Recently I have been tempted to delete this blog. Yes, I said delete, finish, adios blogging world. After a long discussion, Jer and I both agreed not to do so, but I still feel like I need to get a few things off my chest.
This blog was meant to be a journal of our feelings, keep everyone updated on AJ's progress, and with the thought we might help other CI/CP families. Lately, I feel like our blog has served only one of those goals, and served it half-heartedly. It's been AJ's progress "mass updates" galore.
Does anyone read this crap?
I often wonder if anyone (other than the, eh, 10 or so people I know for sure do) reads this blog and what they think. I have the same commenters most of the time (my CI Momma's!), but I wonder about the lurkers and pass-by-ers. That's not even a word. Oh well. You know what I mean. Its also what I think when I contemplate writing a book. While others have said, "Your wife should write a book!", I'm not so sure people want to hear our story. "Adoption Gone Wrong." Doesn't exactly have the same ring as "Girls Gone Wild," you know? I don't know, I just wonder.
Eh. You don't know the half of it. While we try not to sugar coat as we did on the previous website, we certainly don't share all of it. Sure, I can calmly call someone on the phone and tell them a "not so great" update on AJ without crying. What you don't know is how long I've cried beforhand and how many times I've rehearsed my words before I've placed that call. If I've lost my mojo on a particular day, I'm still a champ at crying silently while on the phone. I can type the facts and let you have a tiny glimpse of my feelings on the subject. I've taken to writing mass updates a few days after an appointment or event; I find it easier to write in a factual manner.
"How do you do it?" & "How do you keep everything straight?"
I don't know. I really don't know. No, I have not magically found more hours in the day. No I am NOT AMAZING. I do not feel like a supermom. I do what I have to do. How do I keep it straight? I guess I was given an elephant's memory and organizational skills for a reason. I'm not perfect. I could be way more organized in regards to AJ. Can you see the pile of papers I have sitting here to be filed in his color-coded binders? The good days give me a natural energy boost to get through until the next few bad days pull me down. The rollercoaster continues.
"It is what it is."
You've all heard us say this before. But honestly, it shouldn't have been. I know, I know, you're tired of hearing about the first 13 months of his life. Well, today my friends, my answer is too bad. Yes, this could have happened if we had had a biological child, BUT, there is one major difference. We would have known from the beginning. We were lied to. That is a grief that sticks with you. Believe us, we wish it would go away. This is our reality, we don't get to just step away from it and pretend it doesn't exist. So it isn't what it is. It was not fair. It was wrong. We are still grieving and no, I don't know how long we will do so. I do know that it is part of the process and unless you walked the journey that we have with AJ, please, don't judge. Please, don't assume that just because AJ is thriving all is perfect. We can't forget about what happened. We are reminded every day. Saying "it is what it is" might be our way of brushing the subject to the side, praying to God you'll talk about something else after that akward moment occurs where you don't know what to say to us.
Often, the 5 minute breaks, afternoons with a sitter, or even the rare overnight get-away trip just isn't enough. I'm just now able to admit that to other people. We don't go on fancy vacations. We don't go on vacations period. Jeremy and I haven't had a vacation in 4 years. The idea of a family vacation is very scary to us. Family vacation wise, I think water park. Fun, right? Eh. This is what I think 1) AJ loves water YAY! 2) Sensory Intergation Dysfunction overload crazy, crying, freaking out child who is beyond consoling and screaming in a hotel room 3) AJ out of his environment and routine 4) Don't even get me thinking about putting him on a plane again. While his ENT has assured me he'd be fine on a plane (unless he had another URI) he was "supposed" to be fine when we flew home with him and I just not ready to roll those dice again just yet. Now I am all for taking AJ out of his environment, but at a pace he can thrive in, not a pace that will send him flying like a bucking bronco into a world of chaos.
You have no idea how I longed for him to be at the pool and eating popsicles with other kids this summer. How I wished my only "scheduled" activity with him was a playdate with Lucy Lu down the street (Lucy Lu doesn't exist, just an example). You didn't see the tears roll down my eyes as I saw other children running around the playground, asking their Mommy's for more 'uice (juice). You didn't feel my Mommy pain when I realized AJ could not attend a bouncy house party because adults are not allowed to accompany the children on the apparatus', and he is not able to play on them himself yet. Lord knows he'd want to climb up there and how could I deny him that? You don't feel my slight jealousy and feel my heart breaking when I see other children developing normally. The pain is there peeps, I just try to hide it. We both do.
AJ's needs are consuming. Parenting a special needs child and balancing your marriage is tougher than it looks. I may offend people here, but to me, special needs parenting is a whole lot harder that parenting a typical child. There, I said it. People have often said we make it look easy. Well, thanks for the compliment, but it certainly is not. One of the two usually suffers. It's only natural. It takes a lot to make the scale balance evenly, when most of the time its just not going to. Every move we make revolves around AJ.
What's so odd is that AJ sort of has nothing to do with the whole thing. Confused? Me too. We love him, no matter what AJ, his soul and personality are brilliant. His issues are what cause the stress. How can I compartmentalize it? I don't know. I do know that I have to stop blowing his issues and what we do off like they are nothing. Contrary to popular belief, they are not going to just magically "go away." Even though I know they are a lot to deal with, I think nothing of adding another therapy on to what is already a busy schedule. If he needs it, then we do it. In the moment, I'm Advocate Mommy. Its in the aftermath I turn into Just Mommy and am fighting off the tears.
"No one can do what you do"
A great friend told me this a few months ago. At first I took it as a compliment and was humbled by the thought. Then I had an intern mini panic attack. Oh my. Thinking about what would happen to AJ if something happened to Jer and I together, is, ah-hem, nothing short of terrifying. While neither of us plan on going anywhere, I still feel its important to plan and know what we'd want for him, heaven forbid that day would come. Its not as simple as "Oh, my sister would get the kids, would go to their school, blah blah blah, done deal." Nope. AJ is a whole different ball of wax. Let's just say no one is volunteering-and this whole idea scares me.
"Yes, I know its all I talk about."
My friends who listen to me go on about all of AJ's world and really have no idea what in blazes I'm talking about. I know, I know. It IS all I talk about. That is because AJ is my life. Right or wrong, I'm sure you'll make that decision for me. When we decided to have kids, we both wanted me to stay home with Baby. It was a wise decision, as I became AJ's assistant. While I love my job, it is beyond demading and consuming. So I'm not the bar-hopping 28 year old. I'm the "wow your so young" special needs mom. Don't knock me when I'm obsessed with New Kids on the Block or Twilight, because for me, that is my escape. My escapes to vegetarian vampires and meeting dreamy boy band members allow me to think of things other than therapy appointments and why my son isn't talking.
I've decided to take a break from the blogging world. I'm thinking I'll still post occassionally, but I won't touch on AJ's progress until I feel ready again. We're going to light and fluffy people, because the serious stuff , I just don't feel like sharing right now.
If you've been reading recently, we are exploring a new curriculum for AJ at school to help him to communicate. While I would never want my child's life to be smooth sailing (no building of character on that route) I do wish things were a bit easier for AJ. IT.BREAKS.MY.HEART that my sweet baby boy is not talking. I'm beginning to wonder if I'll ever hear him say Mommy or I love you. Such simple words to you and I. I would move mountains to hear those words.
And so I will.
And so we will.