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Miller-What?

Diagnosis.

A dense, heavy word that seemingly hangs in the air with the presence of a battleship on an ocean. A powerful word capable of changing lives. Filled with contradictions, it is both a label and an outcome, a cause and an effect, a reason and an excuse.

Every family that has one or is seeking one will have a different opinion about the word.

It’s both a blessing and a curse.

A phone conversation with an old friend from the past, some close family friends conquering their own child’s latest hospital stay, milestones marked by Liam that didn’t seem possible even weeks ago, I’ve had the word diagnosis bouncing around my head for weeks now. So when my twitter feed this weekend had not one (@tricky_customer) but two(@havley_pelhem16) links to well written blog posts about the word diagnosis I decided I might as well jump in join the fun myself and get at least a little of all that bouncing going on in my head written down.

Liam’s diagnosis saved his life. There’s no doubt in my mind. Not the diagnosis itself but rather the fact that we were able to find it so early on in his life. I’ve been told that in many cases involving any lissencephaly diagnosis (Of which Liam’s diagnosis — Miller Dieker Syndrome is one of many) is found later in a child’s life when developmental milestones are delayed or missed. A family that we know of had no idea that there was anything at all wrong with their child’s brain until the kid was 18 months old. It was only the fact that Liam was born weighing less than a thousand grams that triggered a routine MRI which led us to Liam’s diagnosis at the ripe old age of three weeks old.

From blood gases to vent settings, heart rates to weights neonatology is mostly a numbers game. Armed with Liam’s diagnosis as added information we were able to watch closely for complications that are commonly found with Miller Dieker and more importantly be ready to treat them. Had Liam been born only a few weeks later (which still would have been before Karin’s third trimester) that MRI would not have taken place and many of Liam’s symptoms may have been more puzzling. Puzzling enough that we would not have known what was happening in time to help fix it. We expected the GI issues, we expected the respiratory problems, and as much as we hoped to never see them, we expected the seizures.

We’ve spent every hospital stay since pleading with residents and interns to forget what they read in the books about Miller Dieker Syndrome the rare diagnosis that they are so excited to encounter and treat and take a good hard look at the boy in front of them. Liam. Look at his story. At his details. At what is going on with him right now. Liam is not his Miller Dieker Syndrome. He is not his diagnosis, and his diagnosis is not him. The diagnosis that helped at first has also been a hinderance since like any diagnosis the varying degrees of severity  and combination of symptoms make each case unique. Young doctors like to treat the textbook. Liam has spent his whole life proving that textbook wrong. He is NOT his diagnosis.

I can only imagine the stress, heartache and worry that I would have felt had i expected Liam to crawl, to roll over, to talk but it never happened. There’s a comfort in knowing that nothing is guaranteed. Liam has never missed or been late for a developmental milestone. Ever. Because knowing what we knew when he was only three weeks old allowed us to free ourselves from any expectations or schedules for him to meet. Like a suit of armor Liam’s diagnosis shielded us from disappointment. Anything and everything that Liam has done or will ever do is cause for celebration and joy. With no schedule to conform to there’s nothing to be late for, only events to be grateful for. A diagnosis gave us that.

But sometimes I wish it were different. And not that I wish Liam didn’t have a diagnosis, Liam is who Liam is and I love him regardless but I’d be lying if I didn’t say there wasn’t such a thing as diagnosis envy. It doesn’t keep me up nights or anything but I do think about it on days like today — Autism Awareness Day. As many questions, myths, and misconceptions that still may persist when it comes to words like down syndrome, autism, epilepsy, or cerebral palsy they are still fairly recognizable to most. Sometimes I think it would be nice to tell someone that Liam has Miller Deiker Syndrome without having to spend the next ten minutes explaining what that means. Sometimes I wonder what it would be like to have one of those popular diagnosis, but we’ll just have to start our own Miller Deiker Syndrome Day.

