Almost

I can almost feel his feathery soft hair, almost smell his toddler sweat that beaded up around his hairline and the nape of his neck, almost feel his skinny little body in my arms, sometimes kicking and screaming and sometime snuggling, almost feel the wells of his dimples on my lips when I used to kiss them. Almost.
I can almost sense all those familiar ways I knew him, know him, like how I remember the velvet soft fur of my dog's ear when I was growing up. A couple dozen puzzle pieces are what I hold onto of the thousands that made him up.
It's not him, though. It's who he was. When he was here. Who he is is no more. He wouldn't have that same wispy baby hair if he was here now, at five years old. It would have grown coarser. He wouldn't have that same Mickey Mouse voice. He wouldn't still be carrying around Thomas the Train.
The sensory memories are the closest things I have to him. They are better than photos, or videos, or any of his things we kept. Because I can almost feel him. They are precious, but they are almost. He is light years away.

Merry Christmas

One year ago today we were supposed to go to New Orleans for an unchristmas trip, just our little family of three. It was our first Christmas since Eli's death. Instead, we woke up to Jerry having a terrible stomach virus and a phone call from my dad alerting us that my grandmother had died unexpectedly.  Merry Friggin' Christmas, right?
Here we are. It's been a year. My uncle died in June. A new nephew joined the family in August. It's our second Christmas without Eli. I have not even started grieving for my grandma or my uncle. But nobody gets away scot-free from grief. I know it's there, waiting until I am able to feel a pain besides the loss of Eli. I'm not exactly looking forward to it, but grief is a part of life because love is a part of life. It is what it is.
A few weeks ago my friend Amy took me toy shopping for Eli. After she had reached out to me and I shared my grief-of-the-season (it's hard to see the "big kid toys" in stores and realize Eli would have been the right age for them, and wondering what he would like, what he would be into), she offered to shop for Eli with me and donate the gifts.
Sometimes you are given a choice to keep things surface level or to dive deep and risk vulnerability. As much as you can bear it, dive deep. It is rich and beautiful and hard and worth it down there in the depths.
Amy and I went shopping on what turned out to be her birthday. That is such a testament to her heart, that she would spend her day loving and giving. It was good and hard, but I had more peace driving home than I have felt all year. Truly. What a gift.
The toys were donated to local church who took them to a rough apartment complex for their Christmas celebration. I wanted to go, but I ended up bowing out. Diving deep was too much that day, too early in the morning. I just didn't have it in me. But I know some little 5 year old boys felt loved and cherished that day. That makes me happy.
While Amy and I were shopping we got to talking. More accurately we got to shopping while talking. ;) We lamented some things as mothers and women do, and somehow we made a plan to go Christmas caroling at a nursing home. Not just that it sounded like a nice idea, but that we both had passion for making it happen. Caroling in a nursing home is something I have wanted to do for several years, but I hadn't ever gotten around to planning it with all the other hubbub that arises in December. With Amy and I working as a team we could make it happen.
This morning, facing my second Christmas without Eli, on the one year anniversary of my grandmother's death,
Amy, myself, a few friends, and all of our kids sang Christmas carols to other people's grandmothers and grandfathers. We were perfectly imperfect. It was beautiful.
I didn't put the dates together when we were planning our caroling. This is the day that worked for the nursing home. It could not have been a more perfect way to remember and honor my grandma, who simply adored Christmas and singing.
I am deeply grateful to Amy for listening, responding, and acting with her heart. I am thankful to our friends who joined us and completed our choir of sorts. Some of the friends don't even celebrate Christmas but were all in at the opportunity to show love to people who may be lonely. That is beautiful.
I don't know what tomorrow and the next day will be like. But I had my Christmas this morning.

The art line (a memory)

I am laying on my left hip next to Eli in his hospital bed. My hip aches from always laying on that side so I can face him. We are in PICU. We have a blue quilt over our heads. There are no covers over our legs. After weeks of use, Eli's arterial line has gone bad in his ankle. It's in an artery and it continuously monitors his blood pressure. We have two choices. The doctor can try to rethread the catheter, which will not hurt but is not guaranteed to work. Or the doctor can place a new art line. For a number of reasons based on Eli's medications and his present health, he can have no pain medicine for a new art line placement. It's not like a regular IV; it has to go into a main artery.
We decide rethreading the catheter in the current art line is the best place to start. But you can cut the tension in the PICU room with a knife. This has to work, but there's a reasonable chance it doesn't. I crawl into bed next to Eli and put the covers over our heads. I tell him that the doctor is not going to hurt him but he is going to adjust the art line. At 4, Eli knows what that is. I tell Eli his job is to not move his legs at all. That the doctor and the nurse and mommy and daddy are trying to keep from doing any pokes on him. And then I create a little world under the covers just for us. The bed is being adjusted higher and higher so it is a nice comfortable height for the doctor to get to work. Every light in the room is on. A small tray of tools and equipment is set down on my legs, so now I don't move a millimeter either. I start singing to Eli and it's just the two of us under the covers. It feels like the bottom half of our bodies are detached from the upper half, where it's just the two of us. At least to me. I sing one song after another so that we have something to focus on besides what is happening outside of the covers. Eli lays perfectly still. He doesn't talk or join me in singing. But he cooperates. He doesn't move. We hear the doctor and the nurse communicating quietly as they work, trying desperately to retain this line. I sing every song that I have ever sung to Eli and I start back at the beginning because it's not over yet. I keep us in this world, calm and far away from what is happening at the other end of Eli's body. I don't care what my voice sounds like or who hears it. This is the most serious task of my life. If we want the best for Eli-and the best is to re-thread this line-then my only choice is to make him feel as safe as he has ever felt, while in this cave of a room hooked up to beeping machines with a doctor working on him.
Eventually I hear the sounds of success: The release of breaths no one knew they were holding, jubilant conversing, and a few chuckles of relief. It may have been five minutes or it may have been five light years. My only awareness of time in the world under the quilt was the amount of songs I sang.
The bed is lowered, the instruments and supplies are picked up and my legs are no longer a table. I slowly pull back the covers and Eli and I reenter into his room in PICU.
It was a nice world while it lasted. We have succeeded in providing the very best for Eli. It could have gone the other way. We could be facing a traumatic fully awake and aware procedure. Tonight we exchange smiles, congratulations, and handshakes. We will revel in this victory, at least until tomorrow.

