And there it ends, right? The ride is over, the story has ended, but you realize that you're still at the theme park. When does this place close? Where is the exit? You consider the options; try again, try a different ride, maybe you find a park employee and let them know you are lost or just sit tight and wait until it's time to go.
Tuesday, November 9, 2010
The Roller Coaster & the Theme Park
So many of us, parents of a child with progressive disease, refer to our daily existence as a roller coaster ride which given some thought, is very fitting - the constant ups and downs, unexpected twists and turns, sudden loops, dips, and maybe even a brief pause when you think that last drop had to have been the biggest only to learn that there is another and another and then it stops. It stops abruptly. It jolts you forward, slamming you into the safety harness, but your adrenaline is still pumping as you try to figure out which way is up. Your knuckles are white from holding on so tight. Someone releases the safety harness and although you don't know how, it happened none the less. You are free to go, but still you sit, dazed. There is a lot of confusion, clusters of people getting off and new people getting on. You slowly stand up, legs feeling like jello and heart racing. When you got on the ride, you knew it would end, but ride itself is a blur with random moments of clarity. You wonder where you're supposed to go now. Some follow the arrows, some ask for directions, and some seek out those who have who have been on the ride before. Somehow, we all end up corralled in the same gift shop looking at the pictures from each strategically placed camera. Our priceless expressions come into view on the monitor for all to see and a momentary glimpse of the ride has been capsulated in time.
And there it ends, right? The ride is over, the story has ended, but you realize that you're still at the theme park. When does this place close? Where is the exit? You consider the options; try again, try a different ride, maybe you find a park employee and let them know you are lost or just sit tight and wait until it's time to go.
And there it ends, right? The ride is over, the story has ended, but you realize that you're still at the theme park. When does this place close? Where is the exit? You consider the options; try again, try a different ride, maybe you find a park employee and let them know you are lost or just sit tight and wait until it's time to go.
Thursday, July 8, 2010
Quiet Celebration
In anticipation of Cooper's 3rd Birthday and the 1st anniversary of earning his wings, I was fortunate to be granted a few weeks off work. We headed for the solace of the sand, the waves, the breeze, and the fish. David and I spent Cooper's birthday in Cabo, and went on a snorkeling adventure. We visited the place where the Sea of Cortez meets the Pacific Ocean, saw manta rays, a guitar shark, dolphins, held a few starfish and swam with hundreds of fluorescent fish. It feels weird to call it a "celebration" without Cooper here to actually be turning 3. We wrote Cooper a birthday message in the sand which quickly washed away by the gianormous crashing waves, as if the ocean were the messenger. Our adventure seemed more reflective of the things reminding us of our little boy, a quiet celebration, and that felt good.
Today has been a year, one whole year, since Cooper earned his angel wings. It was hard to sleep last night just thinking of how different things were on this day, down to the hours. Images of what we were doing the night before he died drift in and out of my mind; David, Cooper, and I had all taken up camp in our living room sleeping together in shifts on the hide-a-bed because it was easier to access the oxygen concentrator and the kitchen for mixing meds. It's still all very surreal. We choose to focus the good times, and the happy moments, so today is especially hard because it's the day our light went out.
It will be a hard day, but I know we will get through it. These are the memories that hurt, yet they are the memories that compel us to live each day to the fullest, for Cooper.
Today has been a year, one whole year, since Cooper earned his angel wings. It was hard to sleep last night just thinking of how different things were on this day, down to the hours. Images of what we were doing the night before he died drift in and out of my mind; David, Cooper, and I had all taken up camp in our living room sleeping together in shifts on the hide-a-bed because it was easier to access the oxygen concentrator and the kitchen for mixing meds. It's still all very surreal. We choose to focus the good times, and the happy moments, so today is especially hard because it's the day our light went out.
It will be a hard day, but I know we will get through it. These are the memories that hurt, yet they are the memories that compel us to live each day to the fullest, for Cooper.
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| A full moon every night. Goodnight Moon, Goodnight Cooper |
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| Peace & Wonder |
Tuesday, June 8, 2010
Approaching One Year
It is only the beginning of June, and I'm sure these next two months will bring out the emotions in all of us. May was rough enough on it's own and I must say that I was glad to see the month come to an end. I expected that the one year anniversaries would be hard, but I didn't expect to feel knocked off my feet. It's not like we didn't know it was coming, yet the lull wasn't long enough between waves to stand back up. Every week in May revealed a giant waving red flag reminding us that Cooper was gone.
May is a pretty rough month for us. It has been two years since Cooper was diagnosed with GM1 and as much as I'd like to, I will never forget that day. Last year we held the first ever Cooper's Quest event and it was the only one Cooper would be alive for. One year ago, on Memorial Day, was the last time we heard Cooper laugh out loud. I think that because laughter as a first was so significant, it makes the last time much more poignant. It's one of my most favorite and coveted memories, to think Cooper so giggly over silliest sounds and noises. He would laugh so hard pausing only long enough for you to do it again and again creating a never ending cycle of laughter.
Oh month of May
You burn, you sting, you left a scar.
Diagnosis Day lay stagnant,
within these walls of May.
Two Mother's Days I had with you,
and now there are no more.
A founding quest amongst these Days,
bittersweet memories.
Memorial Day on summer breeze, a smile, a laugh, the last of these.
All these memories are still so close to the surface and I find myself still trying to obtain that elusive {balance}. A way to grieve and the space to feel sad while relishing the joy he brought to our lives. I still try to live life to the fullest even in his absence, one of the top lessons learned from my little one. Most days the good memories take over and I find myself remembering laughs, and hugs, a family surrounded in love.
May is a pretty rough month for us. It has been two years since Cooper was diagnosed with GM1 and as much as I'd like to, I will never forget that day. Last year we held the first ever Cooper's Quest event and it was the only one Cooper would be alive for. One year ago, on Memorial Day, was the last time we heard Cooper laugh out loud. I think that because laughter as a first was so significant, it makes the last time much more poignant. It's one of my most favorite and coveted memories, to think Cooper so giggly over silliest sounds and noises. He would laugh so hard pausing only long enough for you to do it again and again creating a never ending cycle of laughter.
Oh month of May
You burn, you sting, you left a scar.
Diagnosis Day lay stagnant,
within these walls of May.
Two Mother's Days I had with you,
and now there are no more.
A founding quest amongst these Days,
bittersweet memories.
Memorial Day on summer breeze, a smile, a laugh, the last of these.
All these memories are still so close to the surface and I find myself still trying to obtain that elusive {balance}. A way to grieve and the space to feel sad while relishing the joy he brought to our lives. I still try to live life to the fullest even in his absence, one of the top lessons learned from my little one. Most days the good memories take over and I find myself remembering laughs, and hugs, a family surrounded in love.
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