Madelyn is so expressive. While she doesn't have a voice to share how she is feeling or what she wants, we have learned to read her expressions as best as we can. She has so much personality, and I desperately want to know what goes on inside her little mind on a daily basis. I love watching her and trying to determine her thoughts. Her eyes and her smile are a window into her soul. I often get caught up in a trance where it feels like I am watching a movie, perhaps in slow motion, where I just sit back and watch her explore the world around her and communicate without words. I stop talking and doing and before I know it, I'm just there gazing at her, feeling starstruck and profound love and wonder. Caught up in her world for a while. A simple, yet complicated world. Complicated because I can't imagine not having a voice or the use of my body the way that everyone around me does.
Then reality sets in. I need to be talking. Talking and describing in order for her to hear the words, so that she can learn to speak them. Learn what they mean and represent. I need to be doing. Modeling and showing her how to use her hands and her body so that she can learn to move them functionally. I need to be teaching and loving and all sorts of things that in most moments, my heart and mind worry that I am not providing enough for her. Worries and wonder that if I did this or that would she be further along? If I spent more time doing the right things with her, maybe she would be crawling or talking more, saying mama or dada purposefully, giving hugs or kisses, eating by mouth, etc. I'm always questioning my efforts yet reassuring myself that this life is hard and that I'm doing the best I can and that she will do things in her own time. Always trying to find the balance. When you're around someone all the time, you get used to them. You get used to their quirks, and their quirks become normal. Behaviors that you once thought were different or strange become the norm and eventually you stop noticing the differences. Until you're in a similar situation with someone else. You're reminded of the differences yet again. This is often my experience with Madelyn. I watch her and learn her. And the things she does (or doesn't do) become normal. Until I see other kids her age. Or people ask me questions. Or I see other kids younger than her doing far more than she can. For the most part, I've accepted her development for where it is at. But I can't predict how I will respond to noticing the differences. Sometimes it hits me a little harder. The reality is it makes ME so terribly sad when I try and put myself in her shoes and how she might feel seeing others be able to do something and to not be able to herself. But is SHE really sad because of this? And then there are the times where I see her for all that she really is. So pure and genuine. Smiling and silly or frustrated and stubborn. When we're playing and she laughs and giggles (which gratefully come more easily these days), when she's watching Sponge Bob and I can't get her attention because she's so caught up, when she's sleepy or crying or mad because doesn't want something, or when she smiles and lights up at the sight of the things she enjoys (books, the Ipad/tv, her favorite toys, her puppy dog, spinning around), it all feels so normal. She's just a kid. And she's only two. And so often I remind myself there are so many similarities between her and other kids her age. She's a kid who likes to have fun, be silly, laugh and snuggle. And she certainly doesn't seem to get caught up in what she can't do. Yet, as each day passes, I notice the similarities to other kids seem to lessen, perhaps slowly, but nevertheless. The other day was our first day really out of the house with the wheelchair when we took her to an appointment at the main hospital. We decided to take the wheelchair and wow does it sure get a lot of attention! Especially the lights! But I know it is more than the lights, it is the fact that she is so little in a wheelchair. It is different. How many 2 year olds do you know rolling around in wheelchairs? Though she seems to love the chair, it is hard to see her in it. I'm torn between thinking that she doesn't need it, we got it way too soon, we jumped the gun and thinking, she's 2 and she doesn't walk and she needs the support and she may not walk for a long time. I'm torn when I consider how she's just another kid and then I think that she may be a kid but she's a kid that can't run around and play and isn't able to play with toys like other kids do right now. I go back and forth between thinking, "she's not that sick" to thinking she qualifies for make-a-wish, and she has a genetic disorder and a feeding tube and a wheel chair. I go back and forth between thinking "we don't deserve those resources, there are so many kids/families who need it more" to "we need all the help we can get." I try to find the balance. Because mostly all of these thoughts are true to some degree. And the balance helps me find grace for myself and for our family; grace, which is necessary to moving forward and finding happiness. One of the things that I struggle with the most with Madelyn is how much to push her and knowing how to do so. I want to accept her for all that she is and help her grow to her full potential. I want to give her opportunities to be the best she can be. After seeing many specialists over the past couple years, all of the things we were to be working on quickly became overwhelming. I was overwhelmed with how to accomplish it all and discouraged when we would return to an appointment only to share that we didn't do what we were supposed to for whatever reason. For whatever reason usually was because we were exhausted, or we didn't know how, or we didn't have time, or we couldn't possibly get it all done even if we tried, etc. I felt guilty. I felt like a bad parent. I felt that they thought I was a bad parent and that I needed to justify my behaviors. I quickly realized that the specialists, no matter how good they are, aren't specialists in our daily lives. They don't live our lives with a kiddo who has complex needs far beyond their specialty. They don't live our lives with the stress of just being diagnosed, of being new parents, of trying to manage daily life including work, the bills, appointments, relationships, of trying to teach Madelyn how to do everything AND allow her to relax and just be free of the medical world for a while. They don't live with the emotions and the lack of knowledge of how to deal with not just ONE thing, but with EVERYTHING. And when I realized this, I found more grace for myself as a parent. I've been working on finding balance and not feeling guilty. The thing is, I want to be able to do everything, because doing everything gives us the best chance at happiness, right? But is that really true? I think if we do the best we can, and we love Madelyn well, then Madelyn has the same chance at happiness as everyone else. I think we make an assumption that able-bodied people are happier or somehow better. But one thing I know for certain is that Madelyn, despite her limitations, is HAPPY. I will challenge myself to help her be the best she can be while continuing to be happy. We will learn and grow through exploration of the world, but also through love and just being in the world. Perhaps, that means she doesn't talk or walk. I will challenge myself to trust that she can still be HAPPY despite the messages in the world or despite my own feelings about it. And I will challenge myself to let go of the idea that the same is better. Madelyn will make a difference in this world because of her differences. She will help people in more ways than I have in my entire life. I hope she already has. Because, Madelyn is living a life that doesn't play by the rules. A life that is messy, yet full of wonder. Will she be like all the other kids? No, indeed she won't. And I will embrace that. What a beautiful thing that can be. Brian said to me the other day, "We must be doing something right, because she sure is happy." We certainly are doing something right. This life isn't easy, but mostly if we love her well and do the best we can, she has the best chance at happiness and that is all we want for her.
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AuthorHi, I'm Kristen! I'm a mother of a beautiful, but rare little girl and the wife of my best friend. I have decided to share my experiences on this journey in hopes to help others understand or help others in similar situations. :) Archives
October 2017
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