Friday, May 21, 2010

Big shoes

I've always had big feet.

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 accepting.

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.


Steven Hrpopolis said...

Steven's always here for ya, Baby!

Amanda said...

Big Hugs Angela...we are all here for you.

Kara said...

You are a wonderful person. I can offer no advice. But I can offer virtual hugs. Hang in there sweetie. Praying for you! I'm so sorry you're having a rough time.

Lauren said...

Wow. You are amazing. Hang in there, and know you're not alone...

Shannon said...

big hugs angela!!!! i am so proud of you for your honesty. your emotions are so real, and they are yours... i am glad you are strong enough to express them, and acknowledge them.

having 3 kids is a lot of work...
having a new baby is a lot of work...
having a child with special needs is a lot of work...
and having your spouse travel and staying home alone for days is a lot of work...
you are dealing with all of the above, and i can't even begin to imagine what that is like.

i am sorry that your plate is so full right now, and i pray that you have the strength you need to get through each day.


Anonymous said...

Lifting you up in prayer. I have 3 boys, and my middle one has autism. He is the love of my life, but it is extremely frustrating. I hate autism, how it stole my son from me (he was developing normally until 2.5), how it affected everyone in the family. I get it - how every birthday is bittersweet because you were hoping that he would have made more progress. My youngest boy at 3.5 has already surpassed his "special" brother who is 7. You rejoice that the youngest one is OK, and at the same time it breaks your heart. You need a support group - getting together with moms of children with DS or any other disability - will help you overcome this sadness. Also, I am not sure how Early Intervention services are in your state. They are pretty good in ours. My son went to special needs preschool. It was very helpful to him as far as learning to communicate is concerned. It also gave me a break.



Amy said...

Thanks for your honest words. You are such a great writer! The previous comment is so true. Even one of those on the list can be overwhelming. I will commit to pray for you as well.

Anonymous said...

Angela: I understand your feelings and the frustration of the same. There are days that I want to figure out a way to remove the chromosome from every cell in Tessa's body to make things easier for her, but for me too. We tire quickly of appointments and surgeries and speech and lack of speech and not understanding seemingly easy requests. We know they can't help it but at times resent the fact that they don't. Will we ever "accept" the Down syndrome? Will she be ok later in life? What have we done to her sister who will likely have to watch over her when we are gone? All the worst of the worst case scenarios and we have to think about them all the freaking time, even though they are babies. I often think these are the times when I am missing her "babyhood", but really with their whole life ahead of her (and us) it is overwhelming. I don't want you to take this as a pity party as much as my showing you that there are many frustrations and sometimes they (sadly) outshine the wonder that surrounds our children. ((((HUGS))) to you and know you are never alone.

- Michelle Zoeller

Ginger said...

Well written! And the pics made me smile :) Hugs to you- you're an awesome mom and Benjamin will achieve many goals and milestones in the months and years to come. I know I would feel many of the same frustrations if I tried to put my size 8 1/2 feet in your shoes.

Tricia said...

Oh Angela. I recognize the emotions even if I am not walking in your shoes. I pray for you every day. It is OK to feel these things, just like it is OK to go to God with them and cry in His arms. The shoes fit more than you think they do. In time, you will realize they were custom made for your feet. I will keep praying, that God will comfort you, that He will strengthen you, that He will give you wisdom beyond your years, that you will be filled with peace even when you don't have understanding. said...

I don't know if you remember but Gregg's sister has a child with Down Syndrome, and a really really good friend in Florida has a child with Down Syndrome. Being so close to them, seeing the struggles and the lack of triumphs and the constant heartache, I was so surprised by both of them when they each had another baby. Both of their fourth babies (both of them had two children, then a Down's baby, then another child) had all of their chromosomes in proper order, but I just couldn't understand the risk, the extra work, the immense pressure they placed themselves under.

My sister-in-law is in the army and just came back after being gone for 10 weeks, which meant that her husband was home with all four kids for 10 straight weeks. I don't think that I could do it, and I'm a mom who thrives in my nurturing environment. You know it had to be so much harder for a man.

I can't relate. I can only see and compare. There was a woman in our church when my friend found out her baby had Down Syndrome whose son had it, too. She smiled and said that her son was her biggest blessing from God. But when she smiled she showed her missing front tooth from when her son kicked her tooth out when she tried to restrain him once time.

I don't know all of the whys and what for's. All I know is that God crafted our DNA. He knit each of us in our mothers' wombs. HE works all things together for good for those who love Him and are called according to His purpose.

And when you're an exhausted mother who is just done, all you can do is remember that and trust it and believe it and let it get you through the next day.

And since your husband is home for a bit, you need to go see a movie.

(((hug))) -- you've been in my prayers, girl.

Maureen said...

I feel the same way so I don't have any magical words of wisdom for you. I consider only one of my boys - Kevin - to be typical. He just turned 14 and is popular at school. He makes friends easily and just started his own Facebook page. He's so freaking normal and it feels so refreshing after dealing with therapists, medication, etc. That may sound kind of bad but it's true. I completely understand how you feel. I hope you can find ways of 'refreshing' yourself. I know it has to be hard with Matthew away for work. Of course, I don't 'know' him but I can tell you married a great guy from what you write about him. So I'm sure his homecomings are great! Oh, by the way, I'm moving to NC next month! Aren't you down south? Maybe we can meet up someday. I love your house and subdivision. This comment was all over the place, huh?! (((HUGS))) to you.

Katie J said...

Ohhhh Angela, I am so sorry that things are rough. I just had a couple things I wanted to share that might bring some comfort.
I am sure that Benjamin "knows" you are his momma even if he can't communicate it or say it. He is yours and you are his. The bond you have with him may not be as evident as say it is with Andrew or Thomas, but no doubt it is there! God in all his divine sovereignty knew exactly what he was doing when he created Benjamin inside of you and when he gave Benjamin to you. I know things must be frustrating with a child with Down Syndrome- I haven't walked in your shoes so I don't know the fullness of all your feeling, but I know you serve the same God I do and he can "take" your tears and your frustrations and lovingly he will say to you, "Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart and you will find rest for your souls. For my yoke is easy and my burden light."

JILL said...

Everyone has such supportive and loving words for you. I can't think of anything that deep. I do think practically, though. My suggestion is to fence in all or some of your backyard. With the warm summer temps upon us, you can be outside a lot. I know it is impossible without a fence, though. But, contained, you and the boys could be outside where loud noises are quieter, fresh air tires kids out more and sunlight is good for your soul. A small picnic table for the older guys, a beach umbrella to keep the baby shaded, water table, bubbles and you're all set!

That's my two cents.

Oh yeah, and I love you and although I am not close by, I can listen anytime.

My name is Sarah said...

This is Joyce. The roller skates brought me in tonight. I still have mine too - size 10 - sparkling red. I expected to read something about those skates. Instead I found an incredibly insightful, beautifully written post by a mom who has a lot on her plate right now. And is doing an awesome job. How do I know? From the photos, the stories and the truth. You have been able to articulate what so many of us have felt over and over again, but just can't seem to get from our crying eyes to the keyboard. Hang in there and in the meantime scream from the top of the stairs if you want.

Anonymous said...

I love you and your family. I have been praying for you but reading this post will bring you to mind more often. Your transparency and sincerity are some of your great qualities.

Beth said...

What a wonderfully written and honest post.

It is a hard life. It is monotonous and exhausting. And though there are sweet moments, there's still never-ending work.

You gotta love Joyce--she's hit the nail on the head. From crying eyes to the keyboard. The blogging world is wonderfully supportive, but it can't jump in and actually do the dishes or wipe the crap off the floor. Wish I could, though.