On Sunday, my Mom and I, along with my middle daughter and niece, rode up to Dobson, NC, to have a late lunch and practice some photography. Cody Creek has a very nice event facility for weddings and such. It was a nice quiet afternoon taking some pictures on the property, even if the weather was not the most cooperative.
So, I was able to get up this morning and have Morgan join me to see the lunar eclipse. I wasn’t sure that I would be able to see it when I first got up because of cloud cover, but after 15-20 minutes, it cleared up enough to see the start. Morgan and I talked about how the eclipse works and why the shadow happens. I had fun trying to teach her how it happens.
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.
Yesterday, I was fortunate to be able to visit with my daughter’s kindergarten class. Haynes-Inman Education Center is a school for children with various special needs. The teachers there provide various therapies to help these children overcome some of their disabilities.
On Monday, they were having “Leaf Day” in her classroom. The teacher brings in leaves for the kids to play in. While this might sound trivial to some, these kids are not usually able to go outside and play in the leaves like typical kids do. Some kids have sensory issues where they are unable to handle a new feeling, for example, even the feeling of a dry leaf being crumbled in their hands. While this is not necessarily the case of this day, these types of interactions help these kids to better relate to their surroundings and this is just one example of how they help these kids to learn and explore their surroundings.
As I mentioned earlier, my daughter is one of the students seen in these pictures. Raising a child with special needs can be quite demanding. Before the kids were introduced to the leaves, I was able to sit and observe the daily happenings in the classroom; things I am not normally able to observe. I saw as the staff move swiftly from one child to another – one child needing medication at a specific time, another trying to transition after mom left, still another needing to eat breakfast. The entire time seeming to have an unending amount of patience. Even though it doesn’t show, I know it is hard to do…I have three children at home.
I think that is what makes this place, and others like it, so special and also why my daughter loves so much to go there. The teachers, assistants, and therapists all care deeply about the success of these children – even if that success is simply being able to choose between two objects on any given day or watching a child take his or her first steps on their own after years of therapy.
I hope you enjoy seeing the pictures of these children as much as I enjoyed spending the time to take them, and as much as they enjoyed experiencing something new.
Tonight, Morgan (our 3-year-old) and Emmelyn (our 1-year-old) were watching mommy unpack a package that came in the mail. Emmelyn was beginning to get irritated that she could not play with the new items that arrived…they were some clothes. Morgan was standing by watching what mommy was doing and apparently stepped a little close to Emmelyn. Emmelyn, seated, screamed and pushed at Morgan, who was standing to get her away because apparently, she was too close.
Ok, so tonight’s dinner was going like normal. The conversation goes something like this:
Emmelyn: Starts fussing.
Morgan: “Emmelyn! We don’t need any of that mess.”
Daddy: “Morgan! We don’t need any of that mess.”
Morgan (to Daddy): “Don’t worry about what I am doing and eat your food.”
Now, at this point, Mommy is trying desperately to stifle laughter. Christy, Savannah’s nurse, is also trying to keep from breaking up over the comment. I muster all the authority I can:
(To Morgan): “You don’t ever talk to me like that.”
I am trying my best to keep from looking at Mommy or Christy so as to keep my composure. Unfortunately, Mommy let a chuckle slip, which caused me to lose all credibility. I couldn’t help it…I laughed.