This week my two sons got their very first power chairs. It was a day full of smiles as they raced through the house and tested their chairs’ ability to lift up and down, turn corners, and navigate their bedrooms. My sons are only eight and nine years old, and yet this day is already here because they fatigue so quickly. It was such a blessing to receive these fantastic chairs. They will give my boys more independence and more rest for their muscles throughout the day. It is an absolute blessing in every way, but it’s also incredibly bittersweet.
Trust me when I tell you that these power chairs were an answer to prayer. We wanted them, hoped for them, and made it clear to our doctor that we wanted to gradually allow them to adjust to such a significant change. I hated the idea of waiting until they were no longer able to walk. I’m a firm believer that it’s much more emotionally healthy to adjust gradually to using their power chairs. I’m so grateful for these chairs and the independence they bring. Their presence in my home, however, brought emotions I wasn’t prepared for. The need for them hurts my heart. They are still a blessing, but also a huge reminder of the disease and all that it’s taken from us.
In just two short years, I’ve watched this disease wreak havoc on my sweet boys. I’ve watched it take away their ability to play on the playground. It’s taken their ability to run, jump and climb. They can no longer lift heavy things, get up from the floor, or climb into their beds without assistance. My sons cannot raise their own legs from a lying position without using their hands to help lift them up. They can’t bend down to pick up toys without falling. This disease has taken away so much, and yet every day, my boys smile, laugh, and play without complaint.
The day the chairs got delivered, I told myself I’d be fine. I was expecting this delivery for a long time, and I was glad to be prepared for the next stage of this disease. Yet when I saw my boys sitting in their chairs side by side, emotions snuck up on me. My oldest son immediately lifted up to my height and said, “Look, mom, now I can hug you.” I hugged him and smiled while holding back tears of joy, sorrow, and gratitude.
My younger son is eight and small for his age. He was terrified to drive his new chair around. He had been so anxious for this day to come. He is a very cautious little boy, so he worried about bumping into walls and running over our pets. Yet, he hopped in, moved the joystick, and drove through the house like a pro. His smiling face lit up the room and made my heart full. Then I heard him tell his little sister that one day he would need to be in his chair all the time, and the emotions flooded in once again. I didn’t even know he understood that. He wasn’t upset or scared anymore; he was calm and accepting. My boys are so inspiring.
That night I sat in bed wallowing in self-pity. I sat feeling sorry for my children’s constant need to adapt to loss. Loss of abilities, loss of muscle, and loss of normalcy. How did this become our reality? I wondered. Two years ago, we didn’t even know what Duchenne was, and now it’s controlling our entire lives. It’s not fair, I cried. I was grieving this new change to our lives, but I felt gratitude beneath the grief. I felt peace beneath the pain. I’ve learned that life as a Duchenne parent is full of contradictory emotions.
I’m thankful for the independence it will give my boys. I’m grateful that we live in a country that has such amazing technology like this. I’m happy that they can now reach the breakfast bar from their chairs, or lift to open cabinets on their own. I’m so grateful for the blessing, but I can’t help the emotions that come with this new chapter.
I used to feel conflicted with all these opposite emotions flooding in at once, but I don’t anymore. I’ve learned to accept my feelings as they come. I can’t control them, but I can use them to grow. Feeling blessed and broken simultaneously is just a part of this life. Life with Duchenne is a giant paradox. Each day brings so much joy with it, yet beneath that joy lies deep sorrow, pain, and shock. It’s like living with an open wound. You learn to live with its presence, but with each breath, it still hurts. You learn to be grateful for the lessons and the scars that come with it, but the pain never goes away.
As a Duchenne mom, I’ve realized that without the hard moments, I wouldn’t feel the beautiful ones with such intensity. Without the pain, I wouldn’t be so focused on the joy. I’m so proud of my children. I love my life, even in the midst of the suffering we face each day. I no longer guilt myself for feeling a rush of contradictory emotions when things change. Broken is still beautiful; life is still amazing amid the anguish, and sometimes blessings are bittersweet. It’s normal to feel it all at once, so take a deep breath with me and embrace each new change with patience, grace, and faith.