Last week I had the privilege of speaking at an event in my hometown. A few months ago, I was invited to talk at the annual prayer breakfast in Tipton, MO. When I was first asked, even though I knew I’d be nervous, I figured things are always more interesting when you say yes, so I thought “what the heck?”
I felt so lucky to have a chance to talk about our family to a room full of familiar faces in my hometown. It was wonderful to see former teachers, family and friends and many others who I’d never met. I somehow managed to make it through without tears and then was overwhelmed the kindness and support of the crowd there. I got so many hugs! In the words of one of my best friends who traveled hours to be there that early morning with her baby, no less, “HUGGING IS THE BEST!”
It was a very humbling experience. I love the way God weaves things together, even the small details. The following are the words I shared at the prayer breakfast last week. I hope you can find some encouragement from them.
A little over a year ago, I sat thinking about the new year and what I wanted to accomplish. I pulled a notebook from my purse and jotted down my goals for 2017. Some were your typical new year’s resolutions, focused on health and fitness, others related to finances or new experiences and finally, very hesitantly, I wrote down, “Find a way to share more of our story.” I was scared to put it on paper. Even just holding myself accountable to that goal was somewhat daunting to me. I had been feeling the nudge for a while to speak out about our experience, but it still felt scary. I thought writing that down as a goal might encourage me to actually do it.
Sadly, 2017 came and went and I only successfully accomplished 1 out of 7 of my goals for the year. I didn’t run the race I planned to or save as much money as I hoped. But I think for me, the one goal I was able to cross off my list was the most important…sharing my story.
Some of you may be familiar with my story and others may not know anything about my experience. So a little sharing might be a good place to start. I grew up here in Tipton and moved to Springfield when I started college in 2003. I stayed there to start a job after graduating and Springfield has been my home since. I got married in 2013 to my husband Evan who’s from the area. We 
started our family fairly quickly and welcomed our first son, Gage, into the world in the summer of 2014 and our youngest, Caleb, a couple years later. I knew becoming a mom would be a life changer, but I could not have imagined how much of an impact it would have on me.
I had an easy, uncomplicated pregnancy with Gage. It wasn’t until after he arrived that we knew anything was wrong. We had a short stay in the NICU, 
but came home with our tiny baby boy before confirming a diagnosis of congenital CMV…a common virus that’s not threatening to the general population, but can be devastating for an unborn baby when a pregnant woman gets a primary infection, which is what happened to me. I’d never heard of CMV before Gage’s diagnosis. There’s a huge spectrum of outcomes for children with it. For my son Gage, there were so many unknowns at first, and there still are today. Gage is now 3 and a half years old. He is unable to walk or talk like other kids his age. He does things his own way. He takes steps in a gait trainer. And he speaks volumes with a sweet 
smile and infectious laugh. What took me a long time to realize is that he will face extra challenges throughout his life. At first, I thought he would overcome everything given enough time. But as more time passed and more milestones were missed it became clear that is not how Gage’s story will unfold.
For me, the first step of sharing our story was getting over my own denial and opening up to other people about my fears and hopes. Luckily I have a wonderful support system that allowed me to do that, but I also became more comfortable sharing by seeing the way others do it and connecting with other special needs parents. Last spring, I began writing more of my thoughts and feelings down. As I wrote, it sometimes felt more like a diary entry than anything else, and at times I thought that was enough. But when I looked back at that last goal written on my list for 2017, I felt that same nudge to share in a bigger way. After plenty of hesitation, I put my words out there for others to see in the form of a blog. The support I’ve received since then has been overwhelming and the ways I’ve personally benefited are huge. That’s why I want to encourage all of you to find a way to share your story.
Several months ago, Gage and I were invited to do a photo shoot and share our story through a platform called 7 Billion Ones. The whole idea behind the movement is that every single person on the earth matters. When I met the photographer, Randy Bacon, he said to me, “everyone has a story to tell and you never know who needs to hear yours.” Those words have really stuck with me. In my experience of telling our story, there are some things I’ve learned that I want to share with all of you today.
