Trying & Grace

In the chaos that is our families constant, I'm behind in blogging.

After much discussion, heartache, and worry...we listed our home for sale the day before Thanksgiving, on Wednesday, November 21st.

We had a contract by Saturday the 24th.

I'm a 'prepper'. I plan, I project manage, I have start dates, end dates, goal dates, and like steady progression. This was, after our prior experience, almost too good to be true.

A week from today, we will be in our new condo. We are trading farm, country, mountain living for a condo in the 'city'.

I've given my chickens to a loving home, we've worked of ridding ourselves of unnecessary outdoor items, and we are downsizing (whilst utilizing a storage unit during the move).

And why?

For Quinn.

 

For our family.

For less commute time, for less struggles with services he needs, and to keep our jobs and our livelihoods.

There is a STAGGERING amount of parents in our position who -

a) voluntarily leave a job to ensure their child has needed services

b) involuntarily leave a job due to the services, absenteeism, and lack of flexibility required to have a work/life balance

c) cannot afford childcare on top of basic diagnostic care

d) divorce due to stressors of care for additional needs

e) go further into hopeless debt attempting to provide their child with the care they need

https://www.nytimes.com/2018/11/21/opinion/deaf-cochlear-implants-sign-language.html?fbclid=IwAR0RqqRA2e1b-JpbBhEGFuAgqB-TNbAJ1J5EB6RglLvC4Rcf8QrSqD-Q-ks

On top of that, our family fully made a decision to embrace, learn, and utilize ASL. This means, with Quinn's pre-verbal delays, he is now being charged with bilingual communication.

This is another step and foundation in learning that numerous neurological, speech, and language studies show will also delay verbal speech.

Quinn is tasked for a multitude of things.

Normal, ordinary occurrences most hearing children and parents take for granted. Our child does not get 'down' time, or much time to just 'be Q'. He must always listen communicate, be pushed to communicate (verbal, sign, pointing, anything) for everything. Eating is a chore (Pick! Green or Blue snack, finger-spell it out, eye contact, continuous motions to indicate needs), reading (make sure Q can see us and is facing us, read verbally and sign at the same time, which enhancing linguistics and emphasis on certain sounds, and make sure he is getting signs), and so on.

It's wonderful, but exhausting for us, and I can only imagine how overwhelmed his little brain must be.

Over our recent holiday break, he took my hand, took me to where we keep some electronics, and signed "Mommy, please, want play iPad". I gave him the damn iPad, a huge smooch, and then we snuggled on the couch after Q took my hand, pulled out a fuzzy blankie, and covered us both up.

We could have read 10 books, sang nursery rhymes, made smoothies, or completed more interactive play that I KNEW would help him more.

I took a deep breath, I let it go, and I trusted Quinn's needs.

I trusted that he loves himself, that he loves me, and that his little body needed a break to 'vegge' out.

The day before our holiday break I was unexpectedly released early from work. It was amazing! I was so incredibly excited to get home before it got too dark, to spend additional time with my wonderful fella, and to just relax. In the excitement, I forgot one of our scheduled services comes during that time. I arrived and had not contacted anyone, and then felt horrible upon the specialists arrival.

You see, we don't get break days.

We don't get days to relax, and we don't get days to shirk our responsibilities, because it's a domino effect.

That afternoon after numerous apologies, feeling horrible...I declined the service and decided to take our exhausted selves home.

I know it wasn't the right thing or the best thing - but Q and I both really needed it.

 

With this move, it will help to eliminate Jim and I's two + hour a day commutes. It will give us a bit of extra time to devote to each others needs, more to Quinn's needs, and to help with our schedules.

Having a condo for a country girl is going to be a challenge, but Vermont is beautiful state with so many options. This will encourage us to get out and about more, and to discover, learn, and enjoy more as a family.

I look at Q every day.

I REALLY look at him. I see his beautiful and empathetic heart. I see his incredibly exceptional intellectual and creative powers, and I see that his basic natural abilities allowed us to not even realize he was Deaf for so long.

He is a marvelous little human already, and he is inherently capable. We have hurdles, but they are not insurmountable.

They are very hard.

They require a LOT of advocacy, and they require us to know our child very well, and to be incredibly strong.

They require that Quinn be very strong. They require that he be adaptable, and that he be pushed to limits at such a young age.

They require constant communication. Emails until my eyes are drooping at night, and bleary in the morning. Research, reading, and exhausting materials until my eyes feel like they are bleeding.

It requires emotions, for all of us. It requires tears, meltdowns, crying out our fears, and sometimes it requires an intense amount of anger.

And again, I look at Q. I REALLY look at him. I see him.

Then I take a deep breath.

I kiss his tumbling curls that still smell like my baby. I hold him tight when he lets me, and I keep moving forward regardless of fear.

If I fail at most everything else, I want to teach Q at least these three things:

1) Love Yourself

2) Always Try

3) Help everyone else love themselves and help them try too

My heart feels like that covers the basic needs of all of us. Through this journey - the fear, the doubt, the unknown, struggling through an almost two year diagnosis with no answers - we just kept trying. We kept loving. And we kept loving each other and helping each other try.

I also try to not take things for granted.

In a check-out line, there was a very tired toddler who was incredibly loud. I was by myself, and I watched that little child and laughed, and was enthralled by the sound of their voice. The parent was beyond agitated, and yelled for the child to stop being so loud. My heart literally broke into a million little pieces. I wanted to give that parent a hug, give that kid a hug, and to tell them both what a wonder the child's words and spoken voice were. Because you see, not everyone is that fortunate.

And when I'm in a store someday, and Q is doing the same thing and I want to yell at him, I think of someone watching me who might be struggling. And that if I take a deep breath and have a moment of grace, that I could make a small difference, and that Q could as well.

Everyone's journey is hard, and it's important that we realize that, that we empathize with others, and that we always try.

Likely we will fail. Many times and a lot.

But then there is love.

There's always love.