Happy Birthday, Maxwell!

Today is Maxwell's first birthday! But he's celebrating in heaven and his parents and big sister celebrated here on earth. Ugh! I know. 

Maxwell was Eli's next door neighbor at Duke in BMT (bone marrow transplant unit) and also in PICU. He was born with leukemia and his parents found out when he was one month old. After that Maxwell fought every day of his life. He gifted the world nine extra months to know him and learn from him, because he kept fighting.

For Maxwell's birthday his parents asked friends to do random acts of kindness in his honor, but also to tell his story. I wanted to do something meaningful. I started the day making a small donation in Maxwell's honor to Bryant's team who will be participating in a cancer walk next month. 

I wanted to do more, but today is also the anniversary of when Eli got sick. Or rather, when the dam broke and his condition finally manifested itself. One year ago tonight I was holding a sleeping Eli in an ER triage room, while we waited to be transferred up to Weaver 4 for the first time (of many). Remembering that day without my little man to hold in my arms now sucks just as much as you think it does. So today I went to the beach with a friend. 

But I still thought about Maxwell. 

I have a friend who I knew years before either of us had kids. In the last year she has been dealt an exceptionally crummy hand in life. Last week I thought about bringing her dinner on what I knew would be an intense day for her. But I didn't. I went back to bed. Now that it was Maxwell's birthday and I had been charged with performing an act of kindness I had the perfect opportunity to try again to bless my old friend. 

My beach friend and I went to Costco and bought several meals and a variety of lunch box food and snacks. We came home and made PB&J sandwiches out of 2 loaves of bread and packed dozens of snack baggies with carrot sticks and ranch cups.

 I took a giant box of prepared meals and snacks to my old friend tonight. I told her about Maxwell and his fight. I told her that at Maxwell's funeral his mom said, "Maxwell fought so hard for life because life is worth fighting for." I told her that so often I say things don't matter, or nothing matters, because that's what it feels like right now. But I also told her that was wrong, that SHE matters, and her kids matter, and what she is doing in her life matters. This friend is fierce. She refuses to sink. She absolutely insists on rising from the ashes no matter how long it takes or how hard she has to work (she's doing pretty amazing at it). She is #MaxwellStrong.

Happy birthday in heaven, Maxwell! 

One month

I don't know why or how, but I've survived a month without Eli. 

Last night I stared down the impending doom of this day and I wanted to die. It hurts so much and there is precious little escape. 

My dad had been planning a day trip to visit my grandpa and asked if I'd like to go. It sounded like a reasonable diversion at least. My grandpa lives near where I grew up, so it's always wonderful to see him and also tack on a visit to a person or place that is meaningful to me. 

This morning I got up early to leave for our day trip. I forgot my anxiety medicine. I still don't take it all the time, but it's helpful when things get overwhelmingly difficult. Anyway, that was not a helpful move today. 

I missed Eli so much this morning. I asked him to paint me a picture in the sky. And you know what? For our 4 hour trip south the sky was bright blue with clouds that were lines going in different directions, just like when Eli used to say he was drawing snakes. 

We had lunch with my grandpa and then we went over to my old high school to visit my color guard and band instructors. It was good to see them; they are some of the truest people I know. Unbeknownst to me, my dad had gotten my old sabre to my guard instructor to be retaped. It was special and symbolic to have that done. My sabre represents a journey of daring greatly. My friend and instructor also gave me a beautiful necklace honoring both of my boys. 

Since it was band camp, I had the great honor of addressing the current students. I read the Man in the Arena quote (google it) and expounded on it a little. It was a special visit. Most of it was unexpected. I was just going to say hi and steal a few hugs. 

After that we went to see a dear friend who I knew from church when I was a teenager. I didn't know until Eli died that this friend lost a little boy nearly sixty years ago. 

It was almost holy to sit with her and ask about her son. I needed to know about my new life from someone whose loss isn't so new. She showed me a picture of her son and told me her story of losing him. It was quick and her loss was terrible. And then, knowing the bigger parts of her story over the last six decades, it was incredible to know how much joy she has experienced while still bearing her loss. We cried, but I left hopeful. 

I was dreading today, but it has been filled with comfort. Not easy, but grace filled. The day isn't over yet. We'll see what happens. I have plans to take it very easy once we get home. 

