It took close to thirty minutes but he would eventually make it across the room.

And back again.

Liam independently moved himself from one place to another.

In doing so he demolished my understanding of the terms effort, strength and determination. I am being completely honest when I say that I have no idea where he gets it from. Not from me for sure. I’ve never worked as hard for anything in my life as Liam works to take a walk with his Mama.

To say that I am proud is too common a phrase to use for what moments like this make me feel. This can’t be just pride. There’s got to be some better word for this, I just don’t know what it is.

He wasn’t supposed to do this. Although he wasn’t supposed to thrive, or grow, or eat, or breathe, or come home at all either. But he certainly wasn’t supposed to walk.

Good thing his lazy dad kept forgetting to tell him that.

I’ll talk to you later.

Note: The video was taken by Liam’s nurse who earned himself some big points with me by being quick with his camera so that I could see some good footage  before I even left work that day.

I’ll keep you posted.

But I wanted to move the last post further down the page so I told myself I had to post something tonight and I don’t have anything else ready so it’s back to the old photo vault for a dash of springtime. The more I post these blasts from my photography days the more I want to get the big cameras (both film and digital) out of their boxes upstairs. Last night for example the light before sundown was just about perfect. I almost ran inside to grab a camera to shoot it with, like I would have years ago, but instead I just breathed in some clean spring air and enjoyed it. Being Liam’s dad taught me how to do that. It’s hard to enjoy a moment when your mission is to capture it.

So here are some pretty flowers. Some are from my dad’s greenhouse, some are from a local farmer’s market, but all of them are at least five years old which is making me feel old just typing that. No spring chicken and all that.

Anyway. Things here are good. We are good. Liam is good, thanks for asking. Good things seem to be happening. Some are some very big things that are only in planning stages, others are just little things that make me happy during the day or week. I’m sure I’ll get to sharing it all but that will just have to wait.  I don’t want to get ahead of myself and try to write it all down just yet.

I’m just breathing in this air and enjoying it.

I’ll talk to you later.

The post in question is called Changing the Game. I wrote it in January. And here is the Active Life post that was posted just this past Thursday.[if you really want to see the blatant theft go ahead but I almost didn't even post the link. Why send them any page views at all. hopefully it will be a broken link soon. I have already saved the screenshots anyway In case I need them for some reason.][UPDATE: It's a broken link now. see below]

Someone who identifies themselves only as “admin” for a WordPress blog called ‘An Active Life’ connected to this company Health Connection has taken an entire post and then re-posted it as their own.  They didn’t even change the name of the post, but under the title instead of saying written by Eric W. Olson it says written by “admin”.  There is, at the very bottom of the page, a note that says “Article source” with a link back to my page but that couldn’t be more hidden if they tried which they did, and it doesn’t include my name or the name of this blog just the html for the post they stole.

Article Source? Article fucking source??!!! Whoever you are — you didn’t get inspired by my post and go write your own essay on the same topic. You didn’t use my site as some sort of research material. Hell, you didn’t even mention my name. You saw my work thought that it was pretty good and passed it off as your own. That’s stealing plain and simple. There is a reason that at the bottom of this page it reads All content Copyright Eric W. Olson 2009-2012 unless otherwise noted.

Hey “Admin”, you must read my blog since you found the post in the first place so now I’ll just speak directly to you since there is no way on your blog to contact you other than the 1-800 number given to presumably sell me medical supplies, and a twitter page that hasn’t been touched in a month. (There is a link to a facebook page but I don’t do the whole facebook thing. if anyone wants to go to their facebook and yell at them for me that’d be nice but it’s not necessary)

Here’s the thing, you could have written that you read a cool blog post about a family’s experience with a medical supply company and excerpted a couple of paragraphs and then linked back to my blog and we’d have no problem. You’d still get to relay the information that you wanted to, your audience (if you have one) would get to appreciate the story, and I’d maybe get a few clicks or comments out of the deal. Everybody wins. You see, that’s how this whole sharing on the internet thing works. I post content that you enjoy, and you share it by linking back to MY SITE. Instead you took what I made. You took the work that I put into that post.

You stole from me.

It is not hard to prove that I wrote and posted that essay on January 24, 2012 and then you posted the exact same essay and photographs except this time written by “admin”  on May 17, 2012. you didn’t give me credit and you didn’t ask my permission.

Now that I’ve gone on long enough about what you DID.  Now we’ll talk about what you need TO DO NOW.

