I urge everyone to call your Senator and voice your opposition to this bad legislation. Emails are ok. A fax or US letter from a tool like Resist Bot is also good. But, calls are what carry the most weight. Each call will take less than a minute. Here are some talking points.
Identify yourself by name and your current city of residence.
Urge the Senator to oppose the Cassidy-Graham Act.
Tell them you are speaking for a disabled, non-verbal 10-year-old boy.
Cuts, block grants, and per-capita spending limits (all part of Cassidy-Graham) would strip the disabled of essential services.
If you want to go above and beyond, you can ask the staffer answering the phone what the Senator’s current position is on the bill. You can also respectfully let them know that this is an important issue to you. And, that you will be watching how the Senator votes. A vote in support of this bill might impact your voting choice in the next election…
Here is the contact info for the two Iowa Senators:
This post is a guest article I was asked to write for the Iowa Department of Human Rights. They were interested to hear some thoughts on employment of disabled people from a parent/caretaker perspective. As Koan turned ten this week, I’ve already been thinking a bit about what the next ten years (and beyond) will look like…
Koan, my youngest son, has global developmental delays. He is ten years old and doesn’t walk, talk, or feed himself. No doctor or specialist has been able to tell us why these delays happened. We named him for the answerless riddles or parables that Zen monks meditate upon to reach enlightenment. We gave him this name before he was born and long before we knew he would face these types of challenges. It is, of course, a very fitting name. While it’s been a wild, wonderful adventure raising Koan, I do have some anxiety when I think about what his life will be like after he is finished with school. To be fair, I have two other children who are not disabled, and I worry about them a lot, too.
My three main goals for Koan are happiness, good health, and for him to be as independent as possible. While I don’t want to over-simplify anything, these are really the same goals I have for all three of my kids — including the two without disabilities. These global concepts have really helped my spouse and me in our decision making processes. We are now better able to focus on the important, big-picture items, and we don’t get bogged down in the unimportant details and minutia. This clarity of purpose has been of the many great gifts Koan has given our family.
I’ve spent a good deal of time thinking about what life will look like for Koan once he completes his K-12 experience. I find that I need to resist the temptation to over plan or over think his future. I certainly do want to be prepared for whatever opportunities he may wish to pursue as he gets older. And, of course, because of his disability, we need to a lot more thoughtful about his future — setting up a trust, launching an ABLE spending account, looking into group living options, etc… But, at the same time, I also don’t want to pigeonhole him or put him down a path that’s not right for him but makes sense to me. Just like my other kids, he will need to find his own path. We just need to give him space and time to do that. I can provide some guidance, but just like with his brother and sister, it’s really on him to figure out what he wants to do and how to leverage and take advantage his strengths. I merely hope to set up the circumstances to make that possible.
One of the main characteristics of independence, at least in my mind, is employment. Ideally, for Koan this would mean competitive employment. Having a meaningful job not only contributes to financial stability but it, more importantly, gives meaning and purpose. It instills a sense of confidence that only comes from doing real work. That feeling of “mattering” ripples into all sorts of other roles in life that have a tremendous impact on well being, too. Competitive employment is one of my highest and most rigorous aspirations for Koan.
While I’m not ready to lower my expectations, I also need to acknowledge that Koan may not be able to attain the goal of competitive employment if he stays on his current developmental trajectory. And, if he doesn’t reach that milestone, I hope that there are other, non-competitive, employment opportunities available for him. A “sheltered workshop” should certainly not be the first choice for anyone with a disability. But, that type of non-competitive environment can provide a great deal of social interaction and meaning if a competitive job were not an option. What I know about Koan as a ten-year-old is this — he would find a lot of joy working and interacting socially with others even if it were on tasks that others might find less meaningful. So, my hope is that when Koan finishes school he has a full array of options and opportunities available to him. And, again, this is really not all that different than what I want for all of my kids.
I’ve spent most of my time with this blog looking backward. I find that reflecting on what’s happened gives me access to insights and even some wisdom. But, for the next couple posts, I’m going to look ahead. Tomorrow, Wednesday, September 13th is Koan’s 10th birthday. Like all children, it doesn’t seem possible that he is that old. I can’t really remember what life was like before he came or even what I was like. Koan really did ruin everything… in the nicest way.
And, while I’m starting to really think more and more about what life will be like 10 years from now (I’ve been asked to write an article for the Iowa Department of Human Right about employment of people with disabilities — I’ll post that here first, of course), tomorrow is a really important day for Koan’s short-term future. Unfortunately, Koan is having more frequent seizures. We’ve seen five seizures in the last six weeks. So, for his 10th birthday, Koan gets to go the University of Iowa Children’s Hospital and visit with the pediatric neurology team.
While for most 10-year-old kids, this would be a real bummer of a way to spend a birthday, Koan will have a great time. He’ll get to take a trip to Iowa City — he loves going there. And, he’ll get to see a lot of new people who will dote on him tell him how cute he is (which he is…). So, he’s going to have fun. As for me, not so much…
The seizures we’ve been seeing lately are a bit different, in terms of intensity, that what we’ve seen over the last couple of years. We had a great run from about the time Koan was four months old til about age six — no seizures at all. When he was around six we started to see about one a quarter. Koan was never diagnosed as a full epileptic, but he did have an abnormal EEG, particularly during his sleep cycle. So, these seizures almost always happen at night or very early in the morning. These events were very intense and rather long (10-15 minutes) grand mal episodes. They would put him out of commission for about 12-18 hours afterwards, too. He would be pale and very lethargic afterward. The last few seizures we’ve seen (the last three in particular) have looked and sounded like what all of the others, but he seems fine after a couple of hours of rest. So, he’s recovering much faster. I’m not sure if that matters at all. But, it is a change.
I really have no idea what the care team will recommend for him. I certainly don’t want to start another run of anticonvulsant medication for him. But, I suspect that’s pretty likely, however. I’m worried that whatever they give him (again if we decided to do this) will change his personality — slow him down — mute his expressions of joy. I’m also concerned that any medication may further hinder his development. And, like most medications, there’s a therapeutic target zone for these drugs that’s pretty hard to stay on top of with growing children. So, there will always be doubt in my mind if we are in the “sweet spot”. I’m honestly hoping we can find a way to not medicate him.
That being said, last spring a colleague I work with on SEAP had her adult child with disabilities (he was in his late twenties) passed away due to complications from a seizure. He was a really high-functioning guy, competitively employed, literate at the 1st grade level — a very important milestone. This was a very unexpected. He, like Koan, was not diagnosed with epilepsy but did have a seizure disorder. So, I know the seizures that Koan is experiencing are nothing to trifle with and need to be treated.
