Saturday, November 15, 2014

That day...

So despite how my last post sounded, we really have been doing ok.

The sadness, pain and heartache comes and goes in waves.
We have good and bad days.

Like I mentioned before, we've suspected this for quite some time now, so it wasn't a shock to us.
We had voiced our concerns to some family and friends, and I'm sure it was out of love and in an effort to be supportive, our fears were always quickly dismissed with a "Well boys usually develop slower", "Well he didn't have a sibling to really learn from," and a a couple "do you think maybe you're just being paranoid/extra worried?"...We never were offended or hurt by any of these responses, and to be honest many times we allowed ourselves to believe them, to feel comforted.

But we knew.

There were a few times when we sat down together and tried to figure out if we were really just being paranoid. We would just try and ignore our suspicions, but they were always there, deep down, festering inside of us.

To be honest, there hasn't been a day since we found out I was pregnant with Ez that I haven't wondered. We knew there was a 25% chance, since we already had a son with ASD. But I promise you there is not one parent out there with a child who has ASD that hasn't wondered or worried about the same thing for their other children, at least I know I'm not alone with this feeling.

We have been seeing state early intervention specialists & doctors since August (we made the appointment in February...i'll talk about that atrocity in another post). We were told he was "At Risk for Autism" by several different specialists/doctors. We knew this, which is why we sought them out.

So we powered forward, still doing ok, still strong.
We just wanted to either get a diagnosis or rule it out completely. We wanted this torture to be over with, we wanted to be able to deal with this head on, instead of dancing around it any longer.

I remember sitting in the exam room/office for hours talking about Ezra, filling out paperwork, and answering question after question. I was completely holding it together, I really was doing so good. I just wanted to get through it, get Ezra the help he needs. I was all business.

We were at the end of the appointment.
We had already agreed in previous appointments that he had ASD. This appointment was to get it officially on paper, and I knew that. I was given paperwork/evaluation tools to fill out for her and bring back to the appointment and give to her.

Keep in mind, I literally hadn't shed a tear or even anything for the last few months (like I said, I was all business--trying to get things done...I didn't want to get emotional, because I knew i'd fall apart).

She turned to me and said "So we do not even need to score these (the evaluation questionnaires she wanted to me fill out & bring back). I've seen enough and we have enough here to write the diagnosis without even scoring these."

For some reason that triggered EVERYTHING i'd been holding in for months.
I got that lump. You know the one you get in your throat when you're trying not to cry?
I felt the tears falling. At that moment for the first time, I felt shocked.
I had to pull myself together. I needed to be strong. To get through the rest of this appointment.

I stood up, went over to Ezra to clean up the mess he was making with his granola bar, I needed to be distracted.

The appointment ended. I walked out to my car and buckled Ezra into his carseat.
I sat down in the front seat and looked at the paperwork she had given me.

There it was.
It was the first time i'd seen it officially on paper.

Encephalopathy, 348.30
Autism, 299.00
Global Developmental Delays, 732.42
Communication Disorder, 784.42
Coordination Disorder, 781.59
Sensory Processing Disorder, 313.9
Macrocephaly, 756.0
Sleep Disorder, 780.56

I instantly became sick.

I lost it.

In that moment, all i wanted was to curl up in bed with Jeremy and my boys and cuddle for days.
And we did, that night.
We cuddled in bed holding each other, crying and laughing at Recker singing disney songs for us.

Wednesday, November 12, 2014

Life on Repeat...

Its been awhile...

Its been a hard year.
No honestly this year has been hell.

Every time I sit down to write, I get nothing.
Im not sure if I just don't to want to accept our truth, I feel like when I put our life into words, when I put it out there, that I have to finally accept it and acknowledge this is real, this is reality.
This is our life.

I can't explain the insanity this year has been. Ive spent way too many nights on my knees begging for help, for relief, for comfort.

Fortunately most parents do not have to experience the feeling of your child "slipping away" from you, but Jeremy and I have had to...TWICE. And its a pain unlike any other we've felt.

I just want him to stay! I don't want to lose him.
But he is slipping away, like Recker did.  Slower, but all the same in the end.

Every missed name recognition, every lost word or skill, his indifference...a stab to our hearts.

Everyday is torture.

Its been about a year now since we first felt it...We never actually said the words out loud (until recently), but we both knew. We would both look at each other and just know, then one of us ended up in tears with the other comforting them, lying, saying everything was going to be fine when deep down we both knew it wouldn't be.

It took YEARS to heal from Recker's diagnosis, honestly I'm not sure we had fully healed. And now another blow.

Jeremy and I were so excited to be able to go and do things with him that we weren't/aren't able to do with Recker. Yes I know how terrible that sounds (but imagine how horrible it makes us feels to be a parent and think that), but its true.

We love Recker more than life itself, but with his diagnosis came the reality that we won't be the type of parents we've imagined our entire lives. The image you have growing up of what you're life will be like as an adult, as a parent, was gone in an instant.

We thought when we had Ezra that we'd be able to partially fulfill that dream we had for ourselves (Selfish? Yes. But try and tell me you don't have little hopes and dreams for your child/dreams you've always wanted to fulfill as a parent).

We're dealing with that reality all over again.

Im not sure how much heartbreak a heart can take, but I can tell you, mine is almost beyond repair.

Why?! How am I expected to pick up these pieces again and mourn this loss again, with another child? Jeremy and I had just barely stopped crying and finally felt like we were healing from Recker's diagnosis. It just feels never ending. We were finally standing on both feet again, and just like that we get knocked onto our backs. AGAIN.

Our sweet Ezra has Autism.