Princess

Today marks 1 year to the most heartbreaking moment of our lives. Some say God had plans for you but I say I had plans for you too.

We love you forever, baby. Mamma & Dad

Over the past several months, we've spoken with several people who have gone through the same pain - the loss of a child. All come with a unique and amazing story. And all come with that darkness that will never go away. After all, when a child dies, a large part of their mom and dad dies too.

Meeting "people-like-us" isn't for the reason some people may think. This is not one of those experiences that is made easier with the knowledge that we are not alone. If anything it hurts us even more. We do the only thing we can do, sympathize with each other, acknowledge each other's suffering, and truly empathize with how much pain we are both in. Swapping tales about the insensitiveness of people can bring some light humor to the conversation, but also helps us realize that we aren't really going mad.

Even more positive, we can tell each other about the child that died without fear of making each other uncomfortable. It is a good feeling to share Amelie's short story of life without feeling guilty or embarrassed or even sad. After all, we are her parents. We will always love her as much as a parent loves their living child.

It's a club I don't want to belong to. I want out, but there is no out. I sometimes reminisce about what our lives were like before Amelie's death, even before her life. I was so naive, so stupid, living in a dream world where terrible things happen to other people. I want that life back. And I want her back. Neither is going to happen.

Six months ago today was the happiest day of our lives...

In fifteen days, it will be the anniversary of the worst.

My sweet princess Amelie, I will miss you always. xxx

It's been a while since I wrote a blog, and a lot has been happening...

First and foremost, I have updated the donations page. Many people have donated and I'm hoping that the money goes some way to help prevent what happened to Amelie.

Continuing on that note - a huge thank-you goes to our dear friend Catriona who ran the Dublin mini-marathon to raise money and awareness for CHD. All the proceeds will be donated to the Amelie Dobek Memorial Research Fund. Catriona's determination to run for Amelie touched our hearts in ways that we can't even express. I have no doubt that Amelie appreciated Catriona's efforts as well and is sending Catriona a kiss from wherever she is.



As for Clarissa and I, well we finally bought a house in New Jersey. We're moving in this Friday.

I was happy to see Clarissa smile for the first time in a long time. It didn't last long, but it was there and I saw it. And I felt that maybe we're turning a corner finally. It's too early to tell whether we'll start to enjoy life again, but at least we have the opportunity to try.

Leaving this place has mixed blessings. On the one hand, we have some terrible memories and experiences here. Amelie's nursery is a constant reminder of what we lost. The room is now bare, but I only have to close my eyes to see what it looked like with the crib and changing table and wardrobe and cuddly toys... I vividly remember the days we spent decorating, making it perfect for our new arrival. The location is also an ongoing issue for me. What if we lived somewhere else? Would that hospital have had the equipment on-hand to save our little girl? And finally, the glances from neighbors. They know what happened, and they can't look us in the eye. Sometimes it feels like I'm diseased.

On the other hand, this place is where Amelie was conceived, where she grew for nine months in mommie's belly. It's where she spent the majority of her life, where I cuddled her, where I fed her, where I changed her, bathed her, dressed her. The place where we slept on the couch together.

And fifteen minutes away from here is where she lies today. Part of me wants to take her to a local cemetery in New Jersey, but I know that's not realistic or healthy. It's just that fatherly instinct that wants his daughter to be close, that's all...

I guess I feel like I'm deserting her - like I'm thinking that she's gone and I'm just getting on with my life. I know in my own heart that that is not true. I would sacrifice everything to have her back on this earth - even my own life. I would never desert her. But I will feel so far away from her. Am I running away from the pain?

I guess only time will tell.

One thing that we've done that I know is positive is that we've been around our friends' children. This is something our therapist would be so proud of. And it wasn't so bad. I guess the dread was all in my head (as I suspected). Once I got over the initial shock of "oh my god, this is a child" I was okay. Yes, I was jealous. Yes, I wanted Amelie there so that I could be a proud parent like my friends. And yes, I was scared. But I came away feeling better. I came away thinking about our future. I came away with some new dreams.

And just today I came away with a new realization - I will always be sad for Amelie, I will always wonder "why?". But I also thought that maybe, just maybe it's possible to be sad for Amelie and yet be happy with my other children. Maybe...

Or maybe it's because I read this poem:

A different child,
People notice
There's a special glow around you.

You grow
Surrounded by love,
Never doubting you are wanted;
Only look at the pride and joy
In your mother and father's eyes.

