Wednesday, January 28, 2009
Tuesday, January 27, 2009
And naturally wouldn't you know that Dylan was up at 3:30 this morning (as if that isn't bad enough when noone feels well?) and just as I got him to fall back to sleep around 6, his big sister wakes up and is ready to start the day. I need some serrrrious coffee here. With a side helping of patience. Actually, make that an extra large helping of patience. Although Cassidy is feeling better, she has perfected this really annoying whine. You know, the one that I was saying "was heart wrenching" when she was sick? Well, now she knows that when she is not feeling well, she gets lots of attention from mama. Hence the fake coughing and constant "I'm sick"s that I heard throughout the day yesterday.
And Dylan. Aw, the little sicky has been forced to wear a bib at all times right now. The poor spit up guy hasn't been spared the flu either.
Is winter over yet? Hellllp!
Saturday, January 24, 2009
Now 3 out of 4 of us are all sick with the flu. Ugh. This is really not fun. I told Dave that his odds aren't looking so hot right now.
On top of feeling like I've been run over by a truck, I'm worried. Cassidy has barely eaten all week and now Dylan has started vomiting.
We need some serious healthy vibes. Like now.
Thursday, January 22, 2009
Monday, January 19, 2009
Personally, I think stomach bugs are the worst! I'll take a cold or an ugly headache any day over a stomach thing. Poor little one...
Yes, she does still use her pacis in bed. Ahem...
So, if you don't see me posting for a day or so, you'll know why. I am most likely hanging out with the toilet. Unless there is some way I have managed to escape the icky yickies!
Oh man...I sooo hope so!! C'mon immune system!
Friday, January 16, 2009
And Dylan...well. He's always in a good mood, so I guess that doesn't really count. But here he is being cute anyway. And as a side note - thank you for your support after yesterday's post. I was in a weird mood. My husband read it and said that I sounded "miserable". That wasn't my intention and that is certainly not the case. I was just having a less than wonderful day, that's all. I think it's ok to question things every now and then. To be honest, I wasn't even going to post it but figured, eh, this is where I am at today. May as well be honest about it.
Thursday, January 15, 2009
I find that I am not focusing in on the task at hand. Yes, it might appear that I'm making lunch, but really I'm going through the motions while thinking about which pre-school I should send Cassidy to next year. Or what to do the next time she escapes from her crib. Even as I'm typing this, I'm not even thinking of this. I'm thinking about the embarrassing scene (sorry Karen!) that Cassidy made today while we were at the play gym. I'm wondering if I have any new emails. I'm thinking that any minute now, Dylan is going to wake up and I will not finish writing this.
So with these winter blahs comes time to think. And I've been thinking quite a bit the past couple of days. Don't worry, I'm far too scatterbrained at the moment to get too deep, but I have been wondering about what my purpose is. I'm wondering what more I could and should be doing with my life. I am reminded of a letter that my dad wrote me when I graduated from college. He said, 'try to live your life rather than exist in it.'
Ah, please don't get me wrong. I love my life. Sometimes, though, it just feels...selfish, I guess? I think that there is more that I can do. I think I have more to give. More to give to those who may need it.
Before having kids, I dedicated my life to helping others. I worked as a program manager in a group home for teen girls. My teaching jobs were in troubled areas. I have always enjoyed helping kids, especially, who needed a little extra love.
Now I am home and not working. I am home with my own 2 kiddos who have tons and tons of love!! And that leaves me wondering about my purpose. I think I am starting to miss the feeling of helping. Of helping those who may need a little extra...something, anything.
Hm. Then again, maybe I've just been watching too much Oprah. Who knows.
Monday, January 12, 2009
Dylan's EI nurse was here this morning, so I was able to speak with her about my feelings regarding the upcoming evaluation. She totally understood where I was coming from in regards to the whole age placement situation and agreed that it was not necessary for me to see or hear that information. Hm, that sounds kind of weird...I do not mean that I want to live in a world of denial here, it's just that I would love to be able to assess Dylan on what he can do as opposed to what other 6 month old babies who do not have Down syndrome can. Anyway, his nurse said that we will focus on where Dylan is at right now with his goals and then discuss where we want to go next.
So, I feel good about that. Much better than I did a few days ago, that's for sure.
Thank you again for all of your support. We love you!
Friday, January 9, 2009
After waking up this morning and vowing to forget that yesterday ever happened, there is, however, something that I can't stop thinking about.
Yesterday Dylan's OT was here for a scheduled visit. We were talking about how Dylan's 6 month formal evaluation is coming up. I asked her what I should expect from this. She told me that the EI team would be testing Dylan on specific skills such as fine motor, gross motor, etc. The EI team wants to see where he is with the goals that were set for him back in July. She said that based on what Dylan could do, they would place him on a monthly scale.
