Gratitude: It Ain’t Just For Thanksgiving!
In this Thanksgiving season, many of us take time to reflect on the things that bring us gratitude. I love this season and this time of year for this reason. It gives everyone a chance to slow down, take notice, count our blessings, and acknowledge all that we have to be grateful for in our lives.
As a rare-disease parent, I have come to find that feeling gratitude, giving thanks, and being grateful are not just acts to save for Thanksgiving. We can cultivate the virtue of gratitude all year long. I find it to be a mindful choice on how to live this rare-disease life. Gratitude helps me keep my perspective. Because the day-in-day-out of caring for someone with a rare disease is so busy, intense, and often filled with difficult situations, it can wear us down. Often the difficulties of our daily lives can alter our perspective. It has the potential to make us become jaded, bitter, and downtrodden. Gratitude is a way to battle these feelings.
Taking time out to meaningfully see the good things in our lives can help us keep our perspectives clear and our hearts full. I don’t know about you, mama, but I want my heart to be full; I want to see the good. So I look for it. I find it, I acknowledge it, and I’ve even learned to shout my gratitude from the rooftops.
Gratitude makes everything grow.
—Mary Davis
When my son was newly diagnosed at the beginning of this journey, I don’t think I could have predicted that I would have a list of things to be grateful for. At the time, all seemed gray. But yet here I am, writing a post about gratitude because I wholeheartedly believe it’s a vital part of the rare-disease journey.
As a rare-disease mother, I have cried a zillion tears over my son’s diagnosis and all the losses along the way. But those tears have dried, and now what brings me to tears more than anything else is gratitude.
Our family feels such gratitude for the people in our life. If raising a child takes a village, raising a child with a rare disease takes a village and then some. Our village has formed in ways we never expected or could have predicted.
Our village sat by our side as we went through our challenging diagnosis. Our village showed up with flowers and meals. They helped us take care of our kids, run errands, and find resources as we were tracking down information and busy learning all about our son’s rare disease. They volunteered and participated in fundraisers and events to raise awareness and funds toward research for SMA treatments. They surrounded us with love and support and uplifted us during the most challenging points of this journey.
Our village has shown us such understanding and compassion. Though we don’t get to see them as often as we would like, they are there at the drop of a hat when we need them. And when we do get to get together, it’s as if no time has passed. When we are with them, they are thoughtful. They go extra steps to make sure our family and our son can feel included. They find ways to make things accessible and easier for us. They make the extra effort to be with us. It makes our hearts so full, and we feel embraced.
Along the way, our village has grown. We’ve collected new friends along the journey, including fellow special needs parents and other rare-disease families. Walking this road with them has helped us feel more normal. It has helped us feel like we are not alone.
We’ve met new families and friends who have embraced us just as we are. Kids have become friends with my son and loved him just as he is. We’ve felt such acceptance, and it has surprised us and touched us in ways we can’t even put into words.
Our village now includes an amazing care team who, over the years, have grown into friends. We have therapists, doctors, and specialists who have been with us for years now. They work so hard for our son, always looking for new ways to improve his health. We have brilliant researchers and biotech companies whose staff have invested their time and energy to pioneer and evolve treatment options for our son’s disease. But even beyond that, they’ve gotten to know our family, and they’ve supported our journey.
There have also been so many strangers along the way who have offered us kindness and shown our child compassion. It has been unexpected and has helped us see that there is still so much goodness in the world.
From the smallest act of kindness to the grandest gesture of support, we have been touched by it all. All of it has made a huge and lasting impact on our lives. This gratitude we feel comes from a million little things over the years that do not go unnoticed and are not lost on us:
- Strangers who have given Miles a toy while in a store
- A kind hostess who gave him a special window seat at a restaurant
- Our wheelchair and mobility specialist, who taught Miles how to pop wheelies and play wheelchair hockey
- The little boy who shared his candy with Miles at the Easter egg hunt in the park because Miles couldn’t get through the grass easily in his wheelchair
- Our aide at school who has treated my child like her own
- My group of women friends who volunteered, unasked, to help us throw an important event for SMA
- Our physical therapist, who has been an unwavering mentor and has answered my texts even during her vacation, to get me the information I needed
- A friend who used her expertise and skills to help us fundraise for SMA research
- Specialists who have gone the extra mile to provide me with the research I needed to make a tough medical decision
- The staff at Cure SMA who have bent over backward to help us
- Researchers who have continued to work tirelessly to find a treatment for Miles’ disease
The gratitude we feel from all of these acts of kindness makes me weep. When you receive a rare-disease diagnosis, you can initially feel alone. We no longer feel this way. That is truly significant for a family like ours, and we don’t take it for granted for a single second.
One of the unexpected parts of this journey has been all of the amazing people we have met. I’ve heard many rare-disease families talk about this often. The rare community is filled with caring and compassionate people, all willing to help each other on this journey. It’s one of the kindest, nurturing, and thoughtful communities I’ve been in.
But even beyond that, it’s filled with trailblazers, thinkers, doers, and changemakers. So not only is this group compassionate, but they are smart, savvy, go-getters who are changing the future of rare disease. The rare community is not a group that is wallowing in darkness. This is a group that is standing up for change. This group chooses to see the light and fight for hope, despite the darkness.
So while all of us rare-disease families have been dealt a very hard card and are walking a very hard road, it helps that we are walking it alongside kind-hearted, passionate souls. It helps that we feel uplifted by this community. It’s a reason to be grateful.
It’s so important to take notice of this. It’s essential to look around and see the good in a challenging situation. It shines a light into our windows and puts hope in our hearts.
So let’s sing our thanks! Let’s shout our gratitude from the rooftops. People deserve to hear how they’ve helped us along our way and how they’ve given us that boost right when we needed it.
Let’s not let any acts of kindness go unnoticed. We all need more acts of kindness, and a little gratitude goes a long way!
Yes, I love this time of year because it’s a season to recognize all the beautiful people that have touched our lives. But I’ve learned that there’s beauty living in gratitude like this all year-long. Not only does it honor those that have shown us kind-heartedness and the gifts of their time, but it keeps our perspectives open and aware of the good in our lives.
As we all prep our thanksgiving meals, set our tables, and pour our wine, let’s overflow with gratitude for our mighty villages who’ve changed the trajectory of our journey. Let’s give thanks for all the unexpected people who’ve come alongside us, strangers who’ve become friends. Let’s have eyes that see the good that exists right amid our hard circumstances.
Let’s cultivate that same gratitude not only today but tomorrow and all year long because gratitude keeps our hearts beating with love!
With a grateful heart,
