being the difference for pre-illness grief

I couldn't have asked for a better start to the 2016-2017 school year.  We prepped, we wrote social stories, we made schedules, and we prayed- HARD- that Hunter would wake up and want to hold his 2nd grade sign.  Haha, I really just wanted him to have a smile on his face when he walked down the stairs, and HE DID.  He told me he was excited to see his new teacher.  He wanted to play with his friends. 

And for the record?  He held his sign for the first time in 3 years.

And smiled for multiple pictures. 

 

And again, for the first time in three years, he didn't have to be dragged into the building.  We didn't leave a crying, screaming child.  He was cautious, a bit slower than the rest, but eventually he walked in his room and Peter and I fist bumped all the way to the parking lot. 

 

TAKE THAT, AUTISM!

 

He had a remarkable first day, and every day after that has been for the most part positive- but the recurring comments from the staff focus on his ability to recover from frustrations at a quicker pace. 

 

We are winning, y'all. 

 

I have been on cloud nine.  After a successful fundraiser Labor Day weekend, with so many athletes running to raise awareness and research funds for Autoimmune disease, I have felt like we were chosen for this path for so many positive reasons.  For once in my parenting career post-illness, I was able to stick negativity on the curb.

 

Until today.

 

I was connected with a therapy center in our metroplex that specializes in care for younger children.  The state funds an Early Intervention Program, and the resources for parents are incredible.  We started a parent support group at our church, and I met with this center's director for assistance in direction of counseling these families.  She took me around the office and introduced me to the staff. 

 

One woman said, "I know your name.  How do I know you?"  We figured out that she had hired me for short-term contract work after Hunter was born.  She asked, "How have you been?  What's been going on since you worked for ECI?"

 

And then I started choking up.  Hard. 

 

Everything has changed. 

 

The size of our family.

 

My career path. 

 

Our residence. 

 

And our son.

 

I don't recall ever reconnecting with someone that I knew pre-illness.  This flood of emotions overcame me as I tried to give the brief description of the loss that we had experienced. 

 

I realized that I didn't remember much about our lives prior to diagnosis. 

 

Every waking moment post infection was spent analyzing, hypothesizing about what went wrong, and hoping, praying, and pleading that the changes that were occurring were temporary.  "It's a phase," my pediatrician told me over and over again. 

 

I tried to think back to what our worries were prior to Hunter getting sick.  Was it what we would do on the weekends, or the AC that went out after we brought Hunter home from the hospital in June?

 

I relived these moments, these early days of adjusting to our "new" life, and as I approached the kids' neighborhood school, I looked at the clock and realized Hunter would be outside on the playground for recess.

 

Before I looked over, I knew exactly where he would be....and I was correct.

 

On the swings.

 

Head down.

 

Alone.

 

And my heart broke in pieces one more time. 

 

Never once did I think pre-diagnosis that my child would be the one needing the "buddy bench" at school, the one needing an IEP to make it through a school day, or a Behavior Therapist to teach us how to handle outbursts, transition difficulties, or accepting the word "no."

 

So as hard as it is for me to write about the challenges in our life, it gives me hope that my openness will help just one family struggling like us. 

 

One child swinging by themselves.

 

One friend with a "soft soul" that will invite them to play.

 

And one adult who will stop the often unintentional shaming we do too often when us parents truly just need a pat on the back. 

 

We all have our struggles.  My life isn't any harder than yours.

 

It's just different.

 

#bethedifference

 

#notjust1in45