And if sometimes
Between the smiles
There's a trace of tears,
One day
You'll understand.

You'll understand
There was once another child
A different child
Who was in their hopes and dreams.

That child will never outgrow the baby clothes
That child will never keep them up at night
In fact, that child will never be any trouble at all.

Except sometimes, in a silent moment,
When mother and father miss so much
That different child.

May hope and love wrap you warmly
And may you learn the lesson forever
How infinitely precious
How infinitely fragile
Is this life on earth.

One day, as a young man or woman
You may see another mother's tears
Another father's silent grief
Then you, and you alone
Will understand
And offer the greatest comfort.

When all hope seems lost,
You will tell them
With great compassion,
"I know how you feel.
I'm only here
Because my mother tried again."

So this past Thursday was the last session with Doctor Chemtob for a while. It was a weird feeling saying goodbye. It also made me very nervous.

The stress of losing Amelie has caused so much tension between Clarissa and I. We both have so much anger, and unfortunately we take it out on each other. Doctor Chemtob has given us the ability to recognize when this is happening, regulate the feeling, monitor the situation, and ultimately connect with each other again. Without him, Clarissa and I would be well on the way to divorce right now.

We'll be checking back with him in the Fall, but right now we're on our own...

As I've mentioned before, one of the things he is trying to do is get us in a place where we appreciate the good that came from this experience. If you are anything like me, you are wincing at the very thought. How can anything positive come from losing my princess Amelie?

However, upon examination, there are a few things I've realized. I realize I love my wife. I realize that I can love unconditionally (as I love Amelie). I realize that I am willing to sacrifice myself for the people I love.

It really is bizarre, but life's problems do not affect me anymore. In fact, when people complain about things like losing a job, breaking up with a girl/boy friend, not having enough money to pay the rent, the commute, the weather, the price of gas, the price of bread, the economy, offshoring, health insurance costs, crime, Iraq, Iran, terrorism, gun control, lack of gun control, the state of the subway, the potholes in the roads of New York - I just wash these complaints off. Unless you lose a child, you do not know how bad life can be (and you should be thankful of this).

Obviously, if I could choose, I would prefer to experience all these problems and still have my Amelie. But I am not as lucky as most of you. So instead I satisfy myself with the fact that all those problems won't really affect me ever again.

For example - we're buying a house... I heard that buying a house/moving is one of the most stressful things a person will do. Whoever said that is wrong. Buying a house is a piece of cake. If the whole thing fell through, I could care less.

I find it amusing sometimes. I see people pushing and fighting to get on the subway. I see people cursing when someone cuts in front of them to get through the Holland Tunnel. I see people freaking out because a project is going to be late. I see people curse because someone is at the "10 items or less" till and they have ELEVEN items in the trolley. And I see that I used to be one of those people getting upset at this.

I'm not that person anymore. I will let you get on the train and I'll take the next one. I will "let-you-in" despite the fact that you were in the wrong lane. If a project is going to be late I will be okay with that - after all, when did a new trading system save any lives? If someone has a full trolley in the "10 items or less" lane, I will wait those extra four minutes without complaining.

Does this new realization make me happy? Of course not! But I'm making this place a less-shitty place to be in for those around me. And maybe that was Amelie's reason for being - or maybe not. Either way, if I don't learn something from this then I may as well kill myself right now.

But for me, the thing I've learnt most is to not be scared of death - but I'll explain that some other time.

So father's day came and went last week. I think the build up to it was more difficult than the actual day, what with all those Best Buy, Circuit City, Home Depot commercials. I was just in a funk on the day.

I haven't really celebrated father's day in many years. My own father passed away in 1989, so since then it has always been one of those holidays that other people celebrated. But this year it was a bitter reminder of what happened to my baby.

Going to the cemetery helps me though. I can go now without completely breaking down. I just sit and talk to her and tell her that I'm sorry we couldn't have been together longer. Today I left her a little cuddly toy dog. It's just sad that I'll never get to see her smile when she gets a new present from her adoring father.

It's not often that I come across good news, but an article I read about MacKinzie Kline at least offers hope to people with congenital heart defects. MacKinzie took part in her first LPGA tour this weekend. She was allowed to traverse the course in a cart (something that is against PGA rules apparently) because her defect causes her to become fatigued after walking long distances.

She's also a spokesperson for the Children's Heart Foundation where Amelie's Trust is established.