She then went on to say, "I can already tell you this. He will most likely fall in the 2 month range for most of his abilities.".
Even though I already know that Dylan is "behind" where he "should" be, hearing those words, "2 month old" spoken out loud felt like a swift punch in the gut. You know...I don't see Dylan in that way. I just see Dylan. I have been working pretty hard at trying not to compare him to anyone else. And as an athlete and big ol' competitor, that isn't an easy task for me. But, I'm trying. And now this is being shoved in my face. In black and white, too - your son is not where he should be. Where most babies are. He is behind. Pretty far behind, too.
So, what I really don't understand is why my little guy, who has Down syndrome, is being compared to other kiddos who do not? What purpose is that serving? Will it help him achieve his goals any quicker? Will he then be able to control his neck muscles better? Will it make me or his dad feel remotely positive having that piece of information? I don't get it. I really don't. I'm a teacher, so I fully understand the need for testing to see if goals are being met. But to then go on and compare him to a "typical" baby...I don't see the purpose.
And honestly, because of the way that yesterday was going, I really could have done without that little piece of information that my son, at 6 months of age, is already 4 months behind. I say, let's give the kid a break. He just went through major heart surgery with some complications to boot. The mere fact that he is here and is smiling, is quite an impressive accomplishment if you ask me.
Tuesday, January 6, 2009
So, my original plan was to post this video to show Lisa of Finnian's Journey, how Dylan likes to demonstrate "the up and down arm move" as well.
But then I went back and watched the video and thought, er, maybe this isn't something I should be posting for all the world to see. In the video Cass is a bit...shall we say...loud and all up in Dylan's face. And Dylan, bless his heart, has a little gagging issue at the end.
But then again, I thought, this is our life. This is what we do.
Monday, January 5, 2009
I do not think I am able to put into words just how much this book has impacted me and my life with Dylan. It literally set the scene for how our new life with Down syndrome began.
I watched this today. It was posted by Jennifer Graf Groneberg on her blog Pinwheels.
I found it truly amazing how watching it brought me back to the place I was in 6 months ago. So many emotions...
Thank you, Jennifer, for sharing your story.
Sunday, January 4, 2009
Recently, I have been feeling pretty terribly about the way I reacted when I first found out that Dylan may have Down syndrome. I realize this was over 6 months ago, but for some reason I keep playing that scene back in my head. I wonder if my reaction was typical. Looking back now, it sure doesn't feel like it should have been a typical way to react. It makes me feel like a pretty shallow person, really. Knowing what I know now...it could have, would have, and should have been different.
When the doctor told me after Dylan was born, I did not speak. I mean, not one word. Hearing her say "Down syndrome"...I don't even know how to explain what that felt like. I mean honestly, those were the last two words I ever expected to hear about my own child. All I could think of was 'this is bad...Down syndrome is bad'. She kept talking, but I wasn't listening anymore. I no longer cared. About anything. In my mind, my "perfect" little life was no longer perfect.
I remember a couple of hours later telling my sister how I wish so badly that I could go home and pretend that none of this ever happened. I mean, the pregnancy, birth, everything. She said, "Oh Laurie. No you don't." But you know what? The sad thing is, at that moment, I really did.
Now when I look at Dylan, I can't help but feel like I have somehow betrayed him. I feel so badly that we started off the way that we did. I can not believe how scared I was. What was I so afraid of, I wonder? I can not believe there was ever a time that I wished he was not here. I can not believe that I ever questioned my love for him. Even typing that hurts my stomach. I look at Dylan now and my eyes well up. I know that is terribly cheesy, but it's true! I feel so connected to this little boy now. He is my love, my hero. I hope that he will always know that.
Yesterday in the mail we received a very large and rather heavy envelope. Inside it contained 34 pages of explanation of benefits from Dylan's heart surgery. Yes I suppose 34 pages seems like alot, but what is slightly nuts is that this is just one envelope of many that we receive almost daily. What was particularly shocking to me and my husband this time, was that on ONE of the pages, 1 of the 34 pages of charges, was a list of "hospital services" (whatever those might be?) totalling
$164, 907.43. Uhm...yeah. Let me just say that we are so fortunate to have health insurance as well as an incredibly supportive network of family and friends.
So, thank you so much to everyone who has helped us, both emotionally and financially, these past 6 months. We love you!!
The other thing...
Cassidy, our 2 year old, has not taken a nap for the past 2 days. I mean, we put her up there and everything, but she won't sleep - and this is the child who typically asks for naptime. Does this mean she is done with naps forever then? If so, it's bound to be a looong winter!!!
On a positive note, she has taken an interest in her Dora potty recently. As a matter of fact, 2 days ago she even managed to...well you know...go in the potty.
Ah, the exciting life of a 2 year old.