My broken-hearted note to Cooper

Cooper,

I’m sorry this is your reality. I’m sorry you feel helpless, sad, angry and what must be a maddening feeling of not being in control of your own body.

Today when we accessed your mediport for infusion, you fought against us – as usual. But what broke me was when you cried in my arms afterwards, and you said you were sad and you didn’t know why.

You see, usually you can be distracted and pop out of the fit, and are ready to play or watch iPad. But not today.

I’d like to venture a guess why you were sad. You are being robbed of your childhood. You are learning that life isn’t fair. You know what it’s like to be different from your peers. You are made to do something that terrifies you every week. And you are only 6 years old. That’s a hell of a lot to process when you are still learning the difference between long and short vowel sounds.

It’s a crazy juxtaposition that we had such a great day together at infusion. We played on two different video game consoles, did one homework assignment, played with alien slime and Bunchems. You created a construction paper jack-o-lantern with Grandma. Then you and I played soccer, a bit of football and 500 Dead or Alive (where you continually made up rules) with Papa. You were so full of life and light. We had fun today.

This evening after infusion you were FULL of energy! Enough energy to be preoccupied with a ball to the point that communication with you was pointless. You were energetically pushing your sister’s buttons. Threats of “no bedtime books” was the only way you’d get your PJs on.

But then it happened again. As you were trying to fall asleep, you were sad and didn’t know why. So instead of struggling with sleep and the thoughts in your head, we went out to the couch and joined Daddy in front of the Avalanche game, where you finally unwound and gave in to sleep.

My heart constantly hurts, watching you navigate the tough parts you’ve been handed. But my heart fills up watching you proudly practice handwriting, pretend to be the referee in a hockey game, do commentary as Campbell jumps into a pile of leaves, and play the drums (as well as a million other things).

I pray that the things that fill up my heart, fill up your heart too, and that they can pick you up when you can’t put your finger on what’s sad. I will find tools for you to deal with these feelings – your mama needs to refresh these tools too.

Sleep well sweet boy. Enjoy those hockey dreams, for morning and the rush to get to the school bus will be here before we know it.

Passion

Cooper lives every day with passion. Recently, sports passion. Every day is a new day to set up the bases in the back yard and play baseball. Every day is a day closer to his next T-ball game. Every day is an opportunity to veer the car from our intended destination to stop and watch a baseball game in progress as we drive by any school/park/ball field.

Last week was Cooper’s first T-ball game. Nevermind he’s been playing baseball in the yard for over a year, and his last birthday party was at a neighborhood ball field where we could play baseball on actual dirt, with a real pitcher’s mound, bases and stands. This 5 year old can throw, mimic a pitcher, catcher, and can make contact with a ball that is pitched. He loves to run the bases. He’ll keep score, and keep track of “ghost runners” when we run out of players. He loves the game, the sequence of events and all the parts that go into it. When in our backyard, he’ll sing the national anthem before the players come onto the field from their dugouts, which are labeled in chalk on our back porch – “home” and “visitors”.

Seeing Cooper light up last week as he chatted with his teammates, then proudly hit the ball and ran the bases, reminded me to enjoy, share and cherish the good parts of my time with Cooper – to enjoy the time he can fit in as a typical kid.

He loves baseball so much right now that our bedtime story tonight was simply a list of every World Series Champion, and who they beat. No real plot there, and it took much longer than the average bedtime book! Alas it was a fun read to see the history of which teams started in different cities, as well as the teams who lost the Series sometimes coming back to win the following year. We stopped to chat about those items, as well as any teams we’ve seen in person or favorite teams of family members.

Cooper’s T-ball team is coached by none other that his Daddy, Brian. When I told Cooper that Daddy was going to be his coach, Cooper cheered and jumped for joy! And then the planning started: “Daddy and I will ride in the same car to the game, because he’s my coach” and at dinner, “I’m going to sit on this side of the table, next to my coach.” And on and on.

We are blessed to have Brian. This Daddy is patient, upbeat and can handle the energy, awkwardness, and lack of attention of the team of eight five year olds.

For those of you unfamiliar with a T-Ball game of Kindergarteners, let me paint a picture:

  • First, the defensive team has several parents in the field, to remind the kids to spread out, watch for the ball, and stop playing in the dirt.
  • Next, there are repeated attempts by the at-bat team for the hitter to hit the ball off the tee.
    • After successful contact with the ball, the batter usually needs to be reminded to run to first base. This follows with much pointing, yelling and arm waving (on behalf of of every parent, coach and older sibling) to direct the now runner in the direction of first base.
    • In the meantime, every child on the defensive team (who wasn’t playing in the dirt) runs to get the ball – even the kid standing on third base who is now battling the first baseman for the ball rolling behind second base. They haven’t figured out it’s a team sport yet, and there is must jockeying and sometimes pushing to get to the ball first.
    • With the help of coaches and parents in the infield, the ball gets back to home plate and the process starts again.
  • Now that we have a runner on first base base, we are back to getting a successful hit for batter number two.
  • Another successful hit, and every child on the field – including the runner on first base – will chase the ball. You get the picture….

The good news is, there are no outs and everyone gets to hit and run.

It’s so great to watch the kids learn, together, in a supportive environment. I am beyond thankful that Cooper can participate and is loving it. It’s a little piece of “normal kid life” we will cherish forever.

Gut Check

I feel ashamed that someone else’s pure joy causes me such sorrow.

Today at infusion, I noticed a family with balloons, flowers, and lots of visitors. My mind tried to convince me, “it’s the little girl’s birthday”. But when they gathered in the corner outside our room and I heard the warrior bell ring, my heart knew the truth.

When I’ve heard the bell in the past, it brought tears of joy. Happiness and a sense of relief for the family that gets to move on to the next chapter with their little warrior. Today Cooper heard the bell, and said “what’s that?” I explained it was the warrior bell, and that the little girl got to ring the bell because she’s finished her last chemotherapy treatment. Cooper wanted to ring the bell. Through tears I told him he’d never be able to ring that bell. I was angry, sad, frustrated. I started to remind Cooper that his MPS diagnosis is life long, but when I looked at Campbell, she said, “You can ring it when we find a cure, Coop!” I high-fived Campbell for bringing the sunshine back into our room and sucked back my tears.

So I’ve been in a funk all day. It’s like I’m reliving diagnosis all over again. Wait, this is LIFE-LONG? For the rest of my life, and more importantly, for the rest of Cooper’s life, he’ll have infusion once a week. He’ll visit many, many specialists. He’ll have pain, probably several surgeries. He’ll look different. He’ll feel different. All things that make a mama’s heart hurt.

I just want him to ring that damn bell, I want him to be free. Time to work harder for a cure.

Tonight two of Cooper and Campbell’s cousins are over for a sleepover. They were all giggling in the room, tossing and turning, until they finally gave in to sleep. Campbell and the cousins see Cooper as Cooper, a sweet, passionate, sports loving, funny 5 year old. I need to pause and etch this picture in my mind: He’s a kid, who played with friends outside until dark, snarfed down homemade cookies and is enjoying a summer time sleepover, just like other little boys his age. This is what I want, to see him as Cooper, not the kid with a life long, devastated disease.

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.