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When "I Love You To The Moon And Back" isn't enough love

In the fall of 2019, Quinn developed much curiosity over the moon. Light has always entranced him, and the moon's ever changing effervescence and presence piqued his interests.

As our language grows in abundance, so do our stories. Quinn's sense of past, present, and future has evolved greatly over the last month. We began with lists "first this, then"; and his lists grew in length until we added tomorrows, next week, and more.

The day after Christmas, Quinn asked Jim and I repeatedly to go "book shopping".

Anyone that remotely knows me, knows that this is my favorite. ANY bookstore, ANY library, it's simply my happy place. Having my child request that we take him...there are no words.

Even though I see him daily, my child never fails to astound me with his knowledge or his thoughts. For a four (almost five!!!) year-old that had significant language delays (yes...had! Q is now at Kindergarten level with ASL, fully communicating!) and for a child that still speaks little, his thoughts and mind are so vast.

One night, after a few YouTube videos of his beloved moon, he enacted getting his backpack, space walking (bouncing) with a flag from the Fourth of July. He was headed in a rocket to the moon! He signed "Love you Momma and Dad, I'll see you later, my rocket will arrive on the moon soon, and flag will stay".

In September we were struggling for a full sentence. We were at "eat strawberry". Now, "Do you want strawberries, or grapes for breakfast with your egg?".

If you've read through this blog, you know our struggles with ensuring Quinn's services through the Bristol school district. I left IEP meetings shaking, furious, upset, and struggling. I cried in my car - EVERY single time from a deep rage and fury that I didn't know I existed until I had Quinn. Until I had Quinn, I simply had no idea how unequally children with any form of need could be treated, or that it would require such an intense amount of work and so very many educated supporters.

When we chose to implant Quinn with CI's - it was to provide our beautiful and perfect child with a CHOICE when he was ready.

We knew his success of learning to hear relied on US. His parents. His advocates. His voice.

It also relies on teams of highly skilled specialists, communities of educators with vast degrees, and full clinical teams.

What we truly didn't grasp, was the enormity of the fight ahead of us.

My thoughts were, here is this beautiful and brilliant child who could use extra hours of this and this, and then employ tactics through this school.

MONEY.

District School Money.

Time. Educators Time.

A Public education is NOT a free education, and absolutely not to those with additional needs. I still shake my head every time I think of some of the past meetings, and my heart still hurts and my rage burns deep. Not for Quinn, but for so many families that don't know that they have the rights to ASK for more for their children. I asked. And I asked.

Then I asked an attorney.

And I'm so thankful I did.

Our move to South Burlington last year was one of the hardest choices we've ever made. Then the week of the move we got unprecedented snow, freezing weather, and Quinn had croup. It was horrible.

To put the icing on the cake, my folks had a nearly fatal accident on their last trip down the mountain. My mother barely finished rehab, still does not have full use of her hand, and it aged my parents in ways that will never weigh lightly on me.

The day we bought our home Jim had not slept for two days, I had maybe four hours of sleep and came to the closing from the ER where my mother was, and everything hurt. The right decisions are never easy, but sometimes Jim and I feel that the universe has a necessity to make that ULTRA clear in HD for us. I sat at the table signing paperwork, and questioned everything.

Fast forward to today.

I still question everything.

It's in my nature.

I really enjoy the saying "hindsight is 20/20" - but even then only after enough time has elapsed to remove the emotion. And anything with family, fear, change, happiness, and more...it's simply impossible to have a clear view.

On January 24th, for Quinn's IEP meeting, I knew we would be discussing Kindergarten. With Quinn's severe delays, and lack of access to needed educators at the prior school district....I had NO HOPE that he would be transitioning to Kindergarten. I knew with Jim and I working full-time, just trying to 'make it', that this would also present an issue with needed childcare.

Knowing such, I had done research on partial days in Pre-K and other spaces, researching what might be available to keep Quinn progressing on the path I knew he was capable of. I also have this weird 'clinical' sides with Quinn's needs, because over the years it's really hard to process everything emotionally.

I had to find space in my head to look at Quinn's development and education like statistics, almost. It hurts, and it takes a lot to shut down my emotions and just review data and information, but I'm desperately hopeful that in the long run it benefits my child (and others, if I can pass a few state laws...next on my list!) and his path.

I walked into this IEP meeting with my 'Armour' on and my clinical side ready, having taken the morning off of work to handle his Medicaid paperwork and some other items to get me into the mindset.

I was prepared to fight for what we needed, to adjust what wasn't working, and to hear all the negatives of what my child isn't able to do.

After all, that's what an IEP meeting is, right?

The team in South Burlington, that we chose specifically with our move, astounded me.

They went around the table for introductions, and took turns listing out positives, and room for growth.

Within 5 minutes I was shaking and started to have a hard time talking...because I wasn't prepared for this.

I wasn't prepared for the kindness, the love, and the growth.

Quinn has always been this little empathetic being.

A soul filled with curiosity, wonder, and SO MUCH LOVE.

Love.

I had forgotten about love in IEP meetings. Hell, I didn't know it COULD exist in a school setting.

I listened to the 13 (yes, THIRTEEN, and this is not close to all of them!) folks who work with Q talk about his progress.

How he hugs and cheers all of his friends. How he is a helper with a kind heart. How he loves to make other people and peers laugh. How much JOY he brings to all of these wonderful and talented educators. How they feel fortunate to work with HIM!

Every single person glowed with praise. With Quinn's accomplishments.

YES - we have hurdles. YES - maybe a few of them are mountains. But now, Quinn has expert guides and teachers on this journey with us.

We moved out of a 'home' to a condo. Fearful of the change.

And yet, here is home, just like that. Something inside me finally let loose that day, on January 24, 2020 - the good IEP meeting.

That ever present feeling on my chest that it wasn't enough - that I wasn't enough to help Quinn.

They SAW my Quinn. The Quinn that Jim and I see everyday. His brilliance, his spatial recognition, his memory, his HUMOR, his LOVE, his kind, sweet, and generous heart. The can SEE him, finally.

And they shared stories that even amazed me with Quinn's genius.

At the end, there were hugs.

When I left, I was shaking.

When I got to my car...I cried. A big, ugly cry, that comes from relief. And just...the unexpected joy.

QUINN IS GOING TO KINDERGARTEN!!!!!!!!!!!!!!

He is beginning to talk some, but that's a choice he has to make! We are giving him all of the tools to do so. And whatever he decides is fine with me. He has the absolute most magical belly laugh I've ever had the pleasure to listen to, and I'll be happy if that's all he ever wants to give us.

He can fully communicate in ASL. It's there, it's vast, and he's surpassing Jim and I every single day.

He's going to KINDERGARTEN!

Quinn is joy. He is love. He is kind. He is brilliant.

I'm so thankful to know my kid.

And gosh, watching him grow is my favorite. Now that one elephant foot has been removed from my chest, I can't wait to continue on our journey and begin to ENJOY it.

I want MORE celebrations of joy and kindness, always.

AND...he's going to KINDERGARTEN!!!!!!!