So, our little boy is about to turn one.
Thinking back on March of last year, I didn’t know for the longest time if we would even be sitting here where we are right now.
This year has been a lot of things, and after the last 12 months, it’s hard not to sit and reflect. Not only to remind me of where we’ve come from, but almost like a bookend to this first year.
To put a stamp on Year One.
So what can I say about this first year of Harrison Greene?
It went way off-script.
It’s easy to talk about all of Harrison’s triumphs. All the heartaches, difficulties, sleepless nights, and tears.
None of that should come as a surprise, considering everything. Looking back at this year, I think it’s fair to say, there is one thing that has been more of a surprise than anything. And that is; People.
The people we’ve been around. The people we’ve met. People that have reacted to us or to Harrison. The wide range of people and reactions is far beyond what I would have expected, and some have genuinely shocked me.
I think the reaction that has shocked me the most has been the reaction we get from doctors and therapists over what all we’ve done and how we’ve handled things with Harrison. They always seem surprised and complimentary regarding the time we spend working with Harrison at home. Be it playing on the floor working on arm movement, stretching his legs and arms, working on sitting up, or simply just having him wear his braces for the amount of time he does. They all seemed genuinely surprised by it.
And I never get it.
It seems crazy to say, but most parents out there with children that have Harrison’s conditions don’t work with their kids as much as we do. There is never a day where we’re not doubting ourselves. Where we’re not questioning if we’re doing enough of an exercise, not enough of another. Are we doing this right? Are we doing enough of this?
Our son has been dealt a crappy hand, where he’s immediately behind the 8 ball with most things that we take for granted. Our goal is to do everything we can to give him the most self-reliant, productive, fulfilling life that he can. We never feel like we’re doing enough, while we have doctors praising us for doing all that we do.
I get there are people out there, that would never want to undertake the life we have. I get it, but the ones that choose to, that is your kid! How can you not do everything in your power for them versus just accepting what is and never altering from that lane?
It just blows my mind that people see and treat us as some type of upper echelon of parents that they see. I’m not sure I’ll ever adjust to that.
Then we have the other side of things. People we know and cross paths with.
It has dumbfounded me during the past year with the bluntness and utter unawareness of people.
I know people, and especially parents, have different thoughts, opinions, and methodologies when it comes to things. Even things as simple as words. We’re still adapting and analyzing the way we do things and the words we use. It’s a fluid process.
For example, we’ve chosen to use the word “typical,” vs. “normal” when describing things and people. Rather than say “well a normal kid would do yadda yadda” we say “a typical kid would likely do yadda yadda at this point.”
I don’t want Harrison growing up thinking he is abnormal, or that something is wrong with who he is. That’s not something I want him to have to shoulder.
We also don’t shy away from disability.
Our son has a disability. He will always have a disability. That’s a fact and is what it is. So there are zero reasons for that word to be some sort of taboo.
He is disabled.
For him, that shouldn’t be a word that’s any different than for me to sit here and say I’m left-handed. It is an aspect of who I am versus a defining trait.
I know most people don’t see it that way, but there have to be levels of change and levels of perspective, and I don’t want my son to grow up being scared or ashamed of who he is. Maybe it’s part of the area we live in, I don’t know, but words are a curious thing. Now even more so, having someone call our son “a cripple” has been something that has sat like a rock in the bottom of my stomach since it was uttered.
I’m sure other people have said or referred to him as that, or used similar words to describe him. However, Jenna and I have had people look us in the face, and act and behave as if our son is automatically pathetic and something (not someone) to pity, because he is “crippled”.
People are just unaware of how their words, actions, and behaviors affect not only us, but everything surrounding us. Especially when you’re striving, despite your child being different, despite your child having hurdles, striving to find the balance between acting like he’s a typical kid, but also doing that in the confines of being aware of his disability. To not disregard it to, but to acknowledge it while also not openly acknowledging it. To work around it without bringing attention.
It’s a difficult thing to find the proper balance, as is with most things in life. We can expect no one to get it correct immediately or all the time, but what gets to me is when people clearly don’t even try. When people disregard how we treat our son, and do what they do so, they feel better.
The past year has truly been one of learning and reflecting. Of finding ways over new, unique, and unseen hurdles. In my naivety, I wasn’t expecting “people” to be one of those hurdles for at least the first few years.
That I wouldn’t need to be my son’s shield so early.
I was mistaken, but have learned quickly.