It’s a strange thing, this whole grieving thing.
Grieving and mourning a life anticipated. Of a child and a life that was anticipated but was completely fictional.
It’s hard to put into words the emotional roller coaster. That type of grieving and mourning, especially when you have people truly mourning and grieving actual things, people, and events.
So it’s a hard thing. It almost feels like a selfish thing.
Then you have times where you can just be sitting there and have something smack you in the face. And it takes your breath away. It drains you immediately, emotionally. Where there’s just nothing you can do.
It’s almost like when you have that very jarring dream, where when you wake up in the morning, you don’t remember the specifics. You don’t know what you were dreaming about, but that feeling, that sensation, just hangs over you, and you can’t shake it. You feel weighed down by it and you can’t shake it.
That weighed-down feeling for us is just reality. The reality of what we are facing, what we have, and what we don’t. It has proven to be a constant up and down, left and right coming out of nowhere type of thing.
We can go the longest stretch and just be happy and enjoy our son. Playing and making memories. Dancing, and laughing, and cuddling. We can do all those things and be carefree, but you’re never unaware.
We’re absolutely aware of the fact that his arms and hands aren’t really moving. That he’s not able to do things that a typical eight-month-old baby can do.
And we’re always aware of that fact. It never leaves, but it’s not always at the forefront of everything. Not driving the emotions constantly, but every once in a while. This script gets flipped and you have to deal with all those facts. It smacks you in the face, and with the holidays, it seems we are going to be on a constant roller coaster. A roller coaster that started a few weeks ago and we will clearly be on through January.
Our son was born with arthrogryposis. It affected him in all his limbs. When he was born, both arms were constricted and tight against his body, fingers so tight and without any sign of movement, they resembled flippers more than hands. This isn’t something out of the blue. We’ve known this. These have been the facts since the moment he came out of the womb.
That doesn’t make it all any easier though.
The other day is when this latest rollercoaster ride started. The leaves have finally changed colors and started falling. They’ve covered our yard. As it should be for this time of year.
In fall, a little kid wants to play in the leaves. Little kids want to jump in piles of leaves. It’s just that whole thing and being outside with HG and it smacked me in the face how he’s not able to grab a leaf.
Him not being able to crunch a leaf in his hands and do all the things that a baby would do with a leaf.
It really struck hard. It struck home, and it seemed to snowball in my head from there. Thoughts snowballed from the present, from the now and forward, through everything coming up with the holidays.
We’re talking Thanksgiving and Christmas.
Just so many things in the coming months. I’ve not even started thinking about his birthday in the spring yet. (Mostly because Daddy doesn’t want to think about him already turning 1 just yet!) But I’m sure once we get closer to that, things will weigh heavy on me again.
It just all smacked me so hard the other day. I couldn’t do anything, but just kind of sit by myself and shed a few tears because it just, it was hard. It’s hard, knowing that in the coming weeks we’re going to have Thanksgiving. We’re going to have multiple dinners and lunches with family. He’s going to be sitting there, and he’s going to have to sit in our lap because he’s in his cast. Even without his cast, he still wouldn’t be sitting in a high chair. Unable to be given little pieces of bread or stuffing. A green bean or just any number of things he could be given, he could grab with his hands and feed himself.
He doesn’t get the opportunity to feed himself at all. Doesn’t get the opportunity to hold a sippy cup.
He doesn’t, because he can’t.
He doesn’t get the opportunity to be independent. And yeah, an eight-month-old isn’t overtly independent, but you know, they get opportunities to be. There are those glimmers, there are those chances and he doesn’t have those at all.
Then a month after Thanksgiving, we’ve got Christmas.
No chance to, you know, do the whole “you set their hand on the seam of the wrapping paper and help them rip open their first presents”. Show them that if they pull, they can rip that paper and go to town. He doesn’t get to do that.
He doesn’t get that opportunity. Doesn’t get to be the center of attention in a room full of laughter and excitement over seeing if he’ll do it. If he’ll rip the paper.
There isn’t any worry about my son messing with the Christmas tree and grabbing or reaching for ornaments, or crawling over, wanting to look and grab one. We don’t have any of that to worry about or look forward to. There’s no worry if we can or cannot put the train set out. He’ll be able to sit and watch the train, but his interaction with that begins and ends there. A far cry from the daydreams we talked about last Christmas in anticipation of this one.
All that alone sucks, but then we have situations that make it worse. I hate even saying it, but it does. It makes it impossible to ignore reality, if even for a moment.
Our son has three younger cousins that he’ll be around during the holidays. They’re all within just a few months of HG, with one cousin being our nephew. Making all these things even more delicate and a balance between heartache for our son and our situation and excitement for our nephew.
Anyway, our son is the oldest for the latest baby craze in our families. He’s the oldest and likely will be the smallest once everyone is together, and it’s hard.
