The Gift of Community

As we kick off this Thanksgiving week, it seems only natural to spend extra time reflecting on all we have to be grateful for. When I look around my house, which currently looks like a tornado blew through, it’s not hard to see how much we have. I also find that, as I get older and further into raising my own kids, it takes much less to make me truly happy and content (so I’m kind of wondering where all this clutter still comes from, honestly). I have wants, of course; we all do. But at the end of the day, my needs are met and so much more.

Two years ago we spent the long holiday weekend in the hospital with Landry. She had just been sedated for a brain MRI the day before and had a hard time coming out of anesthesia so we spent three days on oxygen in Peoria. Last year we were preparing to have her tonsils and adenoids removed less than a week after Thanksgiving. What should have been a fairly quick recovery turned into nearly a three week stay from which we were barely discharged in time to spend Christmas together. Needless to say, the joy of having my family together, safe, and healthy this year is more than I could ask for and a blessing that is not lost on me.

Something else that this year has taught me to be thankful for is the gift of community. I am blessed to have grown up and currently live in the same small, caring town. I have plenty of helpful and supportive family close by as well as a very loving and encouraging church family. I have also been especially grateful in recent years for the opportunity to grow some of my very closest friendships and watching Chandler begin to build her own close circle of friends has been equally as special. They say it takes a village and they weren’t kidding. I hope that as you’re reading this you are able to think of many instances that you experience the blessing of community in your own life as well. It really is a gift to be treasured as no one knows us better or loves us more than “our people.”

I have another community too. One that I never could have dreamed I would someday join and it’s only because of some pretty wild circumstances that I’m here. I am a part of the CHAMP1 community and, on a more broad scale, the rare disease community. Rare disease. Sometimes that still feels strange to say. I assume that no one has a baby and thinks to themselves, “I sure hope we get a rare genetic diagnosis so I can join a Facebook group and make some of the most meaningful friendships I’ve ever had.” I guess I can only speak for myself, but that thought never crossed my mind. Regardless of whether or not I asked for it though, it’s exactly what I got. I didn’t just receive Landry’s diagnosis last year; I got Landry’s diagnosis and an invitation into one of the most warm, welcoming, and understanding communities I have ever been a part of. I was accepted into a community of parents and caregivers that fight just as hard for their kids as we do for Landry and who can relate to every single detail of raising rare children like ours.

Over the last couple of weeks I have collected statements from a handful of my fellow CHAMP1 moms about why they are thankful for the privilege of raising CHAMP1ONs. While our community is small and there is an even smaller representation included here, I hope these small glimpses show you that being big is not a requirement for being powerful. Large numbers are not a guaranteed tool for effectiveness nor does the size of a group directly correlate to its strength. Tiny but mighty is a thing and our kids and our community are active proof….

“I am thankful for our CHAMP, Lejla, because she teaches me to be a better mom. She has a heart of gold and loves everyone. She loves her family and friends and always wants everyone to participate. She reminds us to find joy in the little things in life. Whether it is just sitting on the couch together as a family or playing hide and seek as a family she is just as happy for both. She is always your biggest fan. She will be right behind you clapping you on no matter the task you are doing. She makes all of our hearts grow bigger each day.” – Jordan, Georgia

“I’m thankful for my Calum as he’s molded me into a mum I never imagined I’d ever be. As the years pass, his determination in the world has shown me that no matter how tough life can get, if he can get up and get on with life then we really have nothing to complain about! He is a true CHAMP1ON ” – Stacey, Scotland (Calum just celebrated his 15th birthday yesterday!)

“I’m thankful for my CHAMP1ON JJ and his wonderfully uniquely-made DNA because he ignites a fierceness in my heart that wasn’t there before him. I’m thankful for him teaching me what relentless love looks like. I’m thankful that his heart is made up of pure Joy. I’m thankful for JJ teaching me to speak up for those who can’t  speak up for themselves. I’m thankful for him teaching others that the uniquely-abled are just as worthy as anyone else. Thankful that in this lottery pool of genes I got JJ.” – Katis, Florida

“I’m thankful for how strong Lucca is and how his smile make our lives better every morning. His smile fixes all the everyday adversities.” – Patricia, Brazil

“My sweet Jett, this season of giving thanks has me humbled and in awe of how much you have changed me. You have given me new eyes for this world and continually draw me near to God as we seek to raise you to bring others to know Him in a new light. Your joy and love for others is so evident in everything you do, even at two years old! I’m so thankful to be your mama and am beyond blessed to watch you grow into the smart, silly & passionate boy you are. We love you, buddy!” – Stephanie, California

On behalf of “our people,” the CHAMP1 family and research community, I want wish you the very best Thanksgiving holiday. I hope that it includes lots of fun and good food, while being surrounded by your own community, whomever that may consist of. It is not always who we expect it to be, but sometimes those unusual connections can become the most meaningful. I also hope that you’ll join me this week in taking extra time to focus on all of our many blessings. Gratitude really does change the big picture and it doesn’t have to take much effort or time. After all, there is always, always something to be thankful for and we are all in this together.

xo – Lindsay