Understandably, I’ve been thinking a lot about the appointment tomorrow. It does seem fitting that we would have it on his 10th birthday. I wonder if we’ll be entering a new chapter in Koan’s story. The circumstances sure feel that way. I suspect tomorrow is just the beginning. And, that’s a daunting thought: tests, medications, uncertainty. But, as Joe Strummer said, “The future is unwritten…” So, I really don’t know what’s going to happen next. As always, we’ll take it a step at a time and a day at a time.
Right at the end of the 2015 school year, Jeri and I took a trip to Minneapolis to see Dan Wilson in concert. I’ve really liked Dan’s music since I first saw him in his old band, Trip Shakespeare, at Gabe’s in Iowa City back in 1988. The Minneapolis concert was on Friday evening in a small theater in the West Bank neighborhood. Three really interesting things happened that night. We drove up to the Cities that afternoon and parked in structure about a block from the venue. There was a pub across the street from the theater, so we decided to have a meal and a drink there. As we were eating (and drinking), I checked my beer into the Untapped app and tagged our location, The Arcadia. I had never been there before and we choose it because it was between our parking spot and the theater. As it turns out, it’s the hometown bar of my good friend Tom Burrell. Tom is friends with the owner and hangs out there all the time. So, out of all the places we could have selected to eat that night, we randomly chose one of the most beloved places of our closest friends. However, while we have a lot of friends in the Cities, we had told no one we were visiting because we wanted the trip to be kind of like a date night. Needless to say, after I checked in, I had to spend some time answering the “What the hell are you doing at the Arcadia without me?” texts from Tom.
The Arcadia is small and dark. Jeri and I were sitting at a small bar-height table with a view of the street. The concert start time was 8:00 PM and we arrived around 6:30. To maximize seating, the small, round, and tall tables are closely packed together. There’s not a lot of elbow room. But, the place is virtually empty — the dead time between the after work crowd and the full night time rush. There are only about ten other people in the bar. The jukebox is run full-blast however, so Jeri and I have to lean into one another across the table to hear each other talk. After I finish texted Tom an explanation of why we are at his bar, Jeri grabs my hand and motions with her head and says in a low voice, “ Have a look at the guy at the next table.” Again, not many people are in the bar and the music is playing loudly, so even though I can reach out and touch the guy at the next table, he can’t hear Jeri or me. As casually as I can, I look over my shoulder. There’s an older guy sitting there by himself. He’s in his mid-fifties with hipster glasses and a haircut –not an unusual sight in the Cities. Jeri whispers, “I think that’s Dan Wilson.” It’s possible. The guy is about the right age, but it’s dark. I can’t tell. So, we quietly debate. I argue that it’s not him — I figure he would be in the green room at the theatre across the street this close to the show — not hanging out by himself in a bar. About ten minutes later, a group of people join him and it becomes clear as we catch snatches of their conversation that it’s the Wilson family. Dan is indeed sitting right behind us. To underscore that we are not millennials, never once did it occur to either of us to ask to have a picture taken. We merely enjoy our time dining next to greatness.
The show was really fun and enjoyable. Like many performers, Dan Wilson is as much a storyteller as a musician. Between each song, he would related anecdotes. About halfway through the concert he told the story of how he was flying to Greece to perform at an awards show. And, while he was on this long, eight hour flight, there was a young man with disabilities in his section of the plane. The kid in question was in his early teens and he was having some trouble processing all the input coming his way while on the jet — the sound of the engines, the turbulence, the crush of humanity in general. So, every few minutes he would let out whoop sound to let off steam and rest. This sound would startle everyone around him. As the flight progressed, Dan watched the young man and started to pick up on the tells that a new whoop was coming. Dan began to giggle at the discomfort this was causing the other passengers who were understandably getting less and less patient with this behavior as the eight hours dragged on and on. Finally, a woman near Dan called him on enjoyment of the situation. It turns out it was the boy’s mom. They had a great conversation. She was taking this child on the trip even though she knew it would be tough for him (and everyone around him) because she felt he would grow from the experience once they got to Greece. It was a great, humorous, example of inclusion. This conversation was the basis for Dan’s song, “Your Brighter Days” which I quoted at the top of this post. I love this song. It works for me as a tone poem that captures the joys of hope that comes from caring for a disabled person. Those first couple of years with Koan were all about focusing on the “brighter days.”
Our pediatrician and all the other specialist all told us as when we took Koan home from the NICU that we would know a lot more about his development when he was a year old. A typical one-year-old child will be rolling over, crawling — perhaps even walking, pulling themselves up passing objects from one hand to the other — crossing the right/left midline, etc… When Koan turned one, he could smile. He could not roll over or even sit up without support. He never used his hands or picked anything up in either hand. He never learned to hold a bottle. But, again, he really did know how to smile.
So, it was pretty clear to Jeri and me by his first birthday that we had an exceptional child. As with a “typical child,” developmental milestones happen gradually. So, it’s not like we were surprised or even alarmed by his lack of progress over the first year. We became acclimated over time to the idea that he would be different. But, there were times when this distinction became tough and real.
The support system in Iowa that identifies and aligns services for disabled people and families works and works well. I’m not sure I have enough superlatives to share how much I appreciate the work that the Child Find and Early Access people did for us. These teams from Grant Wood AEA put us on the right path, got us enrolled in essential services, and connected to the most helpful organizations. Even today, almost ten years later, we are still reaping the benefits of their services. I shudder when I think what our lives would have been like if we had not had such competent and dedicated help at that time.
I can’t recall exactly when, but sometime after we got home from the NICU and before Koan turned six months old, the Early Access folks contacted us and scheduled a home visit. They had been tracking us based upon our stay in the NICU. After completing some surveys and doing some interviews/examinations, these folks encouraged us to apply for the Iowa Medicaid Waiver. This program, put in place by family advocates thirty years ago, makes it possible for kids like Koan to access Medicaid services regardless of income restrictions. This visionary program is the foundation of so many essential services that we’ve come to find essential: physical therapy, occupational therapy, speech therapy, respite care, mobility supports (walkers, AFOs — leg braces), medical supplies (disposable briefs when he turned six years old), etc… None of those things happen without the Waiver. This program is also why I try to be a strong advocate for Medicaid services.
However, when we were applying for the Waiver, we had to make a choice. There are two different types of Waivers available: there’s one of physical disability and there’s one for intellectual disability. The physical disability waiver had a several month waiting list in order to access services. But, it had none of the stigma (in my mind at least) associated with the other Waiver category. The Intellectual Disability (ID) waiver was available right away. Again, Koan was not quite a year old when we started down this path. It was a really difficult choice. I hated the idea of giving him the ID label. I was still coming to terms with who he was and was going to become. This felt like a baptism — if we put this label on him, it would never come off. I was frightened by that idea.
