When you get married you promise to be with your spouse from this day forward for the rest of your lives. David and I have come to the realization that since Bridget’s birth she will be with us from that day forward. I know, you always have your children with you. When you have a child with a disability that statement has a different connotation.
The weird part is, when Bridget was smaller and at her most fragile she was actually more portable. As long as she was in a carrier, she was content. Now that she is older, she is less likely to pass as a precocious toddler. Now when I carry her and someone asks her age I receive that look. The look that you are a bad parent babying your first grader. Until you talk with Bridget, unless you know her, you would not immediately know she was not your typical seven year-old.
With her sister, we think to ourselves only X more years and then she is no longer going to be tucked in at night. Only so many more years before we have to transport to and from events. Pretty soon she will be working (I am a proponent of teenage labor) and earning her own money. Not too far into the future she will be looking at college, military or career choices.
Bridget won’t be doing any of those milestones. She will never drive, she may never add and while she may have a job some day it will not be enough to provide her a living wage. Bridget will not be going to college, heck trying to get her into summer camp is a challenge.
Once her sister leaves our home to live her life (as she should), we may not even be able to go out to dinner without Bridget. That’s okay, that is the life we signed up for when we decided to take whatever measures possible to see that Bridget lived and lived well. Yet sometimes I admit the thought of never being able to be alone with my husband (or five minutes to myself) gets overwhelming.
I cannot envision a time in her life that Bridget will not need me for every aspect of her life. Then I realized it was a me, not her, situation.
I was talking with Bridget’s special education teacher about setting goals. I am nervous about teaching her life skills. What should I ask them to concentrate on? Going the bathroom independently? Turns out she does at school but not at home. Putting on her shoes? Brilliant at therapy, refuses to do at home. Carry her own backpack? At school yes, into school you will find it on her father’s shoulder.
We are entering IEP season and I admit to being nervous. Do we focus on academics, do we concentrate on life skills? Do I have any idea of what I am doing? Nope. I am flying without a net. I am trying to keep my child safe and productive.
Wish me luck