Seven Months

Dylan Ross.

You are 7 months old today. As I sit here trying to find the right words to say, I am unable. I think it is proving my own point that there simply are no words out there, at least that I can think to say, that can possibly describe how much you have enriched our lives.

We love you very much and are incredibly proud of you.

good grief

Scratch that. Now it's 4 out of 4 that have been hit by the flu bug. We are going on week #2 here and poor ol' Dave came home early from work yesterday and looked worse than I did when I was at my lowest point. Blech, this stinks!!

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!

flu

Well, that was a bit premature. Here I was thinking that we were on the mend, when really the worst was yet to come.

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.

Hard Work

Thank you for the well wishes! We are all here and are feeling mostly well. Cassidy is still bit iffy, but certainly on the mend.

You know, this week has got me thinking about Down syndrome. I was thinking about how sometimes it really does requires quite a bit of hard work. Hard work for Dylan obviously, but also for his parents and his sister as well.

For me and Dave, we find that some of this hard work comes in the form of performing certain secretarial duties. I can not tell you how many files and folders that I have for Dylan and the little guy is not quite 7 months old yet. This week in particular, I have spent a great deal of time on the phone with our new insurance company. This time I am trying to figure out exactly what our new plan is all about and why in the world we are now required to pay them $526 before they will even consider sending out our next synagis injection. Every day I must keep careful track of Dylan's schedule. Don't want to overbook the guy. Our calendar is filled with Early Intervention stuff, pediatrician appointments, cardiology stuff and now otolaryngology (pretty fancy name for a hearing doctor, eh!). I have to tap into my creative side each afternoon as Dylan tires of his bouncy chair and play mat. Because of his low tone, he is not able to hold himself together very well, thus we have pretty limited options for entertainment. Oh how I'm looking forward to the day when he's ready for his exersaucer and jumper!

For Cassidy, she must learn patience and understanding. She spends a great deal of time with Dylan's EI team and is clever enough to know that they are not here for her. She has spent the majority of the winter in our house so that we can keep her and Dylan healthy. She goes to doctor appointment after doctor appointment with us. She has given up lots of mama and daddy time while Dylan was in the NICU and then the PICU.

Down syndrome is hard work for Dylan. Dylan must learn to reach milestones with low muscle tone. He will have to work harder at every single thing that he does. Eating, reaching, rolling, sitting, crawling, walking. He will reach these milestones even though he underwent open heart surgery at 4 months of age. He will reach these milestones with hearing loss and with possible vision problems.

With all of this in mind, please know that I never said that hard work is bad. In fact, I thrive on a challenge. The hard work keeps me going. And to be perfectly honest, I think that all of these challenges are making our family stronger. We are already better people for having Dylan in our lives. This I know. Without question.

But...when we are in the moment and the hard work feels overwhelming, what are we to do?

Well, for one, we could dress him up in my err...I mean his, favorite pjs and take some cute pictures like this.

Orrr, we can just sit back and watch special little miracles like this. And know that every single moment of hard work is so worth it.

The icky yickies

Aw, my little girl has been hit with a nasty stomach bug. Her very first one, too. I feel so badly for her. She's been moping around the house all day making these little noises that normally would drive me nuts, but because she isn't well, I'm finding them quite heartbreaking.

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 far Dylan appears well. I am going to assume that his projectile spit up episode this morning (sorry!) was just that. Here he is taking a little snooze as well. Sometimes he sleeps with his eyes just the slightest bit open. I think it's because he doesn't want to ever miss out on anything.

Sweet boy...

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!

The clouds have cleared...

See that big shiny bright thing up in the sky?

Whew. Finally. The sun is out and the clouds have parted, even if only for a day. Yes, it may be one degree out, but seeing the sun shining up there...I don't know. It just makes a difference, doesn't it?

Well, it has certainly helped our moods, that's for sure.

Even 'The Girl Who Frowns And Runs Away From the Camera Every Single Time She Sees It' stopped and smiled for me.

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.

xo

Total randomness...don't mind me.

I think I have a case of the winter blahs. Or maybe it's the January grumpies. Whatever it is though, it's leaving me confused. I feel like lately I've been spending too much of my time walking around in a fog. Or maybe it's a cloud. Yeah, probably a cloud, because it's pretty much cloudy here every day in the winter. Now I guess the clouds have settled into my house. Or maybe just my brain. I can't see or think clearly. At all.

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.

A little follow-up

I just want to thank you all for your wonderful comments on my last post. I read them all aloud to Dylan, who is very pleased as well.

See?

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!

Could have done without that...

Have you ever had one of those days? You know the kind. The ones where you reallllly wish you had never gotten out of bed in the morning? Yeah. We had one of those yesterday. Not. Fun.

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.

Slice of Life

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.

Not to mention, after watching the video a few times, I'm actually finding it to be quite amusing!

Road Map

A couple of weeks after Dylan was born, my dad, a man of few words, left the book, Road Map to Holland by Jennifer Graf Groneberg, on my kitchen counter. I believe it was his way of reassuring me that everything was going to be o.k. That I did not need to worry as much as I was. That I would get through this.

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.

This, that and the other thing...

This...

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.


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.

One Year

Twelve months.

Twelve special memories.

Happy New Year! We hope that 2009 brings you everything that you wish for!