To Syrina With Love

Syrina is 12 years old (born January 18, 1995). When she was 18 months old, she was diagnosed with autism and epilepsy. Even now, she can't speak, can't go to the toilet (she wears specially made diapers), and can't do such rudimentary things as feeding herself using a fork and/or spoon. This blog is comprised of all the things I would love to say to her, but which I don't know that she'll ever understand. I, of course, am her mother.

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Location: Sunderland, Tyne & Wear, United Kingdom

I'm an American "ex-pat," having moved to my husband's hometown in 2003. I'm now enjoying life as a "domestic goddess" ... or as close to one as I can GET! *lol* I've been married to the love of my life since 1999, and I have 4 gorgeous girls, of whom I'm very proud. I can be a little neurotic and krazy at times... and very opinionated. However, as opinionated as I am, I'm also very open-minded and have a "live and let live" attitude. I'm a walking, breathing contradiction... and that's why people love me. :)

Sunday, February 13, 2005

Tag.... You're IT!!!!

I didn't think I'd have something important enough to put in here already, but you've surprised me tonight, and I do.

Yesterday I took your sisters out shopping with me to Aldi's. I had to pick up some more sausages, because you guys seem to be on a 'sausage & chips' kick lately, and you've all eaten up all the sausages we bought last week! You really wanted to go, and I really wanted to let you, but I knew I just didn't have enough hands for the shopping AND you as well. So yesterday I'd promised to bring you home something nice (I did... one of those Rice Krispies milk & cereal bars you like so much) and to take you out for a walk today.

Well, I was a bit busy today and didn't manage to get out of here until I'd put your LITTLE little sisters to bed. But I kept to my promise and I let you come with me. At first you didn't seem sure of what I meant, but once I got your shoes out and showed you, you perked right up. We got your shoes and coat on, and waited for your Daddy to come into the living room before we left.

As soon as we got out the door and you realized where we were going (to Newsline, of course), you were off like a shot. Caitlin and I were talking, and the next thing we knew, you were already all the way down the block... and we were only a few feet from our front door! *lol*

You have a tendency to go the wrong way a lot, and you kept stopping and looking back at me, as if to ask me if you were going the right way. Funnily enough, this time, you were! You ran, laughing your fool head off, all the way down the path until we got to the point where we had to step off the curb. As usual, the change in depth made you stop for a moment, until I took your hand. As soon as you got off the curb and had my hand in yours, you kept up with the laughing and running, all the way to the door of the store.

Once inside, you did your usual running and looking around. I don't know what you find so interesting in that store, but every time we're in there, you always seem to find something about the things on the shelves that gets your attention.

After I got what we needed from Newsline (and got you a Fudge bar and a juice cup), we ran across the street to Rio's Pizza to get mine and Daddy's dinner. And I do mean RAN. *lol* Whether *I* wanted to run or not, I didn't have much choice. You didn't seem to know HOW to walk today... just run. *lol*

You were a perfect little angel in Rio's. You didn't mess with anything, you didn't run around like a fool (although that wouldn't bother me anyway... that's just YOU... but sometimes the people working in the stores don't like you running around so much), and the only time you messed even with me or Caitlin is when you realized she was drinking a bottle of Strawberry flavored water... and YOU wanted it! *lol*

Then we RAN home. And again, I mean that literally. At one point, Caitlin was ahead of you, and you were ahead of me... and it reminded me of when I was a kid and we'd play 'tag.' So I called out to you, "go get her, Syrina. You go get her, and tell her 'tag... you're IT!'" *lol* In a way, I was kidding. But you certainly seemed to understand what I meant... because you started laughing and ran even FASTER! Every time you caught up with Caitlin, you'd stop in your tracks and back up a bit... as if you thought you were going to fall over her or something. Then you'd touch her arm and keep running some more. I don't know if you did, but you certainly SEEMED to understand exactly what I'd meant when I told you to 'get her.'

I got quite a kick out of watching the two of you playing together. It brings tears to my eyes to see you do something so 'normal.' When I accepted the truth about your disabilities, my biggest regret was that you'd never be able to do the mundane 'normal' things that other kids your age get to do. A lot of kids your age are allowed to go into town shopping with their friends on their own. I can't even let you run down the street on your own. But whenever I see you doing something 'normal' like this, it does me wonders of good. You'll still never be completely on your own, but every little 'normal' thing you do like this reminds me that you're still a person in your own right. You've still got a brain... although it doesn't quite work the way mine does... and you use it. Just not in the same way, again.

Don't get me wrong. I have absolutely no regrets where you are concerned. Well... maybe just ONE. I regret that I was such a young, immature mother when I first had you. I wasn't able to handle the responsibility as well as I would have if I'd been a little bit older and more mature. But that's the ONLY thing I regret where you are concerned. I don't regret having you, and I certainly don't regret keeping you.

