In the blink of an eye.

Photo by his Mom

In the interest of posting here more often I’m going back to what has worked for me in the past and putting up a picture of Liam from school.  It won’t be long now before Liam spends more time in a classroom filled with other students and Karin won’t be able to acoompany him or take pictures to send along to me at work.  I should take advantage of the situation while I can.

Anyway, Look at that big boy of mine! I don’t know where he got the idea that growing up so quickly was acceptable but he’s going ahead and doing it regardless, the little brat.

Waiting for Class to End.

Every morning at about 11:15am I glance at the clock and shout “oh shit, I’m going to be late for work!”, kiss Karin and Liam goodbye before hurrying out to the car leaving them to their daily routine. A daily routine that since I don’t witness I just assume includes lot’s and lot’s of playtime, naps and fun for them both while I slave away at the old salt mine. There must be helper elves or magical fairies getting all the cooking, cleaning, laundry, medical calls, Liam care and the other house stuff done, I don’t really know how that all works. The point is I’m not there, and so I know very well what it feels like to miss Liam. I do it every day.

Aside from a little joke in my last blog post I was very supportive and understanding of Karin’s feelings of loss and worry when she couldn’t follow her baby into his classroom at school last week. His first day in the full classroom setting with other children. I was understanding and supportive yet all the while thinking that I was immune to such feelings. After all, I left him behind to head out to work for nine hours every day I knew what missing the boy felt like, but only when I was the one doing the leaving.

PT/OT were fun for Liam this week. It was such a beautiful spring day that it was a no brainer that he would be spending it outside on the playground instead of inside on a padded mat. Their swing is different from ours but is supportive enough that he was able to swing a little bit, but it was much too soothing. He almost fell asleep. No, sleeping is not ideal when we’re trying to get him to work his core and head control so off to the big boy slide we went to really wake him up.

Scared the hell out of him, but as I may have mentioned before in other blogs fear shows an awareness to your surroundings and since he wasn’t in any real danger, a little scare can be a good thing. Got his heart rate up that’s for sure. By the time he reached the bottom though he had look of pleasure on his face and we sent him back down again three more times.

Can I just take second here to direct your attention to that picture again. See anything missing? Pretty cool huh?

Once back inside Liam participated in his playgroup which is always wonderful since Karin and I are allowed to help out with play group. Seeing other children take an interest in Liam warms my heart. We threw and rolled and kicked different colored balls all around the room for about a half an hour until the proverbial bell rang and it was time for Liam to head off to class.

I followed Liam, his speech therapist, and his nurse into the hall and it suddenly dawned on me that although doing it in a wheelchair and with the help of his nurse, Liam was essentially walking away from me to a place where I wasn’t allowed to follow. Instead of me saying goodbye on my way out to work, he was saying goodbye to me. I didn’t like that at all. I didn’t even know what to say. Sensing that I was about to say something, Liam’s nurse and therapist waited and looked at me, while keeping one hand on his stroller struggling to let it and him go.

“uh, . . . Uh, . . You be a good boy.” I found some words to fill the awkward silence and kissed the top of Liam’s head with Karin behind me probably grinning from ear to ear knowing that the heart ache and fear that I had given her such a hard time about last week had just washed over me. We walked to the couches at the front office while Liam and his crew headed down the hall in the other direction. Liam is in class for an hour (making all of this seem even more silly) so we waited by the front office with our kindles instead of leaving and picking him up.

“It’s hard watching him leave you like that isn’t it?” Karin asked me with a grin.

“It really is!” I gave her a hug and we sat together and read glancing down to the end of the hall toward the classroom between almost every word. Waiting for our baby boy to come back from his big boy classroom.


Picture Pages

I haven’t been feeling very “wordy” lately. Used it all up during the interview on Saturday I guess. The film shoot went well even though it was at times overwhelming and ultimately surreal. They were here for a bit over four hours, hopefully they’ll find a minute or two of footage that makes it look like I know what I’m talking about.

Anyway, like I said, me and the words haven’t been getting along and so here’s a few awesome pictures of Liam from the past week or so.

More bike time at school last week.  As for the pink crocs, they are formerly the shoes of the daughter of Liam’s physical therapist who screwed them onto the pedals of the bike so that Liam can put his foot inside them while still wearing his own shoes. Clever, clever physical therapist.

Milestone alert! Last Thursday Liam (and his daytime nurse, who took the photo) left Mom out in the hall and had his first afternoon of classroom time without a parent in the room with him.  It was difficult for Karin to have him go into a room that she couldn’t enter with him. I suppose the only other time that’s ever happened before is every time he’s been wheeled into the operating room. Mom and Son survived the brutal ordeal of separation just fine though. (Liam a little more so than his Mom)

I’m having a ton of fun playing with the camera in my phone and the apps that let me experiment with different filters for film effects and frames. It’s fun.

