Laughter #8 ~ Sleep & Bloopers

The past 3 weeks have not been rich with sleep, but I'm not complaining. That's parenthood. I have noticed, however, that how often I laugh is totally linked to how rested I am. Sure there's the giddiness of being overtired, but successive days of that usually doesn't bode well for merry cheer.

Today I woke up bagged, but after the good fortune of having a nap, I woke up to my 2 year old practicing his elbow drops on my chest. Then we watched YouTube firetruck videos, and then started laughing at old game show bloopers (I was laughing, and he was laughing at me laughing).

It was awesome.

I can't figure out what the woman at the end says (re. location) ... FB if you know. Here's another one:

Dear Elena, Thank You

Last January, only weeks before Gabrielle's stem-cell transplant, we knew we needed help and we decided to hire an au pair to be with the boys as Regan and I took turns being at home and staying with Gabrielle at the hospital.

We hired Elena Weaver, from Derby, England.

Elena. World traveller. Adventurer. Music lover. Friend across the globe.  The Ross Family's new au pair.

= = =   

Dear Elena, 

I think our farewell card to you summed up just how much your time here meant to us. To our family. How it allowed our boys to live a life at home, playing instead of driving back and forth to/from the hospital for 3 hours every day.  

I think we told you how you allowed us to stay sane. You being you allowed us to rest and catch our breath at least a few times a week. We trusted you like we would trust a family member. We never worried about our boys when you had them on your own. Every day. You don't know how much that helped. How much it saved us.  

I don't think we told you, though, how much we loved having you in our house. We loved knowing you went downstairs every night well-fed. We loved knowing you were out meeting friends. We loved knowing you were just in the house. You became a huge part of our family. You are family.   

It's been a week since you've left. We love your Facebook status updates and we (OMG) still hope to live vicariously through you and all your adventures (keep us in the loop!).   

But the house feels empty. A family member has left. The one person who had endless and unwavering patience for all of us (especially our boys) through transplant and the recovery months is gone. You were the keel that prevented us from capsizing.

Thank you,   

Elena,  

Thank you.  

= = = 

Elena Weaver, from Derby, England, went home after spending 9 months with us in our home. When she arrived, we thought she was a cute 20-something gal with a wonderful accent and great personality. When she left, we realized she's got enough love and talent and personality to move mountains. 

As J.R.R. Tolkein wrote, "There's more about you than maybe even you know." 

And as just everything comes and goes in this world and all our lives, all of us – despite how sad we've been to see you leave – are so incredibly grateful that you came into our lives.

Elena.  Family Saver. Lover of children and weekend nights.  Embodiment of patience. Artist. Elena.

Gabrielle's 1st Birthday

The sun was shinning bright for Gabrielle on her 1st birthday.  We woke up at Canuck Place to balloons and happy birthday signs throughout the house as well as birthday cake after lunch. There was something so magical and beautiful as I listened to 20 people or so, alongside James and Michael, singing happy birthday to my Gabrielle.  I was so choked up as I was flooded with a year's full of memories and emotions and I was so grateful to be sitting with my daughter on her 1st birthday.  One of the staff members bought her a really cute cake that she could tuck right into, but Gabrielle was very dainty and was only interested in a bit of the red icing.   Here are a few of my favourite pictures from Canuck Place.

Dragon Mom

There are a few posts I have in the works, but I found this article on Canuck Place's FB feed yesterday, and I have to share it today.

Since seeing it, it is appearing everywhere on the internet.  All of the other parents in our I-cell community are posting it, and friends have sent us the link as they try to understand.

I have always tried to put into words how profoundly different my role as a mother to healthy James and Michael is compared to my role as a mother to Gabrielle.  Emily Rapp captured it perfectly.

Thank you Emily for describing exactly what it's like to be a mother to a child who is terminally ill.

Amy.

One Spin Around the Sun

You did it, my little angel.

You've stayed with us long enough for a full trip around the sun.

You've stayed with us long enough for us to realize how lucky we are for each and every day.

