A Father/Son Connection That No Father/Son Wants To Have

Ezra and I share something that totally sucks to share: we have both lost our younger brother.

It’s a cold, hard fact that I have known since Liam died, but it’s been – oddly enough – not that obvious to me until yesterday. I suppose it’s most likely because Ezra is so young, or it’s because we just haven’t talked about Jonathan that much with him (that has been somewhat unintentional, but life is hard for him to understand right now without the complication of understanding what happened to Jonathan).

Yesterday was Jonathan’s 33rd birthday. He died prior to turning 21, so every year since then, I make some time and go and buy him a drink. It makes for a somewhat awkward conversation with the waiter/waitress because they don’t want to serve me two drinks right away, but we get through it, and I get him a beer. It sits there untouched while I down mine, and I walk away from the table every time wishing that he were there to finish the drink with me. Sometimes I have done this ritual with friends, and sometimes it’s been with family, but yesterday I wanted to go by myself. So, I gathered my things and told Ezra that I would see him after his nap…and then came the question that I wasn’t prepared for: “Where are you going?”

The question in and of itself sounds innocent and simple enough. But I know Ezra, and he had inquisitiveness to solve. My reply was a lame attempt at a non-full-truth, but he pressed on. Soon enough, we arrived at the part of the conversation that I could see coming for miles: “Who is Jonathan?” “Jonathan is my brother, and today is his birthday, so I am going to go and buy him a drink.” “When are we going to go to his house to have a party?” “Jonathan died a long time ago.” “His heart stopped working too?” “Yup, just like Liam’s.” “Oh, ok.” and even though he was verbally matter of fact about it, during the conversation, his mind was spinning trying to comprehend what he was being told. I can’t tell you how sickened I was to have to tell him this news (although he’s heard it before) when he can now somewhat understand what it means. I was on the edge of tears as I realized that we have this terrible thing in common….and that now he gets it.

At least the beer was good.

Editing Ezra

This is about words, and how our family’s realities collide with other non-suspecting people’s conversations.

We’ve spoken about it here before…about how difficult/weird/awkward it can be to talk with people about Liam. Especially people that we don’t know, or ones that we run into on a very casual basis (friendly faces at the gym, barber, etc). Ahna and I have gone from not even mentioning Liam in fear of ruining an otherwise superficial conversation to now being honest and straightforward when someone asks. Why should we hide or not include Liam’s life, even in these simple talks? The paraphrased exchange: do you have any children? yes, two. How old are they? our oldest son is almost four, and our youngest passed away when he was seven weeks old. Oh, I am so sorry. …and now we enter the awkwardness.

But the thing about this is that the question/answer is between two adults. We choose to ask the question because it’s the normal thing that you do. We choose to answer the way that we do because it’s important for us to talk about Liam, and to acknowledge publicly that this is our normal. We are (generally speaking) no longer afraid of where it goes.

Enter Ezra. Since day one, we have been honest, straightforward, and upfront with him about Liam. We have included him in our conversations, in our visits to the cemetery, and in our sadness. We talk about Liam all of the time, and so does Ezra. He understands. But his understanding is constantly evolving. We worried about how Ezra was going to react to Liam’s death, and how he would continue to deal with it over time. We listened and read about how this would be an on-going, never ending dialogue between us, and that he would have different reactions at different times in his growth.

For now, he knows what he knows. Ezra talks about Liam a lot, says hi to him when we pass by the cemetery, and will say that his brother is Liam. Sometimes he makes jokes using Liam’s name, we nervously laugh them off and direct him to a better punch line, but inside we are very happy that Liam is a part of his normal – even in loss. And its this comfort that he exhibits that finds us in bizarre places.

Last week we were in the waiting room at the pediatrician’s office, and Ezra was making nice with a young lady about his age. She started talking about her brother/sister (I can’t remember), and Ezra – plain as day – said “I have a brother. His name is Liam and he died.” The girl didn’t react – it probably went right over her head. The girl’s Mom turned and started to look at Ezra out of uneasiness, and I immediately blurted out “Ezra, that’s true, but we don’t need to tell everyone that.” Then the clarification questions came from the Mom and the surrounding parents, followed by the explanation, followed by the sympathy, followed by the awkwardness.