More often than not I won’t write a blog post about a topic until I’ve got that topic all figured out in my head. Although I read respect, and admire many blogs written by people who are honest and open enough to put their whole thought process out there and really “work things out” on the page,  that’s not my style. Tonight I feel like the more I write the more questions I come up with.

I still don’t have this one all figured out. I’ve got a lot more thinking to do here. Ask me again in a month about this one.  The answer then may be completely different.

Even though Liam’s diagnosis won’t ever change, I think my attitude towards it always will.

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.

 

Star of the Show

About ten hours from now a film crew will be arriving at our house to film us for a movie to be shown to new parents of children with trachs and vents, and possibly nurses and doctors, about the day-to-day life of a vent family at home. We’re honored that the VIP clinic (Ventilator Integration Program at Hasbro Children’s Hospital saw us as a representative enough family. We were originally approached about this filming almost a year ago so it’s nice that it is actually happening. of course knowing about it for so long was nice too since we had so much time to prepare and gather our thoughts. It should surprise no one then that I am sitting up tonight writing this because I’m nervous about the fact that I have no idea what I’m going to say.

I’m nervous for a few reason actually and I bet that number will increase by one more tomorrow when the camera is out and I attempt to “act natural” with a lens pointed in my direction. Then I’ll be really nervous.

But tonight I’m nervous about content. Let’s break it down reason by reason. . .

Reason 1. I don’t really think about it all that much. The movie is to show families at home with a child on a ventilator. Well we’ve got that but I don’t know what advice I could give because generally I don’t give the ventilator as much thought as you might think. It’s always just there huffing and puffing. Sure there is plenty of day-to-day, and week to week maintenance that Karin and I are more than capable of doing and sometimes we do but in a general sense we make our home nurses handle most of that because, well, because why the hell not? They are being paid to be here.

In terms of Liam’s respiratory health and my seeming lack of concern for his ventilator go we are far more leery of both Liam’s seizure activity/developmental/neurological status, and his G.I. Status than his ventilator settings. He’s rock steady on his equipment and even though we are working on a wean (half hour off the vent and supplemental oxygen the other day!!!) we are in no rush. Liam will show us if we need to give more thought to his mechanical little breathing buddy.

There are only two times that I consistently give the ventilator much thought. The first are during Liam’s first few breaths after I walk in the house after work. You can hear the vent from practically any spot in the house so from the kitchen, and before I even take my jacket off, I can hear by how rapidly he’s breathing whether or not the kid is asleep already after a long day of playing with mom or awake enough for some playtime with his Dad before bed. The second is every night when Karin and I move him into his bedroom when inevitably and no matter how many times we do it ( I suppose roughly 887 times give or take) something gets caught on something else along the way. Oxygen tube, electrical cords, the circuit attached to Liam, something’s gonna get caught on a table corner or a door knob or bed post and that’s when I swear and curse at that damn ventilator the best way I know how, but I really don’t think they’ll want to film that.

Reason 2: You’re doing it wrong. Before we could take Liam home from the hospital after his trach we spent more than a month training on things like suctioning, emergency trach changes, routine trach changes, vent settings and what they all mean, troubleshooting, a five-hour class on respiratory function and a special CPR class focused on trachs, you get the gist. I doubt it would have taken a month for Karin and I to learn but unfortunately Liam had other issues (The aforementioned G.I. As a matter of fact) that gave us more time to learn and grow comfortable with what we would need to do at home. That was more than two and a half years ago now and while Liam’s safety is never in any danger we have, like I’m sure every family in our situation has, developed our own shortcuts to some of those tasks. We’ve been told that they may want to film us doing some of those things. I doubt this film while showing how to successfully thrive at home with a vent really wants us to educate others on all of our bad habits. Gone are the days of saline bullets and wearing gloves. We’re so badass and confident the ambu bag usually stays wrapped in its oxygen tubing on top of the tank. Sure we (vent families) all end up relaxing around suction and if we need the bag for an emergency it’s not too far away but it is certainly a far cry from the textbook safety measures we were taught. Do they really want to film life at home?

