School is in full swing. High school football season officially starts tonight. Today is two years since Eli's disease manifested as a bleeding disorder and we landed in the hospital. It's also our friend Maxwell's birthday. He would be 2 years old. He was our neighbor at Duke, both in the bone marrow transplant unit and in the pediatric intensive care unit. He died at 9 months of age.
All of these things trigger my grief in different ways, causing a swirling grief storm inside of me. The weather is changing, which is weird. It's still hot, but there are subtle changes. Does this always happen? Have I just not noticed it? It's gotten much windier. We have two memorial wind chimes on our back porch, one was given to us by Pediatric Cancer Family Foundation when Eli died. The other was delivered at the one year anniversary of Eli's death, from Duke Pediatric BMT Family Support. My bedroom is on the backside of the house, looking over the porch. I always hear Eli's wind chimes the best from my bedroom. It's been a calm summer and I have only heard the wind chimes a few times. But this week I've heard them several times. It's always slightly haunting and bittersweet. I love it, but I hate that it's all I have.
I'm mostly looking forward to Ty's game tonight, but part of me is dreading it. Last year Ty wasn't playing, but we were supposed to go cheer the team on at their first game. It ended up pouring rain so we didn't. However we did go to a postgame hangout at a friend's house and I cried in the bathroom.
There was a period of about six to eight months where I re-entered life after being in a hospital for seven months and losing Eli. It was scary and hard. A year ago now I was deep in it. I'm not all the way there, but I'm much more able to participate in life now.
Two years ago today my nightmare began. Today is Maxwell's birthday, but he's not here for it. Today is just another "new normal" day. Except it's not.
Friday, August 26, 2016
Trying to be Alive
I read this book, A Million Miles In A Thousand Years, this summer and it had an effect on me. It's basically about taking concepts of story and applying them to our lives to create more meaningful stories with our lives. Some of it I can't exactly do in the middle of my grief. Things having to do with greater purpose are just too much. I'm still upside down in an ocean, fighting to find the surface. But memorable moments are mostly within reach.
On our work/road trip/vacation in June Ty and I went whale watching. It was BREATHTAKING. I texted a friend, "It felt like being alive." I can mostly handle memorable moments, or the exciting staccato notes of life. Sometimes memorable moments happen on their own, but a lot of times we plan them.
One such memorable moment was Ty's birthday recently. It was the big 1-6 and I wanted it to be special, but also on a major budget. I hemmed and hawed, but we ended up going to Bob's River Place with friends, which is a privately owned swimming hole on the Suwanee River, way out past the cows and prisons and churches, as one nine-year-old observed. We spent the day there and despite my fear of brain amoebas, flesh eating bacteria, and season-ending injuries the week before football camp, we had a total blast. I got that feeling again, like being alive.
Since I don't have a little guy to take care of I have been challenging myself to actively participate in life. At Bob's that meant going down a water slide, swinging off a rope swing, and jumping off a platform. I screamed my head off, and I even needed to borrow some bravery for the platform (I made Ty do it with me), but I did it.
The platform was terrifying. It was about 25 feet above the water and felt twice as high looking down. The trick was not thinking, just doing. After stalling a couple times and asking Ty to come jump with me, my winning method turned out to be hold a hand, close your eyes, and walk off the edge. Also, scream.
I wonder if that could be a method for life. Hold a hand (community/support), close your eyes, and move forward. Screaming is 100% permissible.
I'm trying to do it. This is a heavy transition time of year, which can make grief and loss more intense. We have several family birthdays, school is starting, football season is starting (football is a big part of our family culture), and we're coming up to the anniversary of when Eli got sick. He should be here for all of it. He should be singing happy birthday to us and offering to blow out candles or open presents, he should be excited for school and meeting new friends and reporting to me all the things that happened in his classroom, he should be watching football in his daddy's lap, yelling when daddy yells and cheering when daddy cheers. We should be remembering together the day he started bleeding, and toasting together with sparkling apple cider that he is cured. But he's not here for any of it.
I'm trying to bear it. We took a leap and I started homeschooling Ty. I'm trying to be a good football mom and just keep moving forward, however long any progress takes. I'm doing much more with our restaurant marketing business, managing pieces of several accounts. The hardest part is caring enough to keep moving. Because truthfully I don't.
But if I want more memorable moments I need to show up for the mundane parts of life, too. Even if I can't make myself care, even if the days are mostly bad. I have to try to show up. Then it's just a matter of grabbing a hand, closing my eyes, and moving forward.
I'm trying. It seems like way more failure than success, but since I am strangely still alive I have to try to actually be alive.
On our work/road trip/vacation in June Ty and I went whale watching. It was BREATHTAKING. I texted a friend, "It felt like being alive." I can mostly handle memorable moments, or the exciting staccato notes of life. Sometimes memorable moments happen on their own, but a lot of times we plan them.
One such memorable moment was Ty's birthday recently. It was the big 1-6 and I wanted it to be special, but also on a major budget. I hemmed and hawed, but we ended up going to Bob's River Place with friends, which is a privately owned swimming hole on the Suwanee River, way out past the cows and prisons and churches, as one nine-year-old observed. We spent the day there and despite my fear of brain amoebas, flesh eating bacteria, and season-ending injuries the week before football camp, we had a total blast. I got that feeling again, like being alive.
Since I don't have a little guy to take care of I have been challenging myself to actively participate in life. At Bob's that meant going down a water slide, swinging off a rope swing, and jumping off a platform. I screamed my head off, and I even needed to borrow some bravery for the platform (I made Ty do it with me), but I did it.
The platform was terrifying. It was about 25 feet above the water and felt twice as high looking down. The trick was not thinking, just doing. After stalling a couple times and asking Ty to come jump with me, my winning method turned out to be hold a hand, close your eyes, and walk off the edge. Also, scream.
I wonder if that could be a method for life. Hold a hand (community/support), close your eyes, and move forward. Screaming is 100% permissible.
I'm trying to do it. This is a heavy transition time of year, which can make grief and loss more intense. We have several family birthdays, school is starting, football season is starting (football is a big part of our family culture), and we're coming up to the anniversary of when Eli got sick. He should be here for all of it. He should be singing happy birthday to us and offering to blow out candles or open presents, he should be excited for school and meeting new friends and reporting to me all the things that happened in his classroom, he should be watching football in his daddy's lap, yelling when daddy yells and cheering when daddy cheers. We should be remembering together the day he started bleeding, and toasting together with sparkling apple cider that he is cured. But he's not here for any of it.
I'm trying to bear it. We took a leap and I started homeschooling Ty. I'm trying to be a good football mom and just keep moving forward, however long any progress takes. I'm doing much more with our restaurant marketing business, managing pieces of several accounts. The hardest part is caring enough to keep moving. Because truthfully I don't.
But if I want more memorable moments I need to show up for the mundane parts of life, too. Even if I can't make myself care, even if the days are mostly bad. I have to try to show up. Then it's just a matter of grabbing a hand, closing my eyes, and moving forward.
I'm trying. It seems like way more failure than success, but since I am strangely still alive I have to try to actually be alive.
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