You've stayed with us long enough for us to realize that hope isn't about fixing things, or Shangrila, or touchdowns.

You've stayed with us long enough for us to realize that hope is about love, and tears, and afternoon baths.

In your being with us for just one spin around the sun, you have taught us that everything ends, and all that matters is the stuff in between.

Like laughing.

Like dancing.

Like breathing.

Gabrielle, you are our hope child.

I love you my darling little girl. And you've made me the happiest Dad in the whole world, today, and every day.

Love,

Your Daddy.

A Year To Celebrate

Happy Birthday Gabrielle,

Thank you my wise, sweet girl for everything you've taught me.  When you were born and we found out about your diagnosis I didn't know how I could possibly do it.  I desperately prayed to the universe that you would be healthy.  That you would live a life as I knew it.  With your diagnosis, we collapsed and our world fell apart, but with your smiles, your touches and your energy, we have been building ourselves back up and now we stand tall.

You have taught us so much.

You have made your daddy the best daddy ever.  Never have I seen a man rise to the challenge with so much love and positivity.  He faces every challenge, every set back with nothing but courage like a soldier in battle.  He is with you in every step you take.  He sings and dances with you and when he does he fills you up with all the love he has. Enough to last you an eternity.

You have taught us so much.

You have made your brothers the best brothers a little girl could ask for.  Never do they get jealous of all the attention you get.  Instead, they stand proud, they show off for you, and ask to cuddle and hold you relentlessly.

You have taught us so much about our bodies. Your brother James has learned that some babies have nurses and doctors to help them and some don't.  Before you Gabrielle, we naively assumed that all bodies are healthy.  But they are not.  We have learned all about lysosomal storage diseases and you make us sound so smart with all our fancy new medical language and knowledge.  I know how to give meds through an NG tube, I know how to heparin lock your central lines, change the caps, and the bandage while maintaining a sterile field. I can work a feeding pump, oximeter and probe, and I know what a suction machine feels like in my nose, and I have tasted a gazillion medications.  You have opened our world to the world of cellular biology as we try to understand what is going on in your little body.  I have learned to advocate for you and have become a mini expert on your diagnosis.  You, my smart and wise little girl, have stumped the smartest of doctors with your medical needs and symptoms. But I have learned. I know exactly what you need.

You have taught us so much.

Thank you for showing us a world full of amazing people that I otherwise would have never met.  They get the heartache, the pain, the joy and the love.  They get the strength of the human spirit and they understand the miracle of a healthy child.

You my sweet baby girl have made me wiser.  You have made me stronger. You have made me more appreciative.  You have taught me that we don't need much and that love can get us through the toughest of times.  When I look at you with your tubes and tape on your face, I see the most beautiful girl in the world.  I see a little girl with wisdom in her eyes and love in her heart.  I love you Gabrielle.

Happy 1st birthday to the bravest and most beautiful girl I know.

Your mommy for ever, and ever, and ever,

Amy

Thanksgiving

Today, north of the border, it's Thanksgiving Day.

I honestly didn't understand what this holiday was about when I was a kid. As a teenager I understood the basic concept of giving thanks, and would do my best to think thankful thoughts, and that was about it.'

I totally get this holiday now. All of us living in this day and age are so lucky, it's not even funny.

Like we are really, really, really fortunate.

Like really, really, really fortunate.

But I'm amazed at how oblivious most of us are to our great fortunes. I'm also baffled at how completely and utterly lacking our secular culture is when it comes to having customs of thanks and gratitude.  I know some of us pray and meditate thoughts like these, but most of us don't.

Even at our Thanksgiving Dinner last night here at the Canuck Place hospice, no one was even looking for a queue to give thanks like they would have 2 or 3 generations earlier. We all dug into our meals without sharing as a group (or at least acknowledging) how significant the meal was. The room ate it quickly. People left quickly. And there didn't seem to be much afterthought.

The irony is that, despite our fortunes, the levels of loneliness and depression seem to be increasing in our society. Go figure!  We all have so much, and instead of being grateful for what we have, and wanting what we have, we want more and more other things, and are left feeling empty.

