Tuesday, September 8, 2009

Monday, September 7th

This morning, Tara and I wake up together, Tara crawls into the big bed to snuggle and says she had a good sleep – She couldn’t remember her dreams but she felt that Daddy was there. That’s how I felt too – a comfortable warmth – knowing you are close and your thoughts mingle with ours in the dream world.

We talk about how we are going to kiss Daddy – with the tube in place you can’t get to your lips and your cheeks are covered with gear to hold the endotracheal tube in place. “Nose nuzzle” she says.

We started ‘nose nuzzles’ with the kids when they were young - it’s really just rubbing noses but the phrase – ‘nose nuzzle’ – made it seem more fun because of the way the phrase rolled off your tongue.

Tara asks if it’s school today – “No, it’s Labour Day – no school today”. Tara is disappointed – she says she loves school - she does love school, but I suspect she is also craving her ‘normal life’.

Quinn stretches and wakes up, he said he was having a good dream – but won’t tell me about it – then he jingled the chain around my neck.

On that terrible night – just one week ago, exactly, we were as emotional low as we could go. The EMT’s had taken your chain off with the St Christopher’s medal and the golden 29.

The chain you had brought when we were in Ireland – from a shop in County Kerry – I think. I gave you the St Christopher medal in our first year together. I had ‘I love the Crashman’ inscribed on the back – the Saint for athletics and travel. You bought the golden 29.

That dark night, Tara, Quinn and I took turns wearing it. Tara noted that Daddy’s chain made a jingle sound - It is a familiar sound - it felt good to us all. We talked about the movie “It’s a Wonderful Life” where it was said that when a bell rang – an angel was getting wings.

We decided that the one who wore the chain was to be in charge of dishing out hugs. If one of us was feeling really especially sad – we were to seek out the chain wearer and get a hug. That system worked well when we had NO HOPE. But once we got word that surgery could bring you back to us – I retrieved your chain from Quinn, who happened to be wearing it at the time, and put it on me. I didn’t want to have to explain to you that your chain got lost or broken while you were fighting for your life.

This morning, Quinn lay in bed beside me, looking a little annoyed and sad. He reached up and jingled the chain … he wanted a hug.

Quinn is a sensitive soul - much more than Tara. When he feels sad – he withdraws and is quiet - when Tara is sad she is loud and demanding. Two children - with the same parents – but two very different ways of expressing themselves.

Quinn’s nature to withdraw when he is sad, has been a source of frustration for me ever since he could talk. I was used to Tara – who I understood – because we are very similar. Quinn, I think, is more like you. You understand his feelings. You came up with a beautiful plan for Quinn to express his feelings in a special way – “when you feel sad, Quinn, and don’t want to talk about it but want someone to know you are sad – then just go up to that person and gently tug on the ear lobe – and then we’ll know how you feel”, you explained to him. We started this system about 6 months ago – and it has worked really well.

You understand Quinn and his feelings – I understand Tara … sometimes.

This week, the chain has had some additions. Janice put on a cross – “ I think it’s been blessed by a priest – so it should help” she said. Yesterday, your fingers were starting to swell, the nurse worked to rings loose and I put them on the chain. Now, your chain doesn’t jingle, it rattles

Neeson is our only ‘sickie’ in the house still. He actually got bored in your room! I know that is hard to believe – but it’s true. He has been faithfully using the hand sanitizer you had by the computer.

I got a call from the Daily News – they had heard about the Walk for Hope event and they wanted your story and to report it – at first I thought – no – you may not like it – than I thought about how incredible your story is. It could inspire others to keep hope with their loved ones. A story would also be a way to thank all your supporters. Lastly, the creepy thought came to my mind – If you had not donated your organs, would you have been sent to Halifax to await brain death? I expect that the same sequence of events would have unfolded – but what if they did not?

Jason, young man in his late twenties – early thirties, came to the door. Annie, greeted him like an old friend. (That’s strange - this past week Annie has alerted us to every visitor with a loud warning bark – she is feeling the heightened emotion in the home.) We sit down and I tell him how the story unfolded. He takes notes and several times he says he has goosebumps. We take him down stairs and show him your Boston Marathon corner with pictures and medals on the wall.

The topic of 29 comes up – Because I said that we have dubbed your recovery – the Chris’ Addiction to Life Marathon (I emphasized that it had to have 29 characters – which it does if you count the ‘). I tell him that your favorite boyhood hero was Rod Carew – and before I could tell him who Rod Carew is – He said – “oh yes – # 29 of the Twins and then California with lifetime hits of 3053! “

WOW – now I know I made the right decision to share your story.

I go to the hospital – this is the first visit by myself – I want to go by myself – I crave a little of alone time with you. The drive is good – my head is clear. Thoughts going past my mind like the dashes on the highway – I get a pen out and write down the random thoughts – two of the thoughts are:
1. Look into getting cruise control because I tend to go too fast (Karen, a friend whose husband had a similar catastrophic bleed 18 months ago … and is recovering !!! – she said she got 2 speeding tickets while commuting to Halifax.)
2. Get a cheap voice activated recorder – so I’m not trying to write and drive at the same time.