I doubted it yesterday in anticipation of today, but still God is big enough and shows up. 

Happy Birthday Bryant!

Today is Bryant's 7th birthday. Bryant is our friend who we met at Wolfson Children's Hospital last fall. He finished his fight against cancer last November and is in heaven. 

Bryant was the first little friend we lost. I was shattered. The next day the sun rose and shined all day and I was incredulous. I told Jerry I didn't want to live in a world without Bryant in it.

We used to call Eli the mayor of the 4th floor, because he thought he ran the show in the hematology/oncology unit at Wolfson. And then we met Bryant. If Eli was the mayor, Bryant was the governor. 

Bryant knew how everything worked, what days different activities would be, and he kept track of who came in the unit every time he heard someone ring the bell to be allowed access. 

Bryant had a huge personality. He brought the party to Weaver 4. His nurse once told us she had to stop him from going into Eli's room in the middle of the night. Bryant just wanted to play with his buddy. ;) Instead he drew a picture and wrote a note with a black crayon that said "Come out side your room" and slipped it under the door. I found it in the morning. Man, I wish I still had that note. 

Eli and Bryant were the fastest of friends. Maybe they somehow knew they didn't have much time with each other? Seeing them play together brought me so much joy. It was as though they weren't even sick. 

When Bryant died I didn't know what to say to Eli. They had both been in and out of the hospital so much that Eli only knew Bryant in the hospital. Eli was 3 1/2, so I didn't bring it up to him. I waited until the next time he asked about Bryant and then I just told him that Bryant didn't live here anymore, that he lived with Jesus. I think Eli asked me a few times and I just said Bryant lives with Jesus now.

I have no idea if that was the right way to do it. I had no idea what was around the bend for us. 

At some point during the night after Eli passed, I looked at Jerry and with a smile and tears said, "He's with Bryant now. I bet they're having so much fun."

I bet Bryant is the informal governor of heaven, just like he was on Weaver 4. I bet he keeps an ear out for new arrivals and welcomes each new soul. I wonder what he and Eli and Wyatt are doing. 

Happy Birthday in heaven, Bryant! You are so very loved and missed by so many. 

The rainbow

This evening I was driving Ty to youth night at church. I'm still getting the hang of getting to places from our townhouse. There are always at least three or four ways to get anywhere and I have to think about what I'm doing and where I'm going. This is especially challenging with my scrambled egg brain. What does that have to do with anything? I was sitting at a traffic light that I may or may not have been at if I was thinking clearly and I watched a rainbow develop before my eyes. 

I was at a traffic light heading east. It had been storming most of the afternoon and the storm was heading out to sea. The sky was still apocalyptic to the east as the storm blew out. I was staring off into the sky and I thought, "Wow, that almost looks like a shadow of a rainbow." As I kept looking, in a matter of seconds, it got brighter and brighter. Then I saw a faint second rainbow above the now vivid first one. A double rainbow. 

I told Ty to look at the rainbow, and then the double rainbow. He oohed and ahhed briefly and then he said the rainbow was from Eli. 

TIMEOUT. I know a few parents of deceased children who love seeing rainbows, who feel connected to their child when they see one, who attribute rainbows to their child's doing. And you know what? They can totally do that. They can believe that. It's not crazy. But I'm really cynical in my own life and I can't believe Eli makes rainbows for me. Believe me, I would love to believe that. But I currently don't. 

TIME IN.

Ty said Eli made the rainbow. I asked him if he believed that. He said yes. Then he said he knew it because it was a double rainbow and Eli was a one-upper, so he would have made an extra special rainbow. I was already crying and then I was laughing. He had a point. Eli was a one-upper for sure, especially with Ty. 

I dropped Ty off at church and got in my friend's van to ride to another friend's house around the corner. I relayed the story to my friend about Ty attributing the double rainbow to Eli because he was a one-upper. Then I told her that I just didn't believe it. How many people in Jacksonville have lost a loved one and are thanking their own deceased person for the very same rainbow? I just can't get there.

But as I'm explaining why I don't believe this, the rainbow starts getting BRIGHTER and FATTER. You could see every color of ROYGBIV. And then there was an extra layer under the indigo/violet area of MORE indigo and violet. It was practically glowing. 

