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approximately 3,000 parts we've gone through with an issue over the last month. #processorproblems #neveradullmomentwithsomanysmallparts
A blur.
Months.
I have not written in a few months.
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Snip 1 - Verbal Q
"Moo"
"Neigh"
"Help"
"Stop"
"Go"
"Please"
other little words and formed noises escape here and there.
Always prevalent - "Mom" "ma"
Snip 2 - Transitions!
Thanks to aforementioned words of "Stop" and "Go", and Quinn's ASL receptive skills - we now have wait, stay, here, please, now, soon, together, and later in our repertoire.
We've had a few successful outings that have continually surprised and pleased us. Compared to a year ago with our horrific (all of us sobbing) transitions, it feels like a light year away.
Snip 3 - Q's weekend of Birthday Fun!
Due to our journey with Q and his diagnoses, our long commutes, our differing work shifts, and the general chaos of raising a young human (while feeding, clothing, teaching, and keeping that young human from climbing up the OUTSIDE of your grand staircase until he is above your head mostly unscathed...) we have had no 'fun' time.
We barely had dinner together once a week as a family.
Everything we went to was medically or learning related for Q's needs.
Finally - a shift.
My husband was able to transition his work life to an unexpected and amazing eCompany.
The move in January allowed us to cut our commute into 1/5th of what we were driving daily.
Our services have been worked around the adults schedules, and it's allowed Jim and I 'moments' of family times cooking dinner (together), eating dinner (together), and enjoying time together.
We took a FUN weekend for Quinn.
All events and travels were planned with 'fun' and 'new' things in mind!
We took the Ferry to Plattsburgh (this alone, round trip, watching from the top deck made Q's day!).
We let him run around in the mall, as long as he stayed close to us. He 'ran' into a kids play place that contained the largest possible bounce lands in the smallest possible mall store.
With joyous abandon Q played for over an hour.
His transition from this place of joy and fun was a turning point for all three of us.
Knowing what else was in store for Q, Jim and I checked into a little Comfort Inn that has an incredible amount of amenities. One being a children's 'splash water' mini-park.
Q dunked, splashed, swam, and laughed his heart out whilst playing in the largest tub he's ever seen.
He fell asleep leaned back against me watching Despicable Me. First time Jim and I watched this movie, and I'm unashamed to announce we finished it as our Nugget snored peacefully.
We had a weekend of Birthday Fun.
Snip 4 - Holy Signs, Batman
At dinner. Sitting on the counter with pagan abandon.
Q begins the following 'story' in ASL.
Cow (verbal Moo)
Horse (verbal Neigh'ish? For this, Q imitates more of a giggle staccato' d as a horse might)
Pig
Raccoon
Dinosaur
Lion (verbal raaawwwrrrrrr)
Cat (verbal meow that's more eee-oowwww)
Tiger (verbal grunting & growling)
Bear (verbal same as tiger)
Bug
Alligator
Elephant
and we think Lizard, and maybe bird or duck but it was jumbled.
~Using the following signs regularly, clearly, and contextually:
Mommy
Daddy
Help
Please
Quinn (YAY!)
Stop
Go
Wait
Open
No
Yes
Ready
Snip 5 - Dawn & Dusk
Morning Routines!
Q loves to shower with us (aka take up the entire shower, try to attain water from odd parts it's raining off our bodies, and cause general chaos with double the shower time; with neither Q or parents being fully cleaned) and then follow our other morning routines: teeth brushing, hair brushing and fussing/fixing, deodorant (he get's lotion), and more. He signs and 'chats' with us and it's moments like these that will carry me through lifetimes of loving my kid until it hurts.
~Then we go downstairs, and from there it's pure chaos that is a terribly written chose your own ending where neither parent ends up with enough coffee or care left for what will be their day.~
Evening Routines!
Q will do one of two things:
1) Take a long and luxurious bath, followed by naked pagan dancing and running galore, followed by a relatively easy bedtime.
2) Grump to himself and his authorities, settle for a warm wipe down, insist we are not assisting him in dressing quickly enough, and proceed to grumble and toss with gusto.
The difference...is that this is now NORMAL!
We generally have normal evenings, TOGETHER, as a family.
Though Mornings are maniacal, we figure it out every day. I maintain there will never be enough celebration (or coffee!) for the admirable task of all three humans getting out of the door with clean underwear on. There simply is not enough appreciation for basic hygiene and minimal grunting and growling of a morning.
Snip 6 - Joy, That I'm Feeling
Alternating Feelings:
warmth (my heart, my exploding chest, and my being)
brain tingling behind my eyes
lips spasming in odd muscle places around my general mouth vicinity...like I might laugh or giggle...or like I might cry; but the spasming will not stop or succumb to any logic in explaining if those muscles are happy or sad? overjoyed or overwhelmed? Celebratory or mourning?
Throat distress, do I need to swallow or surrender the troops?
Wait, I need to just breathe
Undiluted Happiness
Utter Panic
Lightheadedness
Debilitating Fear
Like I ate too many Taco's
Is this Joy?
This confusion of our 'fight or flight' that's been over-activated for nearly three years on top of any normal anxiety combined with other things...is it going to wane and ease for us?
Snip 7 -
My husband and I were fortunate enough to attend UVM's ASL Clubs presentation, with 3 local members of the Deaf community on the panel, along with UVM’s incredible instructors, and many other community members.
Humbling.
As if visiting a foreign city and knowing you would be an outsider observing the beautiful sights (and ASL in it's natural form is inherently beautiful - it's a symphony of hands orchestrating a most compelling Puccini) within this culture.
The stories of 3 vastly different humans with two resounding themes:
Little to no relationship with immediate family. Lesser of that relationship with other family.
none of their family signs
if they do, basics such as 'eat', 'want food'.
Language deprivation in early childhood
one panel member did not learn how to sign until they were nearly 16.
turns out, this person was an ACTUAL, for real and in the flesh, rocket scientist.
Possibly I cried through the whole panel.
The rest of it was a emotionally blurry.
Attempting to listen, watch and see ASL, and to follow the threads was exhausting.
This exercise profoundly influenced my opinion of how hard my son is working to be bilingual. I knew CI's would be a harder learning curve, I knew ASL is his inherent right to language and that would need Deaf community members to help him thrive, and I knew that I was committed to learn everything he was learning.
Two hours exhausted me.
Q is taking in all this information ALL. DAY. LONG.
All his waking hours of processing that much information.
Today I was fortunate to attend a conference centered around Q's hearing rights according to federal law.
During this day, there was someone speaking on a microphone, a power-point deck, CART services, and an ASL interpreter.
Exhaustion does not cover the amount of brainpower required to acknowledge the communications platforms alone.
Overwhelmed.
Humbled.
Geared up to change laws for children like my Q.
Mostly, that overwhelmed feeling of having too many questions, too many unknowns, and too many...did I make the right decisions? Am I good enough for this? Am I good enough for Q?
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The momentous feelings, the accomplishments, and that for the first time we have a feeling of 'right'ness. As if we are actually heading the 'right' direction.
Feeling the wind is at our back, we are going to time the sunset just right...and we are going to have those moments of utter joy.
From day one of working with any of our ENT's, TOD's and SLP's we've been told...
"You are filling his cup. We are filling his cup. We will continue to fill his cup.
And the one day, that cup will overflow with everything we've filled it with.
And then we keep filling, until it's not overflowing, but pouring."
Our cup is finally overflowing.