The funny thing is, you have actually benefitted your sisters just by existing. I learned a lot about being a mother from you. If it weren't for you, I wouldn't have the patience I have now. If it weren't for you, I wouldn't appreciate your sisters for who they truly are. I certainly wouldn't truly understand what it's like to be grateful that they are all 'normal.' And your sisters are learning a lot about unconditional love and caring from you. Would you believe that your sister Caitlin, who's only 7 years old, has ALREADY decided that when your father and I are both no longer here, you're coming to live with HER?! She's already insisted that she'll take care of you if we can't. In a way, though... that shouldn't surprise either of us too much. Caitlin has always been very protective of you, even when she was just a baby. As soon as she could walk, she started following you around. As soon as she could talk, she was 'telling on you' every time you wandered away. But it was always out of concern for you. If you started to go up or down the stairs alone (which at the time was very dangerous, your balance was NOT good and you almost ALWAYS fell), she would always come running to me, yelling, "Sina! Sina!" and pulling on my hand, pants leg, whatever she could reach first, to pull me to wherever happened to be.

BUT... I digress. I'm getting off the topic here. Please forgive me. I have a tendency to do that... a lot.

Once we got home, and you had your Fudge bar and juice, you were content to just STEAL MY SEAT! *lol* You little shit! You KNEW I was gonna sit there... 'cuz I'd just put out mine & Daddy's dinner on the table!

While I was eating, Caitlin came over and took your shoes off for you. You seemed to be really relieved to get them off... you wiggled your feet around like I do when my shoes have been hurting me. So I asked you if they did. You nodded your head. I asked you if you wanted some new shoes. You nodded your head again... and GRINNED at me. So I told you I'd get you some this week, and I MIGHT even be able to get them tomorrow. I'm taking your sisters into town to pick up a few things, and depending where I go, I just might be able to get them tomorrow. It all depends on how much money is left in the bank. I might wait until next weekend, because we get paid on Friday.

After a while you got up to grab one of Lexi's Fireman Sam books and go to your room. You like to look at the words printed on books. You almost seem to be reading them sometimes. I've often wondered if there were some way you could have taught YOURSELF to read and I just don't know it. I've been told that *I* taught MYSELF to read, so it's not all that far-fetched.

After Daddy and I were finished eating, I was sitting here writing in one of my other blogs, when you came into the living room and it suddenly dawned on me that I STILL hadn't changed your sheets & quilt cover on your bed. I jumped up so fast your Daddy thought something was wrong! *lol*

You had come back into your room while I was looking for the clean sheets, and laid down on your bed. I explained to you that I was going to put clean sheets on your bed and change your quilt cover, but once I was done with that, you could go to bed if you want.

So I changed it all, made your bed, and set your toys up the way I usually do. I went out to the living room, picked up your dirties, and told you I was done. By the time I came back into the living room, you'd already gone in there. I went in there, and asked you if you wanted to get changed and ready for bed. You smiled at me, so we picked out some jammies, I grabbed your diaper, and put it on the couch while I got out the baby wipes. You had laid back down AGAIN! Obviously, you were tired, but I'd smelled you when we were picking out your jammies... and honey, you STUNK! *lol* So I was NOT about to let you go to bed stinky! But man.... you were being a stubborn little mule! You absolutely would NOT get off of your bed and come get changed! I had to literally drag you hand and foot to get you off!

Once I got you down on the floor, though, you warmed up to the idea. Especially when I put some baby powder on you and told you it'd make you 'smell pretty.' You laughed. :) When I was done, I asked you if you wanted me to tuck you in, and you didn't actually give me any indication one way or the other, but you wouldn't go into your room until I was right behind you. So I tucked you in, I got a kiss (okay, more like 3 or 4, but what can I say? I'm your Mommy, and I love ya!!), and now you're in there sleeping like a baby.


The answer to the question "Why?"

Anybody who sees this is probably going to be asking themselves, "Why did she do this? Why post a blog to someone who can't understand it anyway?"

The answer is simple. I'm doing it as much for myself as I am for her. Not to mention all of her friends and family, all of whom are thousands of miles away.

This is a tool I can use to mark all of the important things she does. Things that might not seem important to someone else are very important to us.

Like just last night, Syrina went into our bedroom and picked up a CD. I found it on her bed, took it BACK in the bedroom, and informed her Dad that she'd stolen one of his DivX movies. Not 5 minutes later, she was sitting on her bed with the SAME friggin' CD in her hand! *lol* Like I said, to some people that wouldn't sound like a big deal. But this is Syrina - the child who can't even make it clearly known when she's hungry or thirsty. So for her to be this stubborn about something she wants is a VERY big deal.

These are the kind of things that people such as her 'GREAT' Grandmother would love to hear about. But it's also these kind of things that I FORGET when they want to know how she's doing.

And since I pretty much have my laptop on the coffee table all day every day (always turned on, of course), I figured it would be easier for me to quickly post a note about something she does. And if I do that, then I don't have to REMEMBER these things. I can just SHOW them to people when they ask. :-)