Wednesday, December 23, 2015

Leaving Behind Six

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Perhaps I made the mistake of discussing Noah's birthday plans with him the right before bedtime.  Even though Noah is non-verbal and I'm having a one-sided conversation I often underestimate how much of what I'm saying he's paying attention to at any given time.  Casually mentioning his Mickey Mouse cheesecake would be arriving, and how we'd be decorating and having Mickey Mouse paper plates and napkins, and how maybe we'd order in food just for his special day seemed to have cost me much needed sleeping hours.  Noah was up until 1am before deciding to close his eyes to get just a few winks of sleep.  He'd go in and out of being whining to get our attention so we'd rush in to turn him over or see what was wrong, to celebrating with happy squeals as soon as we entered his room.  I suppose he thought we should get his party started last night.  Of course Noah's need to be disruptive in the night also keeps his little brother up, who is annoyed that he shares a room next to noisy Noah and then Luke starts his own late night drama feeding off of Noah's.  

Next year I think I'll just surprise Noah instead.  And not talk about all the fun stuff to look forward to the next day.  I'm not even sure I want to tell him what day Christmas Eve is - Santa will be doing circles above our house half the night because Noah will be up.

My attention and focus has been all over the board this month.  Per typical December style for me, it hasn't been easy.  An appeals hearing for another Medicaid denial, there is always a court battle I march fearlessly into, meetings, hearings, research and time invested in trying to protect Noah from a cell phone tower that was voted in by City Council that will be detrimental to running interference with his medical devices and put him at life-threatening health risk with his sensory processing disorder.  There are of course I think a host of other problems and neighborhood concerns that haven't been adequately addressed or considered with neighborhood and homeowner impact.  Yet at the heart of it is Noah for me, and I'm feeling helpless and beside myself.   Then there is Christmas, the heavy weight of the holidays.  And trust me I've done my best to pour myself a cup of eggnog and sprinkle myself with holiday cheer, but something still feels like something is missing.  I'm just simply muddling through it.  I've even asked God to send me a little relief and a hand up.  Even though I know it's in his timing, not mine.

Situations around me feel beyond my control.  A feeling that is not at all helpful in the emotional baggage that I still carry with me seven years later.   Although I do give some thought to Luke's birth on his birthday its not to the extent that I do it with Noah, and with Noah there's such trauma there that it's like picking at an open wound and making it bleed.  Does healing come in he number of years?  No.  And I'd certainly have a bone to pick with the person who says time heals all wounds.  I rather share the same sediments as Rose Kennedy, "It has been said, 'time heals all wounds.' I do not agree.  The wounds remain.  In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.  But it is never gone."

Yet, the blessing shines bright which is Noah's life.  Seven years later for a child expected to die after being removed from life support, is bright, beautiful, healthy, thriving and most of all happy.  Seven beautiful, bittersweet, incredible years with this amazing human being.   He is a gift to all those who know about him, love and care about him.  He often feels like my guide to something much bigger than we realize here on earth.   Like he's the key to all of it. 

I decorated the kitchen with items my mom found at the dollar store for him, and I know he'll beam as soon as he wakes up... which could be hours from now since he partied into the night.  I sit here peacefully listening to the tick tock of a clock that hangs on our wall feeling like time is standing still but yet moving so fast at the same time.  I hope he has the best seventh birthday I can give him.


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