A Normal Life...

I think for the past year and a half I have been grieving the loss of any normalcy.  What is a normal life? I think living a normal, or regular life is one that is predictable and kind of gels with the rest of the community and or culture that you live in.

Since the birth of our beautiful daughter Gabrielle, I have lost and have been grieving a normal life for me, my kids, my husband and most importantly, for my dear, sweet daughter Gabrielle.  And here I am, a year and a half later, and I am still crying tears over what could have been, and over what my daughter, my family will never experience.

Some of me has accepted our new normal.  But, I don't know if I will ever be 100% ok with our new normal.  I think a part of me will always, always grieve for the loss of life, the loss of many things amidst all the gains and lessons learned.  What I really would wish for would be for Gabrielle to experience life with a healthy body like mine, like yours, like the rest of my children.

However, that is not the reality.  And if you are going to cope and function on a day to day basis you need to focus on what you have, not what you don't have.  I have a beautiful daughter.  I love her with every ounce of me.  I look at her and I think to myself how much I love her and how is it possible to love someone so much.  Whenever I am in physical pain and I need some strength, the first person I think of is Gabrielle.  I think of all the challenges she has faced – and will continue to face – and how she overcomes each and every one with a smile on her face.  She gives me strength every day.  She is my little hero and has taught me that there is no normal.

Respite: Gabrielle at Canuck Place (August 2012)

I love Canuck Place! Total life-saver for us after the month that July was. Please consider sponsoring Brenda Ball, Benjamin Ross, or Julie Ross for the Canuck Place Fundraising Adventure Challenge. The kids and families here (including us) are so, so grateful for everyone's generosity, and I (personally) am grateful for living in a society where people  make efforts to take care of those who are less fortunate.


Here's a little video of Gabrielle playing tetherball at Canuck Place:

After 10 Long Nights and 11 Days ...

Gabrielle is home ... at last. Not the scare we were fearing, but our little girl was put through the ringer. God, we healthy people take our strength and resiliency for granted.

Here are some pictures of her in the neighbourhood around BC Children's Hospital. Almost the only thing that she tolerated by the end of her stay was being pushed around and seeing the sites. After hearing how I pushed her around and around and around all day, and seeing her gripping the chair with her little afghan on lap, Grandpa Wayne nailed it when he said, "It's kinda like Driving Miss Daisy." Indeed! 

There is No Santa Clause (Gabby on Mend)

Thanks to everyone for the well wishes. It's been a pretty crazy week.

Gabrielle is steadily improving since being admitted on Friday. She went to bed last night sounding almost normal, but woke up this morning choking on her coughs ... which is better than the night before when she went to bed choking on her coughs and woke up struggling to breath. So we are seeing a positive trend.

So funny being in the hospital this time around and after last year's marathon experience (which was followed by an incredibly challenging year). A year ago we were just realizing that we were "That Family." Now there's a quiet acceptance.

I suppose that's how it is for anyone who lives with – or is supporting someone through – a life-altering tragedy, sickness or disease... You just come to look at the world differently.

You come to realize that there is no Santa Clause. You're like the kid in Gr.1 who knows what's really going on behind the scenes come Christmas time. You just don't get as excited about all the hubbub as everyone. You enjoy the activities and excitement and go along with the myth because you want to fit in, be a part of things, and have fun. You learn to enjoy the season for what it really is. You are wiser beyond your years.

You know there is no Santa Clause. Weirdly, however, and in a way you can't quite make sense of, you know not to talk about it too much (or at all) with your peers because you don't want to ruin their fun. Their fun is premised on something entirely different. They don't want to know about Santa Clause. They don't want to "go there." Not ready. Later.

That's what it's like this time around. We are not trying to cling on to "normal" like we did last year. Just like when we lived in South Korea for two years, where it wasn't until the second year that we really started "getting" the country, I think we're starting to get it now, and at a whole new level...

Gabrielle has shown us what is really magical. Really real. Really wonderful.

Life is short. Life is fragile. Like can hurt. Life can be wonderful.

So while there is no Santa Clause, we're learning that there are lots of opportunities to quietly celebrate what we have – and who we have – without making it a big deal or super special. The frills and ribbons we see people getting all tangled up in actually take away from what's really going on in the first place. Untangling yourself can be a long and painful process, and sometimes you lose yourself along the way, but what you see at the end is worth it ... because it's real.

July 15th ~ Gabrielle Update

About 18 hours ago we had to take Gabrielle to BC Children's Hospital as the level of care we were able to provide at home just wasn't enough. We were admitted to a low-urgency ward of the hospital, and the doctors began an aggressive med regiment to nip this in the bud. Thank God they know her so well here.

Gabby's status is definitely not worthy of being sent to the ICU, so that's awesome. She is, however, struggling to breath when the mucus builds up and the coughing attacks hit. It's definitely some form of bronchiolitis. In my opinion, she just needs some straight, deep sleep. It's 5:00AM now and she's maybe had 90 minutes the whole night – then she wakes up and we have to suction the mucus plugs out that are preventing her from breathing... and sleeping. Argh.

Taking away some positives: Gabby had her first bath (since March 2011) without a central line yesterday. It was a nice break from the hospital bed and just wonderful to see her eyes light up whenever she splashed the water.  Amazing how much children – especially I-cell children – can teach us about living in the moment.