One would think, after a 2 month NICU stay, a marathon ABR, 6 weeks of visit to the viral specialist, a massive 7 hour surgery, three minor outpatient procedures, and regular visits to the doctor’s building attached to it, that I would be over that constricting feeling in my chest when I think about visiting the hospital. And yet when I got a call this morning from the St. John’s Mercy administration my first reaction was to hold my breath, and I got flutters in my stomach.

They were just confirming some information before his appointment next week. That’s fine, but now, with a week to go, I wish they’d waited until the day before. I dislike NICU follow ups anyway, and can’t wait to be rid of them – when do they run out, anyway?

Any doctors hiding in there?

I suppose it’s one of those things that just hits home every now and then, no matter how distant it becomes. Talking with Nat, she’s mentioned how ultrasounds get to her, and how she hates to be in the same ultrasound room she was in when she found out Devin had passed away… I think it’s the same thing for me. To this day, that drive down the highway that I made far too many times takes my mind places I’d rather not revisit, and I wonder sometimes if I’ll ever entirely lose that.

Maybe we should have gone with the deaf school down that road instead of avoiding it, simply to give me another association. Of course, even though it’s the same building as our pediatrician (whom I love), I still think of the doctor’s building out the other direction as where my perinatologist was, and avoid going down the hall that took me to all those damned ultrasounds.

No, really, what’s in there?

Some memories fade with time; others seem to have crystallized. Fortunately, they have a happy ending in our brilliant little boy – who, by the way, is now saying “bababa” all the time. He’s sacrificed those rare “hi” and “uh oh” sounds for it, but I remember Eric dropping sounds and words once he’d played with them a bit, so I don’t worry.

I’ll be glad when I don’t have to visit the hospital at all and I can place all those icky feelings on a shelf, never to be touched again.

I’m starting to get excited for Danny’s birthday for none of the reasons most moms look forward to a second birthday: I can’t wait to see what he does with his birthday cake this year.

Last year, of course, he barely touched it. He didn’t like to get his hands messy, he didn’t really explore things much with his hands, and he didn’t eat anything that didn’t come pureed. This year, well, a lot has changed.

My wonderful, incredible, fabulous husband let me sleep in Saturday morning while he and Eric snuck out to get donut holes. Eric nibbled on his as he always does, eating the outsides with all their sugar and glaze while trying to leave the insides sit. I offered one to Danny not really sure how he’d handle it, urging him to take a bite.

I didn’t mean he should eat the thing in one bite.

However, he thought that would be the best way to do it. I fished it out and broke it in two, after doing what all good parents do and snapping some awesome pictures.

And to think, not 6 months ago we were so excited because he would pick up and eat tiny little nearly-crumb-sized pieces of muffins and a bowl of Jello. Silly kid.

Eric discovered Daddy’s shoes one day, and seeing him wander around in his too-big shoes, I realized something: I can’t picture my kids grown up.

Honestly. I seriously can’t. I can picture them a few years down the road, but as grown men? Just can’t do it.

I wonder to myself sometimes about who and what they might be. Eric, right now, with his love of learning and trying to figure out how things work might be some kind of scientist… Danny, who knows? He’s still so young that we’re just starting to see glimpses of his personality, and what we see doesn’t give me a whole lot of clues.

I hope they’re compassionate and thoughtful. I hope they’re kind. I hope they’re strong, brave against the world.

Honestly, I hope they’re a lot like their dad.

There’s so much I want to teach them, and I feel like it’s me and not them that has the big shoes to fill at times. I mean, we’re raising brand new people. That’s kind of heavy when you think about it – which I seldom do. I’d much rather play with cars and monkeys and chase them around the room.

I hope they grow up without ever letting go of the kid in them.

Though maybe…maybe this one will grow up and start actually behaving for the camera again?

Nah. Too much to ask.

I’ve never seen myself as much of a politic-y person. I stand up for what I believe in, of course, but have never really been the type to go out and advocate for anything. Advocating for my children comes naturally, but past that, it’s a struggle for me. I worry about losing the right balance, of crossing the line from advocating to unnecessarily pushing and offending people, and in the end I err on the side of caution.