Take it down.

I don’t want to be paid and I don’t want any traffic you may link to my site.  I want you to take down the work that you stole from me and stop stealing work from bloggers like me and the blogger who alerted me to your theft, Anne C. Woodlen. [Thank you so much Anne.]

Take it down.

You do not deserve to have pictures of my adorable son on your site. You obviously have no respect for creators of content. I am hoping that it’s because you are using up all of your respect for the patients who need your medical supply products but somehow I doubt it.

Take it down NOW.

If I need to I will pursue more serious professional and legal avenues to ensure that my content is removed from your site. Please don’t make me do that.

Thanks,

Eric.

What pisses me off the most right at this moment is the fact that I am very proud of my last post both for what I wrote and for what my wonderful son did, and I had hoped that it would stay prominently displayed at the top of my blog for a few days . Now this spot has to be wasted by this foolishness. Thanks a bunch.

[Update at 10:20am Monday May 21, 2012: 8 hours after posting this blog the stolen post is now gone and leads to a 404 not found blank screen.  Thank you An Active Life for doing the right thing. ]

He was never supposed to take any.

Low muscle tone. Lissencephaly. Global delay. Seizures of multiple types constantly racking his brain. A three foot circuit (plastic tube) anchoring him to a 20lb ventilator. Liam was never supposed to be able to walk.

Were you a casual acquantance, If you had told me 3 years ago that Liam would walk I would have clumsily said “..uhm well… maybe some day, uh, we don’t really know what he’ll be able to…do.” and then hid somewhere to cry a little about all the things I would never get to see my son accomplish.

If you had told me 2 years ago that Liam would walk I would have said, “Well, we’ll see.” and then quickly changed the subject while thinking to myself, you don’t know that it’s just not possible that Liam will ever walk and you look so happy asking about him I don’t want to bum you out. Then I’d just show you a picture on my phone and we’d move on to talking about how cute he is.

If you’d told me a year ago that Liam would walk I’d happily explain almost every detail of the medical challenges listed above and let you know that Liam will never be able to walk but that was ok. He was my big boy and really all I ask of him is for an occasional smile when I come home from work at night. I’d answer any and all questions without any embarrassment, worry, or uneasiness. trying to convey that, yes I know my son won’t ever walk and so should you. I don’t worry about it anymore and neither should you.

If you had told me 1 month ago that Liam would walk I’d have shown you a video of his first steps(!!!!) tempering your excitment by explaining that Liam will never be able to even stand without the support of his standing equipment and walking was only possible with significant assistance of his physical therapist. No sense in getting anyone’s hopes up that after a few steps in school Liam would be running around causing trouble. After all, a month ago I still thought it impossible.

But that was a whole month ago.

That was a month before this.

That was before I knew that they made walkers that could fully support the body of a little boy with low muscle tone.

Today?

Well today I am AGAIN reminded that nothing is impossible with this boy.  If I ever tell you anything that includes the words “Liam” and “can’t” in the same sentence you have my permission to slap me and remind me of the important word that sentence is missing…

“Yet”

I’ll talk to you later.

While it was never my intention to throw two photo posts in a row at you, our night nurse switched nights this week and my brain has gone all woozy with the change in the routine. No big deal of course, but it did derail some writing plans that I had. I know that throwing up a quick picture post is a cheap cop-out but I do have some other posts about to come your way, I’m just not going to pass up the chance at a full night in bed to finish them.

Besides, we all know that without a steady stream of pictures of cats the whole internet would come crashing down upon us. I know I don’t want that on my conscience. I just wouldn’t be able to sleep at night (or the early morning).

So here you go. Here are some pictures of our cats. Linus (the tuxedo in the picture above) and Calvin (the one with more white fur A.K.A the stupid one) have been with us for 13 and 10 years respectively. Until Liam came home they ruled this household and they have yet to forgive us for bringing him home. They are complete pains in the asses but they’re OUR pains in the asses and we wouldn’t have it any other way.

Night all.

I’ll talk to you later.

BUT, I have posted a blog three days in a row and I was hoping to keep that trend going strong. Even if it is only a few old photos.

So here you go, three old photos of a particularly personable and photogenic giraffe from my photography days before Liam was born. Karin and I have always loved zoos, even more so now that we can bring Liam, but we have always gone to zoos whenever we could.

