It has been a while since I have posted for the WordPress Photo Challenge. When I saw the subject earlier today, I started going through in my mind of where I might be able to find something to represent a container. I thought about going to a trucking terminal and taking a picture of trailers backed up to the dock, loading and unloading their freight. I thought about riding over towards the tank farm and trying to get some wide-angle shot of all of those. Nothing really worked in my head, so I came home…and found my daughter.
Meet Savannah. Now at first, you might wonder if I have lost my faculties, but I assure you, I have not. What you see in this picture is a container. This container holds my oldest daughter. Savannah.
Some of you who know Savannah, know that she was born with CHARGE Syndrome. A little later, as a side-effect of CHARGE, she had to have a trach and a colostomy. She doesn’t walk and she doesn’t talk, though before her trach she had an eight or so word vocabulary. While in the hospital, she suffered a brain injury and never regained her ability to speak.
The short (very abbreviated) story above is only part of the story. While Savannah has had a lot of difficulty in her development, she has also made a lot of great progress. She is able to pull up to stand. She loves to laugh. She knows that there are things she is not supposed to do and does it anyway just to see if she can get away with it. She can use limited sign language. She is strong.
But she has not become strong enough to break out of her container. This little body that holds my daughter. Savannah is stuck inside a body that will not let her communicate what she needs or help her get where she wants to go. I have two other daughters that have, to date, had a healthy life. I love being able to do things with them, but as much as I love to do things with them and watch them experience and learn new things, I miss being able to do the same with Savannah.
I was looking through some pictures on my computer today and noticed that I don’t have as many pictures of Savannah as I do of my other daughters. This hurt. It is also part of the life that we have. Savannah doesn’t know or care that I am trying to take pictures of her. She spends the majority of her time on the floor, and will roll out of frame before I can get a shot composed. Now some may say, “Use the rapid fire shutter,” or “Just take a picture however it turns out.” I could do that, but when she moves, I usually get a picture of her back, or worst case, an empty frame because she fell out of it at the last second. She does seem to have a pretty good sense of when I am about to press the shutter.
I want to, and would love to have, a more typical life with all my daughters, but Savannah is trapped inside that container. That container that is sealed up and will not let the words, “I love you,” or “I’m scared,” or “My stomach hurts,” come out.
At this point, you are probably saying, “Man, this guy sure is having a pretty large pity party here on the Internet; maybe he should get some help.” Maybe. I just had these thoughts about the photo challenge and needed to get this off my chest.
even with her in spite of her disabilities, is still a very happy little girl. She loves to snuggle up and will curl up and go to sleep. She will also laugh like nobody’s business with a laugh that will make anyone nearby also laugh…it is that contagious. She has a little stubborn streak (it’s really a big stubborn streak, but I am trying to be nice about it).
When we eat meals, she sits in a high chair next to the table. She likes to try to put her feet on the table beside her, which we don’t allow. Savannah will wait for me to turn my head and put her foot back on the table. When she sees me starting to turn around (I have already seen her foot out of the corner of my eye.) she pulls her foot back off the table. She knows she’s not supposed to.
She is in there; in that container.
I really want her to be able to break free of that container.
I love my Savannah.