Sunday, March 31, 2013

Happy Easter 2013

Holidays can be such an incredibly emotional and difficult time for families and for people who have lost someone they love and my heart goes out to them at this time.  Holidays can be a time that you don't want to acknowledge when you're grieving, you want to fast forward all the festivities and make it a regular day again.  It's a reminder of what you've lost, and of what you don't have.

I am fully aware that one day, maybe 1 month from now, maybe 5 years from now, I will be grieving the loss of Gabrielle, and we will have to learn how to live a life without her beautiful spirit in our lives.  I  too will cling to any and all photos and videos at holiday time and will cry buckets and will physically ache to hold her in my arms again.

But not now.  Not today.  Even through the exhaustion and daily grind,  I will continue to be grateful that we have her with us on Easter and I will continue to make the most of our days.  I love watching her shred the pieces of paper in her pink Easter basket so oblivious to the fact that there are chocolate eggs and bunnies to be eaten.  I love watching her play with her basket making her funny noises as she concentrates in handling the basket from hand to hand.   I love watching her as she watches her brothers screaming around the house collecting chocolate eggs.  I love how she's developed a defense mechanism for Jonny and will whack him if he gets too close so as to protect her oxygen and her hair (he loves pulling her hair!).

Today, I send strength and love to all the families that are grieving the loss of their son or daughter.  And today, I am going to enjoy my 'little' family and all the wonderful things I am so blessed to have in my life.

Happy Easter everyone!

Thursday, March 28, 2013

Powerchair Football

This past weekend we stayed at Canuck Place for respite. It was an awesome break and we met one of the most fantastic guys ever in John (pic to right) who was also in-house for the holiday. He sat beside James for several hours teaching him how to play Monopoly with all the "big kids" ... I don't think we've seen James that happy in a long time. He was also an incredible role model, offering reasons why the things we were telling him (like eat your veggies, use your manners, etc.) were important.

When my boys grow up I hope they're as kind, considerate, and sociable as John.

He also explained to us that he plays Power Football and (quite nonchalantly) showed us a video of his team being showcased on the Rick Mercer show.

I don't think 6 minutes of TV has ever made me so happy. I thought I would share it here.

Monday, March 11, 2013

Compassion and the True Meaning of Empathy ~ Joan Halifax

While the talk was delivered to a women-only audience, and ends with some women-only points, I think the message applies to everyone. Compassion.

Friday, March 8, 2013

The Schizophrenia of Coping with a Long Goodbye

One week everything seems to be going well,
The next everything's coming undone.

One day you wish for it to be over.
The other you wish it will never end.

One hour you're laughing with the one you don't want to say goodbye to,
The next you're using medical equipment and meds to help them out of a lapse.

One minute your screaming all inside that this isn't fair,
The next you think how lucky you are to have the fortune you do.

One second you're going to run away,
The next you get pangs of anxiety at the thought of being alone.

To be in the moment,
To long for the next.

Multiple realities all bundled up in a life that can only handle one at a time.

The schizophrenia of coping with a long goodbye.

Monday, March 4, 2013

Winter 2013 Images & Reflections

While out one day with James, I bumped into an old friend who mentioned she reads this blog. We caught up as much as we could and she commented, "Good for you guys. It must provide you with so much catharsis. Good for you guys for sticking with it." 

While not meaning to be condescending, it was (like somehow a blog is going to make things better and more manageable), and I gently let her know that "the blog" began as a way to keep everyone in touch, evolved into something more, and more than anything, how we are using it to capture as many moments and revelations as we can because, we know, should we all make it through this in one piece (sans one member, and there really are no guarantees), this whole stage in our lives is going to be a blur.

So here are some moments we captured from the last two months, starting with the picture below of Gabrielle shortly after she turned the corner in the BC Children's ICU, where we really thought only hours before we were going to lose her. 

