Sorting things out

To avoid confusion, please note this blog entry was started in the early morning hours and was finished in the afternoon.
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Today has been a painful day already. I hurt in every possible way from the moment I woke up.
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It hurt to open my eyes. It hurt to move my body as I tried to get out of bed. It hurt to walk. I realized how bad my head hurt as I pulled my shirt over my head to get undressed. The spray of water onto my skin felt like needles.
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That's when the emotional pain set in. I remembered a dream I had last night. I hurt to the point of feeling shriveled inside as I remembered the details.
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As I am sitting here trying to transfer the details from my brain to my fingertips, a wave of chills has gone up and down my body numerous times. It hurts.
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Anyway, Grayson was sitting across the room from me. I was trying to tell him bye. I kept saying, "Bye Grayson!" as I waved. He was looking in my general direction but would not look at me or respond to me at all. As a matter of fact, it was almost as if he were looking past me or looking through me. I remember looking behind me, as I have so many times, trying to figure out what Gray could be so focused on. There wasn't anyone or anything there. I mean, there was but nothing that could be so captivating, so mesmerizing. By looking at him, his deep stare might lead you to guess a swinging pocketwatch or a super bright light of some kind were involved. Nope. Nothing. Just me, Grayson, and a very familiar boring background that Gray seemed completely lost in.
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I continued to wave. I said, "Bye Grayson...Grayson, bye!.....Grayyysonnnn? Bye." I wasn't going "away". I was simply going into another room or leaving the house for a short time (I forget). I was just trying to make a connection with him before I left. I continued to offer my goodbyes and kept turning around to see what could possibly have such a hold on my son. Still, I came up with nothing.
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To my surprise, even walking closer to him made no difference at all.
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I know exactly what caused me to have this dream. Every night, Ray walks a very sleepy Grayson over to me and says, "Tell Momma good night". On a good night, with his head already resting on his dad's shoulder, he'll say, "Nite". Actually, it sounds more like, "Niii". It's precious. Since Grayson cannot say, "I love you", I say, "Love". On a good night, he says, "Wuv", which of course, is LOVE.
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On occasion, he will not tell me good night and/or will not tell me good night. I say it several times in attempt to get a response. Ray will even say something like, "Tell Momma good night. Say Nite, Momma" or "Love...Grayson, LOVE".
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Last night was one of those nights that Ray and I both tried to coach him through one of our favorite bathtime rituals. It is such a feel good way to end a long day. And to be honest, it's something I truly need. I interpret that conversation between Grayson and I as his way of letting me know he's okay.
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When he refuses to do "the usual" (like last night), I really worry about him. Watching Ray walk away from me carrying Gray in his arms is heartwrenching. It's almost like the end of a movie. Two people - friends, lovers, family, etc. - decide the time has come to go their separate ways. As you watch it happen and try hard to accept it, what you really want to do is scream, "Nooooo! Wait! Come back!!! Pleaaassseeeeeee! Come back!!!!! Don't go!!!!!!" THAT is exactly how I feel.
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If that seems odd to you, let me remind you that we had to call 911 twice because our son passed out just before his bedtime. He was completely unarousable for 5-10 minutes. If you haven't ever seen your child in that state, let me give you a simple description. It's like seeing your child dead.
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Throughout the night, the validity of my worries are confirmed as Zander yells out or we accidentally drop something onto the floor. Nothing wakes Grayson when just months before, EVERYTHING woke him. Those who want to reassure me say, "He's just getting some good rest". Yeah, you can look at it that way. It's a "nice" thought but indicates STUPIDITY if the person has any knowledge of what Grayson has been going through lately. Personally, I'm not one that hides from the truth. Tell me how it is. If it hurts, it hurts. If it isn't what I want to hear, that sucks. But once I know the real deal, I can work on acceptance or how to best prepare myself for a damn hard fight against the problem. The power of knowledge and the willingness to accept the truth are empowering.
