Resistance is Futile

What goes up must come down. Damn I hate that. But if you know me well, you know I allow myself two pity parties per year and I guess I am happy to report that I am really long overdue for one. I am tough, but not a sad person by nature, so these are just a form of catharsis I guess. The triggers for these events, which are usually a day under the covers crying in pajamas watching sad movies or home videos, are usually some combination of things. One thing alone can never take me down. Often it can be talking with people from my past or people telling me how good I am or people telling me how responsible I am. Who the hell wants to be so damn good all of the time? What an albatross that is. In any event, here are the things that really get me so if I am going to go to the dark side for the first time in a very long time, I’m going to unload big time. If you don’t want to get to know me too well, look away-this one is for mature audiences only.
Here goes: recently there was an article about two families with children with autism that received large awards in their anti-vaccine cases. I have a confession to make. The vaccine thing is my Achilles’ heel for sure. I have avoided this in my blog in all of this time and somehow I feel like I have been dishonest; like I must talk about this topic to be true to myself. It is one of the most critical topics in the autism world and one of the most personal for me. To think that I buckled my beautiful, perfect, 13 month old boy into his car seat, drove him to his appointment, held him while they gave him an injection that may have changed his brain, his life forever, well, ouch. I can see myself driving to the pediatrician since we did it so many times. Why didn’t I question such a serious amount of vaccines at once? BEYOND… Nope, can’t do it. no, no, no. If I allow myself to go there, I will have trouble getting back. Melodramatic? perhaps, but just try to wrap your brain around that if you are a parent. The problem is/was that we truly don’t know. I don’t know where he was before the MMR vaccine. He was so young, only 13 months. He seemed to be developing fine….We will not know, but if I make all of this my fault, well then how do I face it? I try to tell myself that I did what I did because I thought it was right. Everyone told me he should have his shots and I never questioned it. The discourse wasn’t around like it is now. I don’t like to go to this dark side often because of the deep mommy hell it presents, but whenever I see or hear the vaccine thing, I get a nasty pit in my stomach. Where was I? Who was I? He definitely seemed to regress after the vaccine, but not right away so it’s hard to know. I try to focus on the now and the future. I can’t go back so I can only move forward. I am not writing this for anyone’s pity. I am writing it because I know there are PLENTY of parents that I share my blog/journey with that feel this way too. Any parent of teenager or older with autism knows that we were in the goddamn dark and still are about the environmental triggers or any cause of autism. But for me personally, this is my demon that I deal with and carry with me. Earl does not blame me, for which I am grateful, but I do not have sufficient clarity for the time before the vaccine to offer myself clemency or lay blame. As I say, it is one mine in my personal mommy minefield.
If I’m going there, then I’m going all the way. I’m stealing this blog idea from my friend Jen’s husband Mike. He guest blogs on her blog (Earl-I will give you a guest blog I promise) and he wrote about the fear you have as a parent of a special needs child in assessing your mortality and planning for your child’s future in the event of your early demise. I read his blog on Sunday, and no offense, but it may have been just enough to reach my inner core and level me. You see I pride myself on being very tough, very together, but like I’ve said before, about twice a year, I really need one or two extra fingers to plug up the dike and I come up short. Ok, so, is it plagiarism if you just steal the idea and not the actual words? I’m giving credit so hopefully there won’t be an issue! In keeping with my type A personality about 20 seconds after Bryan was born I insisted we get life insurance. Not long after that Earl and I started talking about our wills and what would we do if anything happened to either of us, you know the drill. Later on after Jason was born, this discussion started to change. For anyone who doesn’t really know us too well Jason had several medical issues not long after he was born. At 5 months old we found out Jason has pituitary hypoplasia (1/2 a pituitary gland) and would not grow without meds. This was exactly the same time Bryan was diagnosed as on the autism spectrum. So at this point we were asking ourselves, who would want to care for these children? Who could love them, who will be strong enough mentally and physically to take this on? I remember being in the courtyard outside of Columbia Presbyterian Hospital in NY calling my Mom in Florida after the Pediatric Endocrinologist called me to give me some news on Jason. The news was very difficult and my mom started to cry. It was very tough on her. She was far away and wanted to help but didn’t know how. I remember feeling like a soldier, time to lock and load, no time to slow down.
I spent hours on the internet, your friend and enemy during these challenges. What you come away with is, who will do these things for my kid if I’m not here? Interestingly enough, Earl and I were more worried about the care for Bryan at that time because for Jason everything was spelled out and easy to follow. There was protocol, treatment, a plan. For Bryan, which still holds true today, it’s a goddamn crap shoot. There is no set plan for autism, each kid is so different and every day there is some new treatment or bullshit on the news. We are fortunate to have lots of family that are willing to help with our kids and will take them in the event of a tragedy. At this point, if Jason could drive, he could handle Bryan!
However, the angst this represents for parents, especially my dear friends, is not lost on me.
I feel a little bit like a leaky tire right now. I put Jason to bed. The kid is my mini me. He reads me and says, “mommy, come give me some sugar”. Damn that kid is good. Time to tuck away the sorrow.

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8 thoughts on “Resistance is Futile

  1. Jane, every time I read your blog I am humbled and heartened by your honesty and clarity. Thank you so much for writing.

  2. I am impressed that you only have a twice a year pity party- Most women I know have at least 4-5. You are very strong and having a pity party is actually what is keeping you sane and a good mom. If you never allow yourself to deal w/ your emotions, you can’t possibly be the best person you can be. As long as the party doesn’t last tto long, you are doing great!

  3. I admire you for being able to put your finger on what triggers the dark side. For me, it’s more like a delayed reaction. There will be several sad/uncomfortable events leading up to the “perfect storm”. But, you know that every time you ride that wave, you come out stronger. So now that you have put fingers to keyboard, rest assured the worst of this one is over. We’re with you, my friend 🙂

    • Funny that you say that Betsy, not sure if I know the triggers, I think it’s more of a pile up!! All I know is I am so glad I have a wonderful friend like you to be with me for the ups and the downs.By the way that photo of AJ and Rylan is the most wonderful thing I’ve seen in a long time. Love ya.

  4. As a fellow mom with a child on the spectrum, I completely understand your feelings of, “am I responsible for my child developing autism”. I thought I would share my thought with you to maybe offer some comfort. Before I begin I want to remind you I am in no way an expert and take this for what it is worth, and that isn’t much. Like your son, my son seemed to be progressing well with his milestones until his first birthday and the time of his immunizations. At that point he did not regress but nor did he progress. Everything just remained status quo. I feel he was predisposed to develop autism based on family history and genetics. I think the immunizations brought his autism to the forefront more quickly. The sheer number for a little tiny body is an awful to deal with. Hind sight being 20/20, I would have spread the vaccinations out yet I don’t feel the outcome would be very different. I would much rather have a child with autism than lose a child to a preventable disease. My very best to you,your sons, and husband. Keep up the good work and cut yourself some slack. We all do what we feel is the best thing for our kids. Never doubt yourself.
    ~ Karen

    • Karen, thanks for your support. From what I can tell just in what you have written, you are far from an ordinary Mom. Just reaching out to another Mom to offer your support shows great compassion. Thanks for doing that, it never gets old.
      Have a great day.
      Jane

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