It’s hard to not, I don’t want to say compare, but we’re going to be seeing other kids his age, being able to do things and he can’t. Reaching milestones and developing new skills, he cannot.
What really hurts in it, though, is that I feel that’s he’s becoming more aware of the fact his arms aren’t moving when they should be. That’s going to continue to get worse when he’s watching his cousins do stuff and he can’t, as this is just the first year. With so many years to come, I can’t even imagine how hard they’re going to be. I can’t begin to imagine how hard next year alone will be.
It’s going to be awful, I’m afraid.
It all just hits and it hits hard, and it continues to hit and it will continue to hit. I know it’s going to hit. Harder and harder.
I know it’s going to hit at Thanksgiving and I know it’s going to hit it at Christmas and I know it’s going to suck when an aunt or an uncle or someone is going to inevitably compare. That you’ll see it in on their face as they make comparisons in their head. And that’s just going to flat-out suck. It’s going to hurt.
What makes all this worse, though, is that these thoughts have just continued. They’ve continued to snowball and have made me think.
Should the fact that our son cannot use his arms, affect how we should or shouldn’t do things, not just around him, but with him?
Example: Teaching him “bye-bye”.
How fair is it for me to look at him and wave, “bye-bye”? Something most of us would naturally do with a baby. How can I sit there and wave when he can’t? I mean, that’s the motion that babies start off with. Typically, it’s not saying the words. It’s the waving, and that’s something he doesn’t get to do, so how can I wave at him if he can’t wave back? How fair is that of me to do to him?
How do we do stuff like sing certain songs or certain nursery rhymes that we’ve all sung and done with babies and little kids? What about toys that sing those songs and nursery rhymes? We were at the store the other night, just showing him different toys and just seeing what perked his interest and got his attention. And you know, there was, of course, one toy that triggered all this for me. It was a toy that you push a button and it sings “If you’re happy and you know it, clap your hands”. My son can’t clap his hands! His hands don’t work.
So, how, as his dad, can I ever get him that toy or one like it? How can’t I get him something that is sitting there saying for him to do something that he’s incapable of doing? Sure, it’s sung whimsically that makes him smile now, but what about in a few months when he can’t play along? How can I give him something that says IF he’s happy to clap his hands when he can’t? Will he associate that with the fact that he’s not allowed to be happy because he cannot clap his hands? I mean, I’d hope not, but I’ve seen stranger assumptions made by older and presumably smarter people.
And then there are nursery rhymes like patty cake.
There is no patty cake (pat-a-cake).
Again, something that most parents do with small kids to help entertain and to help do things, and you can’t play patty cake.
There truly aren’t words that can properly communicate and translate the emotional rollercoaster of what all this feels like. The frustration. The heartache.
I realize I’m writing all this, but please don’t take this as something I’m constantly thinking about. Are there still times of mourning a life expected? Yes, but it’s not all the time. There are more days than not where this stuff doesn’t even register. Not on this level.
But then you have a minor event, a small action. Something unexpected and it just triggers it and it snowballs from there. It can be as simple and random as leaves on the ground, or it can be seeing another baby while out at a store. It could be comments you read on social media, talking about kids giving hugs, or videos of a baby grabbing a beard or hair or trying to crawl, or any number of things.
Shopping down the baby aisles and it is chock-full of sippy cups and sippy cups with handles and forks and spoons. All saying they’re for ages 6 to 12 months, 9 months, all these. All these things that my son fits into, but doesn’t.
There are moments where all you can do is just stare out into space just to get through those moments. To help balance the weight of it all and to be able to function. To not get frozen in time and break down.
Also, I’m not oblivious to the fact that is just scratching the surface of all that’s coming. All the heartaches for us and for him. For everyone.
Because that’s the thing too. The farther along we get, the older he gets, my personal heartbreak turns into a father’s heartbreak for his son. Grieving evolves into heartbreak for my son. It breaks my heart even now, to sit there and watch him. Watch him try so hard to move a toy car. To just move his hands at all. To watch him look back and forth between his left hand and his right, with a look that says he’s doing everything he can to just will them to move.
It’s just hard. It’s all just so hard.
But, we have the holidays to look forward to. Our first Thanksgiving and Christmas for our baby boy!
Clearly, I’m trying my best to mentally and emotionally prepare. To have a mindset that when I see my nephew and cousins that I won’t have to stare out into space at that moment, but to look past and soak up and enjoy every second of this first Thanksgiving and first Christmas with my son. All the moments and all the times that we get to spend with him and get to do things with him. We won’t get back his first Thanksgiving. We will not get back his first Christmas and I don’t want to look back in a decade and regret being mopey and allowing it to take away from things.
So I’m going to do my best. Sometimes my best always doesn’t feel like it has worked, but I’m still trying. Hence a ridiculously long blog post just to get everything off my chest! 😊