounter them - but there is nothing quite like the perpetual storm that hits you on the special needs journey. 

Chris positioned himself on the outdoor bench that sits on our patio.  A place that he sits often with Noah nuzzled and cradled into his side for support.  A man that wants nothing more than to do the best he can for his family, his blue eyes with a hint of gray in the light of a cloud covered sky looked worried.  I lacked the proper words to ease his pain and concerns, the fear for Noah's future.  I feel it all too. 

We both sometimes catch ourselves dreaming beyond where we are.  But know there is no way to ever get there.  It's a bit like being continual state of being stranded.  And it weighs heavy on any parent when you fall short from meeting your child's needs.  And we're of course also trying our very best not to short change our typical child along the way even though he has an older brother who's monthly expenses are the equivalent to a second mortgage.

Feeling the seasons change also reminds us that the holidays are fast approaching, Thanksgiving and then the ultimate gift giving holiday... Christmas.  The holiday that always hits me emotionally the worst since Noah's birth.  Yet, you probably wouldn't know it, as I camouflage it well.  I've become a master at smiling on the outside when I can be crumbling in the inside and continuing to sing those holiday tunes.  I can walk around like that without anyone even noticing.  It must have been on Chris' mind too as he lowered his head to look towards the ground and said "let's skip giving each other gifts this year so we can just focus on the kids."   He also knows how important it is for me to give five surprise gifts to other special needs children each year and that I don't want to have to give that up. 

And it's all very true, those who generally have the least give the most.  I gently nodded in response to his suggestion  in agreement.  There is nothing more that either of us really want other than to provide for our boys - and all the things that are always out of reach for Noah. We know it's only getting harder, but we're trying as hard as we can to grow stronger.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.