I’ve written about this idea of coming to grips with who Koan is. The advice we got from Deb and Charlie was deeply personal, wise, valuable, and private. Enrolling Koan in a state run program with the ID label was a different order of magnitude. With the ID Waiver we were publicly acknowledging he was different. That was a difficult pill to swallow. While I did anguish over that decision for a bit, it was really clear once we decided — it was a great move. The Waiver set in place nearly all of Koan’s care plan. It connected us with the Arc — an absolutely invaluable resource. In short, the Waiver made it possible to hope and to see his “brighter days coming…”
Four years ago, I was invited to join SEAP (Special Education Advisory Panel) for the Iowa Department of Education. SEAP provides input for DE policy makers for all sorts of special ed issues. It’s funny how seminal events in life often seem insignificant at the time. When I got the invitation to join SEAP, I almost disregarded it. I didn’t know much about special ed. I felt (and still do) that our school was doing a good job with Koan. So, I just didn’t think I’d have much to contribute or gain by joining SEAP. But, I reflected on it further and thought about all of my connections to special education (again I’m still no expert). I was a special education student when I was in school. In fact, that’s the main reason I became an educator, but that’s an entirely different story. Jeri taught special ed for years. And, of course, there was Koan. So, I decided to join SEAP. This one decision has had a number really interesting and positive ripples in my life both professionally and personally.
At one of the first meetings I attended, Karen Thompson, the executive director of Ask Resource Iowa, was chairing the meeting. As she did with all of the meetings she ran at SEAP, she started us off with a really good video. In this case, it was the video I’ve embedded above. It’s well worth the four minute run time. There are so many powerful and great messages that Megan shares. But, there was one line that struck me like a thunderbolt, and I’ve thought about ever since.
Near the end of the video, Megan is giving advice to teachers. She says, “Don’t make me your classroom mascot.” Oh my goodness! Such wisdom! There’s a really fine and difficult balance that schools (or any social organization) need to walk when working with disabled people. I’m often uncomfortable when I see a story on ESPN of a disabled child scoring a touchdown in a football game or making a shot in basketball game. It’s the same thing I feel when our local news runs the story of the disabled kid who is elected homecoming Queen or King. I’m probably a little too inherently suspicious of people’s motivations. But, it sometimes feels exploitive. Whenever I see a story like that in the media, I wonder how the disabled person was treated month before or after the newsworthy event. If the child is truly included and valued for who they are (and not just because they are different), then these are wonderful gestures and very commendable. But, it’s easy for me to imagine the other scenario where the disabled person is being used as the centerpiece at an event make everyone around them feel better about themselves — ie… like a mascot.
I do think this can be a really tough line for well-intentioned people to see. I have to think about this continually with Koan. It’s not a “black or white” thing. I am a strong believer and supporter of inclusion. Koan thrives when he has the chance to be with other kids his age. We need Koan to be as highly engaged and involved with his peers as possible. It’s essential for him and good for everyone around him. But, it’s not always easy or simple to make it happen in a meaningful way. It takes thought to design an environment where these types of genuine interactions can take place. Ever since I saw Megan’s video, I have used her language in every IEP meeting or any venue where Koan will be integrated in with like-aged peers — “Involve him, but don’t make him a mascot.”
In our four years at Prairie Ridge, Koan’s school, I think they have done a masterful job managing inclusion. Koan is continually and purposefully engaged with lots of adults and kids every day. These are thoughtful, planned interactions. I’m so appreciative of all the staff at Ridge for their efforts. Koan loves to go to school and this is one of the main reasons why. On a personal level, I thought about this question before I started this blog. I’m doing my best to honor Koan with these stories and reflections. I hope I’m not exploiting him. My larger point is that like many things, true inclusion is not an event. It’s a process that should happen continuously.
A couple of months back, there was a silly Facebook test that came across my timeline. It asked you to identify an ambiguous color and depending on your response (supposedly), it would tell you your base disposition (optimist, pessimist, etc…). I don’t normally take that kind of click bait, but I bit this time. It was an interesting question and the quiz didn’t take much time. My response came back as an optimist. I didn’t find that surprising. I see myself that way. I shared this finding with Jeri and several friends at a social gathering. They all smiled, shook their heads, and said, “No. That’s not you. You’re a realist.” After a lengthy debate, we all agreed that I’m not blindly optimistic. I’ll admit, I don’t instantly look for the positives when I’ve been dealt a reverse. I can even be very negative in the short term. But, I always find a way to eventually find the good in just about any situation. I don’t like the realist label. Like the pessimist label, that implies victim thinking — a resignation of one’s self to the situation. I hate to do this, but I’m going to quote Richard Bach — no not Jonathan Livingston Seagull — worse! Illusions. I’m embarrassed to admit I’ve read both. But, I do believe truth is truth. In that book, Bach wrote something to the effect that, “all problems come bearing gifts in their hands.” I really believe this. Sometimes, it just takes me a while to see the gift and embrace it.
The winter of 2008 was not a lot easier than the fall of 2007. But, it was a different kind of difficult. From the time Koan first went into the hospital in mid-September until the time he was last hospitalized in November, Jeri and were not really thinking about big picture stuff. Those three months in the fall were a shock to the system. We were just looking to get through each day as it came — pure survival mode. It was Maslow’s Hierarchy of Needs sort of deal. Jeri and I were so preoccupied with the seizures, that we could not think about what all of this might mean down the road.
But, by January of 2008, the seizures had stopped. While we still worried about them coming back, we soon found ourselves settling into a routine. All of the doctors and specialist had no idea if Koan would go on a normal developmental trajectory or if he would experience delays. Nearly all of them said the same thing, “You’ll know when he’s about a year old…” So, these next few months were pretty tough. We hoped for the best and starting thinking about bad scenarios. We obsessed over everything he did or did not do. As these weeks began to stretch into months, I started to reflect on a couple of pieces of advice we got while Koan was in the NICU.
During our time in the NICU, Deb Streff came up to see us frequently. Jeri and Deb taught together for several years. She and her husband Steve have an adult child with disabilities, JR. Deb knew early on what was going to happen with Koan — long before either Jeri or I wanted to admit it to ourselves. On one visit she said something that I’ve reflected on many times since. She said, “It’s going to be ok. Take some time to grieve for the child you thought you were going to have. Then love the child you have.”
Before Jeri worked with Deb, I knew of the Streffs and their family. Steve taught at the high school I attended. And, a close friend of mine when I was growing up, Scott Emerson, would periodically babysit for the Streffs (his parents knew the Streffs socially). So, I would hear bits and pieces about his time with JR. When I was younger, I didn’t know any disabled people. JR Streff was the only disabled person I really knew about. I remember thinking how different and difficult it must be in the Streff house – – caring for someone who moved so slowly and had such a limited vocabulary. I couldn’t imagine living with or taking care of someone like that. It seemed like such a burden.
