In the last 16 months we have joined different “clubs”, Kenai was a ticket holder to these clubs and we had not a clue until he arrived. February 28th is World Rare Disease Day. I’m first off just going to say, I really don’t like that word, “disease”. I feel like that word holds a feeling that I associate nothing about to our boy, it dulls his light and I usually don’t use it when I talk about him but there is kind of no way around it today.
I never even knew there was a Rare Disease Day before Kenai, which I find crazy since I have personally worked with many kids who are born with different and or special needs. So little is known about our kids, and so when you receive a diagnosis it is very nerve-wracking and full of scary thoughts at times. There were definitely people, even some extended family members, who did not have the most upbeat tune when we told them about Kenai and his diagnosis & that is one of the reasons I absolutely love that there is even a Rare Disease day at all. I love that we as a community are able to share our stories and our voices and advocate for our kids and this hidden world. There was recently a mom on IG that I began to follow, her user name is ‘ladypositive’, and she is the mom of a little cutie who also has down syndrome. She talks about shouting her daughter’s worth, and I LOVE that! I feel the same way about my sweet boy.
There are a lot of unknown roads when your baby is born with a diagnosis, and so many “what ifs” are thrown at you it can be a little hard to not let them stew around in the back of your head at times. But I will tell you, being the mom of 5, there are unknown roads with each and every one of my kids. I know Kenai will have different struggles, he has from day one, but dwelling on them isn’t my cup of tea. Yes this life has struggle and heartache, new different kind of heartache, but I honestly see the rewards to be greater, the joys tastes just a bit sweeter this time around I must admit. I have decided instead of focusing on how different our world is I’d much rather show how much it is the same to others around us. All of us have different trials, we all have different roads, different ups and downs, but we still all have those ups and downs just the same. No ones life is “perfect” but everyone’s life is full of worth. We all come in different packages, none of us are totally alike and I find that to be an incredibly beautiful thing! What I wish today would show to others is that if you ever meet someone who is a little different from you, it’s ok. You might not understand the way they “tick” and they might have a few different quirks about them but it really means the world to them & the ones who love them, when you acknowledge and include them, try to see them as an individual first, not their diagnosis. We all have something to teach each other, we are all growing and learning everyday. Kenai has been one of our biggest teachers, he has taught our family more lessons in his 16 months than I could have ever fathomed. He has opened us to a different level and I feel extremely blessed to have him and his giant presence around. He is a gift and a rare warrior & although our road ahead might have more curves and bumps I’m excited to see where it leads. I am so proud to be this boy’s mom, and I’m proud of every single piece of who he is.