So, a few things and of course a picture just to get me back into the posting routine.

Last week both LITTLE MAMMA and TRICKY CUSTOMER both posted about some of the awkward and sometimes inappropriate questions they get asked about their kids when out and about.  They both made me think about my own experiences with that. For Liam with the trache and ventilator, and the wheelchair, and the fact that Liam will not speak or walk, I know that the stares and the odd questions just aren’t ever going away. And I’m ok with that. In fact, I’d rather someone ask a question even if it may be awkwardly asked or inappropriate because it at least gives us an opportunity to talk about Liam and to educate one more person about special needs and how to be more accepting of children no matter their ability.  It’s only the look of fear and avoidance as if Miller Dieker Syndrome or any other chromosomal translocation is contagious (they’re not) that do get to me.

Last year we were asked to be on a local morning TV show to help promote a fundraiser for Hasbro Children’s Hospital. While in the green room waiting for our chance to shine we mingled with the TAPS guys. You know, the Ghost Hunters, over coffee.  They were nice enough but the conversation stayed small.  The weather, their book, nothing at all about Liam which is fine. The world doesn’t revolve around us and not every chat with him in the room needs to be about him. After a few minutes the last guest of the morning, a gubernatorial candidate arrived with his assistant.  He took his coat off, laid it on the chair looked around the room and walked right over to us.

“So, What’s he got?” he asked matter-of-factly  while rubbing his hands together and leaning in to get a closer look at Liam’s adorable face. Just like that. You could tell by the looks on their faces that the people around us were worried that we would be offended by the directness of the question. But to be honest it was the exact opposite. I respected the fact that he wanted to know what was going on with Liam. Rather than worrying so much about being polite that he didn’t ask anything at all but instead just fired away.

But that’s when out and about. Because while I’ve been thinking about the questions from strangers for the last week or so I’ve also been thinking about the crazy questions from doctors that frustrate me to no end! Even when they aren’t directed at me.

On Monday Liam’s best buddy was admitted to the hospital. Our families met through our children’s similar special needs and have grown close over the last few years. While visiting them the other day I happened to be in the room while a med student came in to introduce herself to Dad. Nice enough lady but as this kid (and by extension his father) was getting more and more uncomfortable Doctor wanted to ask the most ridiculous questions.

When you see a kid with a trache you can safely assume that Mom and Dad know what a blood gas is. When you see said father performing suction on that kid’s trache (while the nurse stands by WATCHING?!) you can guess that dad knows what a ventilator is. When the kid is crying, grinding his teeth, and arching no matter what mom and dad do, and the parent asks repeatedly for the PRN pain meds that are ordered, the follow-up question “do you think he’s uncomfortable dad?” may come off as more than a little silly.

But Eric, You may ask,  You said yourself that she was only coming in to introduce herself, How was she supposed to know that Dad was aware of these things? To which I would respond that there is a big old binder called the patient’s Chart. It’s just chock full of information about the patient and maybe a quick glance at that before hitting the room may be in order. Hell, even if you can’t read the whole thing, how about the patient History & Physical. It’s generally only a few pages long and is prominently placed right at the front of the chart (I know these things as I spent 2 summers working in the medical records department of another hospital when I was in college) if you see that said kiddo spent the first 7 months of his life in a hospital the parents are probably pretty knowledgeable of these things.

Now I’ll admit that there probably are some parents out there that don’t know these things, that aren’t well versed in medical speak and maybe are so scared or in denial that maybe they do need things re-explained over and over again but to that I say utilize that nurse who is in the room a whole lot more than the doctors.  Would it be that difficult to get a read on the family by asking the nurse? Because while you as a med student may be asking these things simply for your own information, you are a part of a team. After one doctor asks there are three or four more that will eventually make their way in to the room to ask THE SAME DAMN QUESTIONS!!! Just being there is stressful enough as it is. Answering the same questions over and over again can turn stressful into infuriating.

But I’m digressing and don’t think that I get many Med Student readers to the blog anyway (although I do know of at least one Doctor). I guess I can just sum this whole rambly mess of a blog up with the fact that outside of the hospital I will answer any and all questions. Makes no difference if it’s from friends, family or complete strangers. Fire away! But get us back in the hospital and I have zero patience for stupid or repeated questions.

I didn’t really mean for this post to turn into such a rant but hey that’s what it turned into.  Here, I’ll make it up to you with another photo of the boy in his swing last weekend.