Reason 3: I’m too lucky to qualify to give advice. The problem with asking me to give advice on how we do so well at home with Liam on a ventilator is that many of the things that make us so successful can’t be taught. We are able to do this because Karin is the best wife and mother for this family than anyone could ever ask for. Sorry, but if you don’t have a Karin running things at home then it’s going to  be a little harder for you than it is for me. That’s just the way it is. We are able to do this because Liam is the best little boy that this family could have asked for. I know we all want to think our own kids are “special” and are “the best kid in the whole world” but the difference there is that when I say it I’m right. Again, my apologies, Like I said, I’m lucky. We are able to do this because Karin and Liam are both so wonderful that they put up with my bullshit and keep me around for some reason. I could explain all of that but it would just end up on the cutting room floor, you know, jealousy. I can’t say I would blame them, we can’t all be lucky.

So there are my big three reasons. I don’t know what to say because I don’t know what I could say that would really help. This is all completely normal to us so which little parts are the ones I need to highlight? We make it through by making it through and until you get home and try it, you won’t know what works for you.

Like everything else in the world, it changes from family to family.

But don’t get me wrong, I may be nervous about tomorrow’s ( erm . . .later today’s) shoot but that doesn’t mean I’m not also excited. I can’t wait to see Liam hamming it up for the camera as he often does, and I’m sure that once we start filming I’ll relax and hopefully do ok. Lucky for me I’ve got Karin who will of course, save my butt and make us both look good with a few pearls of wisdom. She is after all, the star of this show.

I’ll talk to you soon. Hopefully, after breaking a leg.

Looking back three years on our own trip to Holland

It was a Sunday. The sixteenth day After Liam was born. Karin and I scrubbed into the nicu as we had every day and made our way down the unit towards B bay and our waiting baby boy. We were a few weeks into this new life and foolishly feeling pretty confident. To this point things were going remarkably well, all things considered. Spirits were definitely high. Making our way past the nurses station it was Dr. E who stopped us.

“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

My Left Foot

Before Liam was born I played vintage base ball. I was (and hope to again be) a member of the Providence Grays Vintage Base Ball Club. Although there are dozens of quirky differences in the rules that make the game of base ball in the 1890’s different from today’s game of baseball, the most obvious difference is that we don’t wear gloves. The baseball mitt’s common use was still about ten years away and vintage base ball teams are nothing if they’re not striving for historical accuracy.

Anyway, early on in my career I broke my hand. It happens. Taking some warm up fly balls in the outfield before a doubleheader I closed my hands a split second early and instead of cradling a long out into my chest the battered old practice ball smacked into the heel of my right hand. Knowing that until I got used to playing my hands were generally going to hurt I didn’t think it could be that serious and went ahead and played both games that day with a fracture in both my 4th and 5th metacarpal. It would be a few days of more and more swelling before the pain beat out my denial and I went to get it looked at by a doctor.

That was the first time I had ever broken a bone and sure it hurt quite a bit but at least it came with a story. Telling people I broke my hand playing a crazy version of baseball where finger and hand injuries were the norm was cool. Not only did I have something to brag about but I had a big brace on my hand which prompted everyone I came in contact with to ask what happened. This 33-year-old boy scout / band Geek / nerd finally had a jock story to tell and was asked about it by everyone. That was awesome.

Thursday night after a wonderfully relaxing thanksgiving dinner I broke my foot.

I tripped on the front steps of my parents house.

And that’s it! That’s all I’ve got. I turned back towards the house, I rolled my ankle, and broke a bone in my foot. I wasn’t even drinking. I had had more coffee than wine that day. It’s the most boring injury ever.

I guess I could tell everyone how I freaked out when it happened, shouting four letter words at family who were only trying to help as I limped down the road trying to walk it off.

“don’t tell me to RELAX!” I remember that one coming out. I don’t handle the initial shock of pain very well. I was a jerk.

Anyway.