You look good – Lindsey, the new nurse, is pleased with the new approach to blood pressure control – staggering your hypertension drugs. Your cough is annoying you but you aren’t getting much sputum up – even with suction through the tube. Lindsey feels the tube is bothering you, A resident gets me to sign a consent for a tracheotomy. It’s a short procedure and will likely be done tomorrow – and you will be a lot more comfortable. The ventilator will be attached to the tracheotomy tube and only the feeding tube will be in your mouth.

Your level of consciousness is coming up. Your right hand is constantly searching to be held – we hold hands – like we were a new couple – playing with each other’s fingers. Your hand is warm and comfortable. For the first time, I fall asleep at the hospital. I lay my head on the side of your bed and you pat my head and play with my hair like I’m a dog – At any other time, I would find this quite annoying – but now - I find comfort – I can sleep.

Lindsey, the nurse for today, reveals she is pregnant and due in March! Their first child. I reflected on the memories I have when we first got pregnant. How excited we were. How you told Juanita with an inserted paper in the fortune cookie when we invited her over for Chinese food. How the older Gillis girls put on a play, directed by you to tell their parents. How you bought me a Brita water filter because you didn’t think I drank enough. The wonderful surprise baby shower the ladies at the church had for you … so many great thoughts. Then, there was pregnancy for Quinn, when we went to the IWK for a fetal assessment that involved an ultrasound. You wanted to know the sex of the baby. I didn’t - we choose not to know with Tara and were happy with the surprise. I wanted the same feeling of surprise. The doctor took you to an adjoining room for a few minutes. You were smiling when you came back to me. As we walked back to the car, I said that now it bothered me that you knew and I didn’t. Upon hearing this remark, you stop and pull out your wallet and said “The doctor didn’t actually tell me, he wrote it down on a piece of paper and handed it to me - I didn’t look at it – I just put it in my pocket.” You pull out your wallet and said “Oh no – I must have dropped it!” Despite my protests, you persisted. I had to accept what you said. During the pregnancy – you would ‘slip’ with a ‘he’ when referring to the baby, but then you made sure to ‘slip’ the other way with ‘she’ just as much – I definitely didn’t know and thought you didn’t either. I should have guessed when you said you could live my girl’s name choice – ‘Bridget’, as long as I could live with ‘Quinn Carew’.

As the pregnancy progressed and I could feel the baby move in me – I realized that if you did know – then I was glad because feeling the baby move gives the mother a special connection to the baby for the Mum that the Dad can’t appreciated. Knowing the sex gives the Father a special connection that the Mother doesn’t have.

As I left the ICU, I said good bye and gave your hand a squeeze, because with all the medical gear around you - that’s the closest I could get. Just as I was packing up my bag, you passed some wind (as you mother would say – you, the kids and I are less polite – fart). You would always lay blame on the nearest person to you. Failing that you felt that if you created a diversion – no one would know about it. The classic diversion would be for you to stretch your two arms across your chest as if you were going to release an arrow from a bow. The actions would be perfectly timed with the noise. Will you be able to use this technique again?

On the way home, I spotted some runners. Whenever we drove together, you would always point out runners practicing their passion by the side of the road. It’s as if there was a secret brotherhood of runners and acknowledging their presence was part of the code. There were three runners, a father and 2 children – was this a sign for recovery?

Once I got home, I decided that if we were going to use your’ Honda regularly, then I should clean it out. There was some hardwood in the back that was given to you. You told me about it 2 weeks ago and were pleased that you would have some nice wood to use in the wood working shop we built last year. You love building things – unique, fantastical things – like the marble tower that is such a big hit when you volunteers at the school.

In the car, I found his beat up old backpack – it was full of old receipts, bank slips, lottery tickets, breath freshener wrappers, the children’s saving account books and old pay stubs – this is his filing system. I also found the Christmas lists for the children from last year.

So much has happened in a week – it all seems like a dream…it seems like a year has pasted. Will you be home for Christmas this year?


  1. Gwen,

    I do not know you, nor your husband, but I felt my heart break for you and your family reading this. What lovely children you must have, and so sweet the use of your husband's chain as a connection to hold you all together. What a lovely idea - I'm sure even were the chain damaged, he'd be happy to know it served a greater purpose in helping you all get through this tough time.

    Continuing to pray for Chris... and sending thoughts out for you and your children as well. If ever you need anything, I am from the area, and would be happy to help in any way I can.

    Be strong, and keep hope in your heart. Many wishes for a strong and thorough recovery for Chris...

    D. Mosher (Truro)

  2. Dear Cahsen Family,

    I have known Chris through the Church for years and more recently through the running community. He and your entire family are in our thoughts and prayers.

  3. Hi Gwen,

    I know you, but have not yet met your husband Chris. I have read your blog with tears in my eyes and a smile on my lips. What a wonderful life you have with Chris and your children! And what a great writer you are!! My thoughts and prayers are with you and yours.
    Sincerely, Kim (mother of Thor & Apollo)

  4. Hi Gwen,

    I have been following your story very closely, I am Jason Malloy's girlfriend. When he told me about this story after interviewing you I was so in awe at your strength. You could not have had a better person to tell your family's story. We both sit at the computer each night to read your blog and we tell the story to whoever will listen. Just an interesting aside... it must be fate, because Jason is 29 years old.
    I wish you all the best.