These are from a particularly meaningful zoo visit (a long story I don’t care to go into right now) and this guy wanted to be friends. I had a telephoto lens on the camera sure, but I didn’t really need it as this guy seemed to follow me around mugging for the camera. It was a pretty cool moment.

Night all.

I’ll talk to you later.

When I told Liam last night that his mom wouldn’t be coming down in the middle of the night but instead would be getting a full night’s sleep for Mother’s Day he apparently took that to mean that it was slumber party time! “Let’s stay awake and chat from about 4am to 6:30am Dad!” Of course all that hanging out with dad made for a very sleepy boy throughout the day with his Mom.

I spent more hours working in the yard this weekend than I have in months and it was a wonderful feeling. The plans that I made for plants three years ago when I planted them are really filling out this spring and last year’s addition of a small hopyard (with three different varieties) for my home brewing should bear fruit this year. It feels good to be this sore.

If you are a Mother, hope to be a Mother, are trying to become a mother, or are a mother who has suffered a loss I hope you had as nice a day as you could today. Mother’s Day/Father’s Day weren’t always happy days for Karin and I. We now make sure to use these days to stop and truly celebrate how lucky the three of us are to be a family.

Happy Mother’s Day.

I’m going to bed.

I’ll talk to you soon.

This isn’t new behavior. In fact it happens all the time, I even posted a fuzzy cell phone picture of the first time it ever happened here. It still cracks me up every single time. Especially when we see Liam’s heartrate drop by like 10bpm as Calvin settles in and starts purring, showing just how calming an effect they have on each other.

********

Based on the a slight tone of worry in more than one of the comments, emails, and facebook messages sent after a few recent posts I fear that an explaination may be in order.

We’re fine with our home nursing. Thank you for your concern but we are not struggling or breaking down, we’re just plodding along and putting one good day after another.

The nurse in question from my last post was never going to be Liam’s nurse. She was only here to be trained and tested before going on to her assigned case (making her behavior even more puzzling since we are under no obligation to allow anyone to use our son as a a teaching tool. We do it to help the agency and other families who need nurses.) We didn’t lose anything from her incompetence other than our enthusiasm to help any more new nurses in the near future. We are not heartbroken or let down. I thank you but we’re doing just fine.

A few weeks ago I posted a bit about our schedule when Liam has a night nurse as opposed to our schedule when he does not. Again It wasn’t a complaint about our lack of nursing it was merely me documenting here for anyone curious what our “normal” night looks like. Would it be nice to have a nurse come by every single night so that my wife and I could spend every night getting a nice long chunk of sleep together? Sure, so would a million dollars. That’d make life easier too. But we’re fine, thank you for asking.

As I type this, Karin has just retired to the bedroom for the night. Instead of coming downstairs at 4am to switch places with me down here, she will sleep undisturbed until whenever she decides to come downstairs tomorrow. Were it not for our crazy schedule I wouldn’t be able to give her that Mother’s Day gift.

I like that I can give her that Mother’s Day gift. Truth be told, I should do it more often. She deserves it.

Karin and I try as hard as we can to straddle a line with Liam’s nursing needs. Whether we like it or not it is necessary and so we use what we need but we try to do so by staffing only just enough hours to prevent the insurance company from reducing the number of hours they’ve approved, but not enough hours to make this home feel like a clinic. There aren’t any patients living here. Just a little boy, his parents and a couple of cats.

Using a minimum amount of nursing is important to us.

Parenting was a spectator sport for us for the first 9 months of Liam’s life. We endure 9 months of watching nurses take care of our baby. We had no choice in the matter then. We do have that choice at home.

So we choose to not have any nursing help on weekends. (unless we schedule a special nursing shift for a date night. It does occasionally happen.) We also choose to keep Tuesdays as a nursing free day. A part of the routine since the first day he ever came home it’s called ”Mommy & Liam Tuesday”. Karin relishes her one day a week alone with her boy, while I toil away at the old salt mine, and I am tremendously jealous of both of them for it. We choose to not have too many nights covered for us to sleep because it’s our responsibility as Liam’s parents to care for Liam not some nursing company. When Liam wakes in the middle of the night due to a nightmare or a seizure (but I repeat myself) we want to be ones who comfort him, not someone who get’s to call in sick from being there for him, or is only there to collect a paycheck*.  Show me a parent who doesn’t make the hard choices and sacrifices for the benefit of their child and I will show you a parent who is doing it wrong.

