I don't know if you've ever heard of this musical called Hamilton about some of the U.S. founding fathers, but I quite enjoy the soundtrack. And because music is so very loaded for me, the Hamilton soundtrack is one that I can mostly enjoy without too many intense feelings. I mean, there is the whole part where Hamilton's son dies and they sing about it and I wish a train would hit me (sarcasm!), but mostly I stick to the first 3/4 of the musical. ;-) Music that I can enjoy is so sparse still that I listen to Hamilton at least five days a week. I still can't quite rap along with Lafayette, but I'm working on it.
Almost none of the characters are legit "good guys". Alexander Hamilton sends out all kinds of red flags for narcissism. And the antagonist Aaron Burr who shoots Hamilton in a duel is altogether unlikable.
Except I totally get Aaron Burr. Lin-Manuel Miranda said that if Hamilton's reaction to loss and tragedy is to go go go full speed ahead, Burr's reaction is to wait. Burr sings this song called "Wait For It" where he reflects on the loss of his parents, the pain of not really being wanted by any of his relatives throughout his childhood, his unlawful love affair with a woman married to a British officer, and he says if there was a reason for these things to happen to him, he's willing to wait to figure it out. Where Hamilton ignores the pieces of the puzzle and accelerates forward, Burr sits back and ponders the pieces of the puzzle, turns them over, reexamines them, considers them.
I get it. I feel frozen in place most of the time. What do I do now? I have no idea. I do things. I try things. But I have no idea what I'm doing. My sense of purpose has been highly modified and what do I do with that? I have yet to figure it out.
I had a meeting with the president of the local children's hospital last week. He met with me for two hours. I shared Eli's story with him. We talked about the future of healthcare for kids like Eli. It was challenging, but felt good to use the science and medical knowledge that is still floating around in my brain. He gave me so much to think about. It was a remarkable meeting.
But what do I do? I come home and I think. And I ponder. And I consider. And I think some more. I Wait For It.
I'm doing things. I'm working. I'm running. I'm raising more money for houses for Haiti. But I'm still mostly bobbing in an ocean of uncertainty with no land in sight.
Aaron Burr wasn't a great dude. He was political to a fault- I don't mean he was passionate, I mean he was a supreme manipulator. But I get LMM's version of Burr. He says, "I'm not falling behind or running late/I'm not standing still I am lying in wait"
Me too.
Friday, March 17, 2017
Wednesday, March 15, 2017
What to do for a family when a child dies
How to help someone who has lost a child
Pregnancy, infant, and child loss happens everyday. It happens to regular, unsuspecting people. And it's not going to stop.
I do believe that our job on this earth is to meet people in their suffering. Not make it better, not fix it. Just sit in the trenches, hold someone's hand, and witness their pain. Don't look away because it's uncomfortable.
The question is how do you provide support when you can't (and shouldn't try) to fix it?
I am in the unfortunate position to know and have written a list of dos/donts/ideas to a few people over the last several months. So here it is, more or less.
I'm posting this as a tribute to a little boy named Graham who died today.
This is from my perspective as a bereaved parent. A lot of it will apply to other very close losses. Keep in mind, what is comforting for one may be grating for another.
1. There are no magic words. You don't know what to say because there isn't anything to say that will communicate what you are feeling towards this person. That doesn't mean you shouldn't say anything. Recognize the loss. Say the deceased person's name. If you knew the person, say something you liked about them.
Example: "I was so sorry to hear about Eli. He is such a special little boy. I love when you would share pictures of him smiling. It always made me smile."
2. You can never make the bereaved person sadder or remind them of their loss by mentioning their child. They already know. It does not leave their heart or their brain for one second. They feel their loss all of the time. You bringing it up will let them know you haven't forgotten.
3. Set a reminder on your calendar every month on the anniversary of their person's death. Every month that date rolls around, send them a text or a message to say you're thinking about them, or praying for them, or you love them.