I am a lifelong Floridian. We have intense storms and beautiful rainbows. I have seen hundreds of rainbows in my life. I've never seen anything close to the rainbow I saw today. It was almost as though the more I denied the rainbow being from Eli, the brighter and more intense the rainbow became. 

I still don't really think it was Eli. But it was beautiful and spiritual. I'm glad I was out of the house to see it. 

The Perseids

We're headed to the beach at midnight to check out the perseids meteor shower. I saw one incredible meteor already from the car. 

If Eli was here we never would have done this. I would have been home falling asleep to a movie on cable with the baby monitor buzzing static from my nightstand. 

But Eli's not here. So we do new things, or at least different things. We don't yet keep much of a schedule. 

I'm anxious and hopeful we'll be able to see the meteor shower from the beach. Jerry is driving us and Ty's buddy who is sleeping over is along as well. Everyone is in a light, joking mood. We haven't intentionally spent much time together as a family and it's easier with Ty's friend here. Takes a little pressure off to "feel like a family". 

It's a strange mix of feelings. I love the night. Always have. I love being able to go watch a meteor shower, and taking my big boy to go see one. But the only reason I get do it is because Eli is gone. 

Getting to go find a dark place for a meteor shower doesn't make it okay or sweeten the shit deal we got. It's not a silver lining. It's just how life is right now. 

A month ago

I have lots to say. But it's mostly still in my head. I've jotted some notes and thoughts, but that's about it.
Tonight all I can think is one month ago. Eli started to do a little bit better with his breathing and I convinced the doctors he could handle the CT scan. The scan revealed pneumonia hiding in his lung behind his heart, which ultimately caused the respiratory failure, which is listed on the death certificate.
I wish time would stop passing. I didn't like going from July to August. Now August is flying by. It's getting longer since I last held him. I hate that.
One of our Duke BMT friends recently hit day +93. That was how many days Eli made it.

That time I went into a nail shop and everyone stared at me.

A couple days before Eli's memorial service I decided I needed to address my looks. 6 months of irregular hygiene and zero beauty regimen, on top of the 11 months of stress doesn't exactly do great things for a person's face. Knowing I would be standing before a crowd of people in a few days, I decided at the bare minimum I needed an eyebrow wax, and then I could reassess from there. 

Of all the salons and nail shops I've ever tried, there is actually only one place that does not cause my skin to break out where it's been waxed. Unfortunately because an eyebrow wax takes approximately 7 minutes total, I've taken Eli with me a time or two in the past to this one and only nail shop. Also unfortunately, the folks that own said nail shop I go to have a little boy a year or so younger than Eli. Eli has played with this little boy before. 

I thought about how I really needed to go and address some situations with my face so I could be as comfortable as possible at Eli's memorial service. I also thought about how I couldn't possibly go and have to answer questions about where my son was. Naturally I made a friend take me. 

Amy and I get to the nail shop at 10:30am on the day before Eli's service, a Friday. Amy goes in first to more or less say, "Hey, my friend's kid just died. Don't ask about him. She needs her eyebrows waxed." and comes back to the car to get me. We go in the nail shop and it is packed. There are four or five people getting a pedicure and at least another three waiting. The man who owns the shop asks me what I want. The entire population of the nail shop stares at me. I tell him I want my eyebrows waxed. Everyone keeps staring. He apologizes to both me and Amy and says he doesn't have time for an eyebrow wax right now. The staring continues. We stammer through a brief conversation on whether or not we had an appointment (nope) and what time later in the day they can address my eyebrows. It's possible I was imagining things (I wasn't), but the staring from every customer in the store never waned. 

The staring I've experienced is one of my least favorite things in life. It's like being a celebrity, only a thousand times more terrible. Who doesn't love being stared at? Oh just everyone on the face of the earth. 

Tomorrow we're going to church. It's been a long time. I'm looking forward to worshipping together with our people, but I'm also a tad nervous. I'm nervous about the possibility of people staring and about the possibility that I'll perceive staring that isn't happening. Either way that sounds super uncomfortable and a touch crazy, so it should be fun for us all. ;)

Going back to church will likely be easier than I'm anticipating, or harder for different and/or unexpected reasons. But it's just another "normal" thing I get to go do without Eli. 

*dont get your undies in a bunch. You probably haven't stared at me. Looking and greeting are different than staring.