I didn’t even know it was broken until Saturday morning. Again I underestimated the damage and figured that a sprain was about the worst of it so I wrapped it in a bandage the next morning and went to work anyway. Just about midway through the day I was sure that I had made a big mistake.

It wasn’t the pain so much as it was the grinding and clicking that my foot started doing as the day went on. I went home after work knowing that I better get it looked at but I still waited until Saturday morning because I assumed Friday night at the E.R. was going to be a madhouse. I’d just as soon try to get a decent night’s sleep.

So now I’m out of commission for a little while. I’ve got a walking boot and some crutches for balance but for support I’ve got the most patient and amazing wife in the world. Weekends around here are done without any nursing help and I try to help Karin with all of Liam’s stuff as much as I can since she does so much throughout the week while I’m at work. This weekend she’s pulling double duty, so not only is she doing everything needed for Liam’s care she’s also got the world’s worst patient on the recliner whining about the temperature of his ice pack. She deserves so much more than a medal.

She is of course taking wonderful care of both of us.

And Liam for his part is being a well-behaved little boy for his momma. (Even if he did pee through his onsie a mere seconds after she finished folding all of his laundry. It’s as if the universe will not allow her an empty hamper.)

I am a very, very lucky man.

I just wish I had a better story to go with it. Maybe I broke it skiing! Yeah! Or hockey. Oh hell I’d even take curling. Instead I get walking out of my parents house onto a step I’ve taken a billions of times before.

With all of my good luck, I guess I was due.

School Daze.

“Hi Liam, my name is [Sally].” Her name has been changed for privacy’s sake, but each and every one of them came over to introduce themselves to The Boy this morning.

It all started with the teacher of course. Miss Paula was finishing up with story time when our tour of what will probably be Liam’s school next september led us into the pre-school I classroom this morning. 9 adorable little kids of wildly varying educational needs that ran the gamut from “typical” to profoundly delayed, lined up after their routine hand sanitizer rub to meet my boy in between story time and a snack of apple slices and cheese. For Liam, this was the most peer age interaction of his life, and for his part enjoyed all of the attention.

That was the part that I loved so much, seeing that attention. Not the amount, Liam has always been the star of any room he enters, it was the quality of the attention from these kids. Here in this school, Liam will be the new kid but that’s about all that will make him special. His trach? His vent? Didn’t seem to phase these kids at all. Here in this special place all kids are welcome to join in the class.

Next month Liam will turn 3 years old and make the transition from Early Intervention to Special Education. All of his therapies will then become the responsibility of our local school department. Although he is required to be registered as a student Karin and I were unwilling to allow him to start school in January. Not during cold, and flu, and RSV season. So we will bring him into a local public school a couple of days a week for therapy until next september at least.

There are so many intricacies to any IEP that I am not going to get into the details of Liam’s right now other than to say that the public school Liam would be enrolled in for next year probably won’t be able to accommodate his medical needs making Liam’s safety an integral part in this educational plan. Because of this, the school department will most likely refer us to a private school that is more equipped for Liam’s medical needs and his special education needs. While we were warned that this may be the case, the writing is now on the wall that they are reluctant to take Liam on as a student. After seeing the reports written by our early intervention staff they even decided to bypass all initial testing required for IEP’s. They’re too scared to even set any goals for this first one. What a bunch of Wimps.

This morning we toured the school Liam will probably be referred to. I’ll mention it by name someday when Liam’s attendance there is official. It’s like the Disneyworld of schools for kids with special needs. Built in the last ten years it seems as if it were tailor made for Liam. Wide hallways between classrooms. standers, tumble forms, and other adaptive equipment lined up outside each door. Children of different abilities playing in groups together without notice of each others AFO’s, or feeding pumps, kid cart wheelchairs or hearing devices. Kids are able to be kids, not their diagnosis’s.

