Friday, November 22, 2019

Looking Back

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Maybe it's part of the human condition that purposely tries to block out all the bad.  If we dwell too long in the hardship then we lack the ability to properly move forward.  But occasionally, as life often does - it will remind you time to time of the past.  Sometimes you have a profound appreciation for how far you've come, the obstacles you've conquered, pride in perseverance - and other times sadness that you ever had to be in that position in the first place.

I've been on this special needs parenting journey now for more than a decade.  The past and present both bumpy.  In the early days I didn't really have any clue what I was doing.  I was lost.  Completely lost without a roadmap on how to navigate anything.  Therapies, appointments, bad news, how to process even a multitude of emotions that hit you simultaneously - the financial strain, the sleepless nights, the endless worry - and the profound adaptation and acceptance that your life will never have any sense of the normalcy it once did.

I got an email today inviting Noah to receive a letter from Santa through a non-profit organization we used when Noah was days old called There With Care.  They are an organization that coordinates various types of help.  Noah was sent home on hospice of sorts - the Butterfly Program.  A team of people assigned to you that you call to assist you with arrangements when your child passes away, and alongside that came a There with Care referral.  I couldn't return to work, ultimately resulting in my resignation of my decade long legal career, I lost my transcript business because I couldn't keep up with the demands of running it while caring for a neurologically distraught baby who's disabilities became more apparent with each growing day, and voluntarily gave up assisting with a nursing call center in the middle of the night. I found myself instantly with large bills that Medicaid didn't back date for flight for life, all the while trying to figure out how to feverishly pay our mortgage and other bill obligations on one income.  I wasn't present in the moment.   My heart was blown apart, my world felt uncertain, and I kept focused on just simply doing everything within my means to keep this precious little boy here on earth with me. 

I had forgotten about There With Care - although they serviced us for the first year, they brought us groceries, they provided meals, they gave Noah baby gifts, and baby supplies that we needed. It's odd how we don't really forget, but that we put things out of our mind - to move forward with the next chapter or the next challenge. Had I of not received that email invite to have Noah receive a letter from them, I'm not sure that they would have crossed my mind.  Not even in the capacity to recommend that resource to another family.  Perhaps we block out such things for self-preservation or because we are simply so overwhelmed that we're trying to get from one point in our lives to the next.

I had filed it within myself long, long ago.  A place perhaps that was dark and irresolute. I'm not sure what I would have done without someone just navigating all of those types of things on our behalf in the early days.  It was like I was present - but not fully present at the same time.  Memories can be interesting like that on the special needs journey.  Where something can just instantly remind you of a moment in time.  And then again sometimes things come full circle, a humble reminder of all the hard places you've been and how blessed you're still standing after all of it.  Looking back is harder for me than looking forward.  And looking forward is still very scary too. 

Never did I ever imagine that the very organization that was our life-line in the beginning would wind up sending my sweet Noah a Christmas letter from Santa ten years later. Blessings never forgotten, and blessings still yet to be received.


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