Sharing = Support
For me, one of the best things about opening up and being honest is the 
support generated by it. There are so many instances when people express encouragement or prayers after something I’ve posted. Over and over I’m reminded that we are not meant to get through life alone. Those prayers are truly felt and oftentimes the specific Bible verses or words of encouragement words shared are exactly what I need to hear at that particular time. Whatever your story may be, I hope you don’t feel like you’re alone on your journey and pray that you too can find a solid support system, whatever that may look like for you.
Connect & Find Common Ground
Sharing our story has also led to more connections and more genuine friendships, and in my world, that’s invaluable. That may seem like an odd thing to say since so many of these connections are essentially virtual, but hear me out. I remember the very first time I shared my blog on Facebook, someone commented on my post that her daughter also has CMV. This was the first time I’d ever connected with another parent whose child had the same diagnosis as Gage. Strangely enough, this mom formerly worked with a fellow Tiptonite in another state. So I like to think I 
have my tiny little hometown to thank for this new connection. We’ve since exchanged numerous emails about our kiddos and she has connected me to even more CMV parents online and other resources. It may seem small, but believe me, the simple fact that someone else even knew what CMV was and could relate to similar struggles was a very big deal. It felt like an affirmation that starting a blog was the right move.
Aside from connecting with people I didn’t know before, I think sharing has brought me closer even to those who know me best. Friends who know all about our story are still able to get a different understanding of it through written words which, in all honesty, sometimes really are like my diary entries. It gives them a chance to know more about the things going on with me or Gage that maybe they wouldn’t have asked about otherwise, or I wouldn’t have voluntarily poured out to them. I’m also pleasantly surprised at the way people can use what we’re going through to relate to something in their own lives that might seem very different. I love the chances to learn more about those situations whenever friends open up and share with me. Living with a child with special needs, sometimes it’s easy to fall into the trap of feeling like we’ve got it harder than everyone else around us. I’m especially grateful for the reminders that we have more in common with other families than things that make us different. Our challenges might be unique, but the chance to share with and relate to others helps me keep my perspective in check.
Healing Power & Better Understanding
More than once now I’ve mentioned that sharing on my blog has at times felt like writing in a diary. I’m half joking, but what’s real is that this opportunity to share has been very therapeutic for me. The outpouring of support I’ve seen is a big part of that, but the other part is that by opening up, I gain a better understanding of myself. Watching my son struggle with the simplest tasks, which come so naturally and easily to most other kids, or being faced with tough choices about his care and treatment, can leave me wrestling with my own emotions. Having an outlet to share my feelings helps me sort through and articulate them. That makes it easier for me to talk about them face-to-face too.
Reflect, Count Your Blessings & Use Your Experience
Finally, sharing my story also comes along with forced reflection. I think that goes hand-in-hand with the cathartic benefits of sharing, but reflecting on my circumstances also forces me to count my blessings. I can look back and see the progress Gage has made as time goes on…he never ceases to amaze me! Regardless of the challenges we face, our lives are undeniably filled with so much joy! I think our family has learned to appreciate and celebrate the small things more than we might have otherwise. I still have so many unanswered questions, and know that on this side of heaven, I always will. But I do believe that because of our struggles, I’m a better version of myself–more compassionate and empathetic. Maybe a little more tired too. But I count my changed perspective as a blessing. I also realize it gives me the opportunity to
share in a way that wasn’t clear to me before. Although I still feel unqualified and ill-equipped, perhaps I can use whatever platform I may have to bring a message of positivity and hope that’s rooted in God’s promises. As Christians, we’re not promised an easy life, quite the opposite, actually. But we can trust that Christ desires for us to live life more abundantly and that when our help and hope comes from above, we can find a way to experience joy, even in the midst of pain.
I want to leave you today with a reminder of that photographer’s words…”Everyone has a story to tell and you never know who needs to hear yours.” May you each find your own way to share, whatever that looks like for you. It might not be writing a blog or speaking to a group of people. Maybe it’s simply opening up to a close friend. Or maybe it’s crying out to Jesus to let him know you can’t do it alone and need His help. However you share your story, I hope it helps you as much as it has helped me. Thank you for letting me share with you today!
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” – John 16:33