Shortly before we left for NC, Eli was gifted a nook tablet. I had no idea what a saving grace it would be. He always wanted new sports games on it. Everyday. We watched the Cubs games on it. We played music on it. We watched silly videos on it. When Eli was in PICU and not sedated we would hold it for him and he would play games that just involved tapping the screen. He was so weak it was all he could do. His tablet was always hiding in the hospital bed somewhere.
After Eli died I threw the tablet in a shoulder bag. That particular bag has been sitting in the corner of my room ever since we got home. I've been avoiding it for nearly 14 months now.
When I heard this summer that J.K. Rowling was coming out with three new books in September, ebook format only, I knew I would need to get out the nook. Look at it. Touch it. It's taken me months, and all day today, but I dug it out and plugged it in. I turned it on and there were all of Eli's little games. I could almost hear his little voice, asking for the football kicker game.
This is the part of grief that threatens to take you under. The big stuff is hard too, things like holidays, but there is plenty of warning and prep and strategies. The little stuff- turning on this tablet for the first time, and all the memories flooding back at once- that's the stuff you have to face that hurts the most.
I'm going to survive it. I'm going to figure out how to download some ebooks tonight. I'm going to let J.K. Rowling's words and the wizarding world comfort some small part of my soul.
It just hurts. And I just miss you, baby.
Tuesday, September 6, 2016
Friday, August 26, 2016
Time and change and "normal" life
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.
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.
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.
Wednesday, July 27, 2016
Booby traps
I wish I could convey the shock that comes with the recurrent pangs of pain and grief. It's as though I am going about my day and everything is sort of fine, and then a regular thing happens and it sparks a memory that just hurts too much or a painful desire, "if only".
The other day I was on social media and I saw the chamber of commerce is hosting the annual painting of the paw prints on Bay Street. (Jacksonville=Jaguars=paw prints=paw prints painted on a street leading to the stadium) I somehow never realized this was a community thing, but it is and how cool is it? It's a family friendly event, early on a saturday morning. You just sign up online and meet at parking lot and are assigned to a team to go paint a paw print on the road. Then there's a shindig afterward.
And I just missed Eli so much. If he were here and well we would go paint some paw prints. He would be all about it. And then he would probably ask to drive to his paw print all the time.
But he's not and we won't.
This kind of thing happens all the time. It's what makes it so hard to be alive and participate in life. There are booby traps waiting for me everywhere. I can be wise and avoid difficult situations only to a certain degree. Grief comes for me all the time.
Last night we had the DNC on and they started playing that song "Fight Song". I hate that song. It's not a bad song, it just kills me. It was popular last summer and a number of people sent it to me for Eli. I did like it then. Now it makes me want to punch someone.
It is hard to participate in life when at any moment you feel like you need to evacuate from wherever you are and from whatever you are doing.
The other day I was on social media and I saw the chamber of commerce is hosting the annual painting of the paw prints on Bay Street. (Jacksonville=Jaguars=paw prints=paw prints painted on a street leading to the stadium) I somehow never realized this was a community thing, but it is and how cool is it? It's a family friendly event, early on a saturday morning. You just sign up online and meet at parking lot and are assigned to a team to go paint a paw print on the road. Then there's a shindig afterward.
And I just missed Eli so much. If he were here and well we would go paint some paw prints. He would be all about it. And then he would probably ask to drive to his paw print all the time.
But he's not and we won't.
This kind of thing happens all the time. It's what makes it so hard to be alive and participate in life. There are booby traps waiting for me everywhere. I can be wise and avoid difficult situations only to a certain degree. Grief comes for me all the time.
Last night we had the DNC on and they started playing that song "Fight Song". I hate that song. It's not a bad song, it just kills me. It was popular last summer and a number of people sent it to me for Eli. I did like it then. Now it makes me want to punch someone.
It is hard to participate in life when at any moment you feel like you need to evacuate from wherever you are and from whatever you are doing.
Tuesday, July 19, 2016
Elusive faith
Last fall my mom and I went on a weekend retreat at a camp. It was right around two months after Eli died. I did a lot of things in those early months that probably didn't make the most sense, but I felt crazy and also had been incredibly homesick in NC all those months. I was trying to do or find anything that might make me feel even the slightest bit normal.