Clarissa was late for our weekly counseling session, and I had the doctor all to myself for thirty minutes. Going in to the session I wanted to mention that I felt at some point we had to stand on our own two feet and that therapy could be addictive (a bad kind of addiction). He took my point well, but then asked me three questions:
- Are we comfortable around children?
- Do we handle stress well?
- Do we have the "bubbles" back in our life?

I'll explain the "bubbles" later, but the answer to all three questions was a resounding "no".

He said that unless we can answer all three questions with a "yes", we needed more counseling. Had he not been doing the work pro bono, I might have questioned his MO. But in fact he his treating us for free. We don't pay him a penny. All he asks is that if he chooses to publish the results of this study, we are okay (as long as he changes our names). And we are totally okay with that.

We both deeply wish that this treatment he is experimenting on us with isn't ever used again. Unfortunately we found out the hard way that this experience can, and will happen again. We can't stop that, but if this treatment in any way helps save a marriage, we'll sign whatever consent forms we need to.

When we first started out, he said that we would need six to eight sessions. We're already on session 12, and he thinks we have a way to go. He used the analogy of a rape victim on a train, stating that the only measure of recovery is when that person can go back on the subway. That person will never be truly comfortable, but the fear has to be faced. And we are still avoiding the fear. And that is okay as far as he is concerned. We have to face it someday, but he's not pushing us. If it takes two years, it takes two years. He admitted that he is learning from us as much as we are learning from him.

So what is our "fear". Well, it comprises two of the three questions he asked. We are afraid of being around children, and we are afraid of enjoying life (the bubbles). The first fear should be obvious to anyone who is in touch with their feelings, so I won't dwell on that one. But the second is more succinct.

Bubbles
The theory here is that life is like champagne. If you open a bottle of champagne and it is flat, then there is no point drinking it. That feels like our life right now - flat. We have great difficulty enjoying life. Doctor Chemtob wants to see us get this "magic" back. He feels that this is our greatest challenge, and we both agree with him. We don't enjoy life.

Most people will then say "have another baby". And that would be the biggest mistake we could make. Having another baby would be the paint over the cracks. We need to fix the cracks first, otherwise we would not be good parents. The whole point (for me) of having a baby is because I love the person I'm with and I want to share my joy by having a child with that person. Right now, we have no joy. Our precious baby girl died.

Until we get the joy of life back, we will not be trying for another baby. There is no point. We're both terrified that:
a) the same thing will happen
b) the same thing won't happen but we're so paranoid we become overbearing parents
c) something else happens and we miss it
d) nothing happens but we're so paranoid we become overbearing parents
e) all of the above

So - until we get the bubbles back, we won't be trying for another child. There is a chance we'll never get the bubbles back... Such is life.

I know there may be some people who think we're just being sorry for ourselves, and that's fine. It's been four months after all. But how many people bought their child a gravestone this weekend?

We bought the most expensive one we could. After all, it's the last thing we'll ever buy for Amelie.

This article was sent to us by Katja.

It seems like another tragic death could so easily have been avoided were it not for incompetent medical staff. I know all people make mistakes, but when you have lives entrusted to you, surely you make an extra effort to be sure...

Chalk up another statistic in the medical journals. And while you're at it, chalk up two more people destined to live out their lives full of pain.

My dear Amelie,

I look at your photos and I am left in disbelief. Why were you not given the chance to enjoy life? Why were you not allowed to experience the magic of childhood? Why were you denied feeling the love of two adoring parents who would have done anything to make you happy? Why was somebody so pure as you made to feel scared, made to feel pain, made to face the abyss? Why were you given the gift of life, and then robbed of it?

In your short life, you went through more than any person I know. I just want you to know that I would do anything to give you a second chance. Anything. It's a powerful emotion to love somebody more than you love yourself, but that is what I feel when I think about you...

All my love,
Daddy
xxx

So obviously today has not been great, especially for Clarissa. We visited the cemetery and although it seemed easier than at Easter, it was still tough. We now have the unenviable task of picking out her tombstone.

There has been no response from the pediatricians since we wrote the letter. I know that they received it because they cashed the $15 check! I really think they could have survived without fifteen dollars, but that probably shows their class (or lack thereof). The positive I take from this is that they are scum and I am not. Simple as that. If you're looking for a Pediatrician in the New York vicinity, you will do well to avoid Kidz Kare.

