Our Turn

It’s taken me a while to wrap my head around this, so let’s start at the beginning:

Our 6 year old son Cooper has a rare, progressive disease called MPS IVA. It affects every organ of his body (except his brain), and has SEVERE skeletal implications. We are blessed to have a weekly infusion to slow/stop the progression of the damage to his organs, but the only way to address the skeletal issues is with surgery. It’s time for the first Orthopedic intervention.

Cooper will have surgeries on both hips, knees and ankles in June. This will relieve the constant pain in my first grader’s hips and knees and keep him mobile for a while longer. The surgeries will be done by Dr. Mackenzie in Wilmington, Delaware. He’s the orthopedic expert on Cooper’s condition, so that’s where we’re going.

The surgeries will be one week apart. The right hip, knee and ankle first, followed by the left hip, knee and ankle seven days later. This procedure will leave Cooper in a spica cast, from his chest to his ankles, for seven (what I imagine will be grueling) weeks. We will fly home after the second surgery. Cooper and I are booked first class on United on the way home, so that he has room for his new “width” with the spica cast. The rest of the family gets to fly coach, or swap me seats when I need a break. After seven weeks, we fly back to Wilmington to remove the cast, a check-up, and five days of intense Physical Therapy. Then we fly home again, ready to strengthen and use those new legs, just in time to go back to school.

This surgery will be FREE! HA! Only because we meet our out of pocket max for Cooper in the first week of the year, due to Cooper’s weekly infusion cost.

Getting to the surgery will not be free. We’ll fly the whole family out there, and we’ll stay for 2 weeks. We could have stayed at the Ronald Macdonald House for free, and we chose not to. I am either going to be at the hospital with Cooper, or hiding in a 2 bedroom apartment we’ve rented. I’ll pretend to be a normal mom hanging out in Delaware for a couple weeks. I plan to work for a couple hours a day while we’re there – mainly for a sense of normalcy, and to keep my mind (and inbox!) from imploding. Brian will work too. Campbell is too much of a support to Cooper to leave her home. We’re bringing my mom. Her help with Campbell, Cooper and keeping us moving will be invaluable during this time. These are the choices we’ve made, and they’re costly. We are ready to sacrifice to afford this journey.

Friends and family ask, “How can I help during this time?”

  • Pray for us. Pray for healing, strength, grace, patience and creativity in entertaining Cooper. I am partially terrified of Cooper’s reaction to being immobile for seven weeks. He is such an active kid. He LOVES sports – hockey, soccer, basketball, baseball, riding his bike. My worst fear is that he falls into some sort of depression because he can’t do the things he loves. But at the same time I have faith that Cooper will show US the way. I think he’ll show us what he can and can’t do, and we’ll learn together what fun he CAN and WILL have this summer. I’m willing to load him up and take him and his reclining wheelchair to all sorts of sporting events, museums and the zoo.
  • I hope visits from friends can entertain him and cheer him up. But, I am nervous that Cooper’s new condition will make him embarrassed and not want visitors.
  • I’m sure we’ll have a sign up to bring meals for our family when we return home, and I’ll share that when it happens.
  • Check out our registry. If that’s how you’d like to help, we thank you from the bottom of our hearts. Feel free to share it with your friends/family/social media. I swallowed a ton of pride to put it together and share it. Today we were denied by an organization that “provides children and their families free flights to distant, specialized care and valuable second opinions” because we make too much money. It felt like a slap in the face. We work our asses off to provide for our family. I work my ass off in advocacy, fundraising and volunteering for organizations that can make a difference in the lives of families like ours. At the same time, I understand need based awards. Why am I so mad/sad/insulted? Maybe I should put my therapist bills as an item on the registry too!? (In retrospect, I’ve determined I’m so upset because of all the time I spent on the application.) In other news, we applied for medical travel assistance from the MPS Society, and their award is not contingent on income. We are very appreciative of the Society’s support financially (if it get’s approved), the valuable medical information we’ve learned over our years as members, as well as the connections we’ve made who are helping us hold it together and make decisions during this time.

Bringing it back to now – Cooper knows he’ll be in a wheelchair for a majority of this summer, but he doesn’t know the extent of the cast and his immobility. We’ll share the details with him closer to surgery time. No reason for him to get all worked up about it – like me.

Anyway – I’ve shared all this because if I’m asking for money, I want to be transparent. This is where we are. We’re ready to foot the bill because of the choices we’ve made. But if you want to help financially, I am humbled and we are very appreciative.

I’ve been fundraising for different things for the past 10 years, when is it OUR turn? Today.

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.