Something I wrote....

I have a great friend named Janie, she is a teacher and works with special ed students and parents also. She asked me to write something about what it's like to be a special needs parent. She already had a copy of the "Welcome To Holland" poem WHICH BY THE WAY IS SO TRUE and I suggest if you havent read it to google it.

This is what I wrote for Janie, I wrote it all at once without stopping and then read it a few days later and was amazed at how well I got all my feeings out so quickly.

Here it is:

When you are told you have a "special" child it is literally like a punch to the stomach. You see all these dreams and plans for your child disapear all in an instant and you are left with total uncertainty. As a parent all sense of control is lost. You are no longer "normal". Your family is different. You feel isolated. You struggle to maintain as much normalcy as possible. There are constant reminders everywhere.....seeing a child the same age as yours is enough to bring you to your knees. You can't help but realize your child should be doing the same things that child is doing. The farther away your child is from that "normal" the more this affects you. What's ironic is that you suddenly feel a "connection" to children in wheelchairs, with trachs, g tubes and other things that previously would have scared the heck out of you. You look in their parents eyes and you know they "know" and there is a bond there...without even speaking a word.
The one thing you desire the most is just to be treated as a normal family. To you this is normal now. You come to HATE the "I feel sorry for you" look. Some questions and comments you are asked by complete strangers can leave you in tears, some will leave you speechless. You don't mind people being interested in your child BUT any parents would be hurt and offended by a question like "What's wrong with him/her"? Instead of starting off a coversation with something so negative, it's nice to hear "Wow what a cutie!" or "That's a cool shirt" or even "what beautiful eyes". Sometimes even if you are approached in the proper way by a caring person, it's just too much, you don't want to give details, you have had a bad day BUT feel obligated to explain your child to this stranger whom you most likely will never see again...just to avoid being rude. You find yourself coming up with clever answers to questions that have left you speechless so you won't be taken off guard next time. You desparately want everyone to see the happiness your child does bring you, the amazing spirit your child has and what a fighter your child is forced to be, instead most people just look at the disability. Then you feel compelled to educate everyone.
All in all I would say that we want to be treated normally, like anyone else. To us THIS IS normal and we have adjusted to this new life and new way of thinking.. It's when our child's differences are pointed out, scrutinized and picked apart that we are once again forced to think about what really is normal.

Who can really say?