parenting

Easing back into it.

IMG_0528

Sure, I could make excuses. I could tell you how tired we are. I could tell you how the day job has been busier than normal for the past few months. I could tell you how there really hasn’t been that much to blog about as we have been settled so deeply into our routine. But that wouldn’t exactly be accurate. It wouldn’t be the truth since, to be honest, so very much has happened. Let’s see,

  • School started and Liam has taken very well to being a full-time part of the classroom. He has a special relationship with his classmates and his full-time teacher is nothing short of wonderful.
  • Liam has started to reliably make choices using eye gaze including such things as picking out his clothes every morning.
  • Karin and I got to attend our first Open House at school, our own rite of passage we never thought we’d see. We had our latest and greatest IEP and everything that entails.
  • We started the ongoing process of breaking in a new night nurse in the hopes that someday when she works we’ll actually get to sleep for a full 8 hours.
  • I made two different beers using only the hops that I grew in my backyard that I told you all so much about.
  • And maybe most importantly, The Boston Red Sox won the World Series.

And that’s just the big stuff. That doesn’t even count all the little moments. All the little happenings that were probably worthy of their own blog posts. Making his pediatrician cry showing him a video of Liam in his walker. Being able to ask my parents to babysit for the first time in Liam’s life. Starting to plan for Liam’s FIFTH (!!!!!!!!!) birthday party (January 11th 2014. More details to come. Mark your calendars.  You are all welcome.)

Anyway, I obviously cannot be trusted to assure you that I will post more reliably now but at the very least this post will serve to break the seal. With the pressure of the first post back out-of-the-way I can get back to little updates more frequently.

Thank you all for hanging in there or coming back. I appreciate it. While not blogging I was also not reading or commenting on other blogs. I’ll work on that too.

In the meantime, things here are going well. I hope that all of you can say the same for where you are.

IMG_0697

Looff

When my father rode it as a boy it was the jewel of Crescent Park. The amusement park made Riverside a summertime destination until the seventies. The Crescent Park Looff Carousel. It was loud and it was fast and at the time was already 70 years old. It was Riverside. It was home.

20130814-002633.jpg

When I rode it as a boy it was the only remaining structure from the long out of business amusement park. In my early-teenage years the trashed abandoned bumper cars out behind the ride would be cleaned for the construction of condos. It was loud and it was fast and at over 90 years old didn’t have the funding to stay open every year but when it was open we went and rode. It was Riverside. It was home.

20130814-002704.jpg

When Liam rode it as a boy it was two weeks ago. The staff and the fire marshall monitoring the event taking place were welcoming and helpful in allowing us time to get Liam and his ventilator on board. It was loud and it was fast, so much so that I don’t think Liam enjoyed the ride at all but that’s ok. He never really had a choice in the matter. At 118 years old and a local historical landmark, Liam was going to ride that thing at least once no matter what. It was Riverside. . . .

20130814-002722.jpg

… and he’s a Riverside boy now.

It’s his home.

Necessary Evils in Three Parts.

It sucks. It sucks in every way that you would think that it sucks and in about a thousand ways you couldn’t even imagine until you’ve been there. It sucks in ways that even those closest to us won’t fully understand and those farthest away can’t even comprehend. It sucks to need home care nursing.

I’m not going to try to find a better word for it. It just plain sucks.

It sucks to feel like your ability as a parent is being called into question when you’re told that you will need home care nursing before you have even gotten your child home. To feel as if you can’t take care of your own child as a family. That someone needs to be paid to come in and help. It sucks even worse when you realize that it’s true. That although we are perfectly capable of taking care of Liam, and he is much safer in our care than anyone else’s, that the 24/7 grind of seizures, and ventilators, and feeding pumps, and medicines, ultimately will wear us down to an exhausted mess.

