Reflecting on Rare Disease Day on Capitol Hill

This last February, I participated in Rare Disease Day on Capitol Hill. For Rare Disease Day – February 29th (the RAREST day of the year or the last day in February), rare disease advocates visit their legislators asking for NIH funding, we asked for MPS related language in the Appropriations Bill, and voiced our support of the OPEN ACT. This was my second trip to DC to participate in Rare Disease Day on Capitol Hill. It was logistically easier than the first time, but the second time provided emotional challenges I didn’t expect.

After my appointments with my legislators, I aimlessly wandered around the park outside the Capitol. I had done everything I came to do. I knew I wanted to take the following photo, and it surprised me that I had to choke back tears when I pulled out my “I advocate for #SuperCooper” sign.

I stalked a couple of older gentlemen lingering in front of the Capitol, and judging from one of the guys’ Wyoming baseball cap, figured they’d be friendly and help in my quest for a photo. Turns out one of them lived in Littleton and went to my rival high school. Small world.

This was my first take of the “I advocate for #SuperCooper” photo. Photo credit to the Wyoming guy and the Littleton guy, who should not be in charge of tourist photos, as evident by the landscape crew who appear to be standing on my head.

After parting ways with my photographers, knowing I would take a better photo later, I put my phone away and just stood there, dumbfounded. The tears were back, in full force. What was this emotion? Was I proud? Sad it’s over? Missing my family? In an attempt to clear my head, I aimlessly walked some more.

I’m a glass half full person, always have been. Telling our story – Cooper’s story, every time – it takes me back to reality. “Cooper is suffering from a rare, progressive, life limiting disease.” This is what I told every legislator I met with. As I see the other person’s face fall when I describe my 5 year old’s pain, and what is happening to his organs and his skeletal system, I bring them back up with, “He’s the biggest sports fan I’ve ever seen”. I regale them with tales of playing football, hockey and baseball in the hospital’s hallways on infusion day. Then I move on to how we are blessed that Cooper’s disease is one of the 5% of rare diseases that have a treatment. And I have faith the treatment is helping his organs. We’ll address the skeletal issues with big, scary surgeries. But we’ve still got Cooper, and he’s loving life. So I leave the legislators on a high note, because that’s who I am.

On this trip, I had time to sit and connect with parents who aren’t so different than I, but their son or daughter can’t play sports anymore, or is fighting for their life, or has gained their angel wings. The reality is back, and it can’t be fixed by a quick change of subject to Cooper’s sports craze. It’s amazing and inspirational to see the light that these parents bring.

In sharing with the other parents, we were often surprised when we heard they had OTHER kids! Unaffected kids. And then we cried together over the guilt we felt for overlooking the unaffected sibling. I am certain those siblings are going to be fine. Dealing with a rare disease brother or sister has given them a skill set that life doesn’t usually hand out.

I tried to digest all these thoughts as I wandered through the park. I realized that in order to get what we need for Cooper, and others like him, I must strip away the smiley emoticons, and remember the terror of diagnosis. I must share the tragedy of a rare disease. I need to be real. And the simple motion of pulling the sign out of my purse and reading the words made it all very real again.

I advocate for Cooper. I advocate for MPS families. I advocate for Rare Disease.

Photo credit: young lady who was snapping selfies and complimented me on my tennis shoes (that I have cropped out of the photo)

So for life in general, the optimist can come out and we move forward in a happy place. But when the medical decisions get difficult, when we need help from our elected officials, and when we work on how to support our MPS families, I know what the truth is, and how to address it.

Feeling Broken on Mother’s Day

I’ve been really high on life lately. The house project is coming along, we are all healthy, I am enjoying my work, we have a wonderful summer ahead. Summer break is prefaced by Cooper’s IEP meeting. Cooper, my 5 year old son with a rare disease, is loving school and thriving. The biggest things we talk about about at the meeting is the implication of Cooper’s short stature, and how we need to modify parts of school to accommodate him, as well as his cervical stenosis, and how his “special neck” is a concern in a environment full of children who often physically interact. We talked about more items, but this is what sticks in my mind. Cooper is different and fragile. I am reminded that Cooper misses an afternoon of school each week in order to go get his infusion at the hospital. We’ll be doing this again next year, and the next. And on and on, as his infusion is a treatment (not a cure), and it’s for the rest of his life.

Long ago, in a galaxy far, far away a co-worker often expressed to me “what a great mom you’ll be”.

Mother’s Day hits. I feel pressure to “have a great Mother’s Day”. But my feelings are bigger than the day. I take my son to infusion once a week and literally hold him down (kicking, screaming and crying) while we stick a needle in his mediport to give him a life changing drug. Then we hang out for 5 hours, watching Star Wars, baseball, hockey and You Tube until I have to hold him down again to take the needle out. He misses school, I miss work, I miss occasional special things in my daughter’s school day, and we do it all again next week. Is Cooper going to resent me for this? I don’t know. Worth the time, expense, pain and suffering? I believe so.

Through Cooper’s diagnosis, I’ve become connected with mothers who don’t fight their kids for infusion, because their kids have lost the battle to their rare disease. I feel survivors guilt. I see moms whose kids need more care than Cooper. I know these ladies wear capes under their “Someone I love needs a Cure” t-shirts. These moms are amazing souls, full of light and life. I am blessed to connect with them and share in their stories. They motivate me.

Then there are the friends whose mother’s have passed. I think of the recent loved ones who have passed, but really, how long until Mother’s day doesn’t sting for those friends? I’m betting never. Survivor’s guilt again.

Long ago, in a galaxy far, far away a co-worker often expressed to me “what a great mom you’ll be”. I was full of crafty energy and silly fun and loved playing with her kids – all kids. 20 years later, I’m wondering what happened to my former self. Yep, parenthood has changed me. I’m tired, what parents aren’t? But I feel broken. Often, kids make me nervous now. A room full of kids at school? Only after a Xanax, thank you. A bus load of kids on the way to a field trip? Nope. Learned that lesson. Not enough Xanax for that one.

Babies!!! I was always good with babies! Who doesn’t love a baby? Me, apparently. After Cooper’s diagnosis, it took me years to look at a baby and love the baby for who they were – not for the reminder of Cooper before he was diagnosed and our life was partially shattered.

So instead of all of this running through my head on Mother’s Day, I’m going to just pass. I’ll focus on other mothers – my mom, my Grandma, and make their day special. Because my head/heart is having trouble reconciling my role as a mother.