Saturday, November 30, 2019

Dear Special Needs Parent, I Sit Beside You At Christmastime -

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I hear your stories.  You see they often echo some versions of mine.  I sit beside you in the pain, the loss, the grief, the sadness and that longing that things were different.

It's a side of the holiday season no one discusses.  In a time where we are supposed to feel magic, joy and happiness we're feeling regret, blame, misplacement, worry and fear and broken-heartedness.
I sit beside you as you tell your story about how you tried to pick out the perfect Christmas tree and how forlorn and beside yourself you were because your child had no interest in it.  How you sat with your tears crawling from the sides of your eyes trying to disguise how you wish he was not non-verbal and unable to help decorate the family tree.  How you had to watch your typical child place the star on top of the tree, knowing your other child will never be capable of that.

I sit beside you as you mourn the loss of your child that passed away four months ago.  I see you post daily in support groups about your continuous heartbreak and profound grief.  I sit beside you in the moment of the piercing sound of Christmas music in stores, as you glance at a bedroom that you can't bring yourself to change or touch, to not want to decorate or bake cookies because it feels like a betrayal to the child you so desperately miss.

I sit beside you when you're at a toy store feeling so lost because you know that nothing in that store is appropriate for a child that cannot sit, walk, talk, crawl or self-feed, and you feel like all eyes are on you with a child in a wheelchair knowing that people feel sorry for you and are secretly relieved they aren't you.  I sit beside you as you quietly shrink inside and hold back the tears that inevitably fall upon your steering wheel when you get to your car.

I sit beside you in the awkward silence that your extended family displays, as a family in-law criticizes you for the lack of progress and recovery your child has made this year.  You cringe and bite your tongue and hold fighting back because you're so wounded that family could be so cruel and imply you aren't doing enough - not trying hard enough to find recovery for your child.  Feelings of blame and fault fester as you pour egg nog into glasses with a smile trying to pretend you're okay.

I sit with you as you ache for your child to have the physical abilities to open and unwrap Christmas presents under the tree.  How you patiently hold her in your lap assisting her gently and making sure that she knows it's okay that she can't do these things because you still love her with all your heart and then some.  You feel so protective and proud that she's still here with you that her not being able to open a present feels obsolete in the bigger picture of the blessing.

I sit with you as you pour your heart out and vent your financial frustrations that you can't keep up with the demands of out of pocket therapy, medical, equipment costs stacked up against needing to provide Christmas gifts and food for your family.  I sit with you, as you swallow your pride super hard as you seek out assistance from food banks and non-profit organizations assisting families like yours at the holiday season.

I sit with you as you crumble inside because you over hear another mom bragging about how she made brownies for her child's school Christmas party, while you are getting your double shot latte.  You feel inadequate and helpless and are doing all you can to stay on your feet after an all-nighter with your child who has special needs and you think to yourself will any of this get any better?  I sit with you as you camouflage how tired you are, and how you don't want anyone to see you are less than brave, less than courageous facade.  I sit with you, as you just want someone to hold you in that uncertain and scary place of never knowing if you will have a tomorrow with your child.

I sit with you as the timing of another diagnosis hits you in the middle of Christmas decorating and feels like a natural disaster has taken hold of your soul.  I sit with you as you throw an entire box of glass ornaments against the wall and into the fireplace with hysterical screams of pain only angels can hear.  I sit with you knowing that things may never be okay or normal again.

I sit with you as you hold that tiny hand of a precious child you brought into this world as they lay helplessly in a hospital bed recovering from another necessary life-saving surgery.  I sit with you as you beg for prayers in all directions and ask God to spare taking your heart and will to live away.  You're stoic in the moment, and unwavering with hope and faith, but deep down your only Christmas wish is just to be home safe and sound to be able to celebrate one more Christmas together.

I sit beside you as you have to decline holiday party invitations knowing that your child's sensory processing disorder could never handle it and that you don't have any respite for a date night with your spouse.  I sit beside you as you feel lonely, isolated and feel like life is standing still for you and revolving for everyone else around you.

I sit beside you because no one else will.  I sit with you in the silence and everything in between.  I sit with you on the stormy nights of uncertainty.  I sit with you because we're all in this together in a place we never thought we'd be.  I sit with you because Christmastime is hard.  I sit with you because it's okay to say that out-loud.  I sit with you in comfort, love and light.


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