It sucks to have a stranger in your house. I like my privacy. I like relaxing and being comfortable in my own home. If I have to behave in any guarded way in my own house I get cranky. It sucks when the only nights you get to share a bed with your wife are the same nights that you have someone who is essentially a stranger sitting awake one floor below. It sucks to have to whisper. It sucks to worry that if you raise your voice in an argument the rest of the nursing company might hear about it. It sucks to have a small cozy home with only one bathroom that shares a wall with Liam’s room after burrito night. If a man can’t be comfortable on his throne where can he?

It sucks to worry anyway. To spend shift after shift watching a new nurse, hovering in the doorway, or laying awake overnight listening for ventilator alarms negating any relaxation they are there to provide. To meet 5 nurses who seem barely competent for every one who instills any confidence. To then lose the good ones to office politics, or geography, or a cat allergy and then wait months for the agency to hire someone with the training that Liam requires. To then have the insurance company cut back your hours for lack of use, not really caring that it was because the agency didn’t have anyone hired and not because we didn’t want them.

It sucks to have to run my own family’s plans through a nursing company scheduler who has no understanding the impact her job performance has on what we as a family can or cannot do. To be given attitude and lectures for changes or demands. To be scolded for discussing scheduling changes with the nurse that it would affect because it disrupted some kind of office protocol.

It sucks to have to compromise. To have to take a chance on a nurse with little experience in a trade for respite and a bit of sleep. To have to weigh a bargain between our own well-being with Liam’s safety. To have to settle for whoever decides to answer the want ad in the paper when most of the nurses go on to hospitals, doctor’s offices and other institutions.

It sucks to find that perfect nurse. The nurse that just fits. The nurse that while having the skills necessary to care for Liam also has the personality to understand our plight, our privacy and our need for respite, not more stress. It sucks to find that nurse and lose them to another job or their own family obligations. It sucks to have Liam’s school schedule be impacted  by that perfect nurse’s schedule. To worry every time that Liam is admitted to the hospital for a long-term stay that they will be forever lost to another case, because it is just a job to them. They can’t be waiting 6 weeks for Liam to come home to work.

It sucks to have this nagging doubt because of their looks or questions when talking to acquaintances and co-workers about nursing that they think it must be so easy. That having “free” “babysitters” every day means Karin must have so much time for herself. It sucks to have it come up in conversation at all. People who’ve never seen it don’t understand. It sucks to know that some of the nurses themselves don’t even understand. I know it’s your workplace, but you are in my home!

*****

For four years we never had nursing on a Tuesdays.  Frustrated by watching nurses care for Liam in the hospital the first 9 months of his life, we decided soon after taking him home that Tuesday’s would always be Mommy and Liam days. But we also wanted Liam to eventually attend school five days a week and so Tuesday nursing was needed.

We had nursing on Tuesdays for less than a month about two months ago. I’m not so sure we will again anytime soon.

Just when we thought that having nursing couldn’t suck any more a new level of sucking rained down upon us when Karin stepped out of the shower to hear her name being called and Liam’s ventilator alarm beeping loudly along. Charging into his bedroom Karin found Liam’s nurse, her third week on the job with us, frozen in panic with tears of fear in her eyes. Liam lay in his crib blue and unresponsive. Within seconds Karin had shoved the nurse out-of-the-way, assessed the situation, put Liam’s trach back into place, hooked up the ambu bag to direct oxygen and revived her son. In front of the licenced professional being paid to allow my wife time to do things like take a shower. Every day since I think about how lucky we are that Karin was only in the shower and not out grocery shopping or picking up Liam’s prescriptions.

The nurse still in a panic and unable to think of what to do next, Karin sternly told her to call 911 (so that the paramedics could come out to asses if they thought there was any lasting effects) and then to get the fuck out of our house and never come back since you almost killed my kid. That action the nurse was able to do. So quickly in fact that she left behind her glasses, and was to afraid to ever ask for them. (we sent them to the agency for her anyway).

