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By Marie Harrison

For the Clemmons Courier

My daughter was absolutely brimming with excitement, she simply could not wait, she quite literally was counting down the minutes until we had to leave. What had my girl so excited? We were going to meet up with friends, but not just any friends, friends my daughter had met through the rare disease community that we are part of. One of the unexpected blessings of my daughter being willing to open up more about her disease, Friedreich’s Ataxia, and participate in clinical trials, is that we have been thrust into an open and welcoming community. Almost immediately upon joining the parents’ group, I received countless emails welcoming me to the group, offering help and advice if ever I needed it, shoulders to cry on, etc. But one email stood out from the rest, a welcome from a family in Maryland, with a daughter who was preparing to move just a few minutes down the road from us and attend Davidson College. 

Given that my daughter’s disease is rare, only about 500 in the United States, one of my daughter’s biggest requests has been to meet others with FA. As a parent, I try to understand the hardships and daily struggles my daughter must deal with – learning to eat amidst hand tremors, managing the nerve pain in her legs if she stands for too long, knowing when to say “no” because of the fatigue, but as a parent, I realize I only understand about half of the picture. Only someone else who experiences all of these things firsthand can truly commiserate, and this is why my daughter has been actively praying for connections with others “like her.” Getting the email that another young lady with FA was moving just 45 minutes down the road, made my daughter positively light up. She wasn’t alone, and this wasn’t the only connection that was made. Another mom from the parents group also reached out with a daughter, almost exactly one year older than my own, who also lived just 45 minutes away and offered to connect our girls. Pretty soon, my daughter had not one, but two friends, both dealing with FA and these young ladies quickly hit it off over group chats and texts, united by a shared hardship and a stubbornness to overcome.

And this is how I found myself driving to Davidson College on a beautiful, fall Saturday. Over chats, the girls had devised a plan to meet up on a weekend when all of the parents would be in town – the girls would get to finally meet one another face to face and the parents would get to do the same, “it’s a win-win,” my daughter said as she sold me on the plans. And a “win-win” it was. The girls all hit it off instantly, chatting about shared interests in music and food, bonding over shared hardships and the struggle of dealing with “mean girls,” and the parents hit it off too. It was so nice to be around others who just understand this rare disease and all that it entails for our kids and every part of their lives. One of the young ladies texted my daughter earlier in the morning to ask if she would be bringing her wheelchair for the walk around campus, and this young lady remarked how nice it was to be able to ask a question and not have to explain, my daughter gets it. Like this young lady, my daughter can still walk, but for long distances, she uses her wheelchair to conserve energy, and also so she can simply look around and enjoy the scenery, rather than walking head down, trying to navigate every new obstacle on unfamiliar terrain. 

As we drove home from a fabulous afternoon spent bonding and exploring, girls and parents alike, I couldn’t help but think about the value of “just getting it.” These ladies bonded over the fact that they all share this same rare disease and so “they just get it.”

The parents bonded over the fact that we all have children navigating a hardship, we all “just get it.”  And although fully God, Jesus was willing to come to Earth and become fully human so that he too could “just get it.” Jesus felt the same pains we do – loss of a friend, hunger, weariness. Because of His human condition, Jesus could speak with authority about the temptations we all face, He “gets it.” Jesus has street cred. We can trust what He says. He lived our life, He felt our pain, but unlike us, He never gave into temptation or sin. Instead, He put His full trust in God. And because Jesus understands, because He “gets” what it’s like to be human, we should take comfort in knowing we can truly go to Him and lay our burdens at His feet. He “gets” us, all of us.