Talk to you later.

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.

It’s things like this being sent to my phone and work computer every day that show how I have the best valentine anyone could ever ask for.

Happy Valentine’s Day everybody. Try not to let your jealousy of me ruin your day too much.

I tried to think of something clever to write about haircuts, but there’s really nothing there.

It was haircut day for the Olson men. I cut Liam’s hair and then Karin cut mine. As you can see, we don’t cut our hair very often but when we do we just take it all off.

It’s a noteworthy event.

What big game? You might have to be more specific. There was a game on?

I don't know what you're talking about.

What I do know is that pitchers and catchers break the spring next week so . . .

Let's go Red Sox.

(Karin, the yankee fan, took the photo.)

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.

Hey!

Pretty awesome picture right?

You have no idea.

So longtime readers may remember our troubles with our medical supply company last year. Well imagine, if you will, that times a thousand. Sometimes you need to throw in the trump card and change the game. Sometimes a picture can be that trump card.

I work for a large international corporation. Without getting into the details, let’s just say it’s big. Really big. So when they make decisions on health insurance and the like they are thinking about hundreds of thousands of employees. On January 1st my insurance coverage changed companies.

The change hasn’t been nearly as bad as I thought, since so far they are covering close to everything my last insurer did, but the process of changing was a nightmare. Each and every item on our four page order guide had to be re-evaluated and re-approved involving hours and hours of phone calls over the course of three days.  Hours and hours of phone calls.

Karin is a saint.

After the first day filled with roadblocks and attitude Karin had an idea. An epiphany  if you will. A game changer.

“Do you have an email address I can use if I have any questions before we talk again tomorrow?” Karin asked the supply company rep. and her plan was set into motion.

Numbers on a screen. Ventilator circuits, sterile sponges, oximeter probes, suction catheters, no matter that these things are essential to people’s lives, these are just invoice numbers on a screen going to “patients”. Last name, First Name, Shipping Address. Not people, patients. Numbers on a screen.

Until someone throws them a curve ball. And Karin? Well she’s got a hell of a hook.

Off went the email. A simple hello, and a thanks for working on the list but with the picture above as an attachment. The poor little customer service rep. Karin really shouldn’t have assulted her with that much cute at once. It’s not even fair.

“Oh My God! Your son is the most adorable thing! I’ve printed out the picture and it’s hanging at my desk.” Our rep called early the next day. First call of the morning, as a matter of fact. “Let’s run through this so I can make sure we get EVERYTHING approved and sent to you now that you’ve already made me cry at my desk today.”

Like I said . . . Game Changer.

Gotta keep an eye on my Mom, She's sneaky like that.

Houston or Baltimore. Liam and I await our next opponent.

Go Patriots.

*pic by Karin, obviously.

“Mom and Dad Olson, I’ll need to talk to you in private for a few minutes. We got the results of Liam’s MRI.”

I can’t honestly say that I’ve ever been punched directly in the gut but I’m pretty sure that I know what it feels like. We made our way to Liam’s isolette as quickly as possible to check on our little tough guy and maybe get a chance to touch him really quick. Touching Liam had still been a rare luxury then and Karin had only held him once so far. We grabbed a few touches and blew a bunch of kisses before heading to the dreaded “family room” for our sit down with Liam’s attending physician, Liam’s nurse for that day, the chief resident of the unit at the time, and a nurse practitioner. There was probably a social worker in there too but I don’t remember them saying anything relevant.

“There’s something wrong with your son’s brain. . . It’s smooth. . . Lissencephaly . . . it means smooth brain.” he picked up a dark red dry-erase marker and drew a blob on the whiteboard that I suppose got the point across but I wouldn’t have gone with brain if we had been playing Pictionary. Dr. E is a short man, balding and speaks with a heavy Spanish accent. He pauses frequently as he speaks you can almost see the translation process happening in his head. He is a patient, compassionate and utterly brilliant man and doctor but as he tried his best to give us horrible news each of those pauses felt like an eternity. “I only have the preliminary findings so far . . and I am not a specialist in neurology . . . but I can tell you that this is not a mild case to your son’s brain. . . We’ll have to talk to a specialist tomorrow.”

Karin and I tried to calm our tears to listen more intently but could only muster sobs and shocked silence while Dr. E, as if trying to alleviate his own nervousness by doing something with his hands started drawing a much more detailed diagram of a normal and abnormal brain from side and above viewpoints.