I’m not mad that Liam’s trach popped out while she was changing Liam’s trach ties. It happens. It’s happened to anyone caring for a kid with a trach. I’m mad that this “nurse” didn’t know what the procedure was for its (inevitable) occurrence. I’m mad that the nursing agency’s training program saw her as able to care for a child with medical needs as complex as Liam’s. I’m mad that my wife has gone into sweats and relived the moment that she saw a blue and lifeless boy in Liam’s crib every time she hears his vent alarm go off and she isn’t in the room. I’m mad at how hard it is going to be to try to trust a new nurse ever again. I’m mad that even though I called their office  from my own to tell them why that nurse would never be going anywhere near my child again, no one from the agency ever called to check on Liam. To check on Karin. To tell her that they were sorry for the pain, and stress that this has caused. I’m mad that there is a file in that office somewhere that has notes on whatever story that nurse gave when she went back to the office but doesn’t have a single word of what happened from my wife’s point of view.

I’m mad.

I’m mad at the amount of guilt that both Karin and I have beat ourselves up with. That maybe we should have been a bigger part of her training before realizing that if you say you can care for a trach/vent patient you should already know how to check whether or not a trach is even in place. I’m mad that my wife now feels guilty at the thought of leaving Liam with anyone else even more than she did when he was a baby. I’m mad that I didn’t notice something in that nurse’s first three shifts to red flag me to fire her  before anything like this could ever happen.

And I didn’t think I could get any angrier.

*****

Then a news story came up last week. If you don’t want to click-through to the link I’ll give you the highlights.

According to police, a Cranston couple went out for dinner Monday night and left their nine-year-old disabled son with a caretaker. When watching the child through the home video monitor on their cell phone, the couple discovered the caretaker reportedly abusing the boy.

….

According to two Cranston officers who viewed the footage, the video showed Faneuf grabbing, shaking, and twisting the child’s left arm while he was lying in bed. It also shows her grab the child’s head and the side of his body, sit him up, then slam him down on his back, police said. The video also showed her hastily wiping the boy’s face.

When the couple examined their son they found bruises on his forehead and arm as well as a blood spot on his eye, according to police.

It’s a story that made me sick to stomach. Sick to my stomach before I saw the mug shot and read the name and recognized the nurse as one who had cared for Liam two night’s a week for three or four months last year.

Liam is fine. He is doing well with his therapies. He is more aware and alert as he has ever been. He is growing like a weed and medically as stable as he has ever been before. Let’s just all keep that in mind because whenever I think about this situation, I keep having to remind myself.

We never saw anything suspicious or any signs of abuse. She has not cared for Liam in almost a year.

Liam.

Is.

Fine.

But what did we miss during those four months? Upstairs, selfishly trying to get a full night of rest with my wife? Did anything like this happen to Liam but we never knew? Liam can’t tell us where it hurts in the morning. He can’t tell us if it hurts at all. Were there signs that we had missed?

(Oddly enough, at the time Karin and I had decided while she was on a vacation week to fire her from Liam’s case because we didn’t think she was making any attempt at connecting with Liam at all. As if he was just the inanimate object she had to watch for eight hours. It was enough that we didn’t mind sacrificing the weeks of sleep we would do without waiting for her replacement. The agency let us know that she had put in her notice with our case anyway. That she was moving on to a case closer to her home. Well that worked out, I guess.)

And  that’s were we are. I don’t know what to do next.I don’t know how to process what could have happened because I don’t know that anything did. I’m angry at the thought that it might have. I’m angry that it may have been going on and we weren’t there to protect Liam, since he is unable to protect himself. I’m angry that monsters who would be willing to do anything like this to any child let alone a disabled child unable to protect themselves or run, or scream, even exist and that someone who may be capable of it was in my home.

We are down to only one nurse now. Luckily, this one is that perfect fit. He connects with Liam, He connects with us (just as important) and he is wonderful with Liam at school, constantly encouraging and ensuring play and interaction with all of the other students, but he can only work so much. We have no more night nursing and, well, there’s that Tuesday shift. We will have to take on a new nurse at some point whether it’s for a few nights a week so that Karin and I can sleep again or so that Liam can go to school all week which is still the ultimate goal.