4. Food. This one is tricky. The immediate inclination when a person dies to cook meals for their family. That CAN be helpful. Or it can be overwhelming. For me, the idea of people stopping by my house was too much. Even over six months later I didn't feel up to having people in my home. It still felt intrusive. My home was my safe place. I know some people who in the face of losing their child wanted to do their own cooking because it felt like something they could control. So. Someone who is close to the bereaved person needs to find out what they are comfortable with. I had a small group of "safe" people who came over regularly to help me just sort through the boxes and boxes of stuff we had accumulated over seven months in the hospital. Those people brought me food, and they even became point people at times for others to drop off meals to be delivered to me.
Another option for food delivery with without intrusion is to put a cooler on someone's front porch and have food dropped off in the cooler at a certain time (ex. between 5-6pm). That way whether it's hot or cold and needing to be heated, it will stay the right temp in the cooler and the bereaved person can check the cooler after the appointed drop off time.
And if you've never tried it, takethemameal.com is great for organizing a meal schedule.
5. Offer specific help. They can't call you if they need anything because they have no idea what they need. And even if they did, they don't have the emotional energy to call.
Bring them toilet paper and paper towels. If they aren't expecting you, leave it on the doorstep.
Ask when garbage day is, then tell them you'd like to stop by each week to take the garbage out to the street. If they say okay, then actually do it.
Take care of their yard work.
Ask if you can do dishes/clean toilets/wash and fold laundry.
DONT DO THINGS THAT CANT BE UNDONE WITHOUT THEIR APPROVAL. Like laundry. You'd hate to be the one who washed the deceased person's smell off their clothes.
A gaggle of friends came and painted our house because we had moved in the middle of Eli's illness and I wanted our house to feel like a home. Such a gesture of big love.
6. Is there a sibling? Siblings get forgotten in child loss. Everyone is focused on the parent(s). If the sibling was already close to you before the loss, offer to take them to do something. Go bowling, go to an arcade, go out for donuts, anything. It's helpful for the whole family for the surviving sibling to receive some extra and focused attention on them. It takes a little pressure off the parent(s) and it helps the child(ren) have some moments to just be kids.
If you didn't have a relationship with the child before the loss, it is not entirely appropriate for you to start one in the midst of this tragedy. But you can buy a toy/game/activity for the living child and drop it off. Remembering and showing love to the living child is one of the best ways to care for the parents.
7.
Go to the funeral. I know it sucks. I wrote and gave my 4-year-old son's eulogy. Don't talk the person's ear off. Go. Be brief in your visiting. Go home. It can be helpful to share a memory about the deceased person because words are generally inefficient and awkward. Awkwardness is okay. Grieving people get used to being awkward.
8.
Learn the Ring Theory of care and support. It's one diagram and you'll never forget it once you read it. It's also applicable to every serious illness, tragedy, and death you interact with for the rest of your life.
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
9.
Gifts. Gifts can be touchstones when there is nothing else to say. A friend got me a personalized necklace with Eli's name and birthstone and a sweet saying that I wore for months. Someone else had a star named for Eli. Another friend sent a window hanging with Forget-me-not flowers pressed inside. Someone else had Eli's name embroidered on a kid sized Georgia bulldogs jersey (Eli's fave). Another person made a quilt based on some art I had posted of Eli's online. A friend crocheted a blanket. A different friend sent me a necklace she saw that reminded her of my love for Eli. That same friend sent me a children's book she had been reading to her kids that made her think of Eli every time. I could go on and on. Eli had a huge effect on the world in his short life and people responded so lovingly to my family.
If it takes a village to raise a child, it also takes a village to grieve a child.
My personal recommendations are:
-A personalized piece of jewelry with the child's name. Etsy has incredible choices, a lot in the $30-$40 range. (www.etsy.com)
-It important to a grieving mom that all of her children are recognized. Especially in the situation of a stillbirth, consider personalized jewelry with all of her children included. Etsy again has the best choices. (www.etsy.com)
-name a star after the child. It's a crazy time after your child dies. I liked looking at the constellation where my son's star is from my driveway. The star wasn't him, but he wasn't here and the star was a thing I could see.