So, Deb intimated that Koan was disabled (in my mind like JR) less than a month after he was born, I wanted nothing of it. I didn’t get angry, but I did not want to have that type of conversation. I felt like we knew so little about Koan. I also mistakenly thought that if I openly acknowledged the possibility of a disability, I was setting lower expectations for him. Of course, I look back on it now and I realize how high-functioning JR really is. He’s mobile, he can communicate verbally. He can do so many more things independently than Koan can. Envious isn’t the right word, but I want what he can do for Koan. This is just a concrete example of how much my perspective has changed since Koan came into our lives.
Deb’s advice, even though I did not want to hear it at the time, was so wise and profound. Once we got out of survival mode, I did reflect on her words and found the meaning in them. I’m so thankful now that she was brave and said that to us then. It was natural and inevitable that we would feel loss and sadness at that time. But, it was so important to unconditionally love Koan for who he was, too. I still reflect her words to this day. Occasionally, I still have some sad moments. Sometimes I look out the window and see children in our neighborhood riding bikes, playing baseball, or jumping around on a swing set — all things Koan can’t do right now. I wonder what might have been. But, I tell myself, it’s ok to be sad sometimes. The trade offs we get for Koan as he is are pretty awesome.
As I was returning to work after Koan was discharged from the NICU, I got some other words of wisdom from one of my co-works, Charlie Braun. Charlie was my first hire at Prairie. He’s a really interesting and eclectic person — a mix of technical/analytical and artistic/holistic: industry certified computer technician, painter, musician, etc… Before Charlie worked at Prairie, he had spent time with the ARC as a respite worker. And, as he was growing up his family cared for several foster children — many with disabilities. So, he had a lot of experience with disabled people. As I was settling back into my work routine, I was relating to Charlie the worries I had about Koan. At that time, I didn’t know how disabled he would be, but I had a pretty good idea that we were going to see some types of delays.
In one of these conversations, Charlie said something that, again, I did not like or want to hear. But, it was deeply insightful. He said, “You are going to grow to love his disabilities.” What he meant by that was pretty simple — these differences will define who he is and will be overt characteristics that we would (eventually) find endearing rather than burdensome. At the time, I could not possibly imagine loving something that was going to set my child apart and make his life more difficult. That seemed like accepting a lower standard for him or a lowering of expectations. I tried to reject the idea. But, of course, Charlie was totally right. It’s impossible to not love all of Koan.
The little foibles and idiosyncrasies make him who he is. I fervently wish that Koan had more skills that would make him more independent — walking, talking, feeding, etc… I love the way he tells us stories with no words, but lots of sounds –his squeals of delight, his shouts of outrage when he doesn’t get what he wants… The way he raises his arms above his head and shakes them when he’s happy and excited — think Kermit the Frog for this. I also know, having raised another “developmentally on-target” boy, that he would not smile nearly as much at 10 years old. And, again, while I certainly want more for him, I do so love all of these little traits that make him special. As I’ve said many times before, I would not wish his condition on anyone, but I would not trade him or change him.
Koan loves water. He loves the feel of it. He loves being covered in it. He looks for any opportunity to spill and splash water. Baths are a favorite activity. Sydney and Tiber hated having their hair washed when they were little. Koan can’t get enough. If there’s open water in the house Koan will find it and make a real mess once he does. It’s one of the great joys of his life. As you might imagine, we’ve had to modify our collective habits and routines to account for his aqua-philia. The cats’ water container is located downstairs now. We never leave a glass (or any container) of liquid anywhere near the floor. And, both toilets on the main level are always to be left with lid down or bathroom door shut.
On August first, I was scheduled to out of the office for the afternoon for a doctor’s appointment. I was having some minor surgery — removal of a mole and cyst from my back. I left the office early to have this done. I had arrived at work that day to find a new note on a support case I had started the previous week with our student information system provider, Infinite Campus. The note indicated that I need to call them to discuss the ticket. The issue I had reported was rather minor, so this seemed odd. When I got the tech assigned to the ticket on the phone, his first words to me were, “Let me get my manager…” I knew this was going to be an interesting day.
It turns out, an automated database cleanup process had quit running several days before on the Campus server. This missing cleanup had let some corruption seep into our student database. Registration was scheduled to start on August second, the next day. So, this was terrible timing and pretty troubling news. Over the course of the morning, the Campus hosting team and I worked out a plan that we believed would remove the corrupted data and have us ready to register 5,000+ kids the following day. They were going to do a partial restore to the last known good database from the previous Wednesday and manually massage the data we had added since then back into the database. The restore was going to take a couple of hours and the Campus would be unavailable for use during that time. So, we scheduled the outage from 11:00 AM to 1:00 PM. This worked out well for me because this would mean that Campus would be back online by before I had to leave for my doctor’s appointment at 2:00 PM.
Campus was still offline at 1:30 when I needed to leave the office in order to give myself enough time to get checked in at the doctor’s office. I wasn’t particularly worried. I trusted the Campus support team and my local team was checking and would text me when it was back up. When I came out of the procedure, I checked my phone. And, sure enough, there was a text from Chris Ketchum letting me know Campus was back. So, I left the doctor’s office and headed to Target to get my follow-up prescriptions filled and to get some bigger band aids. While I was waiting at Target, I started getting emails from our secretarial staff indicating that Campus is not working. I couldn’t replicate the problem on my phone, but I believed there was a problem. So, I hustled home.
The reason I went home and not to the office was two-fold. There wasn’t much that I couldn’t do at home that I could do at the office for this type of problem. And, most of the impacted personnel, the secretaries, had already left for the day since it was already past 5:00 PM. Secondly, Tiber had been watching Koan all day. Jeri had spent the day in her classroom and was going out with some work friends for a “girls night out” that evening. Sydney was also out with her friends. So, Tiber had been solo caring for Koan all day, and I figured he needed a break.
I got home; replicated the problems reported in the emails, and started a call to Campus Hosting Support. There were several calls over the next few hours. I was talking on speaker phone to the support manager while feeding Koan. There were more calls after that. Tiber retreated to his man-cave in our basement. Koan and I were on the main floor. Things were not going well with the support call. I was beginning to feel a creeping sense of panic as I considered the possibility that Campus may not be available for registration. Like many people, when I’m nervous and worried, I pace. I stationed Koan in our great room and I walked a circuitous route from the great room (to check on Koan), to our master bedroom (quieter) and into our master bath (quietest) as I talked to the increasingly apologetic Campus support manager. Koan was babbling away — singing his nonsensical songs the whole time. But, he was quite good and entertained himself. I didn’t need to change a diaper or have our Amazon Echo play “Wheels on the Bus” — Koan’s ultimate calm-down song.
