Arthrogryposis

"When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child." -Sophia Loren




I've had several uncomfortable conversations about Libbie's differntability lately. One came quite unexpectedly at Whole foods and one came at Owen's piano recital at the beginning of summer. Both made me feel something I hadn't felt or let myself feel about her condition. One conversation was just rude,not intentionally, but still rude, and the other made me look at myself and really reflect on how I feel about Arthrogryposis. As I strolled the isles of Whole Foods, The Doll assisted me while I pushed her in a ginormous Nascar buggy. We read labels together and she picked out products that looked kid friendly. Libbie's left knee doesn't bend and appears different than most knees that do bend. I say this so you can get a visual of her in the buggy. Her right leg was bent so her foot was down in the cart and her left leg was sticking straight up on the steering wheel of the cart. I understand that this may have appeared strange and uncomfortable. Libbie is very flexible and she put herself in this position. She was comfortable and never fails to let me know if she isn't. I know I'm explaining myself when I really don't have to but I feel nervous about it so I feel I have to explain. I noticed a fellow shopper staring at us as we passed one another, first on the bulk grain isle then again on the wine isle and finally I guess she couldn't take it any longer when we met each other on the frozen food isle and asked... She asked how I could cram her in that tiny cart with her leg sticking straight up. As she came closer to inspect my poor parenting, she saw her knee and gasped and then shivered and winced like she was in some sort of pain. She said, "My God, what is wrong with her if you don't mind me asking." I calmly and gracefully as I could explained that nothing is wrong with her and that she has Arhtrogryposis which is a joint and muscle condition that affects all of her joints but her left knee most severely. I could feel Libbie listening and watching my expressions and the lady's expression. Back and forth. I hated it. I hated that I was having to explain to a stranger in the grocery store a medical condition that was really none of her business. I don't know why I felt this way. I'm used to people staring and commenting on Libbie's braces, but this felt different. She asked me when it would get better and assured me that it would, I think she felt bad for her initial reaction and then maybe she read my body language and could feel that I was ready to punch her in her face. (not literally but kind of...) I was sweating which I never do and certainly not on the frozen food isle. I answered her questions as best I could and we made our way down the isle. We passed her a few more times and each time she gave us the sympathy look. Oh how I hate that look. Libbie asked me, "Mamma, why do people want to talk about me all the time." I told her because she was so darn cute and special that she just attracted people and they want to know more about her. As I drove home I thought about the questions, and maybe a better scripted response I should come up with. I'm not uncomfortable with questions, and I know people are curious. I am a curious person and Lambert tells me all the time to stop staring at people. I think what makes me uncomfortable is that I'm usually approached while Libbie is present. She is smart and she knows what were talking about. I feel like it's a violation to her privacy. It's her condition to tell if she wants to tell. Then I think maybe it's good for her to see my response to people so that when she is approached at school or church she will know how best to respond. I'm not ashamed of her differentbility and I don't want her to be. I think it's better to talk to someone with differentabilities than to just stare. Most people I've encountered don't mind talking about themselves if you approach them with kindness and genuine compassion. I've learned this from my visits to Shriners. There a lots and lots of kids there that have had accidents and burns and they are okay talking about their conditions. It's a strange feeling that I haven't really dealt with since we've been home. I usually just roll with things and don't think deeply about them until something prompts me to think deeper. So I'm thinking deeper about how to respond and how to respond with respect to Libbie. That was the latter of the two awkward conversations. I've had all summer to stew on the first conversation I'm going to share next. I've laid in bed thinking about it. I find myself thinking about it when I'm driving and really I've thought about it pretty much all summer. We were at Owen's piano recital just at the start of summer. Owen's teacher is married to a pastor at a local church. She has quite a roster of piano students so each year the recital is held at their church. It's a lovely church with a huge alter and grand carpeted stairs leading up to the stage. All of the children walk up the stairs and take their seat at the grand piano to perform their recital pieces. After the recital the church is all a buzz with proud parents snapping pictures of their little Bachs and Beethovans. I was busy taking pictures and talking with other parents. Lambert was watching Libbie and Owen was running up and down the stairs with one of his best friends who also takes from Mrs. B. I didn't notice that Libbie was on the stairs with the boys. Remember, her left knee doesn't bend so stairs are not her friend. Also remember that she has no fear and really wants to make friends with stairs. It was inevitable that she was going to fall down the stairs. It was just a matter of time. They call to her. And she falls for them (literally) every time. I was talking with a lady from our church. She has three grown daughters one of whom I am friends with. This friend was born with a limb difference. I've heard stories about how great her mom was at encouraging her to try everything and she did. She is an amazing woman who can do anything. So I'm talking to the amazing mother of my friend with the limb difference when it happened. Libbie fell down the stairs. My back was to her, but I knew what it was and who it was as soon as I heard it. People panic when a 5 year old, or maybe any year old falls down stairs. I turned and sure enough it was my doll. I quickly ran over to her and so did Lambert. He scooped her up and she was fine. My heart was racing, but like I said this happens often, so I've gotten used to the falls and spills. I turned back to the amazing mother of my friend to finish our conversation, but before I knew it I said, "She thinks she can do anything and she can't." My amazing mom friend then said to me, "Well you never tell her she can't." It wasn't judgmental or rude. It was right on the money. I was stunned. So stunned I can't remember what I said next. I'm sure I said something, every thing was a blur after that. After the recital we went to dinner with some of Hoot's piano mates. I couldn't tell you what the conversation was. I saw lips moving and conversations happening, but I was stunned beyond words. It was a revelation. I have often felt like Marlin in the movie Finding Nemo. Marlin is Nemo's dad and he says to Nemo, "You think you can do these things Nemo, but you just can't!!" I can't count how many times I have said similar words to Libbie. I was embarrassed that she fell down the stairs. For two reasons, one because I wasn't watching her and felt responsible and two because she fell down the stairs. I hate that she falls. I hate it for her and I hate it for me. I was more humiliated at my response to the amazing mother of my friend. I hate that I tell my daughter she can't do certain things. I'm the over protector. I don't want her to get hurt. I hate making trips to the ER because she is fearless and has attempted once again something her body can't do. But then I'm proud that she has the spirit to try and try and try again when she's failed every time before. I wish that I had that drive and courage. Her courage is what has brought her so far and will help her achieve greatness. Maybe she will master stairs in her future. But until then it's my responsibility to encourage her and never tell her she can't. I know that she sees disappointment in my eyes when she falls. She has told me, "Mamma, I'm sorry I fell." The last thing I want for her to feel is responsible for my disappointment or that I am disappointed in her. I hate Arthrogryposis, there I said it. I hate it. Hate is a strong word and I don't let my kids say it, but it's true I hate it. But I love what I'm learning about me because of it.