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I could be wrong, but I truly believe Gray passes out each night or gets to a very similiar state. You have no idea how many times I consider going into his room and trying to wake him. I never do though because Grayson doesn't wake well. It goes way beyond a cute, sleepy confused state. Grayson often gets incredibly angry upon waking - whether he is awakened or he wakes on his own. He screams, cries, kicks, and doesn't want anyone near him. When I describe Grayson waking, I often say it's like waking a foreign being or a monster. He is completely unpredictable. He doesn't listen. He doesn't speak. He won't let you touch him. He just throws his body about and verbally expels outbursts of pain, discomfort, and/or anger. He becomes completely unrecognizable. He LOOKS like our son, the son we know and love, but he acts like someone we don't know. We want to connect with him but do not know how.
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And my worries continue into the morning hours. Every single day, without fail, the fear of Grayson not waking clouds my brain. On mornings I have to wake him at a certain time (for a doctor appointment or whatever), I am actually guilty of never waking him at the time I planned to. I take a few extra minutes to mentally prepare myself for going in his room and trying to wake him. I have be thinking as clearly as possible incase he were to not respond to me. I cannot be so shocked and distraught that I become temporarily "disabled" and cannot remember that magic number combination of 9-1-1 or something.
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I am so thankful to report I haven't ever had Grayson not wake when I went into his room. Now, 9 times out of 10, he gets very upset. And as miserable of a start to a day that is, I try not to complain too much because while he's temporarily unrecognizable, he's still our beautiful little boy who is responsive, breathing, and has a heartbeat.
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When we have no where to go and nothing to do at a certain time, I let him sleep as long as he wants/needs to. To be honest, I always hope Grayson sleeps till a decent hour. I feel his body best knows when he's gotten the amount of rest he needs. Still, as I listen to the monitor as I get dressed, blog (as I am this morning) or whatever, I feel nervous. I am afraid he just might not wake up.
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I wish my fears didn't exist, but they do...and they are valid.
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A week or so, I saw a video Jenny McCarthy did. You know, she is the former Playboy Playmate who became an MTV v-jay. Anyway, she is the mother of an Autistic son and has become quite an advocate of the DAN (Defeat Autism Now) movement. She is what I'd call the "in your face" type. As Ray said, her personality is similiar to mine. She believes what she believes. She tries to convince others to take on her strong beliefs. If she is successful, great. If not, that's okay too because she feels so good about her decision and the results she gets from that decision. In that video, she presents the information in an "this is the only way" style. I am willing to consider a lot of what she says but not accept it as gospel and practice it in my own life. Out of all she says in that video - some personal opinion and some hard facts, ONE thing sticks out in my mind over everything else.
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She talked about how she always daydreamed of one day hearing her son say, "I love you, Mom". The first time I saw the video and right now as I think of that thought myself, I want to cry. I know our son is still young (only 26 1/2 months old), but if he didn't have a speech delay, he could say it - or say something very close. But the fact is: He DOES have a speech delay, and he does NOT say it. I believe whole-heartedly he would if he could. I believe he wants to. He just can't. And I cannot tell you how much I look forward to the day he can.
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I guess this might sound bad, but I don't know how to say it and make it sound good...A few months ago, I not only realized something wasn't right. I knew something was wrong. I had no idea what. I just knew something was wrong.
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It all started with Grayson's chronic diarrhea that we asked his pediatrician about when he was a year old. We noticed things along the way that we wondered about and/or had concerns about. But we always dismissed it as Grayson having a strong personality, him being "all boy", him hitting the "Terrible 2's" early, him becoming a big brother, etc. After months and months of research, doctor appointments, testing, evaluations, etc, we finally got our answer: Autism.
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I still think Ray and I have done a good job accepting the diagnosis. It wasn't easy to hear. It was a big pill to swallow. I hadn't ruled out Autism, but I wasn't focusing on that disorder in particular. I guess my hopes were high that Autism wasn't what Grayson was fighting. In a way, I feel guilty for saying that because it could be so much worse than Autism...BUT IT ISN'T! That's awesome news! I'll take that and run with it! After all, I've known several families with a child who was really challenged, both mentally and physically. Even though I have no idea what it is like to be in that child's parents' shoes, I have a good idea (or I think I do at least). How devistating. How can they not be devistated? Sometimes I'm devistated. But at the same time, I know it is what it is. I don't question the diagnosis AT ALL. I feel great about who did the evaluation, how it was done, etc. Grayson IS Autistic, whether we like it or not.