Around 7:30 PM, it was clear there’s only one viable path forward — a full restore of the database from the previous Wednesday. This meant that nearly a week’s worth of work would be lost. It was a lonely few minutes as I weighed the decision in our master bedroom. But, there was really the only sensible call — do the restore. So, I gave the go ahead to do that. Almost at that same time, Tiber emerges from the basement. Earlier in the summer, I bought Tiber an inexpensive electric guitar and amp as a reward for all of the time he’d spent caring for Koan. He’d found my old Cry Baby wah-wah pedal and wanted to use it. But, it needed a new 9-volt battery. So, he told me that he wanted to go to the store to pick up a battery. This would be his first time as a solo driver. I agreed to his plan. I wanted to encourage his independence, and I secretly wanted to play his new guitar with the Cry Baby myself.
As Tiber left, I headed upstairs to my office to write a very sensitive and delicate email to everyone who might be impacted by the data loss we were going to experience in Campus. Koan was sitting by our front door and the doorway to his room. He was playing somewhat quietly but very happily. I became engrossed in the composition process. I created several drafts. I looked at each word to be sure that I did a good job of explaining the situation without being too technical while making it very clear there really was only one option to address the problem. As I finished up the final draft, I realized the house is very, very quiet — too quiet. Just at that same moment, Tiber got home.
I gave the email one last read. I heard Tiber downstairs tromping through the kitchen. A second later, I hit “send.” Tiber called upstairs — “Hey! I think you need to come down here!” I realized with dread that when I was pacing earlier, I made a cardinal mistake in our household. I had left not only the door to my bedroom open, but the door to the master bath, and almost certainly the toilet seat was up, too. It was the same sinking feeling that every parent of young children has when the house goes too quiet.
I bolted down the stairs, through our great room, through my master bedroom, and into the master bath. Koan was sitting in front of the toilet. The lid was up. Keep in mind that Koan will not feed himself. Notice I use the words “will not” and not the words “can not.” He loves food, but he will not consistently move food from his feeding tray to his mouth. However, in the time that I was upstairs writing my email, he had found to his delight that the bedroom and bathroom doors were open and even better, the toilet seat was up — a celebration ensued. He managed to spool an entire roll of toilet paper into the toilet. Again, a pretty complicated task for a guy who will not feed himself. Then, using his open palm, he splashed (exploded really) the contents of the toilet all over himself and the entire bathroom. He looked like a very happy and proud snowman — covered in goopy white bits of toilet paper and soaking wet — head to toe. Worse yet, there were wet pieces of toilet paper all over the bathroom. It looked like a toilet paper bomb had detonated in the space.
I’ll be honest, this was not my finest moment as a parent. Koan was smiling, delighted with himself, proud. He had had a wonderful time! I strode into the room and closed the toilet cover. That did not meet with Koan’s approval. The look on is his face said it all — that was an act of betrayal and complete meanness. I had taken his fun away and he was going to make me pay for that. He began to wail. I gave a howl of exasperation myself. That made Koan cry louder. I picked him up and hustled him into our bedroom. I set him on the floor next to the bed. I could feel the stitches in my back straining, nearly popping as I lifted him. I was feeling like crying along with him. I called for Tiber (who was laughing) to get me a broom. He headed out the door, sniggering all the way. After returning with the broom, Tiber got a good look at me and wisely decided to stay clear of both of Koan and me for a few minutes.
In retrospect, I wish I had taken a couple of pictures of Koan’s state and the scene of the crime. But, I was just too flustered given my physical and mental states. As I worked to clear the floor so I can give Koan a bath, I can hear him howling in outrage in the master bedroom. I called Tiber back as I was completing the rough clean up. I need him to take away the broom. He called to me as he came back into the master bedroom. I could not hear what he said over Koan’s screams. In his rage, Koan had cried himself into a bloody nose. So, he was now covered in gooey toilet paper, snot, and blood — a real treat for the eyes.
Once the bath water started rolling into the tub, Koan’s screams of anger turned to squeals of delight. I was well aware that in Koan’s mind this was even better than splashing wet toilet paper — a bath! The last thing I wanted to do was reward his behavior. But, there was just no other choice. Of course, the ultimate irony was that none of this would have happened if a so called “clean up” routine had not failed on the Campus server.
Jeri got home around 10:30 that night. I was already in bed. “How were things here?” She asked as she passed through our bedroom into the bathroom. “Nothing new here.” I was too tired to explain what happened. I figured the full story could wait until morning.
Koan was released from the hospital in early October. We had lived in the NICU for a little over three weeks. He was eating on his own consistently and while he was still having seizures, they were not training in one on top of the other. The future was still very uncertain. We had set up follow up appointments with Dr. Peterson here in Cedar Rapids and scheduled a consultation with the University of Iowa Children’s’ Hospital to see if we could get some answers on what was the cause of Koan’s troubles.
It was great to get home and resume some semblance of a normal life: sleeping in my own bed, eating in my own kitchen, seeing my spouse and children at regular times. But, there were always reminders that things were not quite right. We had to give Koan phenobarbital, the anticonvulsive medication, twice a day. This was tricky. The prescription we had was a red, thick, goopy, liquid. We need to put it in his formula in the morning and in the evening. I never tasted it myself, but I can imagine it didn’t go too well with the formula we were feeding Koan. He would often spit it out or spit it up. I remember constantly being worried that we were under-dosing him. This thought crossed my mind each time we saw a seizure.
The seizures were coming about one every thirty to forty hours. And, of course, these were just the ones we saw. I’m sure he had many at night. But, we would go a day without seeing one, and vainly hope that they were gone. The first month at home, we saw Dr. Peterson weekly. After a couple of weeks, with no luck eradicating the seizures, we had tried increasing Koan’s dose of phenobarbital, Dr. Peterson switch anticonvulsants. The new medication, Dilantin, gave us brief hope. There were a couple of days without seizures, but soon, they came back with the same duration and frequency.
Early on, I had a lot of trouble recognizing a seizure. But, as he got older, it became all too familiar. Koan would always start (and often still does) by letting out a very distinctive yelp/cry. There’s no good way to describe it, but it’s not in his normal vocal pattern. It’s instantly recognizable to both Jeri and me know. This was a red herring a while as early on, all the physicians and neurologists told us that seizures are silent events with no vocalization. But, as we would learn over the years, Koan was rarely “typical.” After he would cry out, he would turn his head to the right, raise an arm over his head and rhythmically nod his head. These episodes were short. Usually, it would be done in less than two minutes. And, he would be back to normal, not any worse for the wear. But, for Jeri and I each one was a devastating disappointment. We were continually adjusting medication. So, there was hope with each adjustment that we had seen the last one.
