Wednesday, September 5, 2012

So long summer, it's been ...

I would really like to say it's been a blast but, well, just won't be able to say that this summer. The absence of my mother in all of our lives is apparent at most every turn, but we find joy in our memories, as we try and live fully in our moments and as we continue to move forward, truly carried by her incomparable zest for life.

 I look back at the last say, 5 summers and most have been some total bummers. Zoey's first summer of life for instance, after she was finally released from the NICU, was a time that I sometimes look back on and do not know how we did it. We had a make shift hospital 'room' downstairs and it was fight or flight for our girl for 3 more months until her heart surgery in August. She did not cry. Never did hear her cry until she was extubated from her heart surgery at 6 months of age. She did not move. She instinctively knew that even crying or movement period, would expend precious energy. Energy of which she had little reserve. She was g-tube feed 20 hours a day. Pulse-ox, oxygen on hand. And the part I have no idea how we managed, was that someone had to sit or stand by her nearly 24 hours a day because she gagged and retched continuously. You could not leave her side. Ever. But we found our way, as we always did. Faith and hope leading the way.

 I look at this picture and a few things strike me. My face. And my mother's face. Two mother's. Worried and fearful for two different children. Also how absolutely exhausted I look and how most definitely, I had been crying.

And the next summer, we were  shell shocked by our inauguration into the world of Infantile Spasms. Too think that at one point we thought that Down syndrome would be our biggest worry. I wish. But, once again,  we somehow found our way. Zoey keeping us focused on the task at hand and her indomitable spirit leading the way.

And then came summer number 3. Summer 3 found us dizzy in disbelief at the road we had just traveled the 8 months previous. Life decided to laugh at us once more and we were, or rather Zoey was, dropped head first into the world of pediatric cancer. I think that summer I was truly suffering from post traumatic stress syndrome. I actually think, I am, in many ways, still dealing with that. But I eventually found my way that summer, barely. Wading through the darkness and sadness and still finding beauty on a cancer floor that most were even afraid to visit us on. I emerged changed and jaded but also blessed and better.

 As I went back and found some of these photos in my blog archive, here are a few quotes I found as titles. Pretty telling as to a common thread of trying to find my way, don't you think?

Hope is faith holding out its hand in the dark." ~George Iles 

If we are facing in the right direction,all we have to do is keep on walking"Buddhist saying 

When it is Dark Enough, You Can See the Stars"Ralph Waldo Emerson

Well, you get the idea. And here we are. Another season of our lives. I would venture to say that from this point on, until my last day, this will be how it goes. Change will come, like it or not and we will need to roll with the change. We tweak as we go and make the best of sometimes the worst. We move forward determined to not allow bitterness to engulf us, which is truly difficult sometimes. We sustain ourselves with the abundant blessings that can come with the changing of the tide and know that yes indeed, things could be worse.

 Can I digress for a moment to tell a story? One that I repeated recently. A few times in fact. And the other night, while on the phone with one of Zoey's primary nurses from way back in the NICU days, I found out that she has continued to retell this story time and again as an illustration of the old adage of "But things could always be worse."

The story involves Judith, the aforementioned NICU nurse and I and one evening in Zoey's hospital room during our first few weeks of chemo.  Judith came up and often sat with me and kept me company after her shifts were over in the NICU. We were sitting there one evening chatting and shaking our heads and trying to figure out how it was we had found ourselves in crisis mode once again.

We sat there and one of us said, "It could be worse" And the other said, "Let's think about that. What would be worse, except the obvious, not winning this battle against cancer." And what we came up with was ... Abduction. Yep, we both decided that having your child abducted, and having no idea where they were or what was happening to them and if you would ever see them again, we decided that that was worse then sitting in a hospital room with your child battling cancer. That my friends, that way of thinking, that spin on life and all it's relativity, is how we have made it this far.

And we will continue to look at life that way. Perspective coming sometimes in the oddest of comparisons.

How did we spend our last day of summer?

