Thursday, January 31, 2013

Dear parents of typical children......

You think we have all of these special excuses and that we get away with stuff. You think of school buses that go door to door, handicapped parking spots, government checks on the first of every month, free healthcare, therapists and doctors at our beck and call....and so much more.

Yeah we get a lot of perks...I'm the first to admit that. But believe me when I tell you I would give it all up for my son to look at me and say "Mommy I had a good day at at school". For him to go to the bathroom by himself at five years old. To get dressed in the morning by himself. To tell me what's going on in that amazing little brain of his...anything.

How would you like changing a five year old's diaper? Adult sized shit in the same diaper packaging. To clean up a pissed bedsheets at 2am? And to do it every goddamn day because it always happens....? To get looks in public like your child is some kind of deformed ugly being that shouldn't be brought out in daylight????? To pray to God every night for strength because you feel like any second, any moment in time could possibly be your breaking point??? To curse and damn and scream at the deity that you pray to because you just don't know how to handle anymore?

Tell me you think my life is somehow better than yours? That one small check every month makes up for the fact that my son can't even tell me what he did in school everyday. That he goes to therapy every week for his selective mutism and the fact that he holds his urine and bowel movements all day in school.....everyday....since he was 18 months old. That he takes five different medications a day? That he has at least four doctors appointments a month and three emergency room trips on top of those?

You tell your child to shut up, I pray for mine to speak. You tell your child they won't get desert if they don't eat dinner, dinner is thrown on the floor and forgotten about more days than I can count. You tell your kid to have a good day at school, I put a very grumpy child on a early school bus for a long ride. You go for checkups once a year, the emergency room staff knows Seth by name.

I used to say I wouldn't give up Down Syndrome if it meant I would give up who Seth was..... now I'm severely reconsidering that. I love my son so much...I love him more than anything else in this world. I'm just one tired and hurt mom and it's one tough, tough job. So yeah, today and much of lately I do feel like if there were a cure for Down Syndrome I would give it to Seth. Because more than anything, Seth deserves normal, he deserves a good life. God knows I'm trying but it's never enough, I'm never good enough.

I want to be good enough.

3 comments:

  1. Hugs to you! I'm a year behind you (with a 3 year old with ds), and I know it's not easy. I'm sorry that people are making snarky comments about you having "special excuses" and extra help. That is just so wrong. )-:

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  2. You're a good mom ! And i know what you mean although I love my daughter more than anything in the world I would take ds away because I know I can't fix everyone else's perceptions and I hate to think about how others judge her from first glance. She's 3. I feel your pain and I have followed your blog you are beautiful and stronger than you give yourself credit for .

    Sara

    Bbc friend

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  3. It sounds like you are going through a rough patch. Writing is such an awesome therapy for us. I understand what you are saying though, I love my son too but if I could take away Ds, I would. Hugs to you and know that there is a whole community here to support you, give you advice or just to tell you I understand.

    And honestly no one is perfect though they may appear that way online. I too know I'll never be good enough but I'm doing my best.

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