“He probably will not ever speak . . . or walk. . . His brain will most likely stay like an infant’s. We don’t know yet . . . if it has effected any of the other organs or instinctual functions.” the words seemed to hang there and while it was probably only a few minutes into the meeting I felt as if I had spent days in that room being watched. Still, all I could think of was Liam laying peacefully in his isolette. His little fingers and toes. His peaceful face all covered in tape.

The other nurses and doctors sat in silence as hard words seemed to hang stiffly in the air. The red brain drawings mocking me from the whiteboard across the room. I wiped my face from what tears I could and grabbed Karin to my chest and squeezed her as hard as I could whispering into her ear that whatever the future holds we were still the parents of a beautiful baby boy.

The nurse practitioner who had handed us boxes of tissue cut the silence and asked if we had any questions and while we would end up staying in that room talking for a long while with as many questions as my shocked mind could come up with, it was my first question that seemed to catch them off guard.

“do you think I’ll still get to hold him?”

*******

Chances are that if you are reading this blog you are familiar with the essay common to families of children with special needs ‘Welcome to Holland‘. It’s nice. It’s simple. It’s short and it’s sweet and it’s a nice way to help friends and other family feel like they’ll “get” what your going through. If it helped or helps you or someone close to you great! And I truly mean that, but I found it really hard to relate to. It minimizes too much on both ends of the metaphorical “trip” but I guess if nothing else it does give us a useful metaphor. So I’ll use it to help tell our story. To tell about how we stopped worrying about the destination and focused on our journey.

At least once during each of Liam’s hospital stays someone, be it doctor, nurse, or social worker, will ask us how we do it? How do we stay so upbeat even during the darkest times? Now don’t get me wrong, in private we’re not always upbeat. I mean we are human. But I’d agree that for the most part we are a very happy family given the complexity of Liam’s condition. I understand the question. I do, even if I sometimes suspect that we’re being asked because they think we are in denial about how serious things really are. Believe me, no one on this earth knows how serious things really are. But what does stressing even further about them accomplish other than wasting the precious moments that we are lucky enough to have with Liam?

So how do we do it? How did we come to accept landing in Holland with Liam quicker than many other travelers?

I guess it’s in all the other little trips we took where we didn’t even get to leave the airport.

Karin was put on this earth to be a mother. She has so much love to give that it would cause her harm to not have someone to share it with. Believe me when I tell you that had hospital security not been so tight we probably would have left that nicu with a few extra little ones under her jacket. So in one of the universe’s bullshit O’henry style jokes, of course it would be difficult for someone so perfectly made to be a mother have difficulty starting a family.

The universe just isn’t fair.

Liam is the product of our sixth pregnancy. In addition to each of those heartbreaks there was also an unsuccessful IVF/PGD attempt.

Without rehashing all the details, most of the miscarriages happened in the first trimester but not by much.

And of course there was Ben.

Ben Olson was born and passed away at 9:06am on September 22, 2006 at a gestational age of 24 weeks. (Liam was 27) I think of him and the short time we spent together often and not a day goes by that he isn’t missed. I know that he’s always been Liam’s little guardian angel.

So let’s get back to our trip to Italy/holland metaphor. Pregnancy for us was like planning a trip to Italy, getting on the plane flying over italy but getting beat up on the flight then upon landing in holland having a canvas bag thrown over our heads and forced onto another plan that took us directly home and dropped us off without our luggage. 6 different vacations each time being left at home, battered and broken, and of course, the damn tickets were always non refundable.

By the time we were on our trip with Liam we were done planning for where we would end up, we just wanted to go somewhere.

Italy? Holland? Hell, we were happy to land anywhere that would have us. Which is why I think that we were able to embrace parenting a child of special medical needs so quickly. We just wanted a baby to love.

There’s a saying in parenting a special needs child that you often hear about mourning the “typical” child you will never have, to accept the child you do.

Screw mourning. Karin and I had mourned enough. Finally for us, It was time to be parents.

********

Now I’m hardly saying that we were positive and upbeat by the time we left that family meeting. Hardly, in fact, on that fateful Sunday a few weeks after Liam was born we did spend the afternoon crying. And explaining what we knew and didn’t know about liam’s condition to our own parents and cried with them. Worrying more about their acceptance of the facts as grandparents than our own.

We returned to Liam’s bedside as the evening nurse had just arrived and Karin grabbed her as soon as we walked in and said “Eric needs to hold his son tonight.”