That being said, there are moments that I just want to scream at the top of my lungs, topics that need a spotlight shone on them that just are not. Stillbirth stands out as a big one in my mind simply because it is a topic that seems to draw willing ignorance. People tend to shy away from the topic because it’s frightening, and I understand that fear…but how are we ever going to find ways to prevent it if no one will talk about it? Simple things – kick counts, open communication with your doctor, awareness of your baby’s active times of day – may not save all the babies, but it could save some.

I wonder, sometimes, at the lack of awareness of CMV and think it falls down to the same reasoning: ignorance due to fear. Unfortunately, it’s less a matter of willing ignorance in this case, because no one even presents the topic to be discussed. Because there is (so far) no vaccine and no cure, and there is that assumed chance of immunity, it just isn’t brought up. Why needlessly worry the mother? Why cause fear?

Because awareness can lead to prevention, that’s why. If someone had told me, when I got pregnant with Danny, that there was a virus that could leave him disabled or dead, I damn well would have done everything I could to prevent it. Eric and I shared drinks all the time, I nibbled on his food when he let it sit, I wasn’t the greatest about washing my hands, and accepted sloppy drooly baby kisses on the mouth. I practically put up a neon sign: “CMV Rest Stop, Come On In!”

With no cure, there is only prevention, and prevention only happens with awareness.

A friend of mine has a quote that she shares with everyone she meets online: Speak your mind, even if your voice shakes. I’m not a big advocate person, but sometimes, it’s worth it to step up and speak out.

With that in mind, I and a number of CMV moms made videos for a pretty amazing project. There’s a new movie, Extraordinary Measures, that’s coming out (or maybe it’s out already?). The movie is based on a true story of a father with special needs children, going to any length he can to find a cure and save their lives. To promote the movie, they opened up their website to build what they call an inspirational quilt of videos from parents of children with special needs. One will be chosen to win a bunch of money for a charity of their choice toward their special need. There’s voting involved, more votes for more chances, and honestly I didn’t want to get involved in that aspect as much…but our goal was to have as many CMV videos up there as we could get, if nothing else to raise awareness and share our message.

If you want to see the quilt, it is at this website. The videos are all pretty amazing that I’ve seen, incredible and heart wrenching stories. I’ve tried to watch many of them, so I can make myself aware, just like I hope others do with our CMV videos.

Viewing the other CMV videos, especially, has not only reminded me how lucky we are, but reminded me how important it is to speak out now and then, to try to prevent other children from having to live with the life-long ramifications. Especially right now, at this time of year: two years ago, I was 7 months pregnant and coming down with CMV, and one year ago, I spent an entire day in the hospital waiting room while Danny went through his cochlear implant surgery that he shouldn’t have needed, if I hadn’t gotten sick.

How far we’ve come in two short years.

My Video

The why stage has begun.

Not asking why here – just being a dinosaur.

I’ve always known of the stage that kids just constantly ask why, but I never knew when to expect it. Knowing a few other kids that passed it long ago, I wondered if maybe Eric had skipped it altogether. It’s a well known milestone of learning, and parental frustration at times too, but oddly one I was kind of looking forward to.

Now there’s a statement to ask “why” about.

Every time I ask Eric to do something, tell him to do something, or it seems make any kind of statement at all, it begins without hesitation.

“Why?”

“Because these socks are Daddy’s, so we need to put them in Daddy’s drawer.”

“Why?”

“So Daddy knows where to find them.”

“Why?”

“Because Daddy needs to wear socks to keep his feet warm.”

“Why?”

“Because it’s cold outside.”

“Why?”

“Because God said so.”

“…Why?”

Because, son, there is nothing more that I would like to do than have a philosophical discussion with a 3 year old about God’s reasoning.

Seriously though, I appreciate this stage for what it is. Eric simply is looking to learn more about the world around him, and is taking an active role in discovery. That’s fabulous and wonderful…even if I can only answer the same question so many times before my head explodes.

