“Mommy, Will I Walk When I Am Older?”
I knew it was going to happen, I just wasn’t expecting it to happen when it did. When Maya first spoke about wanting to walk she was three and a half years old. It felt so surreal that for a moment I was waiting for a director to yell, “Cut” so I could quickly run off of the stage. But I was the director and I couldn’t run. Despite successfully traversing many difficult challenges in the past, this exchange stole my breath. It still does a year and half later.
Parents of children with disabilities become adept at thinking on their feet to meet their children’s needs even amidst very challenging circumstances. There are practical puzzles for us to solve such as how to fit into a small bathroom stall with a wheelchair. Then there are social situations to navigate like explaining to one of my child’s peers why she still wears diapers in a way that hopefully leaves Maya’s dignity intact. This, however, was very different. I suddenly found myself choking on my own empathy and grief and unable to quickly find the words I wanted to say to her.
In that fleeting moment many different thoughts and feelings moved through me:
*I was thrilled that my daughter was being so open with her feelings and had the courage to share them.
*I realized her bad mood had less to do with her being stubborn and more to do with her feelings about watching people walk while sitting in her wheelchair.
*I was caught off guard and nervous about responding to her in a helpful way.
*I was facing my own anxiety that I had pushed out of my mind about what kind of mobility she would or would not have in the future.
I was trying to process these issues at lightning speed so that I could respond with enough clarity to quickly take away her pain (and in turn some of my own). I wanted to fix Maya’s feelings about her mobility challenges by providing her with a “perfect” answer. I didn’t want to discourage her and yet I didn’t want to give her false hope that she would potentially feel angry about later. What I painfully faced in that moment was the realization that I didn’t have the power to fix any of it nor did I know the answer to her question.
Two days ago Maya asked the walking question again (and it has come up a few times in between). She is five now and she asked me as casually as if she were asking for more cereal. She was staring at me, analyzing my body language, and waiting for me to respond. Nothing gets by this little girl. What she lacks in physical ability, she makes up for in emotional intelligence and acute observation (one of the benefits of being less mobile than others and having an active mind). She is astute enough to detect a longer than normal pause when someone is answering a question she feels is important. I would get away with nothing.
So, what did I say the first time and what do I say now? I chose then and still choose to answer her honestly. I cannot do it any other way. If I attempt to hide something from her, I know she will call me out on it.
I tell her that I hope that she will walk but I don’t know if she will. Perhaps I should not propose even a remote expectation. Who knows what is right? I go on to tell her that we will support her as far as she can go in her abilities. This is the most honest yet compassionate statement I can offer her. I wish I could offer her more.
With time it has gotten a bit easier to navigate this terrain. I have more awareness about what she needs from me. Initially, I thought because she was so young she wouldn’t be thinking about all of this. However, after the first time she asked me about walking, I realized that she was more in tune with herself and her environment than I gave her credit for, or that I was prepared to face. Now I have developed some ideas about how to answer her and I am becoming more comfortable being in the awkwardness of these exchanges.
Despite these being difficult conversations they offer an immense opportunity for Maya’s emotional growth. We are able to help her understand how she can better cope with her limitations. We help her learn about where her power lies in this struggle; in doing whatever she possibly can for herself. Regardless of what mobility issues Maya may ultimately face, this is a vital piece for her to understand and accept in order for her to successfully participate in this world. At the same time it is during talks like this that I remember to openly acknowledge how hard all of this is for her because I know sometimes she needs to hear it.
We want to help Maya focus on celebrating the goals she has achieved, and will achieve regardless of where she lands. I understand now that in order think about her mobility issues in this way she needs to face her authentic feelings and move through them as they arise. By allowing her to do this we will support her as she navigates her way to a healthy place of acceptance about herself, her life, and her disability.
I know many more tough conversations are ahead. Blake and I may not always have the best answers or the “right” answers, and I certainly wish I could speed dial God sometimes. But as I go further on this journey I learn that our path is less about getting it right, erasing a problem, or filling the space between us with an arsenal of positive outlooks. It is more about being there with Maya and her feelings, asking her about them and having the strength to do it.
Blake and I will sometimes ask each other “How do you think we did?” We can’t be too hard on ourselves. This is tough stuff. This is life, life with our unique little girl, and we are learning as we go.
