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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

Flip the calendar back to June 2010. It was a typical hot Virginia weekend and the baseball season was in full swing. I was in the stands as a proud parent and my husband was on the field as an assistant coach. Our son, Nicholas, 7 years old at the time, had made his first all-star team – the Super 7s. Looking back at it now, he was so little; but what he lacked in size, he made up for in heart. There was never a more excited boy than Nicholas when he got the call that he had made the team.

Shortly after Nicholas was born, he was diagnosed with severe hemophilia. With no family history, we were completely blindsided by the diagnosis. We barely knew what the word meant – but we quickly learned after numerous spontaneous bleeds. At eleven months old, Nicholas had a spontaneous epidural bleed. After a lengthy hospital stay and having a port-a-carth implanted so that he could start prophylaxis, our life somewhat settled down.

However, we still had no clue what this diagnosis would mean for Nicholas. Should we keep him in a bubble? Could we keep him in a bubble?! It didn’t take long before we realized the answer to both of those questions was NO!

My husband and I loved sports but we knew that some were simply off limits for Nicholas. We both grew up in baseball families, so it seemed a natural fit. However, baseball didn’t come natural to Nicholas. Starting with t-ball, Nicholas had to work hard. With a mid-April birthday, and an age cut-off in May, Nicholas was always the youngest, and smallest, kid on the team. Tracy_Nick_Moms Blog

The Super 7s were playing in their first all-star tournament and the team was 2-0 going into Saturday afternoon’s game. Win or lose, they would be playing on Sunday in the semifinals. Nicholas had been playing second base throughout the entire game and going into the sixth inning, the Super 7s were winning. Just as the sixth and final inning was about to start, our pitcher complained he wasn’t feeling well from the heat, and Nicholas went in to take his place. At that age level, the pitcher doesn’t actually pitch but rather defensively plays the position alongside the opposing team’s coach. Nicholas had practiced this position before, so while it wasn’t his usual starting position, he wasn’t exactly a fish out of water. Truthfully, he didn’t care where he was on the field – as long as he was on the field.

What had been a wonderful day for this new group of all-stars, changed in the blink of an eye, with one swing of the bat. The ball came off of the bat so quickly, Nicholas simply could not react fast enough. He was hit squarely in the eye with the ball. The next thing I knew, Nicholas was on the ground and I was racing to the car to get factor (which thankfully I remembered to bring!) I’m not sure what made me think I was going to be able to infuse him, given the circumstances, but I gave it my best shot before we took him to the hospital.

Nicholas’ first words were “I’m never playing baseball again!” I was concerned for his health but heartbroken at the same time. So many wonderful memories had been made at the ball field, so much determination had been exerted for him to even make the team. Simply put: he loved baseball!!

Nicholas was transported to our local children’s hospital where it was determined that there were thankfully no broken bones, but unfortunately both his eye socket and sinus cavity were filled with blood. We had never seen an eye so swollen! And as if he needed it, he had stitch marks from the ball on his face to prove what hit him!

It didn’t take long before his baseball-loving spirit came back, though. One of the other coaches even brought him the “MVP” game ball! At this point,though, we had to explain to the head coach what hemophilia was and our reasoning for not telling him sooner.

Nick 2As any parent in our community knows, there are any number of reasons for not sharing their child’s condition when first meeting community leaders like teachers or coaches. It’s hard to keep educating people on bleeding disorders and addressing the same old questions. You also wonder if your child will be treated differently because of his or her condition. But most of all, there is a desire to respect your child’s privacy, to let them tell their own story.

Nicholas had always been very private about what he shares with his friends. He never wanted to be known as the kid with hemophilia that played baseball. He simply wanted to be known as the baseball player – just like everyone else on the team.

When his coach asked him if he was going to keep playing, he responded with “I’ll be there this afternoon – whatever you need me to do.” He didn’t quite understand that he needed to be able to open BOTH eyes in order to play, but his heart was back in the game!

It was then that I needed something from the coach: I needed to know that Nicholas was not going to be treated any differently than any other boy on the field. If he was going to play baseball, then he was going to play baseball! If he was going to play, it had to be on his terms, which meant he would be treated just like every other player on the field.

This was such a pivotal moment for Nicholas but also for me as his Mom. It would have been so easy for him to say his baseball days were over. Given different circumstances, it would have been even easier for me to tell him his baseball days were over. But in my heart, I knew how much he loved baseball and I knew how important it was for him to feel normal; I knew how much happiness he got just from being on the field.

The next day, while the Super 7s were playing in the semi-finals and then the finals, I could not have been more proud of that little boy sitting in the dugout, eye swollen shut, IV still in place so we could infuse, cheering his team on and wishing he was playing. In that moment, not only was he my hero, but he was his team’s hero. More importantly – he was normal.

Tracy served on HFA’s Board of Directors for eight years, and was recently elected the HFA Board President at Symposium in March. Tracy, her husband Lance and son Nick (11 years old) live in Virginia. When Tracy isn’t volunteering with HFA or cheering Nicholas at the baseball field, she works as a Trust and Estate Paralegal for the law firm of Pender & Coward, P.C.

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*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers. 

 

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