I just don’t know if I can do it. I don’t know if I can put on a fake smile and meet someone new. To trust another nurse. To trust the agency when they say, “oh, she’s/he’s a great nurse, lots of experience.” To explain why it does matter if Liam’s circuit lay upside down (moisture collects in the sensor tubes) or why his cuff needs to be deflated when he fits his Passy-muir valve (closes off the air around his trach with a one way valve and suffocates him) and why we don’t want diastat given at exactly five minutes of seizure length no matter what your nurse’s notes and the orders in the chart read (many of Liam’s seizures will resolve on their own when allowed. If it’s getting stronger at 5 minutes then of course but there are shades of severity that can be hard to explain).

I don’t have the energy for it. I don’t have the trust for it. I don’t have the words or the inspiration to turn it all into a happy ending or a moral for patience and perseverance. Instead, I have a whole lot of anger and resentment towards it all and I was hoping that writing about here might help with that.

I guess well see if it does.

Like I said, it really sucks to need home nursing.

The Kings and Queens of Rock and Roll

I used to go to rock concerts like it was my job. Tom Petty, Jerry Garcia, Ben Folds a bunch of times (with “…Five” and without), Dave Mathews Band a whole bunch of times, Bob Dylan, Clapton, Festivals like Lalapalooza and the Horde Tour every year, Phish almost 20 times just to name a few. Big venues, little clubs and everything in-between. The last concert I went to was less than a week before Liam was born. Neil Young (Wilco opened) with my Dad. Neil Young has been and continues to be a musical hero of mine and finally getting a chance to see him live, and with my Dad who introduced me to his music, was the best concert experience I had ever had. It was a wonderful show and I will always remember that night but let’s be honest it didn’t exactly change the way I saw the world. I’ve been a musician since I was in the 7th grade and while I have always loved watching live music, looking back on it now none of those concerts changed my life other than a little tenitis and a lot less money in my wallet.

Today Liam went to his first rock concert. The band didn’t play any covers and they didn’t play for all that long. They played straight up original rock and roll. Songs written by each of the band members. Songs written not only by each band member but also for the other band members. They don’t write songs for the billboard charts or for radio play. They don’t play to make money or even to impress. They write for each other and because it makes them happy. More bands could take a page from what I saw at an afternoon concert in the park today.

They are The Kings and Queens of Rock & Roll.

20130801-000415.jpg

Autism, down syndrome, early life meningitis or any other disability – none of that matters when those drum sticks start clicking and they start rocking. It is the work of the good people at RHD-RI. Guys and gals like Pat there in the fedora and with the guitar who is the only person on that stage without some form of medical or developmental obstacle. I was touched not only by the amazing talent, creativity, and musicianship on the stage but also the outpouring of support from the larger than I expected crowd. Parents, nurses, pass workers, as well as so many more adults with disabilities showing off their own talents in dancing and singing and making friends.

Liam was a big hit with this crowd. Easily the youngest in attendance there were instant friendships and connections made both for him and for Karin and I. We were able to spend a great day with a family we already know who has had a huge influence in how we see our own future. Their own son, a part of the band (on the left at ground level), finally getting a chance to meet Liam face to face.

I’m having a hard time putting into words how much impact today had on me. Talking with people we had just met about all that we have gone through in the past, enjoying a wonderful present, and envisioning and experiencing the absolute joy we are still in for in our future. I was moved in ways that seeing a millionaire rock star on a stage could never come close to comparing to.

Rock On.

Lock it Down Day 2013

I asked for the day off months ago.  I decided last year when this crazy calendar coincidence was brought to my attention that I wouldn’t be going to work on that date anytime soon. July 26th. A Friday this year. Inventory day. I don’t take Friday’s off, especially when I have to work on the Saturday and Sunday anyway. It wasn’t as if I was even giving myself a three-day weekend. I don’t work on July 26th anymore. I stay home and lock it down.

Lock it down day.