There are times when Karin and I need to find benefits to Liam’s challenges. Some times it’s the only way to make it through. I suppose i could be worrying about Liam’s IEP and how bad it must be that our school department sees him as too complex, but I know my kid. There ain’t any report or piece of paper in the world that will ever change that. I know what Liam is capable of and believe me it’s a whole lot more than anyone who has ever been paid to interact with him has ever given him credit for (and believe me, given his challenges, they give him credit for quite a bit) But that’s where the benefit lies. The control of the situation rest in our hands alone. When people don’t know what to expect from a child all that they can do is defer to the parents if they know what’s good for them.

On our way out of the school this morning I didn’t even have to say a word to the school department administrator who accompanied us on the tour.

“it’s really an amazing environment I know.” she said as she looked at me defeated. I could see why. After touring the public school that Liam should be attending, no one in their right mind would choose it over this palace. But she has pride in her own school and its program which I admire. Besides, when the school department makes the referral they’re the ones on the hook for tuition. I’m sure the powers that be and the money people would rather we stay in the public school. I’m also fairly certain that she’s not really supposed to encourage even touring this place.

“I know you have a great program for what you do, but it’s obvious that your school doesn’t have the equipment or staffing to accommodate Liam. You don’t even have a nurse available every day where this one has at least four on duty nurses all hours of the day. They are used to kids like Liam and he would fit in better here. In the public school he’d be the only kid in a wheelchair never mind the trach and vent. I am sorry but I don’t think we have to think too hard about where Liam should be sent.” I told her. Karin and. Hadn’t yet had time to discuss what we had seen but it was obvious to me that we were On the same page.

” I know.” she said. There was really nothing she could argue about that and we both knew it.

It’s still about ten months away but I’ll admit my head is still swimming in all of this education stuff. I guarantee This will not be the last you hear about the process – but at least for tonight I can say that we have found the place where Liam needs to be. My only job now is ensuring that it’s where he ends up.

Master of my domain.

Just a quick programming note . . .

I finally got around to getting the right domain name and you can now find us at plain old, simple PressureSupport.com.

Sometime last summer I had just started getting serious about the blog here I looked into getting the domain to make the link simpler but my initial searches said that the domain was taken by some service that makes their money buying these domains to then sell them off. Since the name itself is taken from medical terminology it was catalogued as such and I was welcome to bid for its purchase. Well that’s just not gonna happen folks.

So I waited and thought about other options but I’ve grown up with the name pressure support so decided not to change anything. I kept it with the .wordpress address, and it’s worked out for me so far, but a few days ago my wordpress service let me know that the name was now available through their own domain service and so I jumped at the chance. 17 bucks a year. no bidding, no technical hosting crap to figure out, how could I refuse?

How is all of this going to effect you? Well that’s the best part — It’s not. You already get here just fine and there’s no need to change any bookmarks or links but also, think of all the time you’re going to save! You know how you’re always being hounded by people saying “hey what’s that awesome blog you are always going on and on about? The one all about that awesome kid and his family?”

Well now instead of having to go through with all of this “pressure support dot wordpress dot com.” you can quickly mention “pressure support dot com.” that’s like three extra syllables taken out. Easily like half a second. Compound that by how many times a day?

Anyway,

Pressuresupport.com Boom! No muss, no fuss, and now instead of going to an informative medical resource about the need for, and application of, pressure support ventilation; they can come here – and read me, blathering on about the “pressure” of parenting an awesome special needs child and the “support” that the three of us give to each other to make it through so well. Ugh.

Maybe the name should be put to more responsible use.

Whatever.

Pressuresupport.com. Feel free to tell your friends.

Fenway

When you do something that you have wanted to do since you were 9 years old how can you possibly put it into words? Especially when it ended up surpassing the expectations that had built up over two decades?

You can’t. Or better said, I can’t.

But I’ll try.

We could start this story in 1986 with a 9 year old me getting his first package of baseball cards. I was into the cards before I was into the game. Or we could begin a few months later, with me on the stairs to our family room, way past my bedtime, crying harder than I ever had before as replays of Bill Buckner booting a routine grounder ran over and over on the TV. I suppose that’s where it really started. As much as that game pained my 9 year old head and heart I was ready to root for the Red Sox come springtime.

