Saturday, December 20, 2008

My 2 and a Half Hours of Fame

I love the weekends. Not because I can lay in bed for 7 straight glorious hours, watching a Who's Wedding Is It Anyway marathon, only moving, well because I can't use the bed as a toilet. No, those days are long gone.

Sidebar, I just mentally digressed, thinking about the possibilities of wearing an adult diaper to end the annoyance of bathroom breaks during tv time and had a flashback to my dream from last night which involved an old man removing his adult diaper, but the diaper he was wearing looked like a gigantic version of one of J's Pampers Sensitives, complete with the blue stripe down the front, proving that indeed the old man's diaper was full of...something. WTF?

Continuing on: I love the weekends because I can spend uninterrupted time with Littlest J. I just did the math in my head and realized that during the week I get to spend about two and a half hours with him everyday, that's about 13 hours over five days. Wow, that's really...not any time at all. And sad. And bad. Monday is the worst day because I'm fresh off of two straight days of LittleJpalooza, but the rest of the week gets easier. I don't have the guilt of leaving him because fortunately he is in his own home with his own father all day, but an hour or so in the morning and an hour at night is really ridiculous. I wonder if that is going to have an affect on our relationship? It doesn't seem to so far. He doesn't seem to prefer B over me. I don't really have a deep thought to accompany this post, it's more so just thinking out loud. I'm going to go sketch out some adult tv diaper designs, I'll let you know what I come up with. Please post name ideas in the comment section. First thought off the top of my head is TV without the PeePee or TV No PeePee. It's a work in progress really.

Wednesday, December 10, 2008

My Son's Intervention

My name is Littlest J and I have developmental delays. Hiiiii Littlest J.

When I started getting mail about my disabled child and the benefits he was entitled to I was a little taken aback. I kept thinking, wait...who you callin' disabled? I was thoroughly confused as to how the crazy ass Social Security lady on the other end of the phone even knew my son existed let alone when and where he was born. I was all yeah lady, I'm going to give you my son's social security number over the phone followed by my blood type and credit card number. Turns out when a child is born under a certain birth weight they are automatically signed up for all kinds of government assistance. This little fact was shared with my husband in between the delivery room and the NICU. I'm not sure why he didn't have a pen handy to jot all of that down...hmmm. Anyway, I was too overwhelmed at the time to really understand what was going on so I put it all off until my mind could process it better. Eventually I called Social Security, apologized for accusing them of trying to commit identity theft, asked for a new case worker after aforementioned crazy ass became super crazy ass and signed Littlest up for whatever help we could get. This in turn qualified him for Medicaid. I never thought that my child would be on Medicaid, hell I didn't even know what the difference between Medicare and Medicaid was. I called all of my friends asking which one's for old people? I still don't necessarily truly understand what Medicaid does, but at this point they're tops in my book for helping shoulder some of the burden brought on by Littlest's medical bills. Another tasty block of government cheese we are currently sampling is TEIS or Tennessee Early Intervention System. After talking to my mother who has devoted her life to teaching children with learning disabilities, my friend Jessie who I go to with every parenting question and Littlest's pediatrician, my husband and I decided it couldn't hurt to listen to what they were offering. We had a representative from TEIS come out and talk to us and learned that the program does just what it sounds like it does. They intervene early, identify developmental delays and teach inept parents like us how to work on them. B was concerned with letting the state into our house, he's a wee bit militia like in that way, I was concerned about having someone come in and highlight what made my child "slow". Now, I'm not stupid, I knew being born three months early just miiight cause Littlest to be behind his peers, but still as a mother, who wants to face that? Anyway, B stopped printing up anti-big government pamphlets and stockpiling guns and I got over myself and realized we needed to do what was best for our child. So today, after an initial evaluation and the creation of a personalized program Littlest met his interventionist. I've always thought one day I would meet my interventionist. I envision it being VanVonderen from A&E's Intervention. I like his laid back approach - but this is another post completely. Back to what I was saying. Mrs. G came around 3:30, I arrived a little after 4 and literally in the first 5 minutes I was home Littlest was on his stomach lifting his head like an old pro. Mrs. G went on to explain some exercises we can practice with Littlest and shared some info she printed off of that details what a child should be achieving based on their age and some tips on how best to shepherd them along. I don't know what I expected, but I was surprised to see that this woman was genuine and kind and actually cared about helping my child. I guess since TEIS is a government program I expected to see people who were over worked and jaded, protocol that was backward and poor customer service - kind of like the DMV. But as has been our experience ever since I entered the hospital we have only been met with kindness. From our ante-partum nurses who made us feel like we were at home, to the NICU nurses who loved my child like he was their own, to my in-law's neighbor who shared her story of having a child born prematurely, to B's 80 year old co-worker who put us on a prayer list at his church full of people we've never met, to every one of my friends who has listened to me whine and feel sorry for myself, to every person who prayed and prayed for us during our darkest hour, our lives have been touched by people who truly just want to see this child, who came into this world struggling, overcome his circumstances and prove that there is hope and that good things can happen. We have a long way to go and I know there will be set backs and mountains to climb, but with help like this I think we might just make it.

