Dark Places

Blogzilly left me a comment recently that got me thinking about how I cope with Charlie’s disability. . .
This blog is rarely a dark place.

I have a couple of reasons for that. First and foremost is because I feel a great responsibility to the parents who may come here after being told that their child has suffered a brain injury. I want parents to come here and see that a child with disabilities can be beautiful and magical and that your life doesn’t have to end because you’ve been given something you didn’t expect.
But there was a time before I felt as much hope as I do now. A time where fear just crushed me into a puddle of mush. In those early days, I would sometimes find an entry on some one’s blog that would scare me so much that I would just weep on the keyboard. Blindness, deafness, medical bills, uncontrollable seizures–it was all so scary. Charlie was so young there was just no way to know how bad his disabilities would be.
So I decided to see somebody. I went to a counselor and cried and snotted in her office for an hour. I used an entire box of tissue and half of a second one as I told the story of my son’s birth and subsequent brain damage. I told her that I missed my old life, that I was scared of my new one, and that I was SO angry with my doctor.
And she told me that she thought my feelings were normal and justified. She said that, in her opinion, I was dealing with the whole thing pretty well.

And she was right.

Every parent whose child has been injured has a right to grieve. They have a right to be scared. Whether it was malpractice or mother nature or just freakish bad luck, our children have been injured. Grief is normal. Fear of the unknown is normal. I believe that grief is cyclical and it will come and go from your life. Months may pass and one day it hits you again and you must deal with it all over again.

But and some point you have to make a choice. You have to decide to move on. I’m not saying forget–you can’t forget–but get on with the business of life.

We all carry scars: death, disease, addiction, war, abuse, poverty–any number of things can touch our lives when we least expect it. I also know that I have never, ever felt better dwelling on it. I may let myself roll around in it for a little while, but in the end I have to kick that crap to the curb or it will rule me; swallow me whole. I’ve never been good at moderation.

And so I celebrate what I do have: a happy child, a delicious dinner, a new pair of shoes; a really big diet coke, a country with fabulous health care, a shady front porch. When my thoughts get dark, I re-route them–focus on something else. Am I always happy? No, but I wasn’t before Charlie was born either. I’m just a regular person who copes with life the only way she knows how.

I thought there was no better picture for this post than this one. I’m trying to give Charlie a lesson about cooking and he’s giving me the stink eye–he did NOT care for it. Things are far from perfect, but probably pretty close to normal around here.

Next post I promise to get back to some of those awesome questions about education

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  1. I liked that explanation. And glad that I inspired a post from you. I far too often have dark feelings, and hope to one day graduate to where you are. You are an inspiration to a lot of folks.

  2. By telling Charlie's story and being real about feelings and emotions you are making a differance.

    You are showing life is not perfect but we can make it a happy life regardless of our bumps in the road.

  3. sitting on the mood swing at the playground says:

    What a great post.

  4. Thanks. I needed this post.

  5. Awesome post. Though it's hard to believe in the beginning, the happy days do come again.

  6. desperate housewife says:

    Thank you, Katy. I needed it too.

  7. Charlie is gorgeous, even when he's giving the stink-eye.

    Thanks for another great post — timely, as I bawled through an IEP meeting this week. Life isn't usually like that for me, even with loads of "issues" things are pretty level and often delightful here. But sometimes tears are the only appropriate response — you nailed it.

  8. Katy,
    I had always been an upbeat person until….and I still consider myself that, somewhat, but things are just not as vibrant sometimes. I think that the first few yrs were easier in a way and then as a neighbor of mine once said…"Time puts a hurtin' on your hindparts!" I am always inspired when I read your blog, though. I always feel refreshed!

  9. Candace–I'm glad to hear it! Maybe you need a little mommy vacay??? I know sometimes you can get worn down "in the trenches."

  10. Katy, I love this and needed to read this today.

    We are getting ready to move A to a new nursing facility. Meaning more travel to the east coast, and many more very raw emotions, and all that comes along with it for me.

    I am usually where you are most days, but when I am faced with this, it seems like that cloud drifts its way back over me. I know that it is only temporary and will pass.

    You have come so far and are an inspiration to many!

    God Bless!

  11. Loved this post. Nothing to add here… you said it perfectly.

  12. Omaha Mama says:

    It's great to just honor those feelings when they come, then you can move on from there. It will be an on-going process for your little guy's whole life. But one that will bless you and strengthen you in so many ways. There will be milestones that his peers hit that may rock you to your core, things you won't have thought would bother you until they do. But he will have his own milestones that you will celebrate and cheer. Make sure that you never feel guilty for the grief. It is so natural and means that you are absolutely accepting your child for the wonderful kid that he is. :0)
    It is a great post that you wrote here, dark or not.