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No rainbows today

(I originally posted this on my other blog, but it fits well here also)

Todays post is going to be a bit different than my usual, so if you are looking for sunshine and rainbows and bunnies…..this isn’t the post for you. Go back and click one of the others, they may bring a smile to your face.

Still here? Well, grab a mocha and sit a spell. Today may ramble a bit.

I try very hard to always see the bright side of life. I usually have to. There is a very fine line in our home of holding it together. On one side of that line is Pollyanna blindness. An unwillingness to see what is really here. On the other side of that line is sadness and despair. A grief of what is not. I think I do a pretty damn good job of keeping my feet moving forward on the path right between the two. I understand that my life is not normal. Nor is it a life that anyone dreams of living. But it is my life and I have to make the best of it.

But you know what? Sometimes it really sucks.

 

There. I said it. I’m pulling on my big girl, fireproof undies, so flame away.

 

Do you have any idea how it feels to have to concentrate on your breathing so intently that you can sense the temperature difference between slowly breathing in the cool air and exhaling the warm air?  I have to. I feel each breath as it draws in, I try to smell any small changes in the wind. Maybe pick out a slight salt smell of the nearby water, or char smell of someones BBQ. I focus so intently that I almost enter a trance. I have to keep myself from losing it as Faith is screaming bloody murder in the car seat behind me. Kicking and throwing and flailing against the straps in her car seat for going on the 20th mile of what I had hoped would be a fun trip. Why? Because the milkshake we got her as a treat had a blue straw instead of a red.

I have not slept a full night in 8 years. Autism and sleep seem to be like oil and water. They just don’t coexist. I long for sleep. At times I start to cry for no other reason than I worry I will not ever get a full nights sleep again. Most parents of young children are fatigued. It is one of the uniting things of us as parents. We ask each other “Is she sleeping well?”. We grumble a bit, talk various strategies, and form a friendship. But you know it’s going to end. Kids start sleeping through the night eventually. Be they 1 or 3, it happens. I’m at the point where I realize now that Faith may never sleep through the night. Ever. And I am tired. If Faith does not sleep, that means I don’t sleep. She can not be left alone to watch TV, she needs supervision.

I am often bruised and sport black eyes. Faith gets violent when she melts down. She doesn’t mean to, and she apologizes afterwards. I truly think she is not in control during those times. So I hold her in an attempt to keep her from hurting herself. I end up getting hurt in the process. This is my life.

I am so sick of changing poopy diapers. It’s not her fault. She has almost no bowel (or bladder) control. I don’t get upset at her and I always try to make changing her as calm and happy of a time as possible. But I’m so tired of it. Cleaning up an almost 8 year old is NOTHING like changing the diapers of a baby. Nothing. And I know now that I may very well be changing her poopy diapers when she is 30, 40, 50.

I’m so tired of being judged. Please stop. Yes, I hear it. I’m not deaf. And it hurts. I have a child with multiple physical and mental disabilities. My life is different than yours. Telling me “When my kid did that, I told him no and put him time out.” is not helpful. Nor is “She just needs a spanking. Some discipline would straighten that right out.” Really? Physical punishment fixes brain damage? Gee, thanks for that info.

What that does is alienate me even further. And I am already living on the very edge of normal society. The things that most people do to cultivate and maintain friendships are hard for me. Coffee with a few true friends is the best I can manage, maybe once a month. And that is not enough. I miss talking to people. I miss the bonding of friends. I am desperately lonely at times. But friendship has to be with the understanding that I often can’t hold up my end of it. I can meet for lunch….if….Faith is not sick, or doesn’t have a doctors appointment, or get a call from the school that I have to go get her. So I have reached a point where I don’t hope for friendships anymore. Those that happen, I treasure. But I don’t have the energy anymore to seek out and cultivate new ones. When I have, I have felt like I have let that person down since I often have to cancel and can rarely talk on the phone. Then I feel guilty.

I miss physical touch. Faith absolutely freaks out if anyone touches me. And only me. I’ve learned that this is common in autism. I’m not sure I understand it, but it is there. So I avoid touching other people. Touch is very healing and I miss it.

