Jan 15 2013 in Caring for Children by Kristen
It’s been almost a year since I started telling you about my family. Here is our youngest, Carrie, and last child story:
Carrie is a beautiful 7- and 1/2-year old. She attends all day school as a first grader. She goes in and out of the “typical” classroom all day. She receives occupational therapy, speech therapy, physical therapy and cognitive therapy. Carrie is 100% tube fed. She uses a wheelchair and a Kid’s Walk walker. She has some sensory issues. She can communicate with gestures and sounds but doesn’t have words. She has internal gastrointestinal issues that can often bother her. She is not potty-trained but is so proud when she does use the potty.
Carrie’s underlying diagnosis is “mitochondrial disease.” Carrie’s mitochondria are “broken” and do not produce enough energy for her to have a “typical” functioning body. Consequently, Carrie has developmental delays, lack of speech and eating, and can barely sit up by herself and walks only in a walker. You can see more information about it here.
But Carrie is a happy girl, most of the time. She loves her family and loves going to school. She loves swimming and listening to music. Her prognosis is as good as it gets, meaning there is nothing stopping her at this time in her life. She may be developing slowly but so far, she is only moving in a forward motion. Yahoo! Her siblings, Hannah and Sam, absolutely adore her and, except for the long bouts of fussing/crying that occur here and there, they love helping Carrie be all she can be. We all do.
It is a lot of work caring for Carrie. I often don’t realize how taxing it really is because this is my life. This is the life that has fallen into my lap. I just deal with it day by day. It’s not until I step out of my life (i.e., go on a retreat or hang out with a friend who has typical kids) that I realize how extraordinary busy my life is as a mom of three including a child with special needs.
It is what it is and we are a really awesome family in my opinion. I give our family and especially Carrie my ALL and that’s just the way it is. It is a good “way.”