It’s another one of the signs that he’s growing up, I guess. Sort of like his sleeping. They say they’re babies until they stop sleeping with their bum up in the air… Well, those days? They’re long gone.

But he’s still dang cute when he’s asleep. And you know what? He isn’t asking “why,” either.

We have been tossing the idea of orthotics around for quite some time with Danny. In keeping with what, over time, I see as a general left side weakness for Danny, his left foot has a tendency to be weaker than the right. Both feet, actually, roll inward when he walks barefoot. We saw this pretty extreme before he was walking, but once he started we gave him some time to gain strength…and he did! 3 or so months later, however, he still rolls his ankles inward, and so his physical therapist and we decided it was time to get him some support.

The extra time and strength he gained means that our original idea of Sure Step orthotics – a brace that would wrap around his foot and ankle entirely – is no longer our first direction. Instead, we have “downgraded” a little and have gotten Danny a set of Pollywogs. At the fitting, the orthotic specialist said that if it was just his right foot, he wouldn’t be concerned because of his age and how short a time he’s been walking. Because the left is more pronounced, though, it won’t hurt to give it a shot.

These slide right into his shoe in place of the normal pad, and are foam so they have a little bit of give for comfort while still providing good support. The wrap around the back gives his heel a bit more support to help keep his foot in better alignment, and he has a bit of built up arch support to keep it from collapsing as well. We slipped it in and had him walk around and he did a lot of staring at his feet for the first little bit, but he has taken to it well. We started him with just a couple hours (one hour increments), and are building him up to where we just leave them in his shoes and forget about them, and he wears them like normal.

Hopefully, he will start to gain a bit of stability that he’s been lacking. In 3-6 months, when he outgrows them, we’ll re-evaluate to decide if we need the same thing, more support (full bracing), or if he’s corrected enough with this help that he no longer needs them.

Eric, seeing the cool bright yellow things in Danny’s shoes, has decided he wants a pair too. Yellow is, after all, his favorite color.

Late last week, one of Danny’s teachers at daycare wrote his daily note and included a little line: “It’s been so fun watching Danny progress and change just in the last month!” It got me thinking, and it is so true… A lot of times the focus now seems to be so much on his language, the speed it is progressing (which is, not super speedy), and I miss all the other little triumphs of a CMV kiddo.

The truth is, for a symptomatic CMV newborn, there are a lot of things that is it assumed they won’t do. Of course, there is a (slim) chance they will beat the odds, but you prepare for a lot of pretty scary stuff. For all Danny takes his time, he does amazing things. A huge shift just in the past month or so has been his attention span. He came out of his shell when he first got his implants activated, but he has always been a child who likes to blaze his own trail, wandering away from activities and crowds to do his own thing. In therapy and in school, he is doing so much better at paying attention! He will sit and work/play, he has started to show good interest in coloring and finger painting, he’s just being more attentive all around. He actually takes to tasks; for example, in PT we are working on stairs and on jumping, and he will bounce with us, he will walk up and down steps over and over again to practice and to learn. Repetition is how babies and toddlers learn, and he’s actually agreeing to do it – even initiating it on his own in some cases, he loves to go up and down small steps!

One area I’ve really noticed improvement in lately is his left hand. Forever, pretty much, he’s had a very strong preference for his right…almost like he forgets he even has a left hand for tasks, unlike most babies and toddlers who interchange all the time. He can use it for two handed tasks – he never had trouble with it crawling or climbing or carrying big objects – but he just didn’t, and if we tried to get him to work with it, he would fight us and refuse. This month, he’s experimenting with it a lot. If I give him something in his right hand, he will use his left for ling checks (picking up and putting toys in a bucket), peg puzzles, even picking things up off the ground! He also has started to clap; for the longest time, he would never mimic a clap for us, but just this past week he has multiple times. The improved coordination and willingness to learn is huge to me! He’s even learning to use his left hand to escape from his CI harness…which is a win and a challenge at the same time.

