Friday, August 3, 2012

Because I can't just post "Big day at Children's Hospital" on FB since I 'friended' my dogs' breeder

It's going to be a tough one today.

On many levels, but mainly because at 4:00 today Tom & I will be at Children's Hospital/Boston, meeting with the specialists at the Developmental Medicine Center to discuss their findings/results/opinions (I say 'opinions' because unfortunately there is no blood test or x-ray that tells you what is going on for sure for kids like M.)

My parents are coming later today to stay with the kids, which is another thing altogether. Family tries to understand, but this is one of those things that you really don't know...until you know. When I spoke to my mom other day about coming, she asked if we were going get pizza and ice cream & have a little party & watch a DVD of Jack's camp music performance & how they are going to give my kids some money so they can do something for Tom & my anniversary which happens to be Sunday (18 years) and on & on. And of course, I would be the one to provide all the set up/retrieval of food because that is just my role in the relationship. I was a little stunned, but not overly surprised. It goes with the territory of people not really getting it. Another example would be when a couple of days ago, my Dad asked whether we would all be going up to Stowe soon & talked about the fun things he & my mom did when they visited us there. He didn't mean to make me feel a little sad inside, but hello, M won't leave the house so 'what the eff are you talking about?' I told my mom "well, I am not sure how going to feel when we get home after the appointment in which M will be officially (more so than the arbitrary "not sure what's up" diagnosis of PDD-NOS that doctors give kids until they either strike out the autism diagnosis or specify what type it is in particular--classic Autism or Aspergers) diagnosed with Autism." I told her when we first talked about getting together some night this summer to do what she described, it was prior to getting these appointments & the spiral downward that we have been experiencing and um, can we just separate those two events. When I was trying to explain, she clearly wanted to get off the phone, she was tired, etc. And this is a woman who DOES try to get it & reads up on it. But they don't get it. Like when she says to me "Does he always have to have his way?" when I am referring to a meltdown regarding getting take-out, but that little piece was actually such a small footnote in the actual shitty-ness of the story of my day & actually was a 'proud' moment for me and M because he did eventually calm down & did not get what he wanted. So her comment was a dagger of being misunderstood for me. A feeling of exhaustion, a feeling of I really have no one other than Tom to talk about this stuff. It is so isolating.

Unfortunately I do not have time to write more. I have not really said much of anything of what has been going on here for the last year since my last post. It is so pervasive to our existence that it is kind of like a whole lot of nothing and a whole lot of stuff goes on. As I try to explain to my mom when she asks whether today is good day, well, it depends on the moment. It is moment to moment.

And add 2 dogs to the mix--the 1 1/2 year old one & the itty bitty puppy. I love them & don't regret having them, but it does add a little bit more crazy to the house. But believe it or not, it has added so much good as well.

Oh while I am complaining, I have a bad headache, changed my Pill prescription & for some reason have not gotten my period so I just feel like on the verge of getting it--you know that good feeling of bloaty-ness and all, the weather is disgustingly humid, I have a massive "courtney love" style bruise on my freaking lower leg, Tom can't scoot out of work early so I have to meet him at his work & then drive into the appointment (meaning I have to deal with this house, dogs, parents, etc on my own & the mad rush to get myself ready, prep paperwork, make sure everyone here is all set).

Well, I have got to get moving.


  1. Oh Julie, Good luck today! I'll be thinking of you guys.

    Who knows? Maybe we'll move somewhere out by you and we can sit around and just understand how fucking crazy life is together.

  2. Mrs F, PLEASE DO move near me!!! I have not even been able to ask or comment about all of your stuff. I started to watch one of the freaking videos and then got called away to who knows what. Crazy, crazy life. I am going to try to be more connected here (in blogland). I feel a little like an idiot/loser for saying this, but you, Kiki, Robin, Katie & Heather are like my best friends/supporters in all of this stuff. I only say idiot/loser because I feel like I should have a circle of friends/family here to depend on, etc., but it is not quite like that.

    Alright, I have GOT to run.

  3. Feeling for you Julie. And you're right, no one gets it until they get it, and some people will never get it. My parents still think it must be my parenting style that has produced such an off-spring, and definitely don't get how we actually, factually, have to make allowances for our child in our life and our choices. It's very frustrating and a general bummer. Will be thinking of you today.

    Oh, and I'll try not to be offended that I didn't make your list of supportive friends... Whatever, girl. :-)

  4. OH MY GOD, Gigs!!!! As I was typing out the names, I was like that's not all, that's not all, but I was so fried at that point. Jeez, if there is anyone who truly understands, it's you, honey. You are living it, too!! Please don't feel offended. I feel like a shit!! I love you…you are always so supportive, checking in with me and all. I feel awful. Sorry!!!!!

    More on today to come. But it will surely not be today as I am exhausted and just got back in 20 minutes ago. My parents really came through today in the end. And the awesome thing is that they went home when we got home. Originally they were going to stay over and hang out. They realized that we were having a big day and we may need to be here by ourselves. Of course, god love my mother, she asked me for any tips for being with M, like if they should use less words in sentences & stuff. I was like "mom, he is the same kid as a week ago."

    Okay, I need to go and eat a pint of ice cream and drink a glass of wine.

    Wow, I feel like an ass that I did not put your name down, Gigs.

  5. Julie! It's all good—I was just messing around. If I didn't think you meant to put me on that list I would not have made that comment :) Please DO NOT think twice about this. Glad you survived your day and had some down time at home after. Hoping this "official" diagnosis will help all of you in the long run. My heart is with you guys. Love you too!!

  6. Julie,
    so happy to hear that your parents came through for you... that sounded like a lot of added stress and it's nice that it didn't come to fruition. This: "like if they should use less words in sentences & stuff" made me laugh out loud.

    Off to go pour Hot Tamales down my gullet... Oh, stress eating you are a real friend in my time of need.

  7. Julie!! I'm so sorry it has been tough. You know I get it. I completely understand about people not "getting it." And especially feeling like the online group are you close friends. I feel the same way. It's nice to have people to share this stuff with who don't judge, and that's REALLY hard to find in real life. I don't tell most of my real life friends about Kent because in my experience, when I do, they treat him differently. (like you told your Mom, he's the same kid!! Don't treat him differently because you have a new piece of information. The information doesn't change who he is.)

    I hope you got some good info at your appointment and hopefully some treatment options that work. When you have time, let us know how it went. SO glad your parents came through!!!

  8. Oh Julie, I'm sorry it's taken me a few days to get over here and comment. This sounds heartbreakingly isolating, and I know it's not new for you. I'm so sorry. It sounds so hard. My mom didn't get the whole fertility struggle for us. I remember when I was diagnosed she was there with me and just kept proclaiming, WELL THIS IS FIXABLE SO I AM JUST ELATED. I almost hyperventilated in the bathroom thinking there was absolutely no space for me to just take in the diagnosis and process what it meant, next steps, etc. It was awful. Even in the past few months, I'd mention how hard it was to not be pregnant month after month, and she'd change the subject. I think for her anyway, it was like her role is X and she was unable to have any perspective on my situation, therefore she would only stick to her role. Odd for sure.

    Anyway. I'm thinking about you. Keep us posted, and let us know how we can help. Big hugs.