Today is Harrison’s birthday.
That is still crazy for me to think about. Not just because time has flown by and how on Earth could my baby boy already be 1, but because we’ve gone through this year, almost scared of celebrating things. Birthdays, Mother’s and Father’s Days, holidays, we’ve kind of just skimmed over them this year. Looking back, I hate it, but there have been times this past year when it was hard to be excited or energized. At times, there was almost fear of letting our guard down too much and celebrating. It has just seemed like every time we’d take two steps forward, something would happen, and we’d take one step back. I’ve felt like I’ve almost always had to keep one eye looking over my shoulder looking for the next kick to the gut. To anticipate so that you don’t get blindsided.
I hate I’ve had that mentality this past year, but at times it felt like that was my only way of handling everything. There are plenty of things, looking back over this past year, that I wish I had done differently. To celebrate more. To have taken more photos and recorded things more. We didn’t really take photos or record Harrison’s hands and feet when he was first born, and I wish we had. Back then, though, especially those first few months, progress alone seemed like a pipe dream. To have thought that at 1, my son would be able to sit up felt like the impossible, yet here we are.
It’s not that I ever underestimated Harrison or our doctors. I will never underestimate my son, and I have all the faith and trust in the doctors we have chosen. It’s just that having any type of hope was scary. I’ve found this very thin line between hope and fear, and I do my best to stay in that line. To remain focused on the here and now. What’s in front of us vs. what could be ahead on the horizon.
I’m not sure if that’s good or bad. If it’s the right or wrong way to approach all of this, it’s been my best way of moving forward. It leaves a lot of frustration on the table. Frustration at myself and at others.
If someone was to ask me what is something that I did not expect from this past year, I could list a ton of things, but easily it would be my frustration with people.
I get that our son, and our situation, is unique. People aren’t always sure on how to navigate, and their awkwardness in that is probably one of the worst things. Sure, people mean well, but in their effort to try and behave as if our son is a typical baby, all they do is highlight how different he is in their eyes and how awkward and unsure they are of themselves around him and us.
Is it so hard to just act normal? Harrison is a baby! We are his parents! That should be the beginning and end of it, but it never is.
I promise it’s not that hard if you get over yourself. I promise.
I could give so many examples of people, in their attempts at being “considerate” make things so much worse. We don’t ask for special treatment, sympathy, or anything else. We don’t want it. Every day, we live this. We know our son, his condition, and we know it makes some people uncomfortable. Afraid they may upset us, or make us feel bad, so instead of just being normal human beings, they go out of their way to avoid subjects, or make something out of nothing.
Guess what? That makes it worse.
You’re not saving us a tear at night. If nothing else, you’re adding to it.
My son is different. He will always be different from what most people consider typical. For him, though, it won’t be. It will just be normal for him, regardless of what the rest of the world tells him.
Does it break my heart for my son when I see the looks as I’m carrying him through a store and people notice his arms hanging limp? Yeah. It kills me for him, because he’s already getting looks and people judging and categorizing him, and he just turned 1 today!
He’s already been referred to as a cripple to his parents’ faces.
And don’t even get me started on the people that I know talk about the fact that I have this blog and that we have the Facebook page and everything else, thinking we’re looking for pity.
The last thing I want for my wife, for my son, for my family is pity!
“Then why do you have a website and a Facebook page?”
Because, despite my frustrations, we have had an incredible support group. Because people that know us, rather through our parents, through work, what have you, have wanted to keep up with our son, and with us.
Not only that, but there are other families going through the same stuff we’re going through. You do not know how alone you feel when you have a doctor come up to you and tell you that your son has a condition that you’ve never heard of. That the doctors and nurses that are providing care for your newborn have never heard of. I write these posts; I keep this blog and my other site up and updated because I have that ability. Because if just one person comes across this blog, reads what we’ve gone through, and realizes they’re not alone, then it’s worth it.
All this is essentially therapy for me, to get my thoughts and feelings out. (Trust me, if you could see all the unpublished/unfinished drafts! Oof!)
Look, if you’re reading this, then that means I decided to post this. I admit while I’m sitting here typing this, I’m not sure if I will. Today is Harrison’s birthday and I have other things I want to write in recognition of that. However, as I started writing, all that you read above came out.
I try my best to only share the good. The updates and the progress that Harrison makes. I do my best to not share the other side of the coin. Not because I’m trying to be less than genuine, but because I know no one wants to read all that stuff all the time.
This year has been tough. It has been unpredictable, scary, and frustrating.
It has also been incredible and uplifting. The people that have been supportive of us from day one have been nothing short of amazing. Friends, co-workers, and people that have nothing invested in Harrison outside of knowing us or our family have been incredible, and a huge part of what helped me push through this past year.
We’ve been fortunate this past year to be surrounded by so many positive, supportive people, who have all been incredible. For me, though, the unsung heroes have been those that have helped make a day just feel like any other day.
When your world crumbles, and you have to build it back, having those in your life that remind you of everyday life. Of the mundane. Of the things that were there before, the world crumbled, and that will be there when you rebuild. Those are the people that are at the core of getting through a year as we’ve gone through. Those that help make you feel normal when things are no longer typical.