I’m not sure when it all happened… The teeny tiny baby boy we admired in the NICU without being able to snuggle or hold for days will soon be FOUR.
Four years of learning.
Four years of cautiousness.
Four years of being on edge.
Four years of worrying and stressing.
Four years of being extra cautious and safe.
Four years of advocating.
Four years of bumps and bruises.
Four years of bleeds.
Four years of hospital visits.
Four years of needles and treatments.
But because of these four years of needles and treatments, we’ve had…
Four years of “normal”… our normal.
Four years of letting him play.
Four years of complete craziness (it’s a good thing).
Four years of letting him learn for himself.
Four years of letting him be active.
Four years of letting him take risks.
Four years of letting him be a boy.
Four years of being blessed and thankful!
It has been an AMAZING four years and we cannot wait to see what the future has in store for our little superhero… yet at the same time, we wish that time would slow down!
He isn’t a baby any more. He stopped asking when he needs his “crazy juice” (factor) every day and just cooperates, complies, and gets it done.
Through all the ups and downs Ethan has been awesome, and his behaviour and attitude have been truly inspiring.
Lately he’s been asking questions. He asks why he needs to get treatment. He asks why he needs to wear a helmet at daycare. He asks why he can’t do certain things (because of safety).
While Ethan knows he has hemophilia and understands he is “special”, he doesn’t entirely understand why. For now we give him a “Coles Notes” version.
It tugs at my heartstrings when he passionately asks to play or do something we know deep down he is not safe doing.
I feel sad when he excitedly asks when he will get to play hockey. I just brush it off for now because I know he won’t truly understand.
Instead he’ll continue with swimming lessons, gym class, and tae kwon do.
While he is only four, Ethan seems to be a naturally athletic kid (he gets it from his Dad). He loves playing mini sticks hockey, soccer, running, tae kwon do, swimming, and pretty much any other physical activity he tries.
I feel bad that we have to limit him; that he cannot learn everything for himself. Some things are just not worth the risk… and some things are just not worth the heartache. I fear that if he learns to love something we may have to tell him down the road he can no longer play because it’s not safe.
I know there are worst things in life, and I know some people may think this is irrelevant… But these are things most parents and children take for granted!
For now, we’ll take things as they come and let him be a normal little boy. Ultimately, we’re just thankful that Ethan is healthy and happy. And that he is able to be active and participate in some safe, low-risk sports! After all, it is healthy for the growth and development of his joints and muscles.