It’s Rare Disease Day! Today, we share this post by our Featured Blogger Kaylee Page in recognition of all families living with rare disease. We see you and send our support!
My alarm went off for the seventh and a half time. I was so deeply buried into the process of waking up and hidden so far deep into my covers that I could barely hear the voices in the next room over already awake and alive in their day.
Nico, a two year old with slick brown hair and sassy brown eyes, and his mom, Alicia, moved into my home this week. Nico has FPIES and another tricky medical word to pronounce, and it makes food and life and thriving all incredibly difficult. He is here in Grand Rapids, MI to meet with fancy doctors and knowledgeable therapists to help navigate his body.
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His days are full of new and unknown as they strap him to a highchair for feeding therapy sessions. His evenings are also full of new and unknown as he wanders and explores the halls of my house, climbs newfound stairwells and attempts to be a curious and playful toddler opening every door knob he can find, pulling cords out of the power socket just to watch the light go off, and grabbing at everything in sight just to touch it, experience it and discover it. Toddlers are endlessly curious and ongoingly on the go. It’s their passage into knowing the world, but it can feel like a parent’s passage into insanity.
New is hard and scary and super uncomfortable. And we can’t always rest in seasons of new because at first they feel really itchy and they make us want to crawl out of our skin or run back to that place that felt normal and safe. And so it goes, that Nico isn’t sleeping awesome and he’s wide awake when the rest of the world is sleeping. He arises super early, probably in some attempt to buy himself a little time to look around and adjust to this newfound place, trying to make sense of it all.
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Through muffled walls I can make out, “Nico, no!” Alicia’s voice mandates an immediate, insistent stop to his whining. He is tired. She is even more so.
“No, Nico!” She continued, this time it was as if her voice was begging him to just stop for a minute, to just stop being two. If he could just stop for one half of a second maybe she could put on a sock.
Alicia attempted to carry on the rigorous process of getting both herself and a toddler ready and out the door, trying to dress not just her own two feet but the other two little feet in need of assistance as well. As she moved through the moments, I heard her start singing to Nico. I couldn’t make out the melody or the words but the sound was so sweet and tender, her voice absolutely, astoundingly beautiful.
If she only knew, I thought, if she only knew how beautiful she is, how strong and incredible she is. If she only knew I see it all. She is doing it one step at a time, one hard thing at a time. She is amazing. She is a warrior!
For a brief moment, I saw myself in the same shoes. Hurrying and rushing through my day, hating myself along the way, apologizing for the ways I deeply wished my own daughter or my own life would just STOP for a brief minute so I could catch up to it. How quickly the moments pass and how quick I am to feel I’ve failed so many of them.
All of a sudden, I snapped back into observing Alicia. And I felt like I was seeing her as a witness.
If she only knew, the voice repeated. If she only knew how welcome she is in my home, how much I love it all. If she only knew that to have love and life in my home is a gift. If she only knew I saw her not as one perfected being but as a beautiful being doing the very thing of being. She’s doing so well at all of it. All the balancing, all the new, all the stressful and exhausting and hard. And she still finds moments to sing!
It’s the weekend. Nico and Alicia are back on the other side of the state, back in the comfortable place of routine and back in the arms of those who’ve stayed back to hold the other pieces of their family’s life together. Alicia calls these people husband and sons. Nico calls them daddy and brothers.
They’ll return tomorrow evening to the discomfort and noise and chaos of therapy. They’ll return to do beautiful and strong and incredible all over again. And once again, I will get the gift of being their witness.
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To the warriors and the fighters, to the mothers and the fathers, to the Nicos and Alicias who do FPIES every day, I see you. I see you from afar, and yet having gone this journey myself, I see you from a deep, intimate place of having walked a mile in your shoes.
And so it is, as your witness, I say to you:
Well done. I see you. I see the storm that seems never-ending, I see the ongoing chaos, the weight of food prep and the loneliness of saying the word FPIES one more time to ears who are trying to listen but could never actually hear that which is the journey of FPIES.
You are beautiful. Your beauty is the countless puke you’ve cleaned up, the brief moment you pause to rub you child’s back. Your beauty is in the ten-minute search for your child’s pacifier because after a long day of tears for everyone and watching your child do really hard, brave things you would do anything for your baby to feel a moment of comfort.
You are strong. Your swords are internet searches, gut intuition and speaking out loud one more time that your child is not okay and you know it. Your strength is in the never-ending ongoing doing – you are toned and refined in body, mind and spirit even if you don’t yet have eyes to see this transformation of self.
You are incredible. You’re doubting me as you read this but hear me, incredible means impossible to believe; and believe me when I say it is impossible to believe that you go so many sleepless nights and get up and do it again. It is impossible to believe that you face the very inner tension and fear of giving your child a food that could nourish or harm and yet you do it again… and again… and again.
I think I applauded Alicia from under my covers that morning.
And by the end, I’m pretty sure I was giving her a standing ovation atop my comforter.
Today, I do the same to you.