What it’s coming down to in the end is that working with Danny, helping him learn, is less a matter of his true limitations and more a matter of patience and a battle of wills. He proves over and over again that he can, it’s just figuring out how to get it so that he will. I imagine, when we take him in for his next NICU follow up in a few weeks, they’ll tell me again that he is months behind his actual age…but I am learning slowly to take that in stride and have confidence that he will get there. It is more of a struggle with his language than other things I think, because progress in that area is so much harder to track, but we’ve even seen a few things there too: while he isn’t using them in correct context yet, this week he is mimicking “hi” and “uh oh.” Now we just have to focus on teaching him when we use those words…and we might actually be able to dub him as having a “first word!”

2010 is seeming, so far, just like any other year. The holidays are over and our routines are back in place, and we start into the long march of winter. Eric has gone from asking to put the Christmas tree back up to announcing that “Christmas is over – it’s January!” Our therapies have started back up, and it’s been nice to see everyone again and settle back into life as we know it.

Eric is finally showing himself to be an actual toddler and discovering the joy of movies. We’ve discovered the first movie to truly catch his attention: Pooh’s Heffalump Movie. He is now constantly asking to watch it, though he still tends to play with toys while it’s on about half of the time. He’s also discovering a fledgingly love of video games that makes his parents proud!

Then there’s Danny, who is … well … Danny. We’ve been picking up a few new ideas for working with him with language, and refining old ones, and now we go back to waiting to see the pay out. Like many second children, he tends to let his brother talk for him, but we’re starting to see those glimmers of understanding that give us hope. And then there are moments that knock us over. In his high chair today, I took off the tray, held him in place a moment, and asked him if he wanted down. Pretty immediately, he pipes up, “mowm!”

With only two expressive consonants, I’ll take that any day.

And so life rolls along. Winter adventures are sometimes hard to come by, but we’re enjoying every minute otherwise. Life doesn’t have to be exciting to be full of joy when you’ve got two small kids!

I was tempted to call this “the things we do for our kids,” because a couple of times I warned Eric that this was going on the list with my 3 day labor to remind him of when he’s 17 and ungrateful.

All through the Christmas season, when we would go to Costco, we saw it: a marble roller coaster with loops and spirals and gears, and a motor to take the marbles back up again. Now, being the kind of parents we are, our immediate thought was, “I want one!! Er, I mean, Eric does!!” I have no shame in admitted I totally wanted to play with it myself, and John wanted to probably 10 times more than I did. We kept resisting because of the price tag, though, and the logistics of the thing. Where would we put it? Was Eric truly old enough?

Eventually, it disappeared, and our debate on whether to get one or not was rendered obsolete. We were much disappointed, too; John had nearly decided to get one himself, and I had nearly decided to get one for him. I snuck over a couple times, hoping it would reappear in a different spot, but it was well and truly gone.

At our first trip to Costco after the holidays, we were wandering the aisles and discovered the clearance section where they were getting rid of the last of their Christmas inventory. We found something else and picked it up, and as we went to walk away, we spotted it: the marble set, something like $20 cheaper and seemingly untouched. Someone must have returned it! Yes! The debate was over; it was in our cart and away we went.

When we went to put it together, we discovered why it had been returned.

Bags. Bags and bags and bags. This photo only has half of them. In each bag, dozens and dozens of tiny little parts and a 68 page instruction guide on how to put it together. I commented to John early on that it was a good thing he was an engineer and I was an engineering candidate before choosing a different path in university, because otherwise, this would have totally dashed our hopes of having our marble tower. He agreed, and we set to work, him calling out pieces and me organizing the bags so I could find them all quickly for him to build with.

The work started slowly, but eventually found a rhythm to it. Danny was obsessed with it, trying to grab parts and check them out. Have we mentioned he either doesn’t understand “no” yet or he (more likely) ignores it 75% of the time? Eric was a little better about leaving it be, but he desperately wanted to help build, so I delegated him the runner and would give him pieces to give to Daddy sitting a foot away. The instruction guide was in three parts, and randomly we’d run into a page announcing, “Congratulations! Stage 1 is complete!” Only…a heck of a lot more to go.