The part that didn’t sit right with me wasn’t what Ezra did, or what the girl didn’t do, or what the other parents did….it was my reaction. This is Ezra’s life, why should we be suppressing it when he tells other people about it? He didn’t lie, exaggerate, or make anything up – he told the cold, hard truth – in a 3.5 year old, stripped down kind of way. Now, I could certainly understand being a parent and having your child exposed to a topic of life that you weren’t prepared to expose them to yet. I know how that would be concerning, but I’m on the other end of the line on this one. Ezra’s not breaking news to them about guns, violence, sex, politics, hate, love, or money….he’s breaking news about his life. The coping of a 3.5 year old dealing with a loss of his brother – and I think I’m fine with that.

We continue to realize boundaries that have been destroyed for us still stand for others, and Ezra is running head first into walls of them everywhere. We are amazed at how much we learn from him learning. Maybe some parents will be disturbed if they hear Ezra talk about Liam. Maybe some will ignore it, maybe some will open a conversation with their child, and maybe some will understand completely due to their own experience. I don’t know. But at the risk of allowing Ezra to talk about Liam in a positive and productive way, I’ll take the gamble.

A Year Later…

These past couple of months have been difficult, and with that sadness and disbelief came a basic non-need to write anything down. I kind of regret that at this point, but the truth of the matter is that I would have just written post after post about how much it sucks. And I’m not sure that you need to read that, and I’m certainly unsure if I need to document that.

It’s been very strange to be a year later. To be living life without Liam, and to be thinking about each day what was happening for him a year ago. One time I flipped back into the blog and read the entry from 365 days prior, but it didn’t do me much good other than induce a good belly cry. There would be days that Ahna and I would look at each other and think about being in the hospital last year. We would think about holding Liam, spending time with him, and worrying about him. We would think about the things that the doctors told us…..and we would forget those things because it is very hard, we are finding, to remember all of the internal struggles that Liam had. He looked like such a perfect kid from the outside, and it continues to be hard to remember – on a daily basis – all that was happening inside of him.

We cried a lot over the past week. There were many times that life just didn’t seem to make much sense. Times that it was a lot easier, and perhaps necessary, to slip into a place of depressing sadness. It didn’t just come on the anniversary day; indeed it came most intensely throughout the week. Liam died on February 18, but it was the Thursday night into Friday morning when we last spent time with him…and all of those time periods rose sharply with emotion. Several times each of us were sick to our stomachs.

We also thought a lot about the Doctors and Nurses at Children’s that cared for Liam. They spent two months of their lives with us, just as we did with them, and because of that we remember what amazing things they did for Liam and for Ahna and I. We also recognize that as their time with us ended, their time with someone else began – and they do that over and over and over. How they are such strong, caring, amazing people…I will never understand.

Last year at this time, we couldn’t have predicted how hard this would be. There are many mornings that I wake up and I don’t feel good about what has happened. I wish I could tell you that an overwhelming peace has settled in, but it hasn’t. Sometime last spring I wrote about how despite your intents, life just props you up. Still true.

A year later we have some things to celebrate, including good things at my work, good things at Ahna’s work, and a most amazing Ezra.

But it would be so much better with Liam to share it with.

The Power Of Light

A few months ago, Ahna and Ezra were at a local store looking for a candle holder that we could use throughout the holidays in memory of Liam. Ezra picked out one that he like a lot, and that he thought Liam would like…..turns out that I’m not sure that there could possibly be a more perfect selection.

For dinners and gatherings surrounding the holidays, we would set out (or bring with) the star shaped candle holder and light it – especially during the meal time. It was a nice way to recognize Liam, and it was a way that we could do that while having something that is obvious and present, but not cumbersome. As the holidays came and went, we really felt that this was becoming a well intentioned and impactful part of our lives. For any of us, if we just want to feel like Liam is around, we can light the candle. If we just want to stop and think for a minute, we can light the candle. Needless to say, the candle burns a lot.

We know that ‘he is always with us’ – whatever that exactly means – but there is just something about a star…and a bright burning light…

Happy Birthday, Liam!

Strange times we live in. Hard days we happen upon. It’s been a year, already, since Liam was born…and it sucks that we weren’t busily planning a birthday party.

Liam came into our lives in person on December 19, 2010 at 0042, weighing in at 8 pounds and 10 ounces. He measured 21.25″ long and arrived in a flurry. That night began a time together that was entirely too short.

