Wednesday, June 1, 2011

Beyond Sad

It's been coming on for a while, and now it has hit! I feel like death today. As our trip to Philadelphia is nearing, I am feeling more, and more sick. I am overwhelmed in a way I can't quite put my finger on.

I do know something that is subconsciously, or consciously creeping in...Kama was sick the entire month before we left last time. I said goodbye to my best friend just two short days before we left. I had the worst trip there ever. I have such bad memories.

I feel sick.

I feel sad.

I feel down.

I feel defeated.

I don't want to go. I don't want to leave Rainey. I don't want to spend a week consumed in all things brain injury. I don't want to face the stark reality of what is, and what will be. I don't want to be trained in a new, and improved program. I don't want to be run down physically, emotionally, mentally, and every other way possible. I don't want to experience long days full of high emotions.

My motivation is shot!! I have been pissing away much of what I am supposed to be doing. I lost a one inch thick report for The Institute.  How is that possible? How do you do that. We spent 2 days tearing this place from top to bottom looking for the damn thing. They graciously sent me a new one, and I have been putting it off (totally unlike me), so now it's late. My videotape for them is not even finished. I haven't sent in Aviana's hair samples for the heavy metals tests. I can't sleep. I have gone to bed at 5:30 am the past two nights. Thoughts just swirl around, and around! I feel like doing whatever it is I want to do, and not anything of what I am supposed to do! If I do what I am supposed to be doing, it is begrudgingly!!!

I want to stay home. I want to be with Rainey. I want to cover my ears from all of this reality and la la la la. I don't hear you!! I want to take that freakin' week off, and go on vacation. I want to chuck the program out the window. I want to have fun with our daughter. I want to do things we used to do. I want to go back. I want a healthy brained child. I am sick. I want to feel energized.

I want.

I want.

I want.

Oh can't have everything!


  1. This post makes me so sad for you. I wish you could have what you want. I know how much you want to go backward to a life that was great. I know how much you want to move forward to the life you used to have. Okay, well I don't know how much YOU want it because I don't know what it's like to have your situation. But I can imagine how much you want that.

    You said "oh well... you can't have everything!" but you aren't asking for everything, you are asking for what 99.9% of what we take for granted, healthy brained kids.

    The ability to get up and go.

    The ability to have a happy, carefree life.

    The ability to have "normal" problems.

    The ability to look forward to the future and not have a boulder of responsiblity weighing on you.

    The ability to not have to do all this WORK WORK WOK.

    I'm so sorry.

    I'm so sorry.

    I'm so sorry.

    It really SUCKS to have to deal with reality, day in, day out. Hour in, hour out. Minute by agonizing minute, with relief never there, just this huge slap of reality at all times.

    I love you and wish so badly you could have the life you DESERVE!!!

  2. Ditto everything Cameo said.

    I think you should tell the Institute how you're feeling.

    When Early Intervention started (back in the early 90's, I think), interventionists were hitting families over the head with all the things they thought the family needed to do for their very young children with disabilities. Finally, someone reminded these zealous folks that families are in this for the long haul and they needed permission to have a life outside their child. I want that for you...probably more than you want it for yourself, but I'm kinda bossy like that!


  3. When you say "you can't have everything" -- well, you DO know that the saying doesn't pertain to you, right? What you "want, want, want" are all normal things that you should have as a parent. And it's so not fair that you don't have that now, when you once did. It feels like an unfair life sentence, doesn't it? I know that feeling. I know what it feels like to live a life on a program that you hate, but all the while knowing that it's the best thing for your child, but at the same time wishing with all your might that you could just quit, and then feeling guilty that you want to quit when you know it's your child's therapy and she needs it, so to quit it almost feels as if you are quitting on her...and it just goes around and around, the feelings, just one vicious cycle of emotions. Ugh, I so remember. And you know what? Even though my child is now 18 and the program is way behind us now, I still have these feelings sometimes. Because my daughter is still not "normal" and has many issues, and always will, and I often wonder was there more we could have done? Would one more year on the program have made a difference? Did we quit too early? When we finally stopped the program and started ENJOYING our daughter, brain injury and all, doing normal things again, was when life started up again. You will have that day, too. It might not be your time yet, that's all. Even if Avi is never the old Avi again, you WILL have much joy in your life after all this program stuff is over. You can take her places, she can start school, she can be involved in things. It might seem impossible to envision that right now, but it will happen.

    I'm sorry you are dealing with all of this. Just know that it's perfectly normal and okay for you to feel like you want to escape it all.

  4. Please share your thoughts with IAHP...let them know how you feel. Let them tell you that it's ok to "chuck the program" for a little while. they say...if you can't do the program "with joy" then it's time to take care of yourself and then return to it. We took a LONG break and it was what we needed. It's ok Jen to take a break. Avi will gain just as much from your laughter and joy as she does from the program. This is my ONLY issue with need to live life too...not live and breath the program. I'm praying for you Jen...for peace in your heart and mind to trust what is best for you AND for Avi. xoxoxoxoxo

  5. Jen, I am so sorry you are feeling like this!!! I can't offer any personal words of wisdom about the Institutes or the program...but what I can offer is this. Can we take you guys to dinner, or have you over our place for a BBQ when you are here in Philly? We live right outside the city...and if you had the time, it could give you a normal "moment" in the "program" crap you are doing here. I know we don't know each other...but I live here in Philly and yoy are coming here. Tell me what I can do to help you if there is anything I can do. Please! I really mean it. Email me if you want, or facebook message me.
    Heather Peters

  6. Oh honey, I wish I could give you a big hug right now. I agree with what has been said before - you deserve time that is your own. Time to decompress and do something that you enjoy. That time is so vital to keeping yourself sane and happy.

    You have a LOT on your plate, and it is only natural to have those mini-meltdowns. I think that I would probably discuss my feelings with the Institute, too. Sometimes just getting it out helps a lot.

    If I can bring you anything...some homemade chicken soup, coffee, whatever...just let me know. Love you. -Jillian

  7. I want you to know you are stronger than sadness.

    I want you to know you are smarter than defeat.

    I want you to know you are happier than injury.

    I want you to know you are tougher than stopping.

    I want you to know you are bigger than running.