February 14th means a lot to me.
4 years ago today, we were blessed to graduate from Team Training with Velocity, Cooper’s Service dog from Canine Companions.
10 years ago today, VIMIZIM was approved by the FDA for the treatment of MPS IVA. Cooper was diagnosed with MPS IVA in January of 2014, so we’ve been strapped into this rare disease roller coaster for a decade now.
Velocity is the first household member to wake every morning. This morning she waited until she heard my alarm to greet me at my bedroom door. I was so excited to rub that wiggly, tail-wagging butt this morning. It’s the anniversary of our “gotcha day”, and every day I am more thankful for her sweet soul, what she’s done (and continues to do) for Cooper and the joy she brings to the whole family.
Remembering our first plane ride home with Velocity, I started thinking about all the other plane rides she’s had – to all the surgeries, as well as a couple vacations and hockey tournaments. I remember being so concerned for her first few plane rides – did she need to pee? Is she comfortable? Is she disturbing anyone? Now she’s the least of my worries and by far the easiest member of our family to travel with.
Thinking about all that Velocity has seen Cooper go through – four surgeries, hundreds of infusions, dozens of appointments. Makes me wonder what else she’ll see – what else we’ll see – what else Cooper will endure. We don’t know. We have ideas, but we don’t know. That’s the nature of this roller coaster.
I’d like to say I’m a pro at this roller coaster by now. But I’m not. My stomach rolls when there is talk of possible medical interventions. I cry watching friends navigate their rare disease journies. I’ve learned that sharing our journey is therapeutic for me and connects us in ways I didn’t know we needed.
Today I am grateful for where we’re at. It’s been hard. I pray we can continue this roller coaster with the smiles, prayer and good fortune we’ve had thus far.
Rare Mom Life 