When Karin and I lived in New Jersey we would buy partial season packages to Yankee stadium and would see 12 to 15 games a year. Now, I am and always will be, the most die hard Red Sox fan but, I do like to think that I am a fan of the game first and foremost. And of course I do now and always will hate the Yankees but damn if Yankee stadium wasn’t (I have yet to see the new one) a great place to see a ball game. (not like Shea. Never liked that place.) But mystique or no, I never got goosebumps walking in there like I have each every time I have walked into Fenway park. No joke, every single time.

I love how it’s so tucked into the city you can be only a block away and still miss it and get lost. I love that it’s so old it’s become uncomfortable to many. I love the fact that many seats face centerfield rather than the infield so you end up slightly turning your head for a few hours to watch the plate. I love the different shades of green – from the grass to the wall to the seats with details of red leading up to the blue sky of a summer day. I love that it’s the same place I saw on tv as a 9 year old with my baseball mitt on, wondering what it must feel like to walk on that grass.

I don’t have to wonder any more.

Last year in the months leading up to The Walk for Hasbro, a fundraiser for Hasbro Children’s hospital I wrote a series of posts called PICU Pressure about our long stay in the PICU there. Well someone at Hasbro found the blog and asked us to be on TV to be interviewed before the walk so of course we jumped at the chance. Here’s the link. (The Ghost Hunters were also on that day so we got to hang out with them in the green room, along with a gubernatorial candidate who took a long look at Liam walked a little closer and then loudly asked “So… Uh.. WHAT’S HE GOT?” I actually appreciated his candor and directness as opposed to the usual strange looks and fear of asking the wrong thing but anyway I still haven’t even told you what happened that was so cool geeze.)

A few months later the same contact at Hasbro asked us to take part in a radiothon which you can read more about here. That was awesome too. Our contacts at the hospital were always so appreciative but as Karin and I repeatedly tried to explain it truly was the least we could do to help out the place that had done so much for our little boy. The thanks were ours to give not theirs. Which is why it was such a shock to receive an email from the good folks we had worked with explaining that local boy done good and Boston Red Sox relief pitcher Dan Wheeler had donated a bunch of tickets to the hospital along with the opportunity to arrive at the game early to go out onto the Fenway field before the game to meet him. They, in turn, wanted us to use them to take Liam to his first baseball game.

Uhm, what?

Is this real life?

Three weeks after Liam was born and we were receiving the news of his diagnosis and processing the future of our family and how it would be different from the future we had predicted the natural impulse to think about things that I wouldn’t get to do with my son would creep in from time to time. I’ll never get to teach him to drive, Or to ride a bike, or to hit a curveball and yes from time to time even in the last few years the idea that I’d be taking Liam and his ventilator into a crowd of 35,000 germ covered baseball fans seemed damn close to impossible.

But when is another chance like this going to come up?

So last Sunday we packed up the boy and invited some family and shipped up to Boston for Liam’s first Red Sox Game.

I was taking my boy to see the Sox.

We arrived on time (barely) and were whisked through the gate and past everyone in line until we were inside the park itself when our guide explained that we would be seperated for a second so that the rest of the group (some family that we were lucky enough to bring with us)  could be brought down the stairs to the field. We waited alone in a hallway as I giggled in anticipation of the next few mintues when a large Boston Police Officer moseyed over to us. He didn’t even acknowlegde Karin and I but instead squatted down next to Liam’s wheelchair and placed a plastic BPD badge on his chest and said to him “Buddy, you’re going to be my deputy of Fenway today.”  Then he stood up and walked away. It was a very cute moment in every sense of the word cute.

Our guide came bouncing around the corner and in a flash we were pushing Liam down a ramp and onto the field at Fenway Park. I know I waited a week to even write this post but let’s just say that again and let it sink in shall we?

We were pushing Liam down a ramp and onto the field at Fenway Park.