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Now we're at the point where we try to get him all the help we can in the form of various therapies/treatments to get him feeling the best we can. When he starts feeling better, we will know it. We'll see it in his eyes and in his smile. We are eager to get Grayson the therapy he needs so he can speak the way the wants to, walk the way he needs to, feel the way he wants to, etc. I want to snap my fingers or wiggle my nose to make it all happen RIGHT NOW. Unfortunately, it doesn't work that way. It is a process that will take a lot of time, a lot of effort, and a lot of money. I feel we don't have all the time we need. There's never enough hours in a day, but we have to find the time. We definitely have the effort. We want Grayson better, the best he can be. And money, well, we don't have a lot of that. It is rare we go to the mailbox and do not have a medical bill in it. It's crazy. I cannot tell you how many times Ray and I have both said, "What are we going to do? Pull money out of our ass?!"
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Ray makes well and has a solid career. We've always been in the middle - not rich and not poor. But all the medical bills in the last year or so have really set us back. Of course, having a poopy insurance policy made a bad situation an absolute NIGHTMARE.
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Ray and I have been lots of things in our lives - a son, a daughter, a grandson, a granddaughter, a niece, a nephew, a cousin, a friend, a girlfriend, a boyfriend, a student, a cook, a waiter, a cashier, a receptionist, a call center rep, an intern, a husband, a wife, an architect, etc. NEVER have we given so much of ourselves - every ounce of our being - to our role as parents. NOTHING and NO ONE means as much to us as Grayson and Zander. We will do ANYTHING and EVERYTHING for them. We'll climb a mountain. We'll swim across the sea. OR we'll die trying.
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I cannot express in words how much it hurts to see your child hurting. I've been in extreme pain before - physical and emotional. I was in a wheelchair at the age of 4 due to extreme back pain. I couldn't walk. I was stuck with needles every day, multiple times a day, for a 3 week hospital stay. I was an eye witness to my family falling apart, a process that took 17 years from start to finish. I've been manipulated and mistreated by my own father. I was blamed for the demise of my parents' marriage by father. My mother and I were kicked out of our own home a few days before Christmas. I was lied to so many times - too many to count. I have been disappointed so many times in my life - too many times to count - by someone I trusted with all my heart and who supposedly loved me so much. I went through a painful pregnancy. I could go on and on. This isn't a sympathy list. I don't need pity. I don't need an "I'm sorry, Tish". There's no time for that. I'm just trying to convey that I just THOUGHT I knew what pain was. I had an idea, but seeing my child tantrum and lose control every day is PAIN. It hurts from the core of me and radiates as a sharp, bright orange barrier around my body. It hurts to move any part of me. Sometimes it hurts to simply move my eyes. Day and night, I think of my sweet Grayson and any way I might be able to help him.
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At times, I come to the conclusion that Ray and I are doing all we can. The problem is that it doesn't free me from the pain. In no time, I'm back to thinking about how I want the best for Grayson, that I want him to feel good. I don't want him to be upset, angry, confused, etc. I want him to be happy. I want him to be free. Maybe what I'm trying to say is that I want him free of Autism. Some say that can happen. Some strongly disagree. And the ones that say it can happen, state that it only happens with a very small percentage of Autistic children. No two children are the same. I'm very optimistic. Grayson will get therapy and get better. But at the same time, I cannot stray from being realistic. He IS Autistic. And right now, he faces BIG challenges every single day, challenges that Ray and I try to help him with but aren't quite sure how. I guess we need some training as much as he needs therapy/treatment.
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We're so thankful to have so many thinking of us and praying for us. We're in need of all the love we can get. Times are tough. Sometimes I feel our home and our situation creates some kind of time warp. It feels like we're continually lost with no awareness of change around us. Our world is about us and only us most of the time. We are responsible for keeping our world turning. It is an exhausting job. It really is. How we look, how we sound, and how we feel is evidence of how hard we work. I cannot tell you how many times I've heard someone say, "Tish, I don't know how you and Ray do it". Without hesitation, my response is always, "I don't know either". But when I sit back and gather myself some, I do indeed know how we do it. We are motivated by the immeasurable love we have for our two boys and each other. As long as we have each other, NOTHING - not even Autism - will get us.
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