We did our part in celebrating his birthday as best we thought. The whole week surrounding the actual day was harder and more surreal than either of us had planned for. We brought Liam flowers and a holiday decoration or two, and enjoyed a nice slice of cake quietly in the evening. We were surrounded by lots of love, and tried to stay on the upbeat side of the equation, although that didn’t always happen. In the morning, we took the opportunity to go up to Children’s Hospital and visit the NICU. Only one of his primaries was on at that moment, although we did see several other folks that we remembered. We brought them a bunch of goodies, as an edible way of letting them know how much we appreciate them and how thankful we are for all of them. There was comfort had in having a purpose to bake, and a direction to say thanks.

There is no combination of words that could ever begin to describe how much we miss Liam, or how much we love him. But we do.

Thank you for all of your love and support over this past year. It has meant a lot to us to know that we are hugged – both in person and electronically – and it has helped us in times that we needed it.

Below is a slideshow of photos of Liam (it’s okay to have some tears if you watch it, we do….but a smile or two of remembrance later is nice too).

Week 3: Kubler-Ross Is Full Of Crap

Ok, that’s not entirely true. Kubler-Ross did a lot of great things for the understanding of grief, for example, making it part of the conversation in a way that was understandable to most people. For those of you who don’t know who Kubler-Ross is, a quick introduction: she was a psychiatrist, who in 1969, published a book based on the interviews of hundreds of people titled “On Death And Dying.” See, grief has only been a talked-about part of human psyche for a few decades, and this is largely – if not solely – due to the work of Kubler-Ross. In the book, she introduces the idea of the Stages of Grief (see chart below), and uses them as a way to understand what emotional cycle people experience when they suffer a loss. There is a lot of really good information in what she brings forth, but where she went terribly wrong, was making the stages of grief a linear concept. Even the idea that someone might slip back into the previous stage momentarily prior to moving forward, is a misconception. But it’s what we know. It’s what we understand. It’s easy to understand….unfortunately, grief and emotion are none of those things – there is nothing linear about us.

The week three meeting of the Parent’s Group centered on learning about the grief process. It was the first meeting where we actually started to move in a direction of understanding, instead of the necessary but difficult introductions. Now, let it be known that the meetings are not a lecture or educational platform. Each one has an agenda and direction, but the conversation often moves in different directions depending on the needs of the group on any particular night. And just because the first two weeks are behind us, it doesn’t mean that so are the emotionally challenging moments – for those happen all throughout each and every meeting.

Also, the third week offered Ahna and I something very special: a chance to reunite for the first time since leaving the hospital with someone that was absolutely instrumental to us while we were there. Vanessa is a Chaplain in the hospital, and while we were very fortunate to receive the help and services of that entire department, Vanessa is one person that we connected with the most….one of many extraordinary people that walked with us. Vanessa was our ‘guest facilitator’ for the third week’s meeting, and it was an absolute pleasure to reconnect with her.

During the meeting, we were introduced to something that is an alternate understanding of the stages of grief called the Grief Wheel (see below). The simple design – the idea that it’s never ending, that it’s an alternate trajectory, that there are built-in understandings of slippage between all of the places, and that there is a before and after that are different – really connected with me in a way that the traditional models never have. I would make one modification to the drawing, and instead of it being two-dimensional, I would make it look more like a spiral where the ‘before loss’ and ‘after loss’ parts of life never intersect.

When we look at this, we recognize that there really isn’t a stage to this process. While we would probably associate pretty strongly with one particular part of this wheel, I would also offer that at any given moment on any given day, you could find us in any part of this circle. And even though we may generally be in one area, there are feelings/emotions/descriptions from each other part that we also deal with on a daily basis. I think that we are finding that as time is moving forward, with or without our permission, there are actually aspects of grieving that become harder and more influential. The holidays are upon us (group week seven discussion), and Liam’s birthday is only a few weeks away. I wouldn’t be surprised if this wheel starts spinning a lot faster in the near future.

Parent’s Support Group – A Return To The Hospital

Sometimes the biggest challenges are the smallest mountains. Or the smallest mountains are the biggest challenges. I don’t know which way sounds better, but you get the point.

A few months ago, we received an invitation from Children’s Hospital to a support group for parents who have lost children (if I’ve said it a hundred times before, it still pertains: it absolutely sucks to be part of a club like this). The group was open for parents only – no friends, grandparents, siblings, other family, etc – and was going to run for nine consecutive weeks in the mid-fall (ie: now). While there was some initial trepidation, there really wasn’t any true apprehension, as both of us have been seeking ways to help deal with the grief and the range of emotions from this past year. Us, along with seven other couples/individuals responded, and the group was set. Start date, end date, time, child care…set.