July 26th 2011. An Ambulance ride. A prep for Emergency Surgery. A perforated Appendix. An intestinal mal-rotation. It was the first day of 42 a day hospital stay that would include A blood stream infection, sceptic shock, post surgical ileus, multiple complications of his seizure med routine due to access issues resulting in huge seizures.

July 26th 2012. To tell you the truth I don’t remember how we got him to the hospital this time. I do remember that it was only 14 hours after we had been discharged from Liam’s week-long elective hospital stay to start the ketogenic diet. A back and forth that included a 104 degree fever. Gall stones (a side effect of Long time TPN nutrition and inflamed by the high fat ketogenic diet), a line infection. It was the first non-elective day of a month-long hospital stay that would include another blood stream infection. another case of sceptic shock, a post traumatic ileus, multiple complications of Liam’s seizure med routine due to access issues resulting in huge seizures.

July 26th 2013. Nothing. No ambulance rides. No car rides. I don’t think I even put on shoes. Liam slept in and then we watched movies on the couch. We didn’t do laundry, we didn’t do housework, we didn’t do anything other than watch tv, and read, and relax, and that was just fine with us, it was completely by design. Cocooned from the world in our little bubble we hunkered down and beat back the calendar. July 26th would be ours again! Our own family holiday.

Lock it Down Day.

Feel free to mark your own calendars next year and join in the fun. At its heart it is a pretty easy holiday to observe. All you have to do is NOT take your child to the hospital to begin a long term intensive care stay.

It’s already become my favorite holiday.

Crib Notes

I get to go to bed earlier than 4:15am now! No longer tossing and turning on the couch grumbling about the pain in my neck it creates while counting the ventilator breaths I can hear on the baby monitor. Karin can lie back down in bed from 4am to 8am instead of sitting up by Liam’s crib while he has his daily awake time from 5am to 6:30am.

It’s a comfortable bed. A nice wide full size bed. Probably the nicest bed that I’ve ever even purchased. The only thing that would make it nicer would be if it were mine.

This one is a big boy’s bed.

*****

Last week on a day that also included Liam’s first ever trip to see a movie in the theater, (Despicable Me 2, and yes the whole family enjoyed the movie and the experience) I worked past the emotions of how on earth Liam could possibly be too old for a crib and got to work turning this

20130720-001343.jpg

into this.

20130723-004026.jpg

I’m betting that the parenting books tell you it’s a bad idea to sleep in the same bed as your 4 year old but we don’t go in for parenting manuals around here. Instead we just do what works for us. What works for him.

The phrase 24 hour a day care is not hyperbole and for the past 4 years Karin and I have split the night in two. Couch time and bed time. Neither of us in either space together and unfortunately that isn’t likely to change anytime soon. But our level of rest will. The light from the ipad or kindle is hardly brighter than the displays on his feeding pump, vent or oximeter. I can read and I can sleep and I can get a little more rest all the while being less than an arm’s length away from the boy. From the circuit. From the suction rig.

20130720-001140.jpg

A big boy bed. Just as exciting as the day that Liam left the confines of his NICU isolette and into an open air crib but I’m not sure which of us has been more excited about it. Liam, who now has the room he needs to stretch out as much as he wants, (and even has the audacity to learn how to roll over by himself, the little scamp.) or me and Karin who will get bits of sleep that we so desperately need while still being close enough to care for the big boy stretching next us.

Pretty sure it’s us, but even if it’s not today, it will be once Liam gets to hear me snore.

The cure for all that ails me.

20130615-014146.jpg

In the grand scheme of things I guess, it’s just a lot of small stuff. Stuff that has absolutely nothing to do with special needs or complex medical issues. The stuff that we all have to deal with.

Life.

So I’m exhausted, and I’m stressed. The day job sucks and isn’t letting me have the time to do my own things. Things like writing for the blog, and tending to my gardens.

Don’t get me wrong there’s phenomenal things happening too. Things that lead me to believe there really is a future for me in something other than food service management, but which lead to the fear and stress over change. Fear of failure, and on some level a more distracting fear of success.

Like I said, . . . small stuff.

