Wednesday, January 28, 2009

The following is a comment left on this post over at the McCarthy Micro Preemie Blog. I'm fairly certain that anyone familiar with this blog will understand why I'm re-posting it.

....commented by 23wktwinsmommy...
I'm posting again because I can't sleep...this has been bothering me since I read some of these comments last night. I have tossed and turned thinking about how unfair commenters have ben to Liz. How people can't understand that a label will help our children.
A label could help ensure our children received Medicare to cover the costs of therapies, medication, Dr's appointments, equipment, etc. It could help teachers understand that behavioral and learning difficulties so common with our micro preemies have a CAUSE and weren't caused by poor parenting. It could help well-meaning family members and friends that kindly place blame on us that it's a syndrome, not a result of what we are or aren't doing. It could mean so much to have our concerns acknowledged by the medical community and society at large. There is NO shame in having a diagnosis for our children. It doesn't mean we love them less because we seek to expand the understanding of others.
And I also want it to be ok for parents to scream PREMATURITY SUCKS!!! That it has robbed our children, and us, of a whole hell of a lot. We should be able to vent and say these things without having to follow up by saying we are thankful for our children, we know it could be worse, we love them regardless. This is all true and we have said it before. I find myself adding this disclaimer so that my family/friends without micro preemies know that I'm ok, that the burden isn't too great when I open up about my fears and concerns about the kid's health and development. It should be clear we love our children, and it's ok to be worried, upset, and frustrated. In fact, it's normal. We love our children, value them for who they are, and all of that, but do we need to type it every time we explain a challenge? Or is it obvious from reading and clear simply by the fact that we are researching, connecting, and advocating for our micro preemies?
Some people choose to include biblical quotes and thank God in every post, that's fine, I enjoy reading many blogs like that. But everyone writes differently, and expresses themselves differently...and that's ok. That's part of what makes us human.
You can hate the fact that your child struggles to breathe when sick, or struggles with eating, or with social skills, or with talking, walking, understanding, etc..I hate it. I hate it for my kids and all our preemies friends. I wish all were healthy...but wishing will not change the reality. Sitting back and being thankful is part of our journey, but getting up and fighting is part of it too. We live in a world that isn't always accepting; we see prejudice, racism, and hate too often. It should be normal to worry about how our children will be treated, and it's not enough that our family and friends love and accept them. Society should, teachers should, their peers should. And we owe it to our kids to do what we can to help people understand. Because through understanding comes acceptance, and that's what Liz and so many of us want for our children.
I hope Liz continues to honestly express herself and turn to those who understand. I hope readers recognize who Liz is, a caring parent hungry to make the world better for her daughter..I'm fighting right along side you Liz.

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