But finally – something like 3 and a half hours later – it was done.

And it was awesome.

Eric agrees.

(Danny, by that point, was in bed. He probably would have tried to eat the marbles if he hadn’t been.)

I’ve always been an over-achiever. It started young, and through school it just became a part of who I was. I was always at the top of the class, on special committees and groups and councils, even at work still I have made a spot for myself as one of the key members of our team, even if I haven’t had much room for promotion yet. Eric is a lot like I am… He excels in whatever he puts his mind to, and he likes to challenge himself. He finds new ways to accomplish the things he wants, he loves to do puzzles, he picks up on things quickly.

Sometimes I wonder if that isn’t part of why it’s so hard for me with Danny some days.

Danny is … not much of the above. Now, that doesn’t mean he’s a stupid child by any stretch; he is very smart when he wants to be, picks up on a lot and misses little. He has a stubborn streak a mile wide, and when he sets his mind to something, he will accomplish it. The problem comes in that he doesn’t often set his mind to things, or at least, the things we wish he would.

Whether it be the CMV and some as of yet undiagnosed disability or learning disorder, or his hearing loss and the fact that he is in daycare and not being stayed at home with one on one, or just his general self, Danny is often the “one left behind” in groups. I’m a part of an online community of mothers, and I’m a part of two age groups, one group of moms of kids due in July 2006 and one group with kids with in April 2008. Once Danny and the other babies were born, he quickly established himself at the back of the pack with one other baby. I’ve worked hard to overcome the fact that everyone else hits things a good ways before I do, and they’re a good group of ladies who don’t make a deal out of it, who are friends…but it’s rough sometimes, there’s no denying it. When nearly everyone else was walking and Danny still wasn’t even crawling, it was rough. Now, they’re all often discussing how much their children are saying, or understanding, what new words they’re picking up, how they’re starting to talk in two, three, four word sentences…and it’s rough.

At daycare, we purposefully hold him behind a room because it’s where his development is, and because the younger room has a much better listening environment. I fully support the decision, and am glad they’re willing to accommodate us, because I know he gets so much more out of being in that room – but every time someone asks me if Danny’s been moved up to the next room yet, there’s a moment of awkwardness.

When we approached Danny’s cochlear implant surgery, I was lucky enough to find two other blogs of children about Danny’s age, who would be getting implants at around the same time. I was thrilled! Here, at least, Danny would be on equal footing. Here, Danny would fit in. One of the toddlers celebrated his first hearing birthday this week, the one year mark of their cochlear implant activation. He understands everything his parents say, to the point of having to spell words around him, and has over 150 expressive word approximations. He has more than caught up to an age appropriate level for language. I am absolutely thrilled!! I have followed this little guy and his mom for so long, and know first hand what they’ve been through, and this is just so exciting and wonderful and incredible. Genuinely and truly, I am thankful for the progress he’s made, and very happy for him and his family.

…At the same time, it sucks, because once again Danny is left in the dust.

They say you can’t compare your child to anyone else, and I agree with that. I follow that. Eric had some spots where he was “behind” the general crowd for a while, and he’s caught up and then some. I know in the long run it usually balances out. I try to set aside the immediate fear that comes from it too, because with CMV there is always that little voice in the back of your head that screams “brain damage! disability! apraxia! epic fail!” I also try to focus on how far Danny has come in such a short time, because he has had so much going on and has accomplished so much that surely that’s taken away from his language development.

But dangit, just once I wish I wouldn’t be left feeling a million miles behind. And I hate that I’m “that mother,” the one that always feels bad for herself when someone else has exciting news. I wish I could get used to it. In Danny’s therapy session yesterday with our Claire, she reminded me that Rome wasn’t built in a day, and I responded that I knew that, but I couldn’t help thinking some days that Rome wasn’t built in a million years either.

We’ll get there.

He’ll get there.

And one day, I’ll stop wishing for it to be a little bit sooner, a little bit faster, too.