This year, we had a great time at the MPS conference; a much different experience than Disney. We attended our first MPS conference 2 months after our diagnosis, so seeing older children with Sanfilippo was difficult. Instead of seeing them as people, at Disney, all I saw was Jayden and Brooklyn’s future. It was hard. A mother stood up and held a picture of her son that passed away with Sanfilippo. Not to mention, all the wheelchairs, feeding tube conversations, and children making noises was, well…uncomfortable and sad.
We joke now that we were like deer in headlights and can see the same look on newly diagnosed parent’s faces. I can’t find the words to describe it. It’s kinda like the high dive at the summer pool. Slowly you climb. You totally don’t want to jump but know you have to. You are standing up there, like deer in headlights. Everyone that jumped already is telling you to jump. You look down. Everyone else did it and is ok. Why are they not scared? They are even laughing and having fun. You think to yourself, I have to jump cause standing her sucks. It’s terrifying…but as summer ends, you have mastered the dive. Sure, there is always the first time. But for the most part, you don’t even think twice about the jump…in fact, you look forward to diving in and swimming with all your other friends in the pool. But, every time you see that new diver, you are reminded of that feeling of the first jump. Well, kinda like that, I guess.
This time, the conference was healing. I had a chance, now settled into the MPS world a bit better, to look past Sanfilippo and see the beauty in each individual child and their family. We met so many WONDERFUL people who share this rare journey. The parents, siblings, other family members and friends inspire me. The children, Julia, Logan, Quinn, Jake, Lucas, Isabel, and many others are simply beautiful. They each have their own personality, but they all light up the room. The “weird” behaviors are now normal, and actually endearing. Like Julia, sitting on Jut’s lap and trying to put a rubberband on his head. I love her smile. Or Logan’s fog horn; it makes me smile. The daycare is full of Jayden and Brooklyn’s—it’s probably how “normal” kids parents feel when they drop off their kids.
I love feeling normal, and this weekend we exist in this little bubble where we create a bit of normal for each other. I don’t have to explain that Jayden is a runner-there is Jerry standing guard at the door. I don’t have to tell them he chews-everyone in the room does. I don’t have to bring a laptop to play a movie to keep him settled, there are 5 big screens and a movie playing. I don’t have to work about telling them Jayden doesn’t sit still, listen to stories, or do anything a unaffected five-year-old does. I also don’t have to hand them a medical sheet to explain Sanfilippo-they all live it everyday.
Although there is still a touch of sadness when I think of Jayden and Brooklyn’s future, I am reminded of Scripture that talks about worry and future plans…and how trusting God in those times is what I am called to do. He is in control, so I really just need to leave it in His hands when I start worrying about losing Jayden and Brooklyn. Phil 4:6-7 in the Message says,”Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life.” Or in Matt 10:28-30, where it talks about not being afraid. “Don’t be afraid of those who want to kill your body; they cannot touch your soul. Fear only God, who can destroy both soul and body in hell. What is the price of two sparrows—one copper coin? But not a single sparrow can fall to the ground without your Father knowing it.” And Mt 6:25-26, “If you decide for God, living a life of God-worship, it follows that you don’t fuss about what’s on the table at mealtimes or whether the clothes in your closet are in fashion. There is far more to your life than the food you put in your stomach, more to your outer appearance than the clothes you hang on your body. Look at the birds, free and unfettered, not tied down to a job description, careless in the care of God. And you count far more to him than birds.” I love Mat 6:34 34″Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.”
We skipped many of the sessions to hang out with other families. It was the best part of the conference. We are grateful that there is a place to meet other families and research being done to help our children. The next conference is in Boston, anyone want to go? You’ll never look at life the same.