Almost immediately upon our arrival at home, it became clear that our long time and adored cat, Mikey, was really ill. Jeri had adopted Mikey from our friends the Derrs about a year before we were married. He was big, sleek, and black. After we were married, but before Sydney and Tiber were born, we referred to him as our .3 child. Jeri loved, loved, loved Mikey. He was her cat (or she was his person — hard to know the better way to describe it). If she was upset for any reason, Mike would know. He would seek her out and try to comfort her. They shared a tight bond. In the months before Koan was born, Mikey lost a lot of weight. So, we knew something was not right. But, he was over sixteen years old at that point. As we settled back into our normal routine, we could see he was really ill and in pain. He had probably been that way for a few days, unfortunately, while we were occupied with Koan in the NICU. It was clearly his time. Jeri is so strong. She took Mikey on his final visit to the vet by herself. While we were all very sad, the loss of our beloved Mikey was overshadowed by our concern for Koan. And, in retrospect, that may have been a blessing.
About a week later, we decided to get another cat. I kind of pushed for this. Jeri had about a month of maternity leave left and I thought having a new kitten would ease her bereavement and give everyone in the family a break from the cloud of anxiety we were all feeling about Koan. I hoped Jeri could use the time off to bond with our new cat. Jeri has always had a black cat. So, we set out to find a black kitten. And, as it turned out a local vet near our house had several rescued feral kittens and one was black. We decided to have a look at them.
There were three left: one black and two gray striped tabby kittens. The black kitten seemed to be really shy and timid (we would soon learn this was a ruse), but one of the tabbies was quite bold and friendly. So, against my better judgment, we adopted the bold tabby and the shy black kitten. We named them Rascal (the gray tabby — for the anime raccoon) and Kinnick (in honor of the great Hawkeye football player). We still have them both today. My mom ended up adopting the last gray tabby, so all of these cats ended up in my family. While there are a ton of great Kinnick and Rascal stories, I’ll only relate two.
Jeri has always been the “cat person” in our family. I like cats just fine, but I’m very allergic to them so I don’t interact with them a lot. I had it in my mind that these two cats would provide Jeri with some solace and even joy as she stayed at home with Koan. I suppose what happened next was inevitable. Jeri was so occupied with Koan feeding him, changing him, getting him to appointments, etc… she had little time for the kittens. Sydney and Tiber had all sorts of time to give the cats attention. So, within a few weeks, it became clear that our two older kids had bonded with the new cats. Not only did the two cats not go to Jeri for attention, it seemed like they had some genuine (but unfounded) animosity toward her. So, this was another great ironic life-truth. The one “cat person” in the house was disliked by both of the cats. Over the years, the dislike has blunted a bit. The cats now tolerate her. But, certainly, they don’t love her like Mikey did. Several years later, Jeri tried to fill this feline love void with yet another cat. That didn’t really work either, but that’s another story.
Our new black cat, Kinnick, turned out not to be shy at all. I don’t know what kind of act he was putting on at the vet, but he’s never been timid since then. As he grew up with Koan, he became obsessed with him. I think Kinnick believed that if he acted like Koan, he would get more attention. So, he would sit/sleep in Koan’s high chair. Sleep in his crib. But, the most interesting thing he did was climb into his jumper. I would have believed it if I had not seen him do it. The pictures below are evidence. We did not put in in the jumper. He crawled inside and sat — with his back legs and tail sticking out the bottom. I wish I had the presence of mind to capture this on video.
The new kittens did bring some relief and joy (to some of us), but there were still some difficult times. A couple of weeks after Koan came home, we had a major scare. It was in the middle of the work week, I don’t recall the day. During the evening, Jeri was feeding Koan a bottle of formula. It was about 6:30 PM just after the local news had finished. As she was feeding him, some of the formula must have “gone down the wrong pipe” and Koan began to cough. Then he stopped coughing and went silent. We realized he was not breathing. This was another one of those moments where every second seemed like hours. We sat him up. We did our best to look in his mouth to see if we could see any blockage. He started to turn blue. The change in color was dramatic and very real. There was a feeling of unreality and Deja-Vu. I could not believe he had stopped breathing again. This was so much worse than when we were in the hospital. There was no one here to help.
After a few seconds, Jeri called 911. We began a panicky exchange with the operator. Jeri had just finished describing his age and condition when Koan suddenly gasped and began to breathe again. The bubble of formula or whatever it was had cleared. However, the fire rescue and police were already on the way. A couple minutes later, the fire truck stopped in front of our house with lights blazing. A couple of paramedics came in and give Koan a quick once over. We explained what happened. And, they could tell how shaken we were. One of the guys, in an attempt at compassion said, “Everything looks fine now. But, I’m guessing you won’t sleep well unless we take him to the hospital to be looked at by a doctor.” Without any hesitation, Jeri and I both said, “NO!” It felt like we had just gotten home and no one wanted to go back. So, I’m sure the intensity of our response surprised the EMT.
As October turned into November, we were still seeing seizures. And, unfortunately, the frequency and duration were both increasing. For whatever reason, it appeared Koan’s condition was getting worse. We had tried various increasing doses of phenobarbital, and while it would seem to work for a day or two, inevitably he would have a seizure later. We then switched to Dilantin with the same type of results. Start at a low dose and increase to the maximum for his age/weight with diminishing results. We then tried a third drug. Same process, same result. There were not a lot of medication options left for someone Koan’s age. We had been visiting Dr. Peterson, our neurologist, weekly, and with each trip and lack of results the appoints became more and more grim. It felt like no one knew what to do. As an off the wall idea, Dr. Peterson had suggested one very unlikely possibility was a rare condition that causes vitamin B deficiency. The treatment was simple — give Koan a compounded, pharmaceutical mixture of vitamin B every day. These compounds were not inexpensive and since they were not technically a drug/medication they were not covered by our insurance plan. So, given the cost and the very low probability that Koan had this disorder, we elected not to try this.
Around the second week in November, again on a weekday in the early evening, Koan had a severe seizure. This one was unlike anything we had seen before. The symptoms were kind of the same, but the duration was a lot longer. Typically, he came out of his seizure state in under five minutes. Our seizure protocol (even to this day) is to start a stopwatch. This particular seizure just would not stop. At fifteen minutes, we called 911. This time everyone agreed that he needed to get to a hospital. After talking with the dispatcher, we determined that since the seizure was not violent that we could get him to the hospital faster if we transported him ourselves. So, we drove him to St. Lukes and he was admitted.