But between us and the start of the group, there was a gigantic emotional monster that had to be confronted: the return to the hospital. See, the group would meet in the hospital, near the cafeteria that we ate at for nearly every meal of our two months there. It would be our first time back to that general area, the first time on that road, and the first time in the building since we left without Liam. I think that Ahna was a lot more realistic as to the difficulty that the first meeting would be, and I told myself that it wasn’t going to be that bad. When in fact, as the first meeting date drew closer, the reality was beginning to set in. The best way that I can try to describe the feeling is through a recipe: take that nervous pit in your stomach feeling that you get when you go in for a job interview (or anything super important), then add 10 tons of emotion.

As we drove up to the hospital, the roadway rang of extreme familiarity. As the miles to go got smaller, the nervousness and anxiety grew. Off the exit, the car got quiet and my hands began to shake from energy without a focus. We pulled into the driveway to the hospital, then into the same parking garage that we did so many times before. It’s crazy how familiar you can become with a concrete building designed to temporarily house cars. Ezra was with us on that first night back, and it’s moments like this where it’s good to have him around….on the drive to the hospital, he asked a lot about where we were going and for what reason. He refers to the hospital as ‘Liam’s Hospital’ and once there, his comfort level with the building was the key to having to find a way through all of our adult feelings. I think that had he not been with us, we might have just stood just beyond the front doors for a while and found it more difficult to actually go inside. Once we got into the main foyer area, and then in the cafeteria, it was nearly overwhelming. Memories came flooding back. Hundreds of them in a single pass of the main entryway. Then, we had to chase Ezra.

After we got Ezra tucked into the child play area, we had our first meeting as a group. They explained that the first two weeks were going to be extremely difficult, and that we should really hang on until the third week before we started to feel any true forward learning momentum. They were right. The first two meeting were basically comprised of learning about each other and each other’s child. For some reason, I envisioned that it would be a group made up of people that all lost children of similar-ish age to Liam. I don’t have a clue as to where I got that impression, but it was far from the truth (for the privacy of those in the group, this is about as much detail as I will share about everyone). The causes of death and the age ranges of the kids are equally as vast, and there is really only one other couple in the group that has had a similar experience to us. It has been interesting however, that it doesn’t matter if they were two months old or 23 years old, there is a lot of commonality in the difficulties that we face now. We learned about lives short and shorter, about stories of relatively sudden loss and ‘expected’ loss, and about how together – and seperate – people are attempting to deal with the new realities. It’s some heavy shit.

We left the first two meetings with very sad hearts. We tried hard not to add to our loss by internalizing the loss of others, but you can’t entirely help it. The group has forced us to reengage some of the emotions that have been suppressed or passed due to the rest of life – both a good thing and a very difficult thing. The sadness felt after the first two meetings lasted for days. The second trip back to the hospital wasn’t nearly as charged as the first one, although the meeting was. Perhaps that’s some sort of metaphor for our current process. Or perhaps it’s just a matter of having to get to a meeting.

The Bills Stop Rolling In

Seven months after Liam received his last medical treatment from the hospital, we have finally gotten the money monkey off of our backs. Countless hours on the phone, on e-mail, bringing paperwork different places, waiting, redirecting, frustration, angst, apathy, and work on our behalf by others have at last gotten us to this point. I verified the final bills show a zero balance this morning…and I don’t know how it’s possible that we still have two cars and a house without health insurance and Medicaid.

As with each small step of finality – even ones that we hope for – there is that furthering of space and touch that comes with them. It’s an interesting paradoxical relationship sometimes. This freedom does allow us to proceed with two very important items still on the ‘to-do’ list….a gravestone, and a donation to the hospital on Liam’s behalf.  Two very difficult things that we have postponed until we knew for certain that we were clear of the bills. One hard door closes, and a new one opens.

Denver 9/11 Memorial Stair Climb [UPDATED]

Well, the climb is done. 10 days have gone by with no planning or daily mention of things to get done for an upcoming climb, and a chance has been given to reflect on what I have been part of. First, the Denver climb….then a little more than that.