Amy and I are lucky to have such concerned parents. They came to bat for us in January while we were in the ICU. Below is a picture of my Dad (David) with our youngest son Jonathan in the ICU. 

Jonny needed Mom for food, Mom wanted to be with Gabrielle in the hospital, but with all the germs and such in the hospital, Jonny -- and Amy -- couldn't stay long. Grandma Jane (Amy's Mom) was incredible as she cared and cuddled Jonathan for hours and hours of crying for food, and Papa Wayne played with Jimmy and Mickey.

Poor Amy had to rip herself away from Gabrielle in the hospital early every day because Jonathan needed her at home.

Above is Gabrielle a couple days after the close call, with Mommy and James (who was also dying to see his little sister).

I took James out for a walk "up a mountain" (a big hill) and we laughed the whole way up and the whole way down. It had been almost 6 days since I had seen my son, although it seemed like a year (I was in hospital the whole time), and his health and sense of humour was fantastic ... leaving me light and laughing the rest of the day. 

Gabrielle made it home after a week at the hospital. I took some of my kids for a walk down to the beach (can't remember which kids... there's just so many now) and remembering looking at the sunset above thinking that the time we now have with Gabrielle is extra time ... a blessing ... a bonus.

Here's Amy on the beach with Jonathan. When we see pictures of ourselves (the computer slideshow screensaver makes this a common occurrence) we can't get over how much we've aged the past two years. Not that Amy looks old here (you look great hon), but our hearts have been heavy for so long, the invisible forces of grief (that no one sees) are taking their toll, and sometimes we can't help but feel older than we are, emotionally relating more to people in their 70's and 80's than those in their 30's and 40's.

The wonderful thing about our kids, though, is they do keep us young ... and busy, busy, busy. Jonathan has brought us (aside from the work) a spirit of health and normalcy. Michael keeps us alive and laughing with his energy. James is so wise and funny. And Gabrielle is teaching us all to be better, more patient, and more empathic human beings.

OMG, Gabrielle loved this hamster. She loves dogs too. I took the boys to the dog shelter and almost bought her one ... but Uncle Ben told me some hilarious stories of how much work his dog has been (like he goes to get a pizza and a video, the pizza first, then into the video store, and comes back and the pizza is gone. Having not locked the doors he thinks someone walked by and stole it, but then his dog Chelsea burps and a pizza stench fills the car). Sorry Gabrielle ... we'll just visit dogs.  

Amy and some girlfriends went to Oprah Winfrey when she was in town. The one thing she said that Amy (and I) loved was about how she embraces her age. She doesn't worry about getting older, but chooses to be grateful for every added year she lives out of respect for those who weren't lucky enough to have lived as long.

The picture above is of Gabby watching me, Jimmy, and Mickey playing soccer and baseball at the same time. I would throw grounders for James while trying to play goalie against Michael and every time they either caught the ball or scored a goal they would run over and kiss Gabby.

My sister Danielle came out to visit from Grand Prairie, AB. She loves Gabrielle and has done so much for her and us already. It was nice having a sibling in town, even though her and Amy spent the whole time bossing me around. Kidding. But it was fun trying to get a few words in edge-wise.

Uncle Ben had the idea one night to take all the cousins out skating. Only Jimmy, Mickey, and his son Max made it, but it was fun watching the boys try super hard to impress their uncles (and each other).

The picture above is classic because it shows such a moment in time. Going for a walk on your own with the kids isn't easy. Gabrielle needs a wheelchair. That limits Jonathan to the snuggly. Then the boys need their bikes. So you can't walk to the beach (the hill's too steep) and can only go up the block, left on Cliff Ave, and back again. No one's complaining. Just a reality worth capturing.

Danielle came to James' soccer jamboree.  It was awesome.

Michael dresses up for James' soccer games and practices every week, but can never play. James plays in the 5/6 year old league. Michael is 3. On this day, James only had 3 teammates present, and there's 8 on a team. So the coach told him to grab a pinny and suit up. Within the first 5 minutes he had 3 touches on the ball and decked an opposing player with a stiff shoulder. I think he's fine to play again.