It is three months to the day since Amelie died. I'm better at controlling my emotions, but the pain is still so raw. I find myself staring at one particular picture of her and suddenly it dawns on me that I will never see her again. It's a horrible feeling to want something soooo badly and to know that you can never have it. What makes this so much more difficult is the fact that we will carry this pain for the rest of our lives. The magic, the innocence, the joy of life, they have all gone. Getting any of that back just seems like a leap too far.

And here is our very personal Catch 22. If we manage to enjoy life, we will be betraying Amelie. If we are loyal to Amelie, we will never be truly happy. Just coming to terms with this is difficult enough, let alone trying to figure it out.

This has taken some time to write, but here is the letter we're sending to the pediatricians who looked after(?) Amelie.
KidzCareLetter.pdf

I still need to write to the Lactation Consultant who told us that the reason Amelie wasn't eating could be because of a speech impediment. After she died she then called to ask me if Clarissa wanted to donate her breast milk...

Today was hard. It was the first holiday since Amelie died.

We went to the cemetery to see her. It's about a fifteen minute drive and we were silent all the way there. When we got to her grave we both broke down. We left her a cuddly toy easter bunny. I miss her terribly.

Holidays and birthdays will never be the same for us. I dread Christmas.

Thank you to everyone who has generously made a donation to the various charities in memory of Amelie. I've created a page with the names of all the donors here.

A lot of the mail we receive isn't too welcome - junk mail offering coupons for diapers being the worst offender. However today did bring a smile as we received a card from the PICU (Pediatric Intensive Care Unit) where Amelie died.

Dear Mr & Mrs Dobek,
   I felt it was the right thing to do, to send you a personal thank you from the PICU staff at Mount Sinai. Your generosity has overwhelmed us.
   Several of your friends and family have sent donations to the PICU and we have ordered a small plaque to hang in memory of Amelie.

To everyone who has donated to wherever on Amelie's behalf, we thank you from the bottom of our hearts!

Before I begin, a special thanks to Paul Berger who asked for donations to Amelie's Memorial Research Fund in lieu of a birthday present. Thanks from Paul, Clarissa, and mostly from Amelie!

And now on to the gritty stuff...

After I finally came to terms with the fact that my weekends would be full of dirty diapers and very little sleep I realized that it would all be worthwhile. While Amelie was still with us, I rushed home on Fridays to spend the entire weekend with her. I take some comfort from the fact that even had I known her time with us was going to be short, I wouldn't have done anything differently. Those lazy Saturday afternoon naps with her in my arms were my favorite time, a time where we started to bond. Now my weekends are empty, and all I can do is think and reflect on what has happened.

One of the things our counsellor is doing is trying to help us see the positives from this experience. At first that may sound cold and heartless, but I see where he's coming from. If I stay dwelling on all the s**t that has happened, I will never begin to "recover". In normal bereavements, he states, this focus on the positive comes naturally (i.e. "Do you remember the time that [insert person] [insert humurous story]"). But the massive shock that accompanies the loss of a child means that this normal "recovery" needs to be focused on, to ensure that it's happening.

I remember when we in the first hospital. Amelie was on a full size bed, and the doctors prodded and poked as they tried to figure out what to do. Clarissa and I were a mess, totally helpless, trying to answer the questions the doctors kept asking us. Amelie was hooked up to so many machines, and I was so scared.

And then I thought that if I was scared, how must Amelie be feeling. Ignoring the doctors, I called out her name. I was behind her, but I saw her react and try to turn her head in my direction. I moved to her side, and then she saw me. I'm not sure if I made her any less scared, but every time I spoke she turned to me and looked me in the eyes. She always heard me over the sounds of the machines and the conversations of the doctors. She wouldn't take her eyes off me! I think she just wanted me to pick her up and take her away from it all. Several times I had to leave the room to fill out one form or another. But everytime I came back and spoke, she turned her head to me. She was always looking for me.

One of my biggest regrets is that I wasn't allowed to be by her bedside in the second hospital for more than a few moments. I think to myself that because I wasn't there and she couldn't hear my voice she just gave up. If I had been there all the time, she would have held on for surgery and made it... No matter what anyone says, I will always have that regret, that "what if...?" Unfortunately the area she was in had several poorly children, and they couldn't let people not in scrubs stay there for longer than a few minutes.

So what positive thought can you possibly get from this you may be asking. Well, for me (and I only got this recently) I realized it was the first moment that I knew that Amelie knew that I was her dad. Me being there was comforting to her, she felt less afraid. The way she always turned her head to where my voice was coming from, despite everything that was going on, showed me that we had truly bonded.