The retreat was great. It was a small group of women and it was laid back. No pressure to be or do anything. I am going back this year. That kind of relaxation for your soul does not exist in regular life.
My mom and I went for a walk down to the lake the first evening around dusk. It was about a five minute walk. Towards the end with 200 yards or so left of the trail, straight ahead we saw a deer hop across the path. Except we did not see the entire deer. We were talking and not focused so far ahead. My mom saw movement and recognizing it as a deer, yelled. I looked up to see the hind quarter or so of the deer bounce into the woods.
The rest of the weekend we wanted to see more deer. We took walks at different times of the day and tried to be quiet in the woods. We only ever saw hoof prints in the sandy path.
On Sunday morning we decided it had been a great weekend, but we were done. We were just emotionally exhausted and ready to go. So we skipped out after breakfast. But between packing the car and leaving, we decided to find some deer. We were determined. We walked all over creation. Literally. And everywhere we walked we saw fresh deer tracks. No deer. The tracks crisscrossed the path so much we were absolutely certain we were dealing with a number of deer. And they were fresh! The deer had *JUST* been there. And there. And there. And there, there, and there. We never saw them.
It struck me as we finally gave up and headed home, this is so much like faith. I wanted to see the deer so badly, but all I got was evidence of the deer. The same way we want proof of our faith, but all we get is little bits of evidence that spur us on to keep searching.
My faith is as elusive as the deer that weekend. In the very best moments I get a blurry flash of what faith really is. It's gone almost before I can focus on it. Most of the time I'm looking for it and all I get is little morsels that tell me faith is near, it was just here.
It was just here, it can't be far.
The retreat was great. It was a small group of women and it was laid back. No pressure to be or do anything. I am going back this year. That kind of relaxation for your soul does not exist in regular life.
My mom and I went for a walk down to the lake the first evening around dusk. It was about a five minute walk. Towards the end with 200 yards or so left of the trail, straight ahead we saw a deer hop across the path. Except we did not see the entire deer. We were talking and not focused so far ahead. My mom saw movement and recognizing it as a deer, yelled. I looked up to see the hind quarter or so of the deer bounce into the woods.
The rest of the weekend we wanted to see more deer. We took walks at different times of the day and tried to be quiet in the woods. We only ever saw hoof prints in the sandy path.
On Sunday morning we decided it had been a great weekend, but we were done. We were just emotionally exhausted and ready to go. So we skipped out after breakfast. But between packing the car and leaving, we decided to find some deer. We were determined. We walked all over creation. Literally. And everywhere we walked we saw fresh deer tracks. No deer. The tracks crisscrossed the path so much we were absolutely certain we were dealing with a number of deer. And they were fresh! The deer had *JUST* been there. And there. And there. And there, there, and there. We never saw them.
It struck me as we finally gave up and headed home, this is so much like faith. I wanted to see the deer so badly, but all I got was evidence of the deer. The same way we want proof of our faith, but all we get is little bits of evidence that spur us on to keep searching.
My faith is as elusive as the deer that weekend. In the very best moments I get a blurry flash of what faith really is. It's gone almost before I can focus on it. Most of the time I'm looking for it and all I get is little morsels that tell me faith is near, it was just here.
It was just here, it can't be far.
But sometimes the impossible is simply impossible, Alice
Originally written June 3rd. Delayed posting.
We saw Alice Through the Looking Glass last weekend at the IMAX theater. The real IMAX theater at World Golf Village, not the one they call an IMAX at AMC.
I never would have gone- it's too far away when there is a movie theater down the street, it's not my genre, it's too much $$, and if you give me 30 seconds I can come up with twelve more reasons. It's not actually that much money. But as it turned out I won tickets in a giveaway from Jax Moms Blog. (Thanks, JMB!) And since I couldn't excuse my way out of it in the name of not spending money, and because my counseling homework has been to do different things, we went together. A family outing. It took the pressure off that it wasn't on my dime and that my counselor said I didn't have to enjoy new things, just try something outside of our normal routine. I'm sure it sounds silly, but I truly was freed up to enjoy the evening, since it didn't matter if I did or not.