James is in goal and his younger brother Michael fearlessly chases after the ball. 

James scores a lot of goals and works so hard on the field. If you were to ask him what he loves best, though, it's hugging his teammates after they score. Funny how celebrating with others always makes things better.

James, Michael, and cousin Max (Canucks) love playing hockey in the car port against "Uncle Regan and the Edmonton Oilers" ... boooo!  I bring out my iPhone and, with the stop-clock, play them 3 period games. I wish my goalie was as versatile as Max – the Canucks always seem to know where to shoot on my goalie.

The thing about hospital trips with Gabrielle is that it takes almost three times as long for Gabrielle and the family to recover from them. 1 week in the hospital means about 3 weeks before we all start feeling better. Knowing this, and being fortunate enough to be on the Canuck Place Children's Hospice program, we booked time there in mid-February. Below is a picture of Gabrielle in the elevator. She loves the CP elevator as the west window has glass art pictures and names made by several kids and siblings from the program, and it glimmers as you go down in the evening. 

 That week, though, Jonathan was sick and couldn't come (can't really bring germs and flus into a building with such sick kids) so it was just me, Gabrielle, James, and Michael for the first 3 days while Amy stayed back with Jonathan. It was a good break for Amy to be at home with just Jonathan and no nurses, specialists, etc. in the house (like a normal Mom), Gabrielle has reached the age where she loves the nurses, volunteers, and set-up at Canuck Place, and the boys played their faces off.

The food at Canuck Place is definitely my favourite part and I'm good for gaining 7-8 pounds every time we stay. I had 3 bowls of this tomato soup (before the main course), and it was so good that even Michael inhaled a bowl too (not something that happens at home).

And above is a picture of Michael (back row) going on his first outing without Mom or Dad or a close relative. The Canuck Place team facilitated a bowling trip and Michael got the highest score, not only beating James and Nurse Sandy, but two teenage girls, and everyone else who went. Not bad for a three-year old.

Our bi-weekly trips to BC Children's Hospital now mean Jonathan has to come. It's great seeing Gabrielle be a big sister and smile and laugh and fight with her little brother who tags along now for everything. A big part of me wishes we have her long enough for Jonathan to get old enough where he has a few crystal clear memories of his big sister.

Me, Jonny, and Gabby.

Amy and Jonny.

For Jimmy's birthday Amy rented an elementary school's gym and – while they had access to a whole gym's worth of toys and equipment, they played hockey the entire time. He invited some kids from his kindergarten class, his cousins, and brothers and sisters. It was a great time. Above he's lining up to take a shot on net.

Back to wishes, I remember when Gabrielle was born wishing that she'd make it to James' 4th birthday. She did and also fought to be around for his 5th too. And now his 6th. While I'm pretty sure we would not put her through the stem cell transplant with all its chemotherapy and hospital time if we were able to make the choice again, part of me hopes that maybe there have been some positive benefits from it and she'll be around for James' 7th and 8th birthdays too. I guess a father wanting his little girl around as long as possible is a pretty normal one, even if I do have to balance it with expectations of the worst arriving any day.

Above Gabrielle sits with James as they bring out his sparkling, 6-year-old birthday cake.

Amy's Mom, the First Lady of White Rock (get it - she's the mayor's wife), has been a big help during and since the hospital scare in January, giving us moments of sanity as she knows enough now that she can care for Gabrielle without a nurse around, or take all three of our boys for a couple hours. 

And above is a pic of my Mom (Doreen) with Gabrielle. Although she's never told me, I know there are many days she wishes she could fold over the map between White Rock and Edmonton and shorten the drive from 1100km's to 1.1km. Just like with Grandma Jane, Gabrielle's whole being lights up with screams of delight when she sees Grandma Do.