Each year – seven of them now – there seems to be this massive workload of event planning and organizing that takes place in the immediate run-up to the climb. A pile of logistics, information, and organization all culminate in the hours prior to the climb actually happening. There are times in those days that it gets to the point that I actually look forward to the time period that comes just after the climb is done where there is nothing to do but wait to start it all over again. But then the morning of the 11th comes around, and the firefighters filter into the loading dock, and the tribute begins….and it’s all immediately worth while. I have the unique opportunity to help organize the climb with a few other folks, including Dave, Scott, Sean, and Mark; and it has to be one of the most rewarding things that happen each year.

For those new to the blog this past year, the climb is the first of it’s kind in the country, and we gather 343 firefighters – in full gear – and climb 110 floors each September 11 in honor of the 343 FDNY members that died (the 110 stories is the same height as the World Trade Center stood). We do it in a 55 story building located in downtown Denver, and we climb it twice. Each climber is randomly given a photo of one of the 343 firefighters, and they climb in that firefighter’s memory. We ask that they in turn reach out to the family of that firefighter and let them know that we haven’t forgotten. You can hear a little more about it from a Colorado Public Radio news story, my wrap on 2010 and 2009. This year’s event filled up in 66 minutes.

Since I am involved in the planning and execution of the event, several of us that help out actually climb early that morning. We get down there long before sunrise, and start our rigorous 110 story climb just after 6am. There are lots of moments void from talking, but hardly silent. It takes more than an hour to do, and is one of the hardest physical challenges that I face each year…..and we don’t have a burning building above us or people being shuffled down the stairwell past us. By the time that we finish our climb, the 343 participants are starting to arrive and the rest of the day’s events swing into high gear. During the event, I serve in the position of Lobby Control – an accountability spot – and have a great chance to be able to speak to each climber several times.

The most rewarding part of the entire experience is the stories that we hear from families of FDNY members, or from participants who have reached out to families and made connections. To know that the families know that people don’t forget, and to know that firefighters from all over (this year 9 different states were at the climb) are constantly remembering, is what it is all about.

To the part that was referred to as ‘a little more than that’ at the beginning of the post. A long story short, last year we partnered up with the National Fallen Firefighters Foundation to develop a program that would allow individual cities across the country host a climb similar to the one that we have going on here. The money that is raised from that effort goes towards the Foundation and their efforts to support the FDNY members and families that are now dealing with the 9/11 related sicknesses, diseases, and cancers. I am able to work with a few amazing people from around the country – Victor, Billy, Jenni, Josh, Shawn, Scott, and Brian – and I feel like this is going to be a long-term tradition. And this year? More than 55 different climbs, happening in 4 different countries, with about 15,000 firefighters climbing with the same purpose. In the coming weeks, we should know the full impact of the event, and I know that it’s huge…..It’s awesome to have that many firefighters (and in a few climbs, civilians) training, getting in better shape, honoring, remembering, and supporting.

[UPDATE] For some reason, I forgot to include this – even the best forget things sometimes. A great friend, fellow organizer, and District Chief up in Denver not only climbed for his late FDNY friend, but also with Liam. He asked for a photo, put it in his helmet, and carried Liam the full 110 stories. I actually got choked up at the thought, and again (this seems to be happening on a extremely frequent basis) was humbled by friendship and love. Photo is below.

Here are some photos from this year’s climb….

Time Travel, But Not Touch Travel

You can mention a word, even one that seemingly would have nothing to do with Liam’s life, and I can be instantly transported back to a specific moment, a specific place, a specific interaction, a specific feeling. You wanna talk pulse oximetry? Bam, right back to room 55. You wanna talk humidity? Bam, right back to the shared showers. You wanna talk photography? Bam, right back to looking at Liam through the camera’s lens.

The emotion that comes with that trip back in time is still so raw and unyielding, that it becomes all-consuming at times. If I were to close my eyes, it would be just like we were sitting in the room. And despite the vividness of those experiences, the one thing that doesn’t happen? Remembering what it was like to hold Liam. It’s depressing, confusing, and saddening to think that as each day goes by, it becomes harder and harder to feel that feeling. I wish that there was a way to understand why that was, but I don’t think that we can know that kind of answer.

While sitting in the hospital room, I remember reading something that was given to us. It was about a similar situation to the one that we were in, and the parent wrote: ‘It doesn’t matter how much you hold him, it will never be enough.’ What I failed to understand about that statement was that no matter how much I held him, that would be the hardest thing to feel again.

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