We had a great time! The real IMAX theater is impressive, it wasn't crowded, plus the movie was in 3D, and it's an incredible movie. It's remarkably well done, you should definitely see it.
The thing about Alice Through the Looking Glass is it's not actually about a trippy wonderland. The same way Harry Potter isn't actually about wizards. Alice is about life and loss and time and love and forgiveness and holding on and letting go. They just use wonderland and its characters to explore the things we struggle with in life. It is powerful art.
(Spoiler alert? I guess? Not really. I don't know. Look, it's disney and some variation of this plot point is in every movie they make, but I'm going to talk about the artistic portrayal of it, not the plot itself.)
There is a scene towards the end of Alice where everything seems ruined. The audio visual sequence is captivating as it gets more and more drawn out, as everything through space and time becomes ruined. It is all encompassing as it builds and builds and builds until you as a viewer feel the hopelessness that there is nothing left untouched by the ruins. Everything, everything that ever was in any reality or dimension has crumbled to rust. And there is no going forward from there. It's just done. Finished. Ruined.
And as I sat there taking it in, I thought, "That looks like what grief feels like." That is not the parallel the creators were drawing at that moment, but it is where loss leaves you. It is hopeless, it is finished, everything that ever was is ruined and nothing more will ever be. I'm not arguing that as a state of reality, just as the feeling of grief.
I am not a visual artist. I know words are insufficient to communicate so much of what we feel (though I may try). I have not had the experience of art being so powerful as I did while watching Alice. Nature being moving and powerful? Yes. The human spirit? Yes. Books? Yes. Visual or audio visual art? No.
You should definitely see Alice Through the Looking Glass. It has so much to say about life.
We saw Alice Through the Looking Glass last weekend at the IMAX theater. The real IMAX theater at World Golf Village, not the one they call an IMAX at AMC.
I never would have gone- it's too far away when there is a movie theater down the street, it's not my genre, it's too much $$, and if you give me 30 seconds I can come up with twelve more reasons. It's not actually that much money. But as it turned out I won tickets in a giveaway from Jax Moms Blog. (Thanks, JMB!) And since I couldn't excuse my way out of it in the name of not spending money, and because my counseling homework has been to do different things, we went together. A family outing. It took the pressure off that it wasn't on my dime and that my counselor said I didn't have to enjoy new things, just try something outside of our normal routine. I'm sure it sounds silly, but I truly was freed up to enjoy the evening, since it didn't matter if I did or not.
We had a great time! The real IMAX theater is impressive, it wasn't crowded, plus the movie was in 3D, and it's an incredible movie. It's remarkably well done, you should definitely see it.
The thing about Alice Through the Looking Glass is it's not actually about a trippy wonderland. The same way Harry Potter isn't actually about wizards. Alice is about life and loss and time and love and forgiveness and holding on and letting go. They just use wonderland and its characters to explore the things we struggle with in life. It is powerful art.
(Spoiler alert? I guess? Not really. I don't know. Look, it's disney and some variation of this plot point is in every movie they make, but I'm going to talk about the artistic portrayal of it, not the plot itself.)
There is a scene towards the end of Alice where everything seems ruined. The audio visual sequence is captivating as it gets more and more drawn out, as everything through space and time becomes ruined. It is all encompassing as it builds and builds and builds until you as a viewer feel the hopelessness that there is nothing left untouched by the ruins. Everything, everything that ever was in any reality or dimension has crumbled to rust. And there is no going forward from there. It's just done. Finished. Ruined.
And as I sat there taking it in, I thought, "That looks like what grief feels like." That is not the parallel the creators were drawing at that moment, but it is where loss leaves you. It is hopeless, it is finished, everything that ever was is ruined and nothing more will ever be. I'm not arguing that as a state of reality, just as the feeling of grief.
I am not a visual artist. I know words are insufficient to communicate so much of what we feel (though I may try). I have not had the experience of art being so powerful as I did while watching Alice. Nature being moving and powerful? Yes. The human spirit? Yes. Books? Yes. Visual or audio visual art? No.