The treatment team gave him a sedative to ease him out of the seizure and stabilize him. Jeri stayed with him that night, and I went home to care for Sydney and Tiber. This may have been the lowest point of my life. We had no idea what was going on or what to expect. Koan’s condition seemed to be getting worse and worse. There was no end in sight– no bottom. I had experienced emotional and physical exhaustion before. But, this was different. I would describe myself as a pragmatic optimist. I’m not blindly optimistic in all situations. But, given enough time I’ll find the silver lining in any situation. This time I had nothing. That was a long, black night.
The next day, Koan had another long seizure. Again, they needed to give him drugs to ease the duration. After that Jeri and I had a consultation with Dr. Peterson. There were no new ideas. So, as a “Hail Mary” we decided to start giving him the vitamin B compound in addition to the high dose of anticonvulsant. We figured it would not hurt him any and all we would be out is some money. The seizure on November 8th, 2007 was the last one we would see for over six years.
The way I’ve written this makes it seem like the vitamin B was the Holy Grail solution. And, while it seemed like it at the time, it was not. To this day no one of know why the seizures suddenly stopped. Dr. Peterson was skeptical from the start. Koan didn’t fit the profile of someone with this type of condition. After a few months, we weaned him off the anticonvulsant and off of the vitamin B compound. It’s almost like God or the Universe suddenly decided, “Let ‘em up. They’ve had enough…” The seizures stayed away for years. Anyone who follows me on Facebook knows that Koan still occasionally does have a seizure — about once every three or four months and mostly at night. We don’t believe, and neither do the pediatric neurology team at UIHC, that it’s worth the effort or side effects to put him on an anticonvulsant again. We are just keeping our fingers crossed they don’t increase in frequency again.
These were the last of our close call, emergency health scares with Koan. Let’s hope that continues. As we went into 2008, I was still hopeful and optimistic that all of these events were just bumps in the road. I thought and believed that Koan would take off and hit all of his development milestones — just like his brother and sister — once we got the seizures behind us. Unfortunately, that was not the case. And, that is the next chapter in Koan’s story.
Last Friday, Tiber and drove up to the Minneapolis to see the Mystery Science Theater 3000 live show. I’ve loved MST3K since the early nineties. Last spring, after a successful Kickstarter campaign, MST3K returned to NetFlix with a new cast. Tiber and I watched all of the new episodes and thoroughly enjoyed them. The new cast and crew did an incredible job of capturing the camp and charm of the original low-tech series. I highly recommend it.
When I saw the tour dates and locations, I thought about going. But, eventually dismissed the idea as too expensive. August is always kind of tight for us financially. All the back to school costs really add up and this year we are sending Sydney off to UNI. I mentioned the idea to Jeri but told her it was not going to happen. She is so wise. She recognized the potential value in this type of experience. Tiber would never forget this trip she argued. We can always pull a bit out of savings to pay for a priceless memory. Of course, she was right.
On our way up to the Cities, Tiber and I had a lot of really good conversations. Inevitably, the conversations turned to my youth and my family’s annual fishing vacation to Minnesota each summer. My dad loved these trips. He got one week of vacation a year, and each year we would spend it fishing on a lake. We weren’t serious anglers. Our goal was just to catch enough “pan fish” — bluegills, sunfish, etc… — to eat for the evening meal. The irony to all of this was that on seemingly each of these beloved getaways, my dad would have some type of painful (but often hilarious) mishap. I started to recount the best ones that I remembered to Tiber. Soon, we were both nearly in tears from laughter as we rolled down the road.
After the final story, involving a fish hook, a hospital visit, and my dad demanding a numbing agent even though the shot would cause more pain than the removal of the fish hook, Tiber turned to me and said, “I wish I got the chance to know Grandpa.” My dad had died when Tiber was five months old. I said, “ I do, too. But, he knew you. And, that’s pretty awesome.” My Mom and Dad took care of Tiber for a couple of months the spring he was born.
The conversation then turned to other memories of my Dad. His quick temper. His particular speaking habits. His personal charm and affability. It seemed like wherever we went while in the Cedar Rapids area when I was growing up, someone always recognized my Dad. If we were out eating, someone would always stop by the table and say hello. The same thing would happen at the grocery store or any store for that matter. Wherever we went, he knew someone there and conversations ensued. Dad was great with people. He genuinely enjoyed these interactions. It was one of his gifts.
As I finished telling Tiber this story, he said something really remarkable. “You really named Koan well.” I’ve often talked about how fitting Koan’s first name is. He’s a mysterious, blessed riddle. But, we used my Dad’s first name as Koan’s middle name: Koan Curtis Barnum. Tiber was absolutely right. All of us in my family, Sydney, Tiber, Jeri and I refer to Koan as our rock star. Everywhere we go in the area, people come up to us to say hello to Koan. Sometimes it’s just because he’s different and charming — he smiles and flirts with everyone. But, more often than not, we get stopped by someone calling out Koan’s name. On a lot of occasions, we have no idea who these people are — a paraprofessional from school, another parent from a day camp, friends from school, etc… It’s a long standing joke that Koan knows more people than anyone else in the family. But, I had never made the connection to my Dad. That one comment and realization really made it feel as if my Dad was close by. It was one of those — ”This is how it’s supposed to be and everything is great!” moments that come along every now and again.
I know I’ve shared this before, but until the start of 2017, I never really felt the need to advocate for Koan in any significant way. In fact, I think that some of my coping process was to avoid these types of situations. We didn’t do a lot to connect with other families and people who shared similar circumstances. I wanted to feel “normal” and our support structures were working so well, I just never felt the need. That’s a really powerful endorsement of the current Medicaid system by the way. But, when the November 2016 elections were finished, I knew we would be in for a fight. Over the course of early 2017, I started looking for opportunities to grow my network of caregivers and disabled people by attending conferences and other gatherings. Almost all of these inspiring, courageous people share a common thread or story. It seems like just about every one of them had a neonatal intensive care (NICU) experience. Here’s ours…
While I’m very thankful for the St. Luke’s NICU, I never want to see it again. And, I hope anyone reading this has never and will never need to go into one. I’ve visited standard intensive care units several times over the years when my Dad was ill. I’ve only ever been to the St. Luke’s NICU, but the cultural differences were dramatic. The NICU ward was segregated from the rest of the building by a set of thick, windowless double doors. Before entering, everyone was required to check in at the desk anytime you passed the doors. All visitors were also required to wash their hands up to their elbows. So, it was a bit of an ordeal to go in and out. The staff took these procedures very seriously and I’m grateful for that. But, this made mundane things like trips to the restroom or a jaunt to the vending machine a chore.
The rooms or bays were tiny — about seven to eight feet wide and about fifteen feet deep. There was no door at the end of the room, just a curtain that could be pulled to provide some privacy. There was so much equipment in the rooms, that each space could barely accommodate three adults. There was on reclining chair fit into the back corner and two folding chairs that could be opened when needed. Most of the time, we had them put away because there was no room to move if they were out. The room we started out in had no windows. The floor was waxed tile.