Ok, now that we’ve all caught our breath.

Players were milling about all over as they got ready for the game and talked with other groups and took photos. There wasn’t a whole lot of autograph signing going on at first and that was fine with me. We truly were just happy to be there. We bumped over some TV cables and were greeted by pitcher Trevor Miller who quickly asked a question that only ‘one of us’ would understand. Karin instantly caught it. “Whoa, sounds like you know what you’re talking about there!” she said to him laughing. Turns out his daughter has a trach. He is one of us. It was awesome. He laughed with us and wished Liam fun at his first baseball game before jogging off to begin his own warm-up.

The family who came with us were behind a stantion that corraled them down the edge of the field on the first base side as we were told to hang out right in front of the dugout.

Why yes that is Dustin Pedroia's head behind that bench.

I couldn’t stop smiling the entire time.

All of the sudden Relief Pitcher Alfredo Acevez came bounding up the clubhouse stairs and out of the dugout. He crouched down next to Liam without hesitation, kissed him on the check before even I knew what was going on. He laughed and rubbed Liam’s belly before saying “welcome to the game!” and laughed a bit more before turning around and signing for the fans who had begun to trickle into the park.

Our guide kept telling us that Dan Wheeler was in the physical therapy room getting treatment and should be out soon as I told her that our expectations had already been blown away and that there was no need for anyone to rush on our account. It was getting closer to gametime and she seemed to be getting nervous about it. No offense to Dan we were about to meet someone much cooler.

That’s when HE came out. We were standing in front of HIS bench. In front of HIS seat. He was sitting there when Kevin Millar worked a lead-off walk against Mariano Rivera. He was sitting there a few pitches later when Dave Roberts stole second even though everybody knew he was going. He was there when Bill Mueller drove Roberts home.

Terry Francona walked out to his bench and got ready for the game.

He was all focus. He placed his stack of scouting reports on the seat and he found a few rolls of athletic tape and started taping two lineup cards to the wall as I stood only a few feet away getting Liam to look over and trying not to wet myself. “That is Mr. Terry Francona Liam!! Liam can you believe it! That’s Mr. Francona!” I had kept my cool the whole time until then but how could I not be excited.

Our guide stepped up as we were watching him and pulled me to the side. “Dan can’t make it up, the doctors are still working on him so he’s not gonna make it to meet you..” She seemed sad to be the bearer of bad news but I assured her that just being able to see the game was enough for us and to tell Dan that we all said thank-you.

She seemed relieved and backed off a bit while I went back to staring at the laser-focus of the first manager to win two world series championships in the 21st century. He seemed oblivious to the crowd around him. He made sure all his stuff was exactly where he wanted it before shocking us all by hopping up two of the three stairs and playfully rubbing Liam’s belly (!!!!!!!!!!!! 8-0 in World Series Games rubbing Liam’s belly!!) said “Hey Buddy” signed a ball for him and the baseballs that my cousins had brought and ran back into the clubhouse with a nod.

I don’t have pictures of that moment which is ok by me.  I’ll never forget it.

I hadn’t even processed what had happened when we were being brought off the field and escorted to our seats for the game. The handicapped seating for Liam’s chair was good, had a great view of the field even if it was back a ways. It was high enough that even if everyone in front of us stood we could still see the field. The usher for our section was attentive and helpful and we made fast friends with the other families in our section who also had some special needs.

The Sox lost but it didn’t much matter. I was sitting at a ball game with my son beside me.

Meeting Tito, getting on the field, being startled by Aceves? All great and gravy but really, what’s better than sitting at a ball game with your boy?

Days later Karin would still find me staring off in the distance with a goofy grin on my face. She didn’t even have to ask after a while. I’d snap out of it and give her a look before saying ” Terry Francona rubbed my kid’s belly!”.

And to think that it all started with me writing a few posts on this blog.

Well, that or me crying like a baby over what my parents tried to help me by saying it was “just a game”

Just a game . . .yeah, right.