You should definitely see Alice Through the Looking Glass. It has so much to say about life.
Monday, July 18, 2016
One year
It's strange that tomorrow is one year since Eli died. So much has happened because time just keeps going. I'm a different person than I was the last time I was with Eli. That hurts. Simple things like buying a new planner (I use a July-June planner), or looking for a picture on my phone and scrolling waaaaay back to the last time Eli was alive are simple things, but they are reminders of how long it's been and how ruthless time is. And they hurt.
I remember sitting at the funeral home and the funeral director asking me if Eli's death was sudden. (He then proceeded to use several "at least statement". What a schmo.) The thing was, I didn't know how to respond to his question. Eli was incredibly sick. His chances of survival were low. But the timing of his death felt quite surprising.
It's strange how our minds warp things over time. I have been thinking for some time recently that Eli's death had been imminent and his transplant was iffy. Only because I'm not in that world anymore. But this month I've been following along daily with the updates I posted last July. Man, Eli had really been making progress. And his transplant was kicking ass. I'm so proud of him. And I'm so sorry we couldn't save him.
If I have to be alive, which it looks like I do, then part of me is grateful I've made it a year. Even though it sucks to be this far removed from my kid. I would go back to be with him if I could. But I'm glad the early weeks and months of missing him are behind me. They are so violent. They are full of anxiety attacks and muscle spasms and hysteria. Deep grief has a remarkable physical effect on your body. I had an eye twitch for six months. SIX MONTHS! It drove me insane. I would just put my hand over my eye with light pressure and will it to stop. It didn't. It would last for hours every day. Now I have a level anxiety all the time, but it doesn't peak in anxiety attacks anymore. My eyes don't twitch. My sleep is a bit more routine. Being in the world is a bit less exhausting. I am able to do things like run errands and cook dinner sometimes. Not that I do those things all the time, but I couldn't do any of that for awhile.
I read once that after the loss of a loved one the hole you feel doesn't close up, your life just grows larger around it. That has proven to be true. Although life growing larger and encompassing the hole is exceptionally painful. But it's the way of the world. There are not too many other choices, and none of them are good.
I don't want to face another year, or ten more, or fifty more. But I'll do it. I so want my life growing larger to be a gentle experience, but I know it won't be.
I remember sitting at the funeral home and the funeral director asking me if Eli's death was sudden. (He then proceeded to use several "at least statement". What a schmo.) The thing was, I didn't know how to respond to his question. Eli was incredibly sick. His chances of survival were low. But the timing of his death felt quite surprising.
It's strange how our minds warp things over time. I have been thinking for some time recently that Eli's death had been imminent and his transplant was iffy. Only because I'm not in that world anymore. But this month I've been following along daily with the updates I posted last July. Man, Eli had really been making progress. And his transplant was kicking ass. I'm so proud of him. And I'm so sorry we couldn't save him.
If I have to be alive, which it looks like I do, then part of me is grateful I've made it a year. Even though it sucks to be this far removed from my kid. I would go back to be with him if I could. But I'm glad the early weeks and months of missing him are behind me. They are so violent. They are full of anxiety attacks and muscle spasms and hysteria. Deep grief has a remarkable physical effect on your body. I had an eye twitch for six months. SIX MONTHS! It drove me insane. I would just put my hand over my eye with light pressure and will it to stop. It didn't. It would last for hours every day. Now I have a level anxiety all the time, but it doesn't peak in anxiety attacks anymore. My eyes don't twitch. My sleep is a bit more routine. Being in the world is a bit less exhausting. I am able to do things like run errands and cook dinner sometimes. Not that I do those things all the time, but I couldn't do any of that for awhile.
I read once that after the loss of a loved one the hole you feel doesn't close up, your life just grows larger around it. That has proven to be true. Although life growing larger and encompassing the hole is exceptionally painful. But it's the way of the world. There are not too many other choices, and none of them are good.
I don't want to face another year, or ten more, or fifty more. But I'll do it. I so want my life growing larger to be a gentle experience, but I know it won't be.
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