One year ago, if you would have asked me to say the words Duchenne muscular dystrophy, I couldn’t. It was too new, too fresh, too difficult of a reality to process.
One year ago I fell to my knees crying and physically shaking with fear, anxiety and anger as I hung up the phone with our neurologist. His words were clear and precise:
“His blood work came back and they did find a mutation on the dystrophin gene, confirming that he does have Duchenne muscular dystrophy.”
One year ago I crawled into the crib with my 10-month-old and sobbed quietly next to him as he slept. One year ago I spent my days crying and my nights crying some more. One year ago I wondered how we would ever move forward and, even if we did, where would we go. One year ago our life changed in a way I would never wish upon anyone. One year ago I grieved.
Today, I still cry, often. I still have moments where I fear the future. I still grieve what life may look like for my youngest son. Today, I still ask why. I still lie awake some nights, and I still wonder if this is all a dream. And while today I still grieve, I’ve learned in this last year that grieving is important. That grieving teaches us and that grieving grows us. Grieving redefines and grieving strengthens. Grieving has helped me process the present and is preparing me for the future. Grief is not a sign of weakness and, when done in a healthy and safe manner, there is no wrong way or wrong time to grieve.
So to those who have recently received a life-changing diagnosis, if there is one thing I’ve learned in this first year after Fritz’s diagnosis, it has been the importance of grief. Take time to grieve. Let yourself cry when you need to cry. Grieve alone, but also make sure to grieve with your spouse, with your family and with your friends, because chances are, they are grieving, too. Communicate. Share your thoughts and what you’re feeling. Your grief is valid and you need to feel it, you need to talk about it, you need to process it.
For me, my grief was initially over the diagnosis itself, but it didn’t stop there. There were many weeks spent grieving over different parts of the diagnosis: what it meant for my son, the doctor visits, the medications and the medical equipment. I grieved what Duchenne meant for me as a mother and what it meant for our family. I grieved at the thought of losing what I imagined our life would look like, and I grieved at the thought of losing my son.
But each time I grieved, I found I was able to then move forward. Sometimes forward meant just standing back up, or sometimes it meant actually being able to take a step. Each time I took the time to grieve, I learned something new, and I felt stronger. It’s how I’m able to even type these words today, and reflect, with few tears, on the most difficult days of my life.
One lesson that came out of my grief that has explained and redefined how we as a family now live is the belief that strength is more than muscle. In our home we believe strength is grieving. Strength is letting yourself cry. Strength is sharing your fears. Strength is determination. Strength is awareness. Strength is community. Strength is taking the time. Strength is being thankful. Strength is helping others, especially when it’s not convenient. Strength is being present. And strength is honesty.
And if I’m being honest here, I’m finding that a diagnosis is just the beginning of a life of grieving. A year later, however, I’m not spending my days, nights and weeks grieving. But I do grieve in moments. Circumstances or instances often spark the harsh realization of what Duchenne means for Fritz, but I allow myself to grieve in those moments, knowing that even though they are but small little sparks, if I let them build, they can quickly become one big fire that will burn up every aspect of our life, even the good things. So I’ve cried at the park as I watched my son struggle to climb the playground equipment. I’ve allowed tears to fall when I watch other kids his age do things he may never be able to do. I grieve different aspects of the diagnosis daily because I don’t think there is a wrong time or place to grieve when you’re dealing with something as fragile and complex as a diagnosis like Duchenne.
But it’s in that grief I find I’m still growing. I’m still learning, and I’m becoming more and more equipped to fight for my son. It’s grief that allows me to accept and move forward. When I take time to grieve, when I don’t fight the tears, when I say what I’m feeling, when I let others know where I’m at, when I stop and pray, or when I write out thoughts that have been spinning around and around in my head, I can then move forward and find solutions instead of more problems. When I take time to grieve I have the capacity to be thankful.
I’m thankful for the community of people that has stepped up and loved our family so well this last year. Grief has allowed me to meet, learn about and be thankful for the many mom-warriors who have spent so much time and energy raising awareness and getting research to where it is today. I’m able to be thankful for the many people and organizations that dedicate countless hours to bettering the lives of those living with Duchenne. I’m thankful for Fritz’s smile and his ability to fill us with joy. I’m thankful for each day I have with each of my boys, because in all reality, that in itself is such a gift.
A year of grieving, a life of grieving. These are not phrases one may deem encouraging, and truthfully it’s not exactly what I envisioned writing about when I began reflecting on this last year. But it’s been the best description of what my family and I have gone through since this diagnosis. And what I’ve come to recognize is that although this year has been a year of grieving, grief is not bad. Grieving has actually allowed me to see good and to feel good. It’s controlled the sparks of fear, anxiety and anger by not allowing them to take control or burn up my ability to be grateful. Grieving isn’t easy, but anything worth doing usually isn’t. It’s in this last that year that I’ve been forced to recognize that grief doesn’t grow your fears or heartache … grief lets you process those things, then in turn, it grows you.
Strength is more than muscle. Strength is allowing yourself to grieve.
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