Month: June 2018

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.