the human brain: making sense of reality since the beginning of human history

On Friday Tyrell got a concussion during his football game. It was technically a clean hit, but my heart didn't feel that way when my baby went down. You know the law of physics that says, "an object in motion stays in motion until an equal or opposite force acts upon it"? That's pretty much what happened. Ty went down hard. But he got up and trotted off the field. Initially I thought he was okay. But shortly afterward I was summoned to the sideline and the athletic trainer started explaining the concussion tests she put Ty through, which parts he failed, and the protocol going forward. Ty finished the game sitting on the trainer's table with ice on the back of his neck for nausea.
On the way home he started feeling worse and was having sharp pains when he breathed. So we went to the ER to get him looked at. All the X-rays and scans came back perfect. A concussion doesn't show up in a ct scan, but the hospital did verify that Ty had no bleeding or fractures in his skull, and that he had no rib fractures or lung collapse. *Just* a concussion. A traumatic brain injury.
When your brain is injured it requires rest in order to heal. How does one rest a brain? Basically, sleep a lot and lay on the couch without doing anything. No screens- cell phones, tablets, TVs, video games, computers, etc. No reading or schoolwork. (Really!) No physical activity that raises the heart rate at all. Rest, rest, and rest some more. That is HARD for anyone, but especially an active and social teenager.
Tyrell woke up Saturday morning feeling and acting like himself. His chest was bruised, but otherwise he felt fine. He slept a lot of the day. By Sunday he was getting stir crazy. I felt bad that he couldn't watch any football at all. He decided to go fishing with a friend in the neighborhood ponds. I figured fishing was about as mindless of an activity as any. I did send him out with a hat and sunglasses to protect his eyes and brain from sunlight. I likely let him fish too long, but I was grateful that he was doing something he enjoyed and not moping at me that he couldn't have his phone.
On Sunday evening Ty heard me talking to my dad about hurricane Matthew and the imminent effects it would have on Haiti. He asked a couple questions, thought for a minute, and said, "I'm going to fish this week and for every fish I catch I'll donate $1 to help Haiti." What a kid. Then it was my turn to ask questions. I asked him to clarify his plan a bit and if he was interested in letting people know who might want to sponsor him. He agreed and I put it out on social media. So far if he catches 100 fish he'll raise over $850 for hurricane relief in Haiti*.
Stay tuned!
As I think through all of these events I am tempted to connect the concussion to the fishing sponsorships. Ty only went fishing (for the first time in many months) because he got concussed and had no other choices he liked. If he hadn't gone fishing, due to the concussion, he may never have thought about how he can help. The human brain wants so badly to say, "this is why this thing happened", to explain away and reason out reality, apply meaning to the meaningless. Just because our brains are inclined to do that doesn't make it true. Ty didn't get a concussion just so he would go fishing and then have a bright idea to use fishing as a motivation to help people. He got a concussion because he took a hard hit in his football game on Friday.
I will say this until I die: not everything happens for a reason.
There is a better way, though. Instead of attempting to pull reason out of unreasonable circumstances, we have the opportunity and the brain function to respond well when we are faced with hard things. We can fully acknowledge our disappointments and tragedies alike and say, "This will not end me. I will respond with grace and goodness." That's not easy and it doesn't make life's hard realities any less hard. It does make life worthwhile. It does make the world a better place. Whether or not you can tell in the trenches, it's a positive move.
The lessons, the personal changes, and the relationship changes are not the reasons that things happen. They are just our human responses to disappointments and crises.



*If you are moved to sponsor Ty as well, pick whatever formula or method works for you: a dollar a fish, a quarter a fish, a dime a fish, or a flat amount. I'll post on Sunday night with how many fish he caught and where he would like anyone to donate. It's the honor system around here. ;)

Eli's tablet

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.

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.

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.