-books are hard because when you're deep in grief concentration is nil. She may get to that book and she may not. It took me a couple months to be able to read a paragraph and know what I had read. Books aren't bad, they're just tricky.
Sometimes books are meant with love but the message in the pages can cause more pain, not peace. For example, I walked into lifeway christian store several months after Eli's death. I spent about an hour perusing books and do you know there was one single book in that whole store that didn't feel uncomfortable like an itchy sweater? That book is A Grief Observed by C.S. Lewis. Lewis writes the truth- that it hurts, that the shear weight of the loss is impenetrable by hope at times. Lewis is raw and lays it out there. It was like a balm because it was real. It wasn't another author trying to wash over my pain with platitudes. Platitudes are for people who are afraid of suffering, not people who are suffering. When I read words such as, "She could not mourn....She wished only to cease, to be no more, as if sunk in some profound sleep devoid of wakening" (-Tanith Lee) I don't feel worse or suicidal. I feel understood. I feel less alone.
-memorial gifts. Often a family will designate where they would like gifts given in lieu of flowers. Do this. Even if it's $5. The organization will send a letter to the family letting them know the gifts that were given and by who (unless it is given anonymously). This is a means of silent support. The family will know you care and be touched that others were helped because of their child.
-other memorial gifts. Plant a tree in the child's honor- either at the family's house and with their permission (and be prepared to go take care of it yourself until it's self sustaining because the family has zero ability to handle that. If you can't or won't take care of the tree don't plant it) or with an organization where a tree can be planted in a person's honor. Google it.
If there is a certain activity the child liked you can give in their memory through World Vision or other relief organizations. My parents buy soccer balls and a family of ducks for children and families in abject poverty through World Vision in Eli's memory every year because he loved playing soccer and he loved feeding the ducks. Generally when you give in someone's honor or memory you are emailed a card to print out and give to the person or family.
10.
An open ended weekend getaway. If you have connections or means it can be nice to gift the bereaved parents a weekend stay at a hotel or bed and breakfast. If you are planning on doing this I would mention it to the family and let them know you will follow up with them in a few weeks. And then maybe a month or so after the funeral mention it again and ask them if they're open to it and if so to give you a couple weekends that would work for 1-2 months out. Losing a child takes an enormous toll on a marriage. We are over 18 months out and still spinning our wheels and trying to love each other well and failing hard (much harder than we ever used to with much more regularity). Men and women, mothers and fathers just grieve differently. It can feel like banging your head against the wall. Some time away won't solve everything, but it will be a nice reprieve.
11.
Just say the child's name. Any chance you get, use the child's name in a sentence to the parents. I remember crying to a friend and asking her to promise me she'll always talk about Eli and say his name to me. I didn't want people to stop saying his name. But they do, and that's life. As time goes on people say less and less about the child, much less their name. It is a gift to hear someone use Eli's name.
This is a work in progress. Some of these I wrote a year ago and some I wrote tonight. I suspect there may be more that I add over time.
Pregnancy, infant, and child loss happens everyday. It happens to regular, unsuspecting people. And it's not going to stop.
I do believe that our job on this earth is to meet people in their suffering. Not make it better, not fix it. Just sit in the trenches, hold someone's hand, and witness their pain. Don't look away because it's uncomfortable.
The question is how do you provide support when you can't (and shouldn't try) to fix it?
I am in the unfortunate position to know and have written a list of dos/donts/ideas to a few people over the last several months. So here it is, more or less.
I'm posting this as a tribute to a little boy named Graham who died today.
This is from my perspective as a bereaved parent. A lot of it will apply to other very close losses. Keep in mind, what is comforting for one may be grating for another.