I think you are an amazing woman, mother and inspiration. Thank you for sharing such personal thoughts. I too have a child with special needs and this blog entry will help me as I approach the possibility of him asking me these tough questions.
Thank you so much for these beautiful words.
Beautifully written, inspiring and wise.
Wonderful Michelle. Last week I was at a meeting where I was asked to explain a bit about who I am and why I am so passionate about gardening and local food. I told three stories about three key life lessons that were taugnt to me by children. I look forward to hearing what Maya teaches you about this topic as well. As we know, she is an amazing perceptive and very intelligent person. xoxox
Michelle:You Blake and Maya are all heroes tous all. You navagate this difficult terrain with such skill and compasion. We are routing for you all. Love to you from Aunt Joan and Uncle Rich
My daughter is 2, and still no where close to walking. And you are right about them being more in tuned to people and emotions. I needed this story. Thanks so much!
Thanks for sharing your comments Julie. I am so glad it was helpful.
My daughter is 9 and is just beginning to walk on her own after 8 years of extensive PT, including 5 years of hippotherapy. Her recent success is due to the incredible team at St Louis Children’s and a dorsal rhizotomy and hamstring lengthening, and a year of intense rehab. I relate so much to your beautifully written story… Always there are tough questions, tough answers, and hard work. Thank you for sharing your stories!
Thank you for this story. Your words really help people to hold on. Thank yo again.
Hi Kate. I initially had pretty strong reservations about sharing my feelings so openly and publicly. Your feedback makes me glad I did. May you always find the strength you need in each day!
My son is 3 and has very limited speech but I know there will be days when he wants answers to tough questions. I remember being caught off guard when his OT asked how I had explained his upcoming G-tube surgery. He was only 2 at the time and it never entered my head that I would have to prepare him to have a g-tube! But we came up with an explanation and even a little song about his “big boy tube.”
I would like to know if you are able to keep yourself from crying in front of your child in these emotional situations. I would like to think I could control that, but I’m not sure I would be that strong.
I think it is wonderful that you were so thoughtful and creative to come up with a song! What a great idea and I think I am going to have to borrow it. Maya loves music and singing. You have asked a very timely question. Just yesterday I was thinking about this very issue of managing emotions in front of children.
We all have different emotional systems. I have my days and sometimes longer stretches where my emotions about Maya are right under the surface. When I do feel I have more control over being able to shift my feelings around I do whatever I can to focus on what Maya needs. She is very sensitive and intuitive and when she was much younger my mother noticed how easily she picked up on my emotions (as many children do). My mother made me keenly aware of this and encouraged me to practice focusing on her and focusing my mind on what she needed at any given time.
Since my goal is ultimately to ensure her emotional security and sense of safety I do whatever I can to muster the strength I need to support her and set my emotions aside. With that said, it doesn’t always work. We are human and I know that as much as I may wish to set my intention to support Maya in a particular way it won’t always unfold the way I plan or hope. Our kids need to know we are human too and that it is ok sometimes to be emotional. I just try to not make a habit of getting upset in front of her every time we have a discussion about challenges she faces.
Over time these tough topics have been easier to think about and talk about as I have gained more acceptance about her CP. I also have realized that sometimes Maya may be asking a question with pure curiosity (rather than anxiety) but I bring my own anxiety to the table thinking that she is thinking and feeling what I am. A couple of times when I found myself choked up with emotion my husband or other people were around and I was able to turn around and take a deep breath before returning to the conversation.
Looking back, I think I have occasionally coped by perhaps tuning out or making light of tough questions or concerns she alludes to until I am better able to handle hearing them and responding to her (perhaps not ideal but it’s the truth so I want to share it). I think it is ok to tell your child that what she/he asked is an important question and you want to take some time and think about it so you can help her/him as best as you can. You can say something like, ” This is an important question and I want to talk to you about it when mommy isn’t driving, or when we have some privacy, or when I have some time to think about it etc.”.
I hope some of this is helpful. It’s tough to answer a question as important as this one in this format. Believe me when I tell you that your awareness and intention to think about these issues and care about addressing them and your feelings will carry you much farther than if you chose to ignore them.
Michele
BTW-I just posted a link to an article on our facebook page which I think is helpful in strategizing how to think about supporting your child (which can in turn shift ones emotions in a more positive direction) and some guidance on how to approach a child in ways that will foster hope and strength within him/her: http://www.greatschools.org/special-education/health/763-nurture-resilience-in-children.gs