As many of you know, March is Hemophilia Awareness Month. This is a time for our friends and communities to shine and raise awareness of Hemophilia and other rare bleeding disorders.
It has been so long since I wrote a blog entry. Too long, actually.
I have promised countless times over the last several months I would write an entry or two but I just haven’t taken the time to sit down and do it. However, from my perspective, it isn’t necessarily a bad thing! Ethan has been doing exceptionally well, sometimes so well that I feel like there is “nothing” to write about.
We have had a year of a lot of firsts, many new experiences, and a ton of questions.
September was a big month for us – Ethan started kindergarten. He was so excited to finally start school, and he was more than ready! We knew there might be some challenges but we stood by his side and encouraged him every step of the way. It was a big transition for all of us, but I think we have adjusted well!
Starting school meant Ethan would be in a classroom setting with only one teacher, as opposed to having three daycare teachers (one of them being one-on-one support solely for him) which he was accustomed to.
Starting school meant Ethan would be playing in gym class and during unstructured times with 15 to 20 other classmates who had no idea about Ethan’s hemophilia and the severity of his needs.
Starting school meant Ethan would play outside during lunch with 100+ primary children, all running around at the same time, vying for the same few basketballs, fighting for time on the same few swings.
Starting school meant Ethan would be in the care of someone else all day long and we wouldn’t be able to protect him and ensure he was safe at all times.
Starting school meant many teachers would be nervous and uneasy as they weren’t entirely familiar or comfortable with dealing with Ethan’s needs, issues, injuries, etc.
But thankfully starting school also meant I was lucky enough to be working in the same school as Ethan. Not just for him and I, but also for those apprehensive teachers who had an endless amount of questions. Ensuring they fully understood Ethan’s hemophilia and the severity of his diagnosis, as well as signs to look for in the event of an injury or emergency, became a priority for them.
I was lucky. Ethan was lucky. And I am willing to bet those teachers felt pretty darn lucky too!
It was a little nerve wrecking for a while; undoubtedly a bit of a change. Knowing in the back of my head that Ethan looked “normal” was certainly one of the biggest challenges. I knew all too well people misconceived and misunderstood hemophilia. It’s hard to take the severity of it so serious when you have an extremely smart, active, and athletic little boy in your care. You find it hard to perceive that he can be injured so easily. You find it hard to imagine that he can bleed so severely. But he CAN. And he WILL.
Knock on wood we haven’t experienced that (yet). Since September there have been a handful of minor mishaps, but nothing that required medical attention outside of the school. Pheww!
Because we were so concerned for Ethan’s safety and well-being in the classroom and at school, we pushed for him to have the support he needed. We pushed for him to have extra supervision (provided by a student assistant) during play time and unstructured time such as recess and lunch. It didn’t come easy; we persevered and persisted. We wrote countless letters and emails, made many phone calls, and had several meetings. But after much determination Ethan was approved and soon began to receive the extra care and support he was entitled to have based on the severity of his hemophilia.
Ethan is a good kid. It didn’t take the teachers long to figure out that he is genuine and understanding about his injuries and pain – at least at this stage in his life, haha. If he is hurt, he will find someone to tell. He knows he has a special back pack in his classroom full of medical supplies. He takes it wherever he goes: to gym class, music, outside, etc. Inside there are ice packs, bandages, gauze, sterile gloves, and an endless amount of other medical supplies! He knows to go to his back pack if there is anything he needs. He knows to reach out for help if he is injured… even if it is minor. Hopefully this is something we can instill in his as he grows up and goes through school. It is so crucial.
So, as if school wasn’t a big enough adjustment for us, Ethan wanted to play ice hockey this fall. We knew it was coming. He is so much like his Dad in that sense – naturally athletic. He is interested in, and loves, all sports. It comes pretty naturally to him.
So, after much hesitation – and avoidance – we met with his wonderfully amazing Hematologist, Physiotherapist, and Hemophilia Nurse at the Janeway. They knew it was coming as much as we did, and they have been so supportive in every aspect. They see him fairly regularly and know his personality. They can clearly see his athleticism. His muscles are strong and he is very agile. Which is really good for a kid who has severe hemophilia! After all, they keep telling us the stronger your muscles, the less of a chance you will have an injury.
So, after having a good chat with Ethan (after all, he was the one who was trying to convince them), they agreed that it was ok for Ethan to try ice hockey. No doubt with that agreement came many stipulations. Stipulations that Ethan needed to listen to – and follow – very carefully!
In order for Ethan to play ice hockey, he needed to agree to having an increased dose of factor before ever stepping foot on the ice. He also needed to be infused as close to ice time as possible. In addition to that, he had to promise to let us know if he felt any pain or experienced any injury while on the ice. And if that were the case, we would meet again and re-evaluate Ethan’s ice hockey endeavor.
We tossed around so many options for Ethan to have the opportunity to play ice hockey in the safest way possible. In the end, we thought the safest, most practical, and most beneficial option would be to register Ethan for a hockey school/program. In September Ethan registered for, and began, the Delaney Hockey Program. Since then he has been skating once a week where he learns many skills, does drills, and works in a small-group setting with a private coach (even getting some one-on-one time). It has been an amazing experience so far! Ethan loves it and he has progressed so much in a few short months. His coaches have been nothing short of amazing, Ethan adores them, and we know we can reach out to them if we ever need to. And, as an added bonus, he doesn’t complain about getting his factor because he knows he cannot play hockey without it. He was even fortunate enough to play in a little two-day tournament with his friends over Christmas. It was the sweetest!
We know, as well as Ethan, that as times goes on and Ethan gets older we will have to reassess the whole hockey thing. As kids progress through divisions, it becomes more competitive, more serious, and unfortunately more rough! It’s inevitable. It happens and we cannot avoid it. But for now, we’ll take it one step at a time and let him enjoy the sport for what it is!
Who knows… with so many medical advancements, maybe we will be having a different conversation in a few years!
One can only hope.
So as if hockey wasn’t enough, Ethan wanted to join basketball in September too! Once again, we made sure to reach out to the coach beforehand, explained Ethan’s diagnosis, etc. He was really supportive, and has been great with Ethan. It is such an amazing program, and with such a small group the kids all play so well together and have learned so much! In September they were working on dribbling skills, and now they are having games of three-on-three. It’s pretty amazing to see how kids this young can be so passionate about a sport! Thankfully, this one has been pretty stress-free to date. We get to sit on the stage to watch (and cheer them on) as they play!
We just remind ourselves that the more active he is, the stronger his muscles will become, and the less risks there are of an injury (fingers crossed).
Through all of these new experiences, if nothing else, we have realized how accepting and understanding others can be. Over the past several months, we have encountered a number of new parents, teachers, coaches, classmates, and friends. It has been so emotional, and so amazing!
Boy have we been lucky… and blessed!
People are so intrigued and interested to learn more about Ethan. Yet at the same time, they accept him for who he is!
While they are cautious and careful, they treat him like everyone else. And that is what we want. We don’t want Ethan to be singled out. We don’t want Ethan to be treated any differently because of his Hemophilia.
Ethan has hemophilia… Hemophilia doesn’t have him. It doesn’t make him who he is; it is just a very small part of him.
Ethan is so much more than a boy with Hemophilia. I dare you to get to know him and try to convince me otherwise! #hemomom