This past weekend, Jason, Maddi, Jaxon, & myself, made the 500 mile journey to Durham, North Carolina to participate in the 5th annual Florence Fourth Road Race. This was the first time our family had ever traveled out of state, let alone with Maddi and all of her special needs. Jason and I prepped months in advance. We tried to anticpate what the kids would need on the road trip, as well as logistically when we get there. Luckily, the hotel we stayed at was steps from the starting line. A sweet friend loaned us her double stroller. We filled the car with snacks, toys, and entertainment. The trip up took about 12 hours, as we battled some car sickness & stopped to stretch our legs frequently.

We also got the opportunity to stop at The South of the Border and meet up with my Uncle & Aunt who were passing through on their way back to Massachusetts. The journey itself was very emotional for me. The days leading up, I was extremely tearful thinking about what the Florence Fourth was, and how one family’s sacrifice allowed our family love and support. After all, The Florence Fourth and the Autoimmune Encephalitis Alliance wouldn’t exist if it wasn’t for the McDow family, and the loss of their precious girl Florence.

When we arrived in Durham, I had this moment of panic when I realized that North Carolina is not flat like Florida! I had an anxiety attack in the car, “How are we going to walk up hills Jason?!” It was actually quiet comical. I’m a Yankee born Floridian, but have been in Florida so long, I forgot about hills! I just resolved myself to the reasons behind this 5k:

We are walking to show support for those who suffer with this disease.

We walk to honor Maddi’s fight.

We walk to show strength and solidarity as a family.

On saturday morning, we woke up bright and early, bundled the kids up (because it was 26° outside, and headed to the start line.

It was electrifying to see ao many people in one place, united under the same cause. Jason and I were officially registered for the race, and joined the sea of runners and noticed that only a few race bibs were green, amoung a crowd of purple. That’s when we realized Green Bib = Survivors. I’ve never considered myself a survivor. Maddi is a survivor, but later on in the day, it was brought to my attention that Jason, myself, our kids, our immediate family, our dearest friends- we are all survivors. This disease has impacted us too. We have mourned, cried, worried, & lost sleep over this disease. We have tirelessly loved and supported Maddi every step of the way. This is our journey, as much as it’s hers.

As the race began, Jason and I powered through. We encouraged one another up the hills. Cheering other racers and waving to onlookers. As we passed through the beautiful residential neighborhoods, Jason teased me and my love for HDTV as I pointed out all the different architecture in the old homes. At each mile marker, I choked back tears as I realized I was ok, and suddenly in that moment, I realized how this race was very much like the hurdles we’ve faced in this journey with Maddi. I was so anxious and worried about this race, and whether or not I’d be ok, but there I was, keeping an 18 minute mile and conquering something I was so scared I wouldn’t be able to. When we crossed the finish line at 60 minutes, Jason and i exchanged high fives & I cried tears of joy. It’s funny how small things can have such a big impact. We’ve been through hell and back this year, but I knew then, on that cold, clear Saturday Morning, 500 miles from home, that everything was going to be ok. Maddi would be ok. We would be ok. We’re survivors

After the main race, Maddi was anxious to participate in the “Cape Dash.” When Florence was sick and in the hospital, she would always wear a superhero cape during treatment, so this part of the race was in her honor. Maddi was eager to participate, and we stood on the sidelines and watch her run, her cape flapping in the breeze, joy across her face.

On this day of remembrence, I felt joy that my sweet girl was alive.

The rest of the afternoon was spent meeting other AEA Families at the Family Lunch. Hearing their stories was inspiring. One parent said something that really resonated:

 

 

“We’re not survivors, anyone can survive something. We’re conquerors.”

During lunch We sat with a sweet older couple from Virginia, and learned about their journey. Joe was diagnosed back in 2001, and relapsed in 2013. I’ve never spoken face to face with an adult who battled this disease, I’ve only read  Susannah Cahalan’s memoir, so hearing from an articulate adult was so humbling. It made my heart hurt so much for Maddi, knowing the pain and confusion she went through. We met the faces behind the AEA, and learned about all the ways they help Families who are living this disease. We also had a chance to chat with a few ladies who recognized Maddi from this blog! I’m so glad our story can reach others, and I only hope going forward we can find a way to put our pain to use into something great, just like the McDow’s did, and like many others do with various support groups.

Since we’ve been home, I’ve reflected greatly on this past weekend, and how much my weary soul needed that trip. Even though we spent almost 24 hours in the car, dealt with lots of car sickness, whining, sore bottoms, and limbs that fell asleep, I can not wait for March 3rd, 2018 when we’ll make that 50o mile journey again to honor Florence, The McDow’s, Maddi, & all of the other Autoimmune Encephalitis Conquerors!

…will you join us?