The House That #LoveForEli Built

Right around the new year I woke up to find several notifications from paypal telling me that my friends had sent me money. My groggy brain had no idea why, and at first I thought it was a mistake. Then I realized it wasn't one friend, it was several. What in the world was going on?
I also had about a thousand facebook notifications. Which after taking about a month off of social media at the end of 2016 was pretty fishy.
What could possibly be making my phone blow up like this?
I discovered the intervention of the one and only Jennifer Richardson. She had posted the following on facebook and had gotten quite a reply in a short period of time:

You might have heard of my friend, Lisa Watterson. If you have, you know that she's chosen love in the face of horrible tragedy again and again. This is a beautiful, life-affirming choice, and I always want to be the kind of friend who cheers this on.

She has partnered up with the amazing Rebecca Akridge to do some fundraising for a children's home and school in Haiti, and she now has the opportunity to go there!

However, as I'm sure you are aware, going anywhere and doing anything costs money, and guess what? The Wattersons will have massive hospital bills for life. So let's help Lisa raise $800 in less than a month. If 16 people can offer $50, we're done here (post your name and pledge amount on this thread or in a private message). I know Lisa is also going to make some crochet earrings and crafts to sell if you're interested.

Finally, I have posted this without consulting her or asking her permission at all. 😂 So if you happen to be offended or annoyed, feel free to direct that at me.

Such sweet words, and so typical of her to just do something without asking. ;)
What ended up happening was this: somewhere in the comments someone had the idea to try to get the trip funded before I woke up. Since I am not a morning person and make my own schedule, they had a little bit of leeway...but they did it! By the time I was up and trying to figure out why people were sending me money my trip was fully funded! Simply incredible and incredibly humbling.

What Rebecca and I had done in the fall was organize an online auction to raise money to finish funding a home for a little girl in the scholarship program through The Mission Haiti, whose home had been damaged beyond repair in Hurricane Matthew. There are 53 students in total from the scholarship program who truly need new homes. Many had been sent to be restaveks, child servants, in other people's homes in exchange for food and shelter. Most of them are still serving as restaveks until a home can be sponsored for $4400 for them. There are no safety nets in Haiti.

What happened next was even crazier. More money was pledged than I even needed to go to Haiti, so another friend, Amy, suggested the fundraising keep going and a house be built in Eli's honor. People got behind this idea immediately. Amy and Rebecca connected with the people who run The Mission Haiti to match the idea of Eli's House with one of the student's families. They picked a little boy named Jolixson. He is 5 years old, which is how old Eli would be now. Jolixson's mom died last year. It's been hard for his dad and sister. Their home is now uninhabitable just months after losing their wife and mother. So now we have a little 5 year old boy without his mom, and a mom without her 5 year old boy (me). My son isn't here for me to care for, but I still have this love and I will use it for the rest of my life. We are building a house for Jolixson!

The cost of a small, concrete block home in Haiti is $4400. There is a difference between raising $800 and $4400. We are most of the way to funding Jolixson's house. The permitting process has already begun. It is really happening! But we need to raise the rest of the money.

I put together a T-Shirt campaign because it is a fun and accessible way for people to be involved, and also because I have been asked over the course of months about doing more #LoveForEli shirts. This new design is completely adorable. Jennifer's husband did this design to include the E that my sister-in-law created originally. I think you'll love it. The campaign closes on Sunday, February 5th, so you have until then to order a shirt if you are interested.

If you want to give directly to Eli's House, you can do that here.

To order shirts with a % going to fund Jolixson's house, go here.

Here are photos of Jolixson, graduating from PreK, and Eli with his big brother Ty about a month before he got sick, age 3 1/2.

Thank you for your always and forever #LoveForEli

Child death delegate

My club grew today. My club is always growing. But this time I knew the parents before they crossed the threshold into the life of "after". 

We run in some of the same circles, our kids have been in youth together, we have volunteered together. I know this family; I know their daughter. 

It just sucks, plain and simple. And I have all the complicated feelings. Thanks, grief. 

I got to see my new club members at the hospital yesterday before they were officially club members. I got to see their daughter while she still had blood pumping through her veins, while there was still air in her lungs. She had been declared brain dead the day before. But her body was still alive. She was warm and soft. And just as precious as every other day of the 15 years she spent on this earth. 

Visiting a family whose child is critically ill or on death's door can be sticky for me. I often feel I am a representation of death and therefore hesitate to make contact. As though I am a delegate for the angel of death. While this is untrue, the fact remains that I do represent child death. It would be completely understandable for a family facing the worst to not want to see or hear from me. So I struggle to say or do anything until after. 

These friends were gracious. I happened to have a meeting at the hospital and before I left I inquired with the chaplain to see if this family was open to me coming by. I didn't want to miss an opportunity to connect, but I also didn't want to force myself into anyone's private space. They were incredibly generous and welcoming. Sharing hugs and being in their daughter's room was sacred. Seeing all of the IV pumps, tubes, and machines, hearing the beeping alarm of a finicky pump and the loud whooshing of air forcing pressure into her lungs was familiar. It was a different place than I had spent the last few months of Eli's life, but the scenery was the same. 