Thank you for your concern. We all appreciate it and hope you continue to share your comments, messages, and emails with us but we are doing just fine with our nursing schedule right now. We’ll survive.

We always do.

We’re fine. How are you?

I’ll talk to you later.

*P.S. Now that I’m thinking about it and so that I don’t have to write another explaination post, let me also say this. Like anything else, there are exceptions to every rule. The Olson family has also been fortunate enough to work with a few nurses who while they are/were still paid to be here and able to call in sick, have also shown that Liam’s care and well being were/are very important to them. It should come as no surprise that those are the same nurses that Liam has grown more than a little fond of as well. They know who they are and also how important they are and always will be to us.

P.P.S. Oh, and expect a post this week about a crazy story involving a billing snafu  with our nursing company. But knowthis — that one has nothing to do with our nursing help situation and more to do with the interagency bureaucracies, bullshit, and red tape that can effect the families of children with special needs.  In the end (I hope) the nursing company was the one that stepped up and did something about it so for now, yay them anyway.

So we gave in. The Liam Olson School of Nursing opened it’s doors for one more student.

She will be its last.

Here then is an open letter to our most recent attendee (I won’t exactly call her a graduate). I post this here not only in the hopes that any future home-care nurses out there may stumble across this and learn from her example, but mostly because it’s a more interesting way to tell this story than a straight chronological narrative.

**************

Dear new nurse,

I hope that you are able to give whatever family gets stuck with you the help that they need. I will not be allowing you to ever work in my home with my son ever again. You may have been able to show that you can perform the tasks involved to care for a child with a trach and vent (Once. With an experienced trainer standing behind you. Good for you.) but you’ve got a long way to go before you’ll instill confidence in any parent longing for the ability to not worry about their young child for enough time to take a shower or a nap, or a quick trip out to the store. If they need to assist you with the little things then you aren’t helping at all and isn’t that what you are there to do?

Anyway, this isn’t about your clinical performance since I’m sure that will be well covered by the report your preceptor will give to the agency. This is about the rest of your job.  Let’s call it your inter-personal skills assessment. I can only asses you on behavior that I have seen so this will be specific to my house. While I can’t speak for anyone else, based on my friendships and interactions with other families that have home nursing, I think that our approach is fairly normal and probably more easy-going than most so you can probably take much of what I write to any other case. (besides this is all just me trying to be too clever turning what happened with us into a blog post.  You’ll never even read this.)

Understand that when you work in this house caring for my wonderful son you are still a guest in my home. Karin and I are more than capable of taking care of Liam which makes you expendable. I refuse to be made uncomfortable by near strangers in my own home so please act in a manner that makes everyone in this working relationship comfortable, most of all Liam. We, for our part, will extend to you the same courtesy. I am not saying that we need to be best friends. I’m not saying we need to be friends at all, as long as Liam is being well cared for. If you are a quiet and private person — that’s fine. Loud and talkative? Heck, so am I. No one is asking you to change who you are, we just ask that you are courteous and respectful of the fact that while it may be your workplace, this is Liam’s home.

When you say that you are coming to work please do so. Calling in sick for the first TWO shifts (a week apart) that you were scheduled to be here for was not a helpful start. We do not feel comfortable enough bringing strangers along to appointments so we planned and adjusted our’s and Liam’s schedule around the days that you would be here. I know that things happen and if anyone understands missing work because of family emergencies it’s me but it is not the first impression you want to give. I can’t ever ask you to make my family’s needs your priority and I never will, but that start to me as a manager of dozens of employees in my day job is just plain professionalism and responsibility.

When you are given the privilege to work with Liam please show him the respect that he deserves as a person. You were here for three eight-hour shifts and you said more to my cats than you did to my son (not a joke). My adorable son, who you were supposed to be here to care for, training shift or not. He may not respond all the time. Hell, since you are a stranger he probably wasn’t ever going to respond to you in all three days but you didn’t exactly give him much to go on now did you? If you were working with a three-year old without developmental delays you would probably talk to them and let them know you were about to suction them or lift them right? Show Liam the same. He deserves it.

The unfortunate and unfair part of all this is that you never had a chance with me. I knew before you and I even met that if you were to make it through the three-day training with Liam’s daytime nurse that you would never be working here again. Kids like Liam and any other trach and vent kid you may get assigned to, they head in and out of the hospital all the time. During those times you may need another case you can fill in for here and there to keep your paycheck rolling in or maybe even make a little extra cash if another family needs some nursing hours. You lost the option to do that here with this amazing little boy within the first three minutes of meeting my wife.

