When I was eight years old, I wore a size 8 shoe.
When I was nine, I wore a 9.
When I was ten, I wore a 10.
And, yes, when I was 11, I wore an 11.
Thankfully, that's where I stopped.
There is an advantage to having such large feet so early.
I can still wear my rollerskates from middle school.
They look kinda like this:
Except a lot more scuffed up. And a lot bigger.
Having big feet has its disadvantages, too.
It's hard to find cute shoes.
I can't share shoes with friends or family.
But it also means that (practically) no one can fill my shoes.
And I can't fill others' shoes.
Today I went into my bedroom and, as usual, there were toys everywhere.
I'm sure Oprah would disapprove. Isn't she always saying you shouldn't have a television in the bedroom? Yeah, I'm sure she would not approve of not only a TV and DVD player, but a million Buzz Lightyear figurines and Eric Carle books.
See, our bedroom is kind of like Andrew's safe haven. He can go there and watch a movie or read his books and Benjamin cannot bother him. And he can be loud (is he ever quiet?) and not disturb either brother.
Anyway, so I saw all these toys out. Normally, I make Andrew clean up his toys when he leaves one room to play in another room. Or before a meal or leaving the house.
Sometimes I let it slide and clean them up myself.
I'm not Hitler, you know.
I saw one particular thing and it made me chuckle. Then it made me think.
Obviously, Andrew didn't mean for this to conjure up all kinds of thoughts in my mind.
Woody just needed to get someplace and these were the closest boots. Thankfully for him, they matched his outfit.
But it got me thinking about shoes.
And wearing shoes that are too big. (Not that I've ever tried on shoes that were too big.)
I thought about expectations.
That others set for us.
That society sets for us.
That we set for ourselves.
Finding out that my son has Down syndrome was hard. Open-heart surgery at five months was hard. Last winter with all the illness was hard.
But those things feel like the tip of the iceberg.
Because now, at two years old, I feel like the true challenge has begun.
It is so difficult to have a child who is 25 months old who can get around like a 15-month old but can only understand and communicate like a 9-month old. Because he has all these physical capabilities but cannot communicate.
He does not understand me when I ask him to be quiet b/c Thomas is asleep.
I do not understand him when he sticks his fingers in his mouth (no, he's not teething) and does this half whine/half cry thing.
He knows about three signs and no words. Those signs ("brush teeth," "more," and "play") are only used by him when we prompt him continually. He never communicates with us. And we cannot communicate with him.
And the noise.
I had to order Thomas a sound machine for his room b/c Benjamin's noise levels throughout the day cannot be contained. If he's happy, if he's mad, if he's bored...he will be loud. Not all the time, but enough where it is just too much. And he is not at the age where I can tell him from across the room to quiet down. I have to drop what I'm doing (which is not easy or even possible at times), go to him, pick him up, comfort him, give him a paci, or just remove him from the room.
When we put him down for bed at night (between 7:30 and 8:00), he plays in his crib until 9:00 or 9:30.
Banging his feet against the slats.
Running around in his crib.
It is loud and there is absolutely nothing I can do about it.
Every. Single. Night.
I can't really make sure that he expands more energy right now. I can't take him outside unless it's one-on-one b/c he requires that much attention. I am very rarely able to give one-on-one attention to any of my kids right now.
You know how when you have a new baby, you go through a phase where you just kind of move them from one "station" to the next?
Bouncy seat to swing to play mat to crib.
Rinse, lather, repeat.
Well, that is essentially the story of Benjamin's day.
When he wakes up at 6 a.m. which is an hour earlier than the day officially starts in our house, I don't really know what to do with him.
I cannot let him just be. He doesn't know how to just be.
He loves to be mobile. He loves to run/bear crawl/walk around. But that can only happen if I am able to keep a close eye on him. But more than that, he tires of it fairly quickly. And he gets LOUD. Then what?
All day, I move him from the playpen (w toys) to the high chair to the bonus room to the crib. Over and over. He does really well playing by himself in the bonus room (w/the gate up). But then he's just in there by himself all day. Talk about a guilt trip.
He is a baby.
And I am tired.
Not just physically, but emotionally and mentally as well.
The mom with a child with Down syndrome has some dang big shoes.
And I don't think they fit my feet.
I know they say everyone has their own timelines.
But I feel like I should be better with this by now.
More, "Oh, his milestones take a long time but they're so celebrated" kind of thing.
More "The DS makes him who he is" kind of thing.
Right now, that's all just crap to me.
I am over it.
I'll say what's been on my heart for days and days and days.
I hate Down syndrome.
I just don't get it.
I look at my sweet son, whom I love SO very much, and I wonder.
Why does he have this?
Why does this even exist?
What is it about this extra chromosome that makes it so he can't talk? Can't understand? Can't be typical?
A few months ago, Matthew and I were talking about the fact that B is so delayed in certain areas. About how really and truly, it is okay. But then I started wondering--why is it okay? Why do we say that it's okay?
And Matthew and I came to the conclusion that it's okay, at least for us, because it has to be. We don't really have a choice. And so we say it's okay.
I know the "right" answers of course.
That it just is what it is. We learn from it, we grow from it, we love because of it.
But lately I just don't care.
Yes, Benjamin is very sweet and cute and can make anyone smile.
But I want my son to be normal.
I want him to say "mama" when he's supposed to and to understand that that's me, darn it.
I want him to know that when he's standing in the tub in his shorts and I am trying to hold him up because he is covered in poop (yes, we're still having poop explosions b/c we can't seem to get the right Miralax dosage), that he needs to lift up his feet so I can remove his shorts.
All I wanted was for him to lift up his feet! One foot at a time. But he doesn't get it.
I hate it that I am bothered by all of this. I should be okay. I should be more loving, more accepting, more patient.
I know it's not his fault. But it is hard sometimes not to feel resentment. I feel like such a hypocrite when I think in my head, "Why don't you get it???" Because I know why. And it should be okay.
The shoes are too big. The expectations are too lofty.
I know all of this is extra hard right now b/c I just had a baby and my husband has been gone a lot.
But it's still my reality and it still sucks.
I receive many offers from people to help. Very well-meaning offers. And they make me smile and feel loved.
But there's really not much anyone can do right now except for, say, my mom and my husband. And they're not always there.
And they can't ultimately do what I'd like for them to do.
To make it all just be better. To take it all away.
And so I am going to go crawl into bed and have a good cry.
Right after I take Woody out of those ridiculously large shoes.
Because it's impossible to move forward when your shoes don't fit.
Even if they match your outfit.