It would be expected for me to be uncomfortable or emotional in a children's hospital. It is a common experience for bereaved parents. I'm really not. I feel confident in a hospital. I know how it works. It's familiar and predictable as far as processes and procedures. Hospitals are serious, but not upsetting for me. 

The grocery store that is near the house we lived in for most of Eli's life? Oh my that place is so sad. It's alive with memories of my little guy. I went there yesterday for the first time in a long time. I was just in the area and needed to pick up a few things. I didn't think anything of it. But once inside, every department and aisle made me moan with heartache. I remembered opening the dairy case to get milk with Eli in the cart. I remembered taking him to the bakery to pick out a cookie- "Chocolate chip or sprinkles today?" "Chawkwit chip" That store is filled with echos of Eli and I didn't realize it until I went in. 

Grief is different for everyone. 

I know these new sojourners will receive an abundance of love and support. But they'll still have to find their own way. We all do. 

If you are a praying person, please pray for the Armga family. 

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I was thinking about this picture this morning and I had to find it. I dislike it for so many reasons: it's horribly back-lit, the angle is unflattering, I hadn't washed (or brushed?) my hair in days, you can see how short my chewed up nails are. But even the moment I took it I knew it was a keeper, if just for me. Eli had been sick for days. We were filthy and sick of being sick. But we were on the couch playing my ukulele and the kids' toy guitar, just randomly strumming and making faces. It was a moment in time where Eli and I were perfectly tuned into each other. It was fun and funny and fleeting. I love Eli's face. He's purposely being so serious. :)

I remember the feel of his little arms around my neck and his sticky sweat where his head rested on my chest. 

Play the toy guitar. Take the picture. Even if you haven't showered in days and all evidence points to you not even owning a hairbrush. 

I still am not thrilled with the composition of this picture. But I love the moment it captured.

Real life is so precious. 

The ugly truth. And also love.

There is a child who it looks like will be joining Eli in the after, and whose family will be joining my club. He has an immunodeficiency, had a bone marrow transplant at Duke several months ago, and was very recently transferred from the bone marrow unit to PICU with breathing issues. It's not said and done, but they are very nearly out of options. Mostly they are waiting. Waiting for a test result, waiting for their child to either have a better day or a worse day so decisions can be made. Waiting for the doctors to come up with something. Waiting for God to perform a miracle. Waiting.
God dammit.
It is heartbreaking to know that another family is going through every bit of trauma we did and will leave Duke with neverending heartache.
It is also complicated. I have so many conflicting feelings.
I hate that this child is dying. I hate that he and his family have gone through so much- being uprooted, away from their community and support system, financially decimated, and suffering, so very much suffering.
I am deeply sad for this family.
Like a switch, it triggers anxiety and the hopelessness of depression. I can see, hear, and feel every detail (even the ones not shared. Especially those.) because I KNOW what it's like to watch the agonizingly slow trainwreck of your child dying in that very place. Of watching the machines and WILLING them to display better numbers, and nothing happening.
My brain is so foggy today. I'm having a hard time typing sentences. I keep retyping the same words and deleting them because I forgot I already wrote them. It feels like trying to move inside a jar of molasses.
I am numb because I cannot possibly take in more pain.
There is a sliver of envy as well. I wish I was still with my son. I wish I could touch him and sing to him and read to him and give reports on his progress.
I don't really want to be back in that PICU room. It was a brand of hell. But at least Eli was there.
I have mentioned before that one of my grief responses has been self-righteousness. I know it's ugly. It feels good, man. Like a drug. Since starting antidepressants along with ongoing therapy I have had the brain space and energy to work on that particular crutch. But a low blow like this pummels me back to the trenches. And my old survival tactics emerge. And here I am, in my ugliness, thinking, "I knew it. I knew this would happen. I've been waiting to see when it would." I mean, what the hell is wrong with me? That's disgusting. I reject it. But it's still there, just a hint. There is a fine line between feeling self-righteous about this and just plain being a pessimist. I am guilty of both. My experience absolutely has a hold on my outlook for pediatric immunology and oncology patients. But I confess it's not simply that. I don't think. It feels like there is a shred of self-righteousness mixed in the pessimism.
This makes me think about our doctor at Duke, whom I will always adore. The man never gives up, never counts his patients out. He goes down swinging. What a slap in the face my attitude is to his eternal hope and effort that this kid and this kid and that kid and that one could make it. They could, you never know. His approach is to be as proactive as possible until there is nothing left to do, and then you provide as much support as makes sense and see what happens. Sometimes they make it. This little guy whose future has my brain in a tumble today could pull through. I don't see it happening, but it could. I see. "Oh my god, he's dying the same way Eli did."
I'm so sorry for this boy's family that it has come to this. I wish none of us knew all those medical words and what the numbers mean, or this level of pain. I know no matter what happens they will survive, somehow. It's such a long road, though. No one deserves this.

A friend of mine bought me this mug recently. I'm drinking tea out of it today. It's a nod to the musical, Rent. If you don't know what I'm talking about, here is the song.

It's a good reminder. As much pain and sorrow as we endured in Eli's sickness and death and in grief, we experienced so much more love with him, for him, from him, because of him. Love was with us and still is. Love will be as constant a companion as pain for this family facing the worst possible outcome.

It's just so complicated to have all these feelings and watch others experience the same brutal loss. 

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.