1. There are no magic words. You don't know what to say because there isn't anything to say that will communicate what you are feeling towards this person. That doesn't mean you shouldn't say anything. Recognize the loss. Say the deceased person's name. If you knew the person, say something you liked about them.
Example: "I was so sorry to hear about Eli. He is such a special little boy. I love when you would share pictures of him smiling. It always made me smile."
2. You can never make the bereaved person sadder or remind them of their loss by mentioning their child. They already know. It does not leave their heart or their brain for one second. They feel their loss all of the time. You bringing it up will let them know you haven't forgotten.
3. Set a reminder on your calendar every month on the anniversary of their person's death. Every month that date rolls around, send them a text or a message to say you're thinking about them, or praying for them, or you love them.
4. Food. This one is tricky. The immediate inclination when a person dies to cook meals for their family. That CAN be helpful. Or it can be overwhelming. For me, the idea of people stopping by my house was too much. Even over six months later I didn't feel up to having people in my home. It still felt intrusive. My home was my safe place. I know some people who in the face of losing their child wanted to do their own cooking because it felt like something they could control. So. Someone who is close to the bereaved person needs to find out what they are comfortable with. I had a small group of "safe" people who came over regularly to help me just sort through the boxes and boxes of stuff we had accumulated over seven months in the hospital. Those people brought me food, and they even became point people at times for others to drop off meals to be delivered to me.
Another option for food delivery with without intrusion is to put a cooler on someone's front porch and have food dropped off in the cooler at a certain time (ex. between 5-6pm). That way whether it's hot or cold and needing to be heated, it will stay the right temp in the cooler and the bereaved person can check the cooler after the appointed drop off time.
And if you've never tried it, takethemameal.com is great for organizing a meal schedule.
5. Offer specific help. They can't call you if they need anything because they have no idea what they need. And even if they did, they don't have the emotional energy to call.
Bring them toilet paper and paper towels. If they aren't expecting you, leave it on the doorstep.
Ask when garbage day is, then tell them you'd like to stop by each week to take the garbage out to the street. If they say okay, then actually do it.
Take care of their yard work.
Ask if you can do dishes/clean toilets/wash and fold laundry.
DONT DO THINGS THAT CANT BE UNDONE WITHOUT THEIR APPROVAL. Like laundry. You'd hate to be the one who washed the deceased person's smell off their clothes.
A gaggle of friends came and painted our house because we had moved in the middle of Eli's illness and I wanted our house to feel like a home. Such a gesture of big love.
6. Is there a sibling? Siblings get forgotten in child loss. Everyone is focused on the parent(s). If the sibling was already close to you before the loss, offer to take them to do something. Go bowling, go to an arcade, go out for donuts, anything. It's helpful for the whole family for the surviving sibling to receive some extra and focused attention on them. It takes a little pressure off the parent(s) and it helps the child(ren) have some moments to just be kids.
If you didn't have a relationship with the child before the loss, it is not entirely appropriate for you to start one in the midst of this tragedy. But you can buy a toy/game/activity for the living child and drop it off. Remembering and showing love to the living child is one of the best ways to care for the parents.
7.
Go to the funeral. I know it sucks. I wrote and gave my 4-year-old son's eulogy. Don't talk the person's ear off. Go. Be brief in your visiting. Go home. It can be helpful to share a memory about the deceased person because words are generally inefficient and awkward. Awkwardness is okay. Grieving people get used to being awkward.
8.
Learn the Ring Theory of care and support. It's one diagram and you'll never forget it once you read it. It's also applicable to every serious illness, tragedy, and death you interact with for the rest of your life.
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
9.
Gifts. Gifts can be touchstones when there is nothing else to say. A friend got me a personalized necklace with Eli's name and birthstone and a sweet saying that I wore for months. Someone else had a star named for Eli. Another friend sent a window hanging with Forget-me-not flowers pressed inside. Someone else had Eli's name embroidered on a kid sized Georgia bulldogs jersey (Eli's fave). Another person made a quilt based