The most jarring and unsettling detail was the crib. It was about three and a half feet off the ground. There were rails at the head and foot but none on the sides. Logically, this makes perfect sense. Newborns are not going to roll or move by themselves and fall out. And, it would be pointless for staff to remove a rail or need to bend down to examine a child. But, it still really bothered me to see Koan sleeping on a mattress with no safety guard between him and the hard tile floor.
Koan was in the St. Luke’s NICU about three weeks. This time is right up there with my Dad’s passing as the most psychologically and physically challenging experiences of my life. I’m just happy to have survived it. I have no good memories of the experience. It colored everything. I had been waiting to read all of the Harry Potter books until they were all released — which happened earlier that summer. I had purchased all of them before Koan was born with the idea I would read them during my time off and at late night feedings, etc… I ended up rolling through all seven books in the first few days of our NICU stay. They were a great way to occupy my mind at all hours of the night. But, to this day, I have a lingering bad feeling when I see the movies or think about those stories. It’s kind of like a smell that brings back vivid memories.
The first few days in the NICU were the most difficult. Both Jeri and I stayed with Koan for the first two or three days. Our families and friends took over care for Sydney and Tiber. I don’t know who we would have gotten through this without that support. We got results back pretty quickly, around six or eight hours after the first seizure, that Koan did not have a serious infection. This was great news. The concern was that the types of infections that cause seizures like Koan was having would, to use the words of the pediatrician, “melt his brain”. So, that was a relief. But, we were still all very worried that there was a birth defect and that he was missing a large portion of his brain. The team at the NICU let us know that it would take weeks to get into the pediatric neurology department at the University of Iowa Children’s Hospital. Worse, there was no other certified pediatric neurologist in the area.
The thought that we would need to wait weeks to know if there was this type of defect was almost unbearable for me. Koan had been admitted to the NICU on a Monday evening. By, Wednesday, both Jeri and I were becoming really uncomfortable with the lack of diagnosis. I had spent the better part of two days stewing (with very little sleep) on all of the possible bad scenarios. These were the only two reasons the care team had presented us with that might cause Koan’s symptoms. It seems really likely to me that if the infection had not caused the seizures, it must be some type of congenital problem. The staff in the NICU must have sensed that we were close to a breakdown. They reached out to Dr. Andrew Peterson, a local neurologist, for help. While Dr. Peterson was not licensed as a pediatric neurologist, he had a lot of experience working with kids. But, he was on vacation all of that week. Luckily for us, it must have been a “staycation” for Dr. Peterson, because someone in the NICU persuaded him to come and see us on that Wednesday. This was one of the most profound acts of kindness anyone has ever done for me.
I know my description of the NICU is pretty harsh. But, the people who worked there are second to none. And, I would include Dr. Peterson in this as well. To this day, I’m still so thankful for his time over the next few hours. Dr. Peterson was calm, frank, friendly and compassionate. He examined Koan and got him into a CAT scan as well as wired him up for EEGs. I cannot describe the intensity of the relief when we found out that all of the images and data were essentially normal.
We learned a ton about seizures and epilepsy over the course of the next few days. One of the first things they did when Koan was brought into the NICU with seizures was give him a big dose of Phenobarbital, an anticonvulsive drug. This is a very common medication to give to an epileptic. I was told that it slows down electrical activity in the brain. I was also told that people on this medication lose about 10 IQ points while they are taking it. But, when the drug is stopped, these IQ points return. Dr. Peterson assured us that the seizures Koan was having were not causing brain injury. Koan was initially admitted to the hospital because he was having trouble feeding. The anticonvulsants were not helping.
Koan was sleeping a lot and had no interest in eating. This was really tough. It felt like our new born child was regressing. The first few days at home, he had been alert and awake. He had eaten occasionally. But, now, he was just laying in his open faced crib, not moving, rarely opening his eyes, and he showed no interest in the bottle. I knew it was totally irrational, but I felt like if we could get him out of the NICU and at home, he would make a comeback — everything would be ok. But, they would not let us go until the seizures were controlled (gone) and he was eating independently. So, feeding him became an obsession for me.
If Koan did not accept the bottle within a few minutes of feeding, they would feed him by pushing the formula through a tube in his nose. The first goal was to get him to eat four ounces on his own. Sometimes he would eat two ounces, sometimes one, sometimes none. We would try every two or three hours for all twenty-four hours in the day. The nurses would ofter to feed him, but Jeri and I would almost always do it. So, staying in that tiny room, trying to feed him every couple of hours was pretty tough duty — not a lot of rest. It started to work on my mental state. I began to simultaneously anticipate and dread each feeding opportunity. The name of the game with Koan has always been inconsistency. From a behavioral standpoint, I was falling prey to classic operant conditioning. It was intermittent positive reinforcement. Behaviorists will say that’s most powerful type of reinforcement. Occasionally Koan would eat three ounces, but the next four feedings he would only eat one or two. It was exhausting and I was losing it.
Going into the first weekend, Jeri and I realized we could not lean so heavily on our family and friends to look after Sydney and Tiber. So, we started trading shifts with Koan. We would split into 12-hour shifts. We staggered them so the same person would not pull night duty all the time. But, this also meant that occasionally we would each get a full 24-hour shift, too. This was really the only way to make this work. We lived this way for the next two weeks. It was grueling. The odd thing was that my time away was almost worse than being there. I began to dread going back and that dread would start almost the minute I left. When I was at the NICU there was activity. I need to get up every two hours to try and feed him. I spent time watching him for seizures. It was exhausting in a way that only this type of waiting can be, but at least I was doing something and not thinking or worrying about what might happen. When I was at home, all I did was worry.
One of the other great gifts Koan has helped me understand is that small kindnesses are really important. Sometime during the last week we were there, the NICU staff saw how worn down both Jeri and I were. So, they moved Koan to another room — one with a window and a little natural light. I know that doesn’t sound like much. But, it was huge! We had been basically living in the cave that was his room for two weeks. Getting to see the sun was immensely helpful.
By the start of the third week, Koan was starting to adjust and eat more and more. There was still a lot of disagreement about the number and frequency of his seizures. As a newborn, it was pretty difficult to spot them. They were not dramatic. Up until we left the NICU, I never thought I saw one. In retrospect, seeing what they looked like later, I now realize I probably did see several. Nevertheless, the staff were seeing fewer and fewer. So, in early October, they agreed to release him to go home.
There was no closure for us. We had no idea why this had happened, if it would continue or what to expect. We were told the seizures were not causing brain injury and the only way we would know if there were problems is if Koan began to miss developmental milestones. So, we began to watch and wait. The seizures proved to be really difficult to control, but that’s another story.