And finally, won’t be long now and Liam will be moving out of his crib and into a big boy bed. Getting a little crowded in there. (picture by Karin this morning)

With that I take leave of you all. We have a night nurse tonight. For the first time in twelve days I might actually get a full night of sleep!

Talk to you later.

A Father in the Future

As the story goes, each of my siblings and I when being potty trained would save our first “gift” in the potty all day long to show my father when he returned home from work. So proud of ourselves, and of course for his part, Dad would excitedly look in and tell each of us how proud he was.

And such is life for all of us working parents. Forever hearing about our child’s momentous events and firsts from spouses, babysitters, and teachers.

I work in the same hospital as the NICU where Liam was a patient. About a block away (and connected by an underground tunnel, no joke) is the Children’s Hospital where the PICU is. Because of this I was able to be present for many  of the “firsts” of Liam’s first 9 months. His first bath, the move from isolette to crib, The first moment without tubes in his nose or mouth or tape on his face, and yes, even his first seizure I was lucky enough to be present for.

But now that Liam is going to school, new things are happening nearly every day. How the hell can a parent possibly keep up? First it was sitting up straight at a desk, and then of course there was the slide which I was lucky enough to be there for. Well last week it was ball skills. Rolling a ball back and forth with his day nurse, of all people. I mean c’mon, rolling a ball back and forth? Sounds an awful lot like Liam’ s first game of catch to me.

And where was I? Oh . .  that’s right, I was working my ass off to support my family, like a sucker.

But Monday? On monday my big boy, rode a bike.

Since it’s 2012 and I have an awesome wife who keeps me in the loop instead of waiting until I got home from work that night, I was looking at photos of the ride on my cell phone before the ride was even over. As much as I would have loved to be there with him, there is no better way to brighten a day at work than to get a text message like that.

I gotta admit. It’s pretty cool living in the future.



Reading, Writing, Arithmetic

When we first started talking about sending Liam to school my biggest fear was that he would spend his time sitting in his wheelchair tucked towards the corner of the room. Somewhere out of the way. If I’m being honest I guess I just didn’t really see what Liam would get out of school. At home he’s safe. At home we can teach him. But at the end of the day, as far as children close to his age are concerned, at home he’s all alone.

Liam can fall asleep in any room for any number of reasons known only to him. Whether he’s overwhelmed or just plain bored if he doesn’t like what’s going on he can and will just shut it down and sleep regardless of how loud, or bright or crowded the room is. As a matter of fact while Liam may be globally delayed he’s still clever enough to fake sleeping to get out of interacting with people or crowds he doesn’t want to see. Not clever enough to realize that his mom and dad can tell when he’s faking by his heartrate on his monitor and respiratory rate of his ventilator, but clever enough to convince almost anyone else.

So before Liam’s first day of going to school I had visions of a sleeping kid frustrating his teachers and therapists.

Instead, after only a few weeks of therapies at school I took the day off of work to give Karin a break at home and took Liam to school myself, and what did I find?

Playing on a slide.

His first experience in sliding of course, and the first three times scared the daylights out of him but on his last run he seemed to understand that someone would be at the bottom to catch him and though it didn’t look like he loved it, he at least tolerated for my sake. He’s a trooper that way.

And if you ask me, being scared is ok, at least it’s a response. The fact that he was scared showed that he was aware of his surroundings which while not surprising is reassuring to see in such a marked way. It was exciting for all of us. His therapists (OT and PT, both in the picture) included. You know Liam, he’s a charmer, got those ladies wrapped around his finger already. (Especially his OT who he is completely infatuated with. It’s adorable, He won’t take his eyes off her and will do anything she asks.)

After his own therapies had ended Liam was invitied to participate in the autism group’s parachute playgroup! He and 8 other little boys and girls shook a huge parachute, fast and then slow, high and then low. We put Liam in his chair in the center on top and the kids shook the chute as hard as they could while the wind and noise drove him crazy in the best possible way. Waving his arms and smiling from ear to ear.

After explaining about being gentle Liam’s OT told all the other kids that Liam loves to share and that they were all welcome to touch Liam’s ventilator tubes. The bumpy texture of those plastic hoses were the hit of the playgroup. SUch a hit in fact that he was invited back to the playgroup every week! I’m man enough to admit that it was all I could to keep from crying in the classroom.

The things I see Liam doing at school are things that I doubt we would have tried pushing him towards otherwise. Those therapists make him work harder both physically and mentally then I’ve ever seen him work and it is already paying dividends in behaviors and movement at home. I’m too cynical to think that school and therapy will be this successful, will be this . . . easy, but for right now and with this team… I’m not afraid of school anymore.