Maybe it's because the tradition of "communion" (in the general sense of the word) is completely lacking amongst people today:

Why is this? It doesn't really make sense, does it?

So, here's my public vow ...  To boldly take a few seconds during the feast-like meals I share with company to stop and share a few things I'm thankful for. Yeah, I know, it'll create some awkwardness, but I just think we have so much to be thankful for, that pausing for a moment to simply state a few of them (that's all, just a simple acknowledgement) will help remind me and my family and those I feast with just how lucky and fortunate we all are.

I think it's worth it.

"Remembering You Are Going to Die Is the Most Important ... " ~ Steve Jobs

I've been waiting for the right time to post this video for months now, and I never thought Steve Jobs' death would be what prompted me to do so.

“Remembering that I'll be dead soon is the most important tool I've ever encountered to help me make the big choices in life. Almost everything — all external expectations, all pride, all fear of embarrassment or failure — these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.”

 – Steve Jobs, at a Stanford University commencement ceremony in 2005.

 

Tiny Light Foundation

My mother in-law saw an ad in the paper months ago about the Tiny Light Foundation; a non profit organization that provides families with professional photography for children and families faced with a life altering illness.  As I drink up every smile, snuggle, and moment with Gabrielle I was so excited to have some photographs taken to remember the wonderful summer we had with her.

Matt Brennan was our photographer who came all the way from Pitt Meadows to spend the evening with us at east beach where we spent many summer nights as a family.  Yes, it was the end of the evening and our boys were rather rambunctious, but Matt managed to capture a few shots that I will always hold close to my heart.  Thank you to the Tiny Light foundation and to Matt from the bottom of my heart. 

Here are a few of my favourites:

Guest Blog Post From Your Auntie Julie

This past weekend, I participated in the Canuck Place Adventure Challenge with my team, Team Gabrielle.

Our team was awesome. We raised over $10,000, we trained together, and we worked hard! We also had a good reason: one year ago my niece, Gabrielle, was born with I-Cell disease, a rare genetic disorder with no hope for a cure and a very short lifespan.

I never dreamed in a million years that a charity like Canuck Place would be so near and dear to my heart; but it is, for many, many reasons. Shortly after Gabrielle was born, she received a stem-cell transplant. She was hospitalized for 5 months. Day in, day out, my sister and her husband would take turns spending the night at the hospital with Gabrielle, or spending the night at home with their two boys. It took a huge toll on their family, and finally, in July, they were sent to Canuck Place for respite care.
At Canuck Place, Gabrielle was able to receive the 24-hour nursing care she needed, and the doctors, who had already seen her at Children's Hospital, knew everything about her. She had her own beautiful room with windows that you could open and breathe in the fresh air. She had a huge pram that allowed her to go outside and feel the sun on her face. And she was able to go outside her room and anywhere in the house, whereas in the hospital she was stuck in the tiny little transplant room. You could see her spirits rise!

My sister and the rest of her family all stayed there too. They had excellent home-cooked meals; there were volunteers to help with the busy boys with tons of fun and creative activities; they were able to enjoy quiet, sleep-filled nights; and there were amazing staff and other families who could relate to what they were going through too.

A week into their stay, my family went to visit them. We stayed for dinner and got to experience some of the excitement that they talked about. It was incredible, it was everything my sister said and more. I saw first-hand how amazing Gabrielle looked. I saw the colour back in my sister's face. I saw my nephews laughing, and I saw how rested my brother-in-law looked. It was awesome, this is where my gratitude for Canuck Place began!

So, on Sunday, when I crossed the finish line at the Adventure Challenge, holding hands with my sister Amy, and my wonderful friends Nadia and Adrienne, I was completely overwhelmed. It was perfect. Gabrielle was there in her daddy's arms, my husband and my kids were there cheering me on, my nephews were there excited for us to finish; our IF trainer, Isabelle, who spent hours and hours training us was there; and I knew all the people in Gabrielle’s support system who had made donations and sent us wonderful words of encouragement were there in spirit too. It was awesome!