Hi, my name is Kat. My hospital chaplain husband Nate and I have two little boys, ages 7 and 4. Our oldeest, Brendan has Duchenne Muscular Dystrophy and Owen, our youngest does not. I’ve taught yoga for the last thirteen years. Our family enjoys devouring books, being in and with Nuture, camping, adventures, and hanging out with our welsh terrier Wendell Berry.
Miggy: Hi Kat and welcome. Thank you for sharing your story with us today. Let’s start at the beginning, can you take me back to the day you found out your son would have special needs? What were the red flags and warning signs that something was not quite right? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Kat: B’s diagnosis with DMD, or duchenne muscular dystrophy, is rather recent. We found out last year that he would have special needs, but I think in a way, I always knew. It was the subtlest things, the way he breathed when he was a baby, a few reoccurring dreams, and a dull sense of fear. He began walking happily at 17 months, which was just under the radar to be concerned. He was challenged by stairs and moved differently than other kids his age–really, though, it was subtle. He took a hard fall at preschool on the stairs and at home, he was slow on the stairs. During this time, I had a baby in arms so I remember feeling frustrated that he “wouldn’t” switch feet or get in the car when I said it was time to go or move more quickly. He started working with a PT at school. She mentioned how great it was to work with B as she had worked with two older boys with DMD–she casually mentioned this, but in hindsight, I think she was planting a seed.
Kat: DMD is a progressive muscular degenerative disease. It’s genetic and fatal. His body is missing the tiniest part of an exon in the dystrophin gene, in his case, he has a micro deletion at exon 18. The dystrophin gene is the largest gene in the human body and is responsible for muscle growth and repair. Without dystrophin, muscles can’t repair fully and slowly lose strength and functionality. The damaged cells result in fibrosis. At this stage, he doesn’t have a lot of needs. We carefully watch for signs of fatigue. His school is big, so he uses a wheelchair “Blackie” to travel to and from his special classes like to the library or art and music rooms and the lunch room. He always has an aid with him to help keep him safe on the playground. We limit any lifting as much as we can and he has some difficulty getting up off the ground and sometimes he falls. This happened more before we got him started on steroids. Though his physical needs aren’t significant (there are some moments that I forget he has this at all), what affects me the most is a sense of urgency and some pressure–or rather strong motivation, to live fully, joyfully, and abundantly. Life expectancy is right there in the back of my mind all the time.
Miggy: What are the biggest worries you face for your son? On this flip side, what are your hopes and dreams for him?
Kat: I worry about being there for him when he’s older. I worry about my own unresolved issues and how that affects him. I worry about broken bones (he broke his arm last Fall). I worry that his little brother will hurt him! I worry about his heart. I worry about going into buildings and doorways and unshoveled sidewalks. B is amazing. He’s funny, highly intelligent, creative and imaginative; he reads voraciously, loves legos and science and helping out. My hope is that he grows into who he is meant to be. That he grows in kindness and joy and that he keeps laughing and loving the way he does. He’s thoughtful and loves church. He’s a joy to be around and I hope others get the opportunity to know him, love him and be in relationship with him.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Kat: This one took a long time to answer, not that funny things don’t happen–being a parent is hilarious, but I couldn’t think of one thing to share. Nate and I were talking about this last night and I really started to laugh when he talked about what happens when B falls in the snow… he can’t really get up when that happens and one time he had to run across the field because B was sort of stuck upside down. Imagine a dad running across a deep field of snow and a little boy stuck head first in it with his bottom in the air. His dance moves are also pretty amazing and always make me laugh. Arms flailing, bootie shaking!
Miggy: How can people best approach or respond to your son? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Kat: Be respectful, kind, friendly, ask him questions, get to know him, and spend time with him. I wish people wouldn’t comment on the size of his calves or how strong they look (but this happened at the MD clinic before his appointment so I can’t really stop that). He’s also so little, so sometimes he’s treated like he’s younger. I recently gave a talk to his class, (thank you so much for writing and sharing on how to do that!) and the kids had really great questions, but they really wanted to know things like can he drink milk?!–there was something about his bones in there, I don’t know? I loved being able to address them then and there.
Miggy: Duchenne muscular dystrophy is a very difficult diagnosis to receive. How have you coped during this difficult period of coming to terms with your sons diagnosis? Do you have any tips or suggestions for parents who are experiencing grief as well as taking on a new role of care taking in a different capacity?
Kat: My husband and I are both deeply spiritual people and believe that God lives in and through all things. He is a hospital chaplain and spiritual director and I’ve taught yoga for the last 13 years. Coming to terms with the unpredictability and unknowns of life have as much to do with this journey as the diagnosis. The initial trauma will dissipate, but I think the learning to walk with grief, to allow the feelings to move through, to evolve, is essential. Oils help, so does therapy. But just having good self-care practises and people to love you, and a sense that it’s not all about you–there is something bigger happening, a deeper story being told. There is a profound gift in disability, in limitations, in the differences. Gifts of compassion and humility and deep love for it all, for every moment, every unfolding. Awe.
Miggy: If you could say something to the mom who just starting on this journey of duchenne muscular dystrophy, what would you say? What would you say to yourself if you could go back in time?
Kat: I would say, “Oh, sweetheart .. you are loved, and you are NOT alone. And, I’m here for you, like really here for you–I’ll check in on you.” I wouldn’t say, “If anyone can handle it, it’s you” or “If there is anything I can do, let me know.” That is to say, there are things at play, that are beyond understanding. Having a certain level of faith–a trust; an expectation of wonder is warranted. I’m not sure I would say anything different to myself because there is a process–a hero’s journey if you will– that each person has to go on. The phrase “Diversity is strength and difference a teacher” are on my heart. The rare and real response that difference brings to the conversation about life is a real gift. I will say that making the decision to be here, to want to do this, is one I have to make over and over.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Kat: The biggest lesson, and this is true since becoming a mom, is that you/I can’t control anything. I can make choices that are kind and good and from the heart. I can be honest and share the truth of my experience. I can do what I can do; I can do my best, but I could always do it better, or worse. I continue to learn about tenderness, humility and awe. I’ve learned that I simply cannot keep it all together all the time and that it is OK to let it all fall; and that the expectations I have for myself have completely changed, in the most powerful and magical way. The biggest lesson is about gratitude, pure and simple.
Kat, that was beautiful. Your words lifted me and have left me with that floaty, calm feeling I sometimes get when something really resonates with my heart. Instead of writing a big long summary here, I find myself wanting to be quiet and bask in the wisdom of your words. So I will simply highlight some truths that spoke directly to my heart: “There is a profound gift in disability, in limitations, in the differences. Gifts of compassion and humility and deep love for it all, for every moment, every unfolding. Awe.” and “The phrase “Diversity is strength and difference a teacher” are on my heart. The rare and real response that difference brings to the conversation about life is a real gift.” Thank you.
Thank you so much for this. Making the decision to be here, to want to do this, is one I have to make over and over. That resonated with me so deeply.