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.