Our Thoughts on Thirteen

As we celebrate Meredith’s birthday today, I include a guest post by my husband and Meredith’s dad, Tim. We both have our own thoughts to share about our girl turning 13.
Julie’s Thoughts:
Thirteen.
It seems impossible that our Meredith is 13 years old today. I don’t recall ever imagining what this day would be like because I learned to just live in the moment when it came to imaginings about life and death. I have been reflecting on this last decade plus three years and I recall various stages and upheavals that went along with certain birthdays. In the beginning, we used to have gigantic birthday parties~ 40 guests, gourmet food, elaborate cakes, touching speeches. My chiropractor’s receptionist commented with a laugh that “you don’t have big bashes like that for children.” I saved her the horror of my thoughts and refrained from speaking them aloud:

“You do if your kid might not live to see their next birthday.”

When Meredith’s doctors had the ‘life expectancy talk’ with us around age 2 we continued to approach birthdays with great joy and celebration but we also recognized a new feeling; one of hesitation and dread as each passing year brought us closer to that age that she was not expected to surpass. But, age 8 came and went, and we were a little smug as we got ready for birthday #9. Life also stabilized for the first time by age 9 and we could settle into a little normalcy after almost a decade of intense care giving, constant stress, crushing sleep deprivation and unrelenting worry.
And then she was 10~ double digits was deserving of a big party. The last couple of birthdays have been celebrated with less fanfare but only because they felt like a regular celebration. This year, unexpectedly, has felt very heavy and dark. The days leading up to this birthday have been tough and grief has come knocking on the door more than once without any warning. This time last year, two children in our tribe died within a week of one another and this year, as we approached the anniversaries of these deaths, two more children in our tribe have died. And here we are, approaching adolescence and that feeling of “moving up in the line” is at the forefront of our thoughts.
I recall a contractor from a few years ago who came to install a soaker tub for Meredith. In a failed attempt to shed positivity on our situation, he informed me of how lucky we were as we’d never have to worry about teen pregnancy or drug addiction.  Yes, the bonuses of having a child with a severe brain injury. Lucky us.
And lately, when I would tell people Meredith was turning 13 in early December, they’d reply with, “Oh……a teenager in the house,” which was accompanied by an all-knowing look. One that says, “You’re in trouble now” as though our daughter will now be asking to go out on dates and will begin to show signs of rebellion. I find it hard to smile and say, “Yep, we’re in trouble now” when really what I want to say is, “Actually, things will remain pretty much the same except now Meredith is older and bigger.” But I don’t say that. I change the subject instead.
Turning 13 means we are waiting for the bigger signs of puberty to kick in and with that an anticipated host of other issues. We are moving into unchartered territory and it feels as though we are starting all over. These last four years have been a reprieve, a break from the intensity of the first decade but I think we both feel, deep in our bones, that things are about to change again.
And yet, as we celebrated this milestone birthday with Meredith’s grandparents and one aunt yesterday, there was tremendous joy and hope as we look ahead to her 14th year. We watched a compilation video of the first ten years and I was hit with the reality of all we have been through. And I am reminded of one of my favourite quotes by Ralph Waldo Emerson: “What lies behind us and 
what lies before us are tiny matters 
compared to what lies within us.”
Happy birthday, Meredith Ocea!

Photo by Tim Graham (www.tiredtim.com)

Tim’s Thoughts:

We have a teenager.

I am really not sure why this blows my mind. It is not like it has come out of the blue. It has been happening for, well, 13 years now. Still, I find myself utterly unprepared and kind of surprised that we are here. To be perfectly honest, I never thought we would make it. I have not always been as open about this sort of stuff as I maybe should have, but the time has come to be brutally honest with myself and everyone else. We were told that Meredith would likely only make it to the age of 7 or 8 and if we were lucky she may make it to a little past 10. She has proven to be an incredibly strong little girl and continues to be healthy and is showing no signs of slowing down.

That being said, we cannot fool ourselves into thinking that the end is not coming. Truth is, once puberty hits, things will likely start going pear shaped and the decline in her health will likely accelerate. You see, despite the level of care, love, prayers and well wishes, nothing changes the fact that she is going to have a short life. I am not okay with this. I will never be okay with this. It is impossible for me to explain how much I am not okay with this. I have witnessed first hand, far too often, the devastation that losing a child brings. Knowing that this awaits us, haunts me every single day.

So this birthday is bittersweet. I am proud that we have made it this far and I am also terrified to know that we are running out of time. Knowing that our time with Meredith is not guaranteed, we never take a single moment for granted. Our lives are full of challenges, that’s true, but it is also full of celebrations. Every smile, every laugh every time she tracks something with her eyes or sits in her chair without losing it, brings great joy to all of us. We have even celebrated bowel movements on more than one occasion. I know it sounds cheesy but being Meredith’s father has been an absolute privilege that I do not take for granted. I know that not everyone gets to experience parenthood and am very grateful that I do.

And so, I raise my glass, to you, Meredith, my sweet little bug. Thank you for fighting on this day 13 years ago and every day since.  You have forced me to become a better person. You have made me feel a level of pride, pain, happiness and love that is exponentially deeper than I had ever thought possible. You amaze me every single day with your strength, determination and capacity for love. The world is a better place because you are in it. It has been a wild ride so far and I am not ready for it to end.