“That Was the Best Day Ever”

I can’t help but think we’re approaching the top of a roller coaster ride right now. Things are really, really good. (Yep, I actually knocked on wood as I typed that.)

We’ve got Cooper’s wish trip coming up. Only a few days until we leave for Walt Disney World! Cooper has been marking days off the Calendar since January 1st.

To say we are thrilled is an understatement.

But that’s not the only thing going on this week – yesterday at the hospital we celebrated Cooper’s 5 year anniversary of being on VIMIZIM, his weekly infusion. And ya know what he got to do? Ring the Warrior Bell. Yes! That Warrior Bell that was only for the kids done with their chemotherapy. The celebration was the brain child of our FABULOUS nurses and child life staff at the hospital. I’m afraid my words and pictures won’t do it justice, but I have to share how loved and special Cooper (and the whole family) felt today. It’s just too good not to share.

If you’ve seen pictures of us at the hospital, there’s a good possibility you’ve seen Cooper playing hockey in the hallway – while hooked up to his infusion and my dad nimbly following Cooper and maneuvering his IV pole through a hockey game. This is Cooper’s favorite activity right now – whether it’s at the hospital, in our basement, in our backyard, in Grandma’s kitchen or Great-grandma’s back porch. HOCKEY ALL THE TIME! So of course our Children’s Hospital friends not only named the infusion center “Cooper Stadium” today, but there were goal creases, two blue lines and a center red line in our hallway today. It worked perfectly, because we brought 2 goals, 8 hockey sticks, Cooper’s set of goalie pads and 20 friends. GAME ON.

Check out the epic Hockey game here

We paused the hockey game for a bit so that our hospital friends could surprise Cooper with the ceremonial silly string, a gift, cake, and even a “Zamboni”!!! Or close enough to a Zamboni – the machine they use to clean the floors. Cooper loved his ride on the Zamboni around the infusion center! (If you look closely, you can see Cooper’s room in the background, with a sign that says “Cooper’s Penalty Box”)

Then it was time to do what has always alluded us – it was time to ring the Warrior Bell. The inscription on it had been personalized for us today. The words were PERFECT.

I’ll spare you the video of me trying to read this out loud, but I’ll promise you it wasn’t easy and the next time, I’m going to go to the bathroom and practice it a minimum of 10 times before it’s time to do it in front of everybody. Then maybe Cooper won’t get embarrassed that mommy is all choked up, and he’ll want to proudly ring the bell instead of bury his head in my arms. But I’m OK with that. It’s who we are and where we are in our journey – still clinging to each other when we are scared.

So we moved on to the cookies mom made and the cake. We laughed and the kids played more hockey and we finally left. As we got into the car Cooper proclaimed, “That was the best day ever!”

But of course we didn’t go home, although I was emotionally spent and just wanted to hide under the couch. We went to Chic-Fil-A because Cooper LOVES it and it just so happens that it was our elementary school’s night there for a fundraiser. So we went and ate delicious chicken, visited with friends, played in the playroom and was immersed in our community.

Even this morning, Cooper came running out of his bedroom, carrying the balloons that were on the Zamboni, singing “I’m so happy! I’m so happy!”. My jaw is sore from tensely clenching at night, worried and anxious for Cooper’s upcoming surgeries this summer. But for now I’m going to be mindful of where we are at NOW and soak in the happiness.

Five

Five

Five. Years.

Five years since diagnosis. Jan 30 2014 was our version of 9/11. The day everything fell apart. The day all our hopes and dreams for our 16 month old baby boy were snatched. Cooper didn’t know any different, but all of the sudden, I was waking up with tears in my eyes, and they were different tears than those I had cried as I attempted to fall asleep the night before. It was a long, tough, painful, sad, scary time. The past five years have been a whirlwind of doctor appointments and infusions. Thankfully I have forgotten that feeling of despair. As we moved forward and found our way, we also found laughter and joy in our new normal, because Cooper is who he has always has been – a sweet, funny, loving, larger than life little boy. Cooper has taught me patience. To have faith. To let go. I’m learning that I’m not in charge of everything. Our journey continues as this summer rapidly approaches, with Cooper’s bi-lateral lower extremity reconstruction (fixing both hips, knees and ankles) surgery and it’s daunting 8 weeks in a spica cast (from his chest to his ankles) and recovery. Oh, by the way – the surgery is 1700 miles away from the place we call home. I’m turning the page to a new chapter of what Cooper will teach me. I can’t imagine what the next 5 years will bring, but I am ready, with an open heart. Show us the way, Cooper. We love you to the moon and back.

A glimpse of life 5 years ago

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.

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.