 The boys wanted to have In-N-Out and that is a treat in our house, so we headed there and followed it up with a trip to our local candy shop where far too much sugary junk was bought but boy is it a fun little place with all that classic old school candy most of us grew up with. Also, we found these 'Smarties', which are Canada's version of our M&M's and it was candy that my mom always gave to the kids on Christmas Eve. They loved that candy. They loved her.

We bid farewell to Summer 2012 and we look to the future with hope and the knowledge that yes, yes things could be much worse. But I gotta tell you, sometimes I do add a tag line and that is, that things could be worse but geesh, sometimes they sure could be better. Just saying.

Update: My ever so wise and glass half full oldest daughter, reminded me that I forgot to mention last summer, Which was, I have to admit, a much needed and well deserved for one and all, fantastic, void of crisis, summer!


Jessica said...

You didn't include last summer, which I'm pretty sure was great!

Elizabeth said...

What a great post.

Onward, my dear friend. Ever onward.

Anna said...

I remember much of your journey from infantile spasms on.... You Are my hero. I sit here with tears just gushing down my cheeks. I needed to read this. I needed a dose of perspective. I'm sorry that you've had to walk this path so that those of us walking behind you could see how it's done. Grieve dear friend. Take the steps you need to keep peeling off the layers. You can do it! Keep your hands open, accept the gifts. It's ALL grace.

Joyce said...

Your Jessica, a beacon just when needed. So much stronger are we all for the experiences we have traveled. Even stronger for the friendships we have developed. Thankful for you dear friend.

Justine said...

Wow. That was so humbling...makes my "big" problems seem tiny. Thanks for the perspective. And I love your pictures. You inspire me.

erika said...

I think I have the same facial expression in most of Izzy's baby pictures. It doesn't take away from all the beauty and light though that you emit. And that picture of Zoe... her angelic little face just makes me melt inside.

Rochelle said...

Love you my friend. Always thankful for your perspective, strength and grace!

Cammie Heflin said...

That's my girl Jess!!! I can't be the only glass half full girl! Love you guys!

krlr said...

My girl didn't cry either. I don't know if I was in denial or just exceptionally ignorant because I was astounded at all the noise she made after they fixed her heart. She had been so, so very weak, I feel woozy when I think of it now. But that is where our paths part - I've had multiple peaceful summers since whereas you have been knocked off your feet again & again. Yet you keep standing up & you & Zoey keep finding a way forward. That is real strength.

It's funny but "it could be worse" is my primary operating system. Perhaps not the most cheerful one, but its effective. And I think you found the one thing that would drive me literally, clinically insane.

Shelly Turpin said...

Hugs to you my friend. And regardless of what you have going on, you are always there with a kind word or a thoughtful gesture. How grateful I am that you found Bella's blog!

colleen said...

Beautiful post Heather....You have been through so much and have come out on top. Who knew you could do such hard work and end up standing... or should I say running!

Peter Olson said...

This life is just a temporary condition.
(2 Corinthians 4:16-18)
I believe that there is a purpose for all of this.
(Romans 8:28)
Someday, in heaven, I hope to look you in the eye, give you a big hug, and say, "See?" Ha! Ha!
Our moms are already there and waiting for us to do the same thing, I'll bet.
With the faith of a child (Zoey kind-a faith)
Have a great day!
:-) Love & Hugs

Julie Ames said...

Can you remember summers before Zoey?
She is such a bright light in our world. Thank you.

karen gerstenberger said...

I'm so sorry for your loss. I don't get over here as often as I'd like, and I totally missed the posts about your mother's passing. You and your family have my deepest sympathy.

Kristin said...

Beautiful post. Puts so many small problems/things in perspective. Saw this quote the other day, "The things you take for granted, someone else is praying for." So grateful for what I have, and even more for what I haven't had to experience (child abduction being #1 on the list).

Melissa said...

Love you friend!


Onward Christian Soldier. First thing that popped in to my head. Favorite song while growing up in Portand Oregon!