As I made abundantly clear, yesterday wasn’t one of those days where I was taking life in stride. I think that as far as the big picture goes, however, I have handled the barrage of life changes pretty well.

Sometimes I worry about my husband a little. He just goes along, loving our son, and never talking about anything. You can say what you want about me–I don’t hold things in for long. After Charlie’s birth I was numb; then I was depressed. Sometimes I would hold him in my arms and the tears would flow over both of us. Some nights I would scream into my pillow. How could this have happened to my beautiful child? I ached with his easy, sweet manner. He is so perfect–how could he be damaged? I remember holding him once during an EEG, singing him to sleep, and just wishing that I could be a normal mother holding her normal baby in a dark room. I hated that our life together was one of machines, and beeps (oh, the freakin’ beeps), and tubes and wires.

I don’t let myself wallow too much these days. There’s no point. Make no mistake, I am an ace at feeling sorry for myself. I have had relationships end, and have felt as if my life were ending. I’ve had people slight me at work and I’ve talked about it for months. I can hold a grudge for years.

The Charlie thing is so big, though. So very, very big. It has opened me up and stretched me out; it has enabled me to see the beauty in the tiniest things. If you read enough of the writings of disabled parents, then one thing rings true–we appreciate the little things. Nothing is taken for granted–not a bite of food, a smile, a glance, a step, a breath, or a heartbeat. These are not guaranteed. There are times when I’ll see some long-legged teen ambling through a parking lot and I think to myself, “her parents take it for granted that she can walk.”

Maybe they do and maybe they don’t. I don’t know their story. Maybe they were infertile for years before the birth of their miracle girl. Maybe she’s already lost a parent or a sibling. Maybe I need to stop worrying about what everyone else has.

My husband is still suffering with the idea of normal. He’s angry or sad or something about people who have “normal” births. He’s still sorting it out and that’s OK. I think I’m a little further along. These days I question the concept of normal–what is it and who do we think has it?

I feel so very good about what God has given me. I stay home everyday; I snuggle with my baby every morning. I have a big front porch that I can sit on and enjoy the breezes. I could walk to church (if I got up in time). I eat a lot of really good food. My life may not be perfect, but I could suffer a whole lot more. I don’t’ even have the right to feel sorry for myself–this is Charlie’s battle, not mine. I am his cheerleader–I need to get out the pompoms and stop with the pity party.

There is so much good in this place–in this world. I have so very much to be grateful for.

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  1. Elizabeth says:

    “These days I question the concept of normal–what is it and who do we think has it?”

    I think all our ideas about “normal” are skewed. We each have heartaches, secrets, failures, blessings and luck. I think we become better people in how we manage each of those things. Some more than others. *hugs*

  2. None of us are “normal.” Stay strong!

  3. Jacolyn says:

    Beautifully said. I am right there with you.

  4. blairspage says:

    Katy… what a great entry! You are so right… it could be so much worse. Like I told my other friend that has an Omphalocele baby that is NOT doing well…God made you Charlie’s Mom for a reason. He will NOT give you more than you can handle! You are a strong person… just hug and hold that baby tight everyday!

    Love ya – Tiff

  5. Barbara says:

    Great entry. A lot of the things you said ring true with me too. Having a child that has to struggle for things that come so easily for others really opens you up. I think I’m going to have calluses on my hands from clapping so hard every time Bennett does something. I get tears in my eyes when he manages to pick up and eat cheerios with his right hand.

    It’s also so true that we never know what someone else has gone through. We had to bring Bennett to the hospital a couple weeks ago and a young mother was waiting on the bed next to us with her son. She was talking to one of the nurses about a small rash he had. I quickly jumped to judgement and thought to myself “it must be nice just to have a little rash to worry about.” Well, the conversation continued and she started to talk about her other son – it turns out he started his struggle with cancer at 18 months – this left him blind. Now he is about 5 and his cancer has returned. I left the hospital that night feeling so grateful for every thing I had.

    Sorry for the long comment, but your post really resonated with me.

  6. I’m a bit behind on my reading, so I’m just catching up with you. This post is just beautiful and you hit the nail right on the head on so many levels.

    Beautifully said and an eye opener for me. Thanks for sharing with us.

    Happy Monday to you and Charlie!

  7. Antonella says:

    I think men deal with things differently, they try to e strong and hold everything inside for the most part….at least I know that’s how Mag deals with things.

    You and Charlie are so strong and I know that you will be the best cheerleader ever!

    And, I don’t think anyone’s normal.
    Sending you lots of ((HUGS))

  8. Nadine Hightower says:

    What a roller coaster ride life is!?!

    I think you handle this very well. I don’t think Charlie would be as far as he is and making as many strides as he does if you and the Hub wasn’t doing just what you are…being loving devoted parents.
    You can explode every once in a while…or hide under the bed…or scream into your pillow…But what defines you best is how you get up and go on. Get back on that roller coaster, the rides not over yet.


    PS: Go to the “dashboard” and go to the settings to look over all the options. One is to have comments emailed to an account. It really helps!! People can comment on a year old blog entry and you know it!

  9. Seeking Serenity says:

    Your strength amazes and humbles me. Thank you for sharing your feelings.