Tuesday, December 9, 2008

Fear of Commitment

I have started this blog seven times. I have posted things only to erase them the next day. I have changed the name from Preemienitions to Notes on a JohnJohn to SomeonePleaseHelpMeFigureOutWhatTheHellIAmDoing. But nothing ever seemed right. Partially because I am not insane and I know I don't have anything to say that hasn't been said a thousand times before. But mainly because I was afraid of my son. I was afraid of how much I loved him and how close we came to losing him. I would find myself conveniently busy about the house when it came time to feed him or change him or bathe him. Don't get me wrong, I did my part, but my husband was doing the bulk of it. It wasn't post-partum, it was the scars left from having him 12 weeks early. One Friday in May, at 25 weeks 6 days, our happiness faded into sheer...fucking...terror. It was two and a half weeks of bed rest, a c-section at 28 weeks 1 day and seven weeks in the NICU. We went from being blissfully unaware of the painful side of pregnancy to being smothered by the reality of it. By the grace of God we all came out relatively unscathed, with the exception of some developmental delays for Littlest J, overall we had the best of what could have been a really bad situation. I loved him ferociously but I was afraid to commit to being his mother. We were too close to what it would feel like to lose a child and I knew if I let myself love him as much as I did and something happened I would never recover. I was afraid of him getting sick, I was afraid of him being blind, I was afraid of what living in a plastic box for almost two months away from the touch of his mother and father would do to him, I was afraid that he wouldn't know me, dear God was I afraid. I needed an outlet for all of the emotional drama so I thought I would start a blog. But as I said earlier, every time I started it, I never knew what to say. I felt like I had zero room to talk about being pregnant, I mean what did I know, I was pregnant for six months and I didn't find out I even was until I was three months so in all truth I was pregnant for about two seconds. Every time I wrote something about being a mother to a premature child I would read it again and feel like I was just showing the negative side. So, I gave up. Now it's been 4 months since Littlest came home and all of the horrible things I was obsessed with protecting him, and me from haven't surfaced. He isn't blind, he has survived a few bouts with the common cold and he knows who I am. I can be sure of that every time he blesses me with the gift of his little, toothless smile. I've chosen to power through my fear and simply love my son. I've lived my whole life a slave to anxiety and in turn I have missed out on too many things. I will not pass that on. I will not risk my child being able to feel that I was holding back from loving him. He is far too precious. I feel like I've known him all my life, like he is the most familiar friend, a little spirit that has always been with me. He was destined to be mine. So I am no longer afraid of my son. I don't care about all the things I missed in those last three months of pregnancy...I'll pick them up on the second go round. I'm moving on and making up for the weeks we missed. My son is a fighter, a survivor, my lesson in faith and someone I am most fearlessly committed to.