Is that really fair? I’d say so…

You are lucky actually, that it was Karin’s morning to make the coffee since she was the first one downstairs. She is much more patient, and kind than I am, especially within minutes of waking up after only a few hours of sleep. Instead of pleasantries and maybe a minute or two of small talk with her, your boss for this 24 hours of training, you figured that questioning her parenting would make for a better first conversation.

“What time do you put him to bed for him to still be sleeping this late in the morning?” now you see, I’m exceptionally impressed with your ability to question our decisions while also implying that Karin and I are lazy, seeing as how if it’s too late in the morning for a child to be sleeping it’s probably to late in the morning for his parents to be rolling out of bed. I believe many people call that chutzpah. Or balls. Big brass ones.

As I mentioned Karin is a much nicer person than I am. So she explained my unorthodox work schedule and how if he didn’t stay up until eleven I would never even see Liam awake during the week. She didn’t explain about Liam’s med schedule which dictates when he is at his drowsiest. She did not mention that his night nurse schedule of only a few nights a week is jarring enough that trying to start a routine any earlier than eleven is pointless. Or that with his early afternoon school schedule he is more alert and productive at the time we need him to be if he sleeps until about 10am. She didn’t explain these things because she shouldn’t have had to explain herself at all.

“Oh, well I’m pretty sure that’s not very good to keep a kid up that late. I don’t think you should do that.”

That’s what you said to her. Think about that. That’s what you said to a complete stranger while in her home.

In her own home.

Did I mention that you were lucky that Karin came down first and alone? You see had I come down with her and heard that? You would have been told to leave my home immediately. How dare you question the parenting decisions that we make as a family while sitting in my own home. I don’t care if the initials after your name read RN, LPN, MD, PhD, NYPD, or POTUS you do not come into my wife’s home or anywhere else for that matter, and question her parenting decisions and ability as a mother ever. EVER. Not in your first conversation. Not in your 1,000th conversation. In the 2 years that our daytime nurse has worked for us he has never questioned our role as Liam’s parents and you would be better for it if you get that right as soon as possible. Other parents might not be as forgiving and compassionate as my wife is. Like I said. You got lucky.

Instead Karin just left. She came back upstairs and explained to me what happened. Then she told me that since she had already made a commitment to the agency and to your preceptor to allow your precepting here, she asked me to be nice. That’s the type of wonderful person that she is. And so I was.

Is it fair that I wrote you off before ever giving you a chance. Nah, guess what? Life’s not fair. Like I said, working with Liam is a privilege. One that you neither deserved or appreciated. Perhaps there is a family out there that will have a better chemistry and fit for your personality. This one isn’t it.

Home nursing is more than changing trach dressings and administering medicines. It’s about care. Care not only for the medical needs of the patient but to ease the burden on the parents stretched thin by stress and exhaustion. I don’t know about you but I get stressed when I have strangers I don’t like in my home. When you add to a family’s stress you are not helping. If you’re not helping then what are you doing there?  Just collecting a paycheck? Not on Liam’s dime you’re not.

Sincerely

Eric.

Before I was lucky enough to become Liam’s Dad, when I was just Eric, I fancied myself a photographer of sorts. A hobby to start but I worked pretty hard at it. I shot my first wedding, did a few different shoots for a local college’s radio station including some portraits, even did the group photos for a dance studio here in town. Then my priorities changed and that’s ok with me. I have been growing more serious about writing in the past few years and it isn’t as if I got rid of my photography equipment or anything. I’ll get back to it.

Last night while working on a tech issue here at chez Olson I needed to back some things up onto an external hard drive. The majority of the space was taken by photographs. thousands and thousands of photographs. It turned into quite a walk down memory lane.

I made a promise to myself that I was going to post here more often and keep the long breaks to a minimum. So I’m going to use all that past work to fill the gaps. When I need to post something quick I’ll just dip into my pre-Liam stuff.

For our first entry from the vault though let’s not stray too far into the past from my parenting days.  The photos in this post are all from a vacation to Chicago that Karin, my sister Sandra and I made to visit my little brother in August of 2008.

Liam was there too,  let’s just say that Karin packed him in her carry-on.

Liam’s night nurse just arrived. I’m sorry but getting a good night’s sleep wins out over thinking of anything more to say.  Hope you like the photos.

Talk to you soon.