Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, June 06, 2011

Open Letter to the Halo

Dear Halo,

How difficult it is to love and hate you all at once. how I hate what you've done to my child, how uncomfortable you've made him, the joy you have taken away from him. His ability to be a boy and enjoy his first summer in our family...gone. His body is sadly lacking in the bruises ands scrapes that come with being a boy.

How I loathe seeing you each morning Halo. Every morning as I sit Axel down to breakfast I'm reminded that there are pins to clean. Pins that are screwed into my child's skull, that today are infected and make him cry with each of the 50+ q-tips I will touch to them, only to repeat the process again before bed. I hate that you have brought my child pain and discomfort.

Halo, you have come to rule our lives. You have limited the fun the entire family can have. Being outside in 80+ degrees is supposed to be FUN. A time to splash in the sprinkler, or go to the beach. We'll be having none of that this year, thanks to you Halo. Motor cycle rides just aren't the same either, knowing we've had to leave one child behind. Ok, so he doesn't know what he's missing yet. Still YOU SUCK halo!

And yet, because of you, oh Halo, our boy will go on to live a rich and happy life. We won't have to jump every time he trips or stumbles. Next year, he'll be able to get bruised shins just like every other boy, all because of you.

So Halo, no matter how much I hate you and detest your presence in our lives, I will try to remember that it's because of you Axel will get to be a boy and experience everything there is in life.

Loving and hating  you,


Kathie Brinkman said...

well said. I loved the suggestion on the other post about decorating the halo with xmas lights or magnetic poetry. Hilarious. With the lights he & Angela could pretend he's a robot--"Danger, danger, Will Robinson."

Cindy said...

I can't imagine how un-fun halo life must be, but Axel is so resilient, and you are so determined. I know you will get through this, and it will all be behind you before you know.

In the meantime, as an idea for something that a boy might like to do, the Bug Lady suggests a little back yard bug hunting and related nature activities and crafts.