Mommy is spent. I have a million things to do, that yes all can wait for another day, but they are still things I need to get done. I used to be so organized, so well put together. I'm not feeling like that at all these days. We are soooo tired of waiting for AJ's implant. There is nothing we can do, and I am sooooo frustrated with that.
I have mastered scheduling appointments, organizing all of AJ's paperwork neatly into color coded binders, and talking to idiots at the insurance company or provider offices. I know everything happens for a reason, but why is this happening? It is Day 57 of waiting on state insurance. With today being Friday, Days 58 through 60 won't be until Mon-Wed of next week. Our surgeon has not been successful in gaining more OR time. As of last week, he was out to March 11th already. If anyone knows where to find that "easy" button that I see on the Staples store commercial, please let me know.
I'm bawling, wishing my son could pointed to his ear and have signed "hurt" or "ear" or even "ear hurt" to me today. I'm bawling even harder wishing he could say "Mommy my ear hurts"...wishing he could say anything at all. I wish I knew whether AJ had hearing when he was born, and it was a progressive loss or whether he was born deaf. I wish I knew why he was deaf. I don't know either of those things and there is no way to find out. €I'm tired of the lack of communication between us and AJ. I'm low on patience. I am praying for strength. I am praying for a reprieve from this rollercoaster. I'm thankful for the modern world of medicine. I'm praying for guidance as I grieve for my child. When he was diagnosed, we jumped in. What do we need to do? Let's get him whatever he needs. Somehow, the grief took a backseat.
We spend so much time "down-playing" (by nature) AJ's issues. People may think that we are "negative", but we really aren't. This is what we live, every day. It isn't hell, but some days its not so fun. We don't compartmentalize it, or put it on a shelf like it doesn't exist. We don't ignore it. We deal and make sure we do what's best for our son. We worry with every plateau and celebrate every gain. People say, "See the positive, he's come so far." We hear that A LOT. He IS a totally different kiddo than the one we carried off the plane. But, we also know what's next on his agenda, what our next goal is, and what he should be doing. Truth: this is the hardest thing we have ever done. There are days I can't breathe I am so overwhelmed...there are days when I'm so proud of AJ that I feel like nothing can tear me down.
My Mom married the man I call "Dad" when I was 22. He lost his long battle with cancer the day AJ was diagnosed with CP in December 2007. We got that call a half hour after we got home from AJ's neurologist. I miss him terribly. When I have days like today, when I fall apart, I can feel him near me. When he met me, I was a young lady (his words not mine!) who needed to stand on her own two feet. There was one situation in particular where he firmly told me, "Don't make it so complicated, Heidi, make it simple." Growing up with a single mom, I didn't really have a constant male influence. This was never a problem, nor did I ever feel different than my peers, just in case you were wondering. Naturally I thought, who does this guy think he is giving me advice?
It was THE best advice he ever gave me. At a party we attended with my Mom and Dad, Dad and I shared a dance. I remember him saying he knew how much I missed Doug (Jeremy's Dad) and how much of a special person he was to me. And then he said, "This is our time" and squeezed me closer to him. With my head on his shoulder, tears welled in my eyes. We never spoke of that moment again, but we both just "knew" how we felt about each other.
He went into the hospital a day or two before AJ's ABR test. I called him and my Mom at his hospital shortly after they had wheeled AJ's down the hall to begin his ABR. I told my Mom where I was, etc. and she asked if I wanted to speak to my Dad. He got on the phone, and sounded positive. I remember him saying he thought he'd be home or maybe in rehab in a day or two. I told him where I was and what was going on and he said, "Everything's going to be fine." Comfort when I needed it.
The next day I took AJ with me to the hospital to see him. His daughter and son were there, so I shared the news about AJ's deafness. Dad was in and out of it, but I remember him getting excited when my Mom tacked a "Winnie the Pooh" marshmallow treat on a stick on his bulletin board. When I got ready to leave, I walked to the side of his bed and he woke...looking me straight in my eyes and then into AJ's. He was looking at us...he knew. He knew it was the last time he would see our faces.
I feel so blessed to have had Dad in my life. I am angry at cancer for destroying his body, breaking his lively spirit, and taking him from us all. But I know he would be suffering if he were still here. I love ya Dad, but you-in pain-was not you. I find comfort in knowing he is no longer in pain. I am eternally grateful to him for loving my Mom and making her so happy. I am happy that he met his grandson and his grandson's cheeks (Dad had an obsession with AJ's cheeks) before he left us. I hope he knows how much he meant to so many and that even my best friend misses being called a "brat". (That was his thing)
I miss his tapioca pudding and his cheeseburgers. Rarely do I pronounce the word "casino" correctly. I still call Pepsi "P.P". Sales of Skippy, Spaghettios, ketchup, and New York Vanilla ice cream are suffering tremendously without him here. I miss the fly-swatter battles between Dad and Mom (hilarious!) and his silly tattling. I miss his "Guido" shirts.
I miss his smooches...and him sticking his tongue out at me whenever I was "sassy" or was on my way out. I miss him insisting that AJ's 3 month picture from the orphange being the one that way displayed at all times. I miss his awesome friendship.
So, Dad, it IS complicated. But I am trying, like hell, to make it simple. And I know your right.
Everything's going be fine. We'll get there...someday.
I Love You and Miss You,
The Lil' Brat