I cry. And I grieve. I grieve for the child I had dreamt of when I was pregnant with her. The little girl who would slowly grow up, become a sullen teenager, go to collage, meet a boy, get married, have children of her own.

I cry. And I grieve for our other children. They get the short end of our time and our patience. I have missed so much of their childhoods. So many things we are unable to do that I had hoped to. Even some simple things. Things you may take for granted. I only made it to a couple of my oldest daughters band and color guard performances. Faith couldn’t handle the noise and crowds. I only made it to one of my oldest sons track meets. Vacations are a joke. That’s not going to happen for us. And I feel angry about that. Every time I see happy pictures of happy families at the Happiest Place on Earth, I get an empty hollow feeling inside. I wish with all my heart I could take my children to Disney. But Faith could only handle maybe 90 minutes of a crowded loud place like that at a time. It hurts to know I can’t give my children that.

I cry. And I grieve for myself. My personal ideas of where my life was headed, are shattered. The logical timeline of life is warped for us. We have a child who will need the level of care usually given to a 3 year old, for the rest of my life. The rest of my life. There will be no returning to work, sending the chicks out of the nest, retiring and enjoying grandchildren. And I have to figure out what comes after. I will die someday. We all do. And logic says Faith will live longer than I will. So not only will I take care of her for my lifetime, but I will have to figure out how to care for her afterwards as well.

(Moving my feet back to the fine line again…..thank you for listening)

{ 4 comments… add one }
  • Ashley February 4, 2012, 5:01 pm

    I wish I had some profound words of wisdom that could make today easier. All I’ve got is a bunch of long-distance hugs, an open door policy on venting, and a crazy desire to hop on a plane so I can take you out for drinks and chocolate.

    On a side note, we tried Disney once. The next person who called it the “happiest place on earth” was going to get punched in the neck.

  • Amy February 4, 2012, 6:06 pm

    I agree with Ashley above –
    You are doing an awesome job on taking care of you, Faith, your home and family. (which explains why you are working 170 hours a week). Please know you are loved and supported. Also you are in my prayers daily.

  • Patty Dobbs Gross February 5, 2012, 6:42 am

    Hi Allison,

    I believe that time is on your side here…as someone over half a century old (time sure flies when you’re early intervening!), looking back on my own life as a young mother raising a child with a challenge and well as peeking into yours by virtue of this post, it occurs to me that you are in the midst of adjusting the balance of Faith’s special needs in a way that can mesh with the remnants of your own cherished “prekid” life, respecting your husband’s and other kids’ needs as well: there are so many things yet to be discovered as well as created, it’s no wonder your feel overwhelmed. Faith as well as your husband and other kids that will help to get you up all your respective learning curves together and create your own best dynamic; the goal should always be to create the best life you can for yourselves, not others…

    Creating a positive family life for your crew really just means finding a balanced way to be together, where relaxation and fun can be had. I think including safe and reliable child care can be helpful as well as being certain the school piece is in place to take pressure off you on the educational tasks of raising Faith, and allow you to work with the social/emotional, which is more fun to do in any case! (And I do think care should be taken to factor all the kids’ need into the equation, as all kids’ needs are special.)

    It’s a tall order, naturally you know this!, but I think the way to frame this work is to first accept you life and then begin to refine it to make it work toward your own ideas for what you want for your family: build in things during the day meant to balance needs better, examine attitudes that may be causing unnecessary stress such as caring too much what the neighbors or Aunt Edna think, give up trying to be perfect even though you’d want your love for Faith to be as perfect as a airbrushed picture.

    And I do know that moods go up and down, not just during the days but months and years as well, but being able to be so communicative about your feelings is a good thing for you to shorten the depressive aspects of your current mood: I think it’s the repressing that pulls things into the negative zone where life gets distorted, not clarified…reaching out to others or simply nature is the only way to get support, which I hope your are receiving…

    Warm regards,
    Patty

    Patty Dobbs Gross
    Executive Director
    North Star Foundation
    http://www.NorthStarDogs.com
    northstarfoundation@charter.net
    We help children find their way.

  • Lindsay February 5, 2012, 9:59 am

    I read this post on your other blog and am glad you have brought it here. It is so well written and gave me an idea of the struggles you go through everyday. I know you absolutely love Faith and that is why you do what you do.

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