A few moments later and after consultations with doctors and respiratory therapists, Liam was placed into my arms. I have a picture of it beside my bed. I squeezed him as gently as I could and I told him I loved him as many times as i could and the three of us sat together as a family the way we have nearly every night since.

The next day we met with Liam’s neurologist and a geneticist. We asked questions and learned more about Liam’s condition. We started enjoying Holland (or whatever damn country this is we ended up in)

That night, three years ago this week, I posted the following message to family and friends who had been following a private website we had set up for sending out updates and info. I’m reposting it in its entirety now for all of you, My new friends and readers, because it rings just as true today, a few weeks after his third birthday as it did three years ago when I wrote it.

How do we do it? Do what? Be a parent? Liam is my son, and I’m the luckiest dad in the world.

The Olson family had a pretty bad day yesterday. We were told that our MRI was not good and that it was some very bad news but the doctor who told us this felt that he didn’t have the expertise to give us any more details than that. I didn’t want to write about it here until I had an actual diagnosis. Liam had a much better day than Karin and I did as he got some rest and weaned from his vent a bit more.

Liam has been diagnosed with a disorder called Lissencephaly which means exactly what its translation is — Smooth Brain. Liam’s brain is smooth meaning that it stopped developing very early on. This is not something new but something that he was born with. Although its severity cannot be totally determined by an MRI we do know that this is not a mild case of the disorder. Liam will have intellect delays as well as difficulty with motor skills. He may not be able to communicate verbally at all. Seizures are usually present as children with Lissencephaly get older. The severity of those symptoms and his potential for the future is also not something that can be determined by an MRI right now and so we will not know for perhaps a year or more how badly this will show.

Let me say first of all that Liam is not in any pain. He is not suffering and we are still working very hard to help him get feeding and breathing on his own so that we can take our little guy home. He still opens his eyes up wide when he hears his mommy and daddy and is gaining weight by the day. Karin and I had a bad day yesterday because we were only told bits and pieces and our own imaginations were left to fill in the rest. Liam had a blood draw that tuckered him out but other than that had a great day because he got to be held by his mommy in the day time and held by his daddy at night!! (thank you for that Caitlin!)

This may sound strange but after talking to a Neurologist and Geneticist today, Karin and I were relieved. We still get to take our boy home. We still get to tell him we love him and although he may not be able to “tell” us he loves us too, the doctors tell us that he will be able to show affection. We don’t care if he never gets out of a bed and never says a word; we already know that we will (and do) love him as much as we would if he were the captain of the football team or the valedictorian of his class. He is our little man and the best parts of our day are when we are sitting by his bedside talking to him. Karin and I know how much we love him and he knows that too which is all that matters. I know that you all will keep us in your prayers and thoughts but please do not feel bad for us. Liam is going to need a bit more love and affection than most children and that is why he has been given to a family with more than enough love to give

As I mentioned yesterday Liam turned 3 over the holidays which means that he aged out of his Early Intervention program. Physical therapy, occupational therapy, and speech services, as most of you know, are now the responsibility of our local school department making today Liam's first day of school.

The mind reels.

School? Already? How could this have happened?

He's not going all day yet. Starting all day school with a classroom full of kids during the heart of flu/rsv season is a risk we are unwilling to take. So even though it's only a few hours a week to get therapies, it's still school.

School? Ack.

I was nervous going in. Maybe nervous isn't the right word, let's try.  . . Scared shitless. Yeah that fits.

Hospitals, doctors these things don't scare me anymore.  I know we can handle them. But it's been a long time since anyone new has been given a try out for Team Liam and all of the sudden we're in a rebuilding year. It's a whole lineup change.

Thankfully his new occupational therapist was confident and experienced enough with both Liam and his ventilator circuit to set my mind at ease.

In no time at all Liam was twisted and stretched out on the huge angled mat you see above. Usually during therapy Liam likes to check out early and fall asleep, but whether it was the change in environment or the ability of the therapist, today he spent the entire session awake and engaged, including playing with his ipad for a while with his new speech therapist.

After an hour of being made to work harder than I've ever seen him try, Liam lay tuckered out on the mat, a look of satisfaction and contentment shining through despite the swollen red cheek of teething from yet another molar poking through (does the teething EVER STOP??)

And so it goes. My little boy just had his first day of "school". Go ahead and look all you want, a prouder papa you will not find.