Thank you Bridget!

There are times that I read a blog post written by a friend and I am just touched in a way that I just do not have words to describe. This post by a fellow Rett Syndrome mommy, Bridget MacDonald is one of those posts. Thank you Bridget for putting into words how my heart feels every day. I love ya girl!

Monday, August 1, 2011
Split Personality
Not many people realize this but I have a split personality. At times I am a wife and mother of 3, other times I am a 6 1/2 year old little girl. Living a double life is difficult, exhausting and often times just plain overwhelming. The constant back and forth of each can be confusing to keep up with but it's a life I have been given and must keep up with, my daughter needs me.
There are many people out there like me. They are easy to spot, they are the moms with a child in a wheelchair at the park that picks them up, struggles to carry them up the ladder and then slides down the slide - because they deserve to play. It's the mom who is in the grocery store showing their non-verbal child 2 cereal boxes so they can make their own choice for breakfast - because everyone deserves to have a choice. It's the mom who wasn't able to drop her child off at a birthday party, she had to stay, but smiles as she feeds her daughter cake and helps her daughter to carry a gift to the birthday girl - because she deserves to be included. The mom who takes her daughter to church and pulls her out of her chair so she can help her dance, then grabs both of her hands so she can clap - because she deserves the right to praise. It's the mom who invites other children over because her child can't pick up a phone, or dial, or speak - because everyone deserves a friend. It's the mom who is in the movie theater reaching over to feed her child popcorn because no movie is complete without popcorn along with it. It's the mom who pulls her child up to her feet at a school assembly because all the other kids are standing. The mom who translates slurred talk or special looks to others because their child deserves to be heard. The mom who is helping her child walk, or run, or jump or even sit because she deserves to experience what all the other kids are. She's the mom that is happily explaining to a group of children why her child wears arm braces or travels in a wheelchair, or has a pacifier or can't speak because her child deserves to be understood and accepted - (even though she really feels like grabbing her child and running, crying and hiding until all of the questions go away.)
Us, "split personalities", aren't on Jerry Springer because we don't lead exciting or flamboyant lives. we just spend our days putting ourselves in our children's shoes and trying to think, act and do what our kids aren't able to. We are the ones that are watching other kids to see what they play with, how they talk, dress, and wear their hair, so we can catch a glimpse of what our own child might like, do, say and look like if they were able to voice their opinions. It's not easy to lead a double life. You must keep a smile on your face at all times because there's no telling when you have to change into a 61/2 year old again (and we all know 6 1/2 year olds are always smiling).
Most of the time our evenings leave us exhausted, we change back into a parent and have to administer meds, hook up vents and tube feedings, snuggle, bath, dress, read stories and tuck in. Then we wait, at this point we aren't sure what we are, caught between the 2 personalities. At times we can be the mother that checks in on our kiddos, prays over them and heads to work or to sleep. Other times we need to turn into a 6 1/2 year old girl and play, watch TV, or read until our child can settle to sleep. When morning comes we wake knowing that we need to fulfill the lives of 2 different people again and that we only have 24 hours to accomplish that.

Bridget and Annie