Because the big stuff is up there in that picture. In the space between our eyes. That space where all that stress and exhaustion just fade away.

I’ve been stuck at work until after Liam has fallen asleep for the past two weeks. It’s been a long two weeks.

Tonight I got home early enough to soak it all in for a while.

It was just what I needed and at a time when I really, really needed it.

Hope you had as pleasant an evening as I did.

New Routine

.

20130503-192920.jpg

We go for walks now. All three of us. Everyday.

For the past 7 years I have had to work until 8pm at the earliest. There wasn’t any way for me to go out for a walk around the neighborhood in the sunshine. Then in November I got a promotion and was able to get home by 6 almost every night. A welcome change but being November it would still be another 5 months before I would get to enjoy the feeling of leaving work able to enjoy even a little bit of sun.

I used to come home from work with barely enough time to eat dinner before Liam would fall asleep. Now I come home with hours and hours to play with before bed time. We’ve got a new routine now.

We go for walks.

All three of us.

Everyday.

Our holiday in pictures.

1-IMG_20121223_165752

And the hustle and bustle of the holidays end and we fall into old routines or embrace new beginnings. I haven’t made any resolutions for the coming year but I have set some goals. I’ll keep the details to myself but suffice it to say that if I follow through on some of them the results will be seen here.

And so as I so often do when I return from a long hiatus I will ease the pressure to write anything worth reading I will dazzle you with photos of my boy and our adventures.

And adventures we did have.

1-2012-12-24_18-06-15_823

On Christmas Eve we packed up the van and headed down the storied Connecticut Turnpike for a holiday celebration that’s been a long time in coming. Karin was able to spend Christmas with her own parents for the first time in 5 years. Liam was able to see his Grammy and Opa on Christmas for the first time in his life. The Olson’s were heading to Jersey!

The ride was uneventful. Just as we had hoped it would be, and as we crested a hill and passed the sign marking our entrance to Wanaque New Jersey, our destination, the first flakes of our white Christmas hit our windshield. Like magic.

1-2012-12-25_18-59-13_332

Christmas day was filled with visits and meetings with relatives not seen in years. Stuffed with good food, good drink, and great conversation my in-laws brand new house felt like home even though it was our first ever visit there.

1-2012-12-25_15-12-31_73

Liam was incredible. Well behaved and happy he stayed awake and engaged for almost all of the festivities. We asked so much of him between the long car rides and the overstimulation of a new environment and meeting so many new people I was amazed at how well he responded.

1-2012-12-25_18-59-41_868

He even got to sleep in a big boy bed. I’m talking really big boy, like king sized. A kid could get lost in a bed like that.

1-2012-12-25_09-06-43_958

The return trip would be the afternoon of the 26th, Liam’s fourth birthday. He had breakfast with his Grammy and Opa in the morning and had dinner and birthday cake with his Meme and Grampa, he’s a pretty lucky 4-year-old. Over those 48 hours he also saw his 4 Great Grandparents as well!

1-2012-12-25_12-32-41_507

Before Karin and I even knew what was happening an impromptu birthday party broke out as aunts and uncles and cousins from all over began stopping by to wish Liam a happy birthday. Since we had been away for a few days and had returned home from NJ less than an hour before all we could offer our gracious guests was tap water and a small cake my mother baked for Liam but no one seemed to care. We hooted and hollered and filled the house with laughter for a while.

We don’t have candles in our house, we have oxygen tanks instead. But on Liam’s birthday we throw caution to the wind and light a few because every child should have candles on their birthday cake. We turn the supplemental oxygen off and even pop off Liam’s circuit and point the tube at his cake so that Liam’s vent “blows” out his candles. We’re a little weird that way.

1-Resampled952012-12-269517-45-4895904

So that was our Christmas Eve, Christmas, and Liam’s birthday in three crazy days and over three hundred miles of travelling. It was wonderful. If I had the energy I’d try to wrap it all into some neat little narrative package. But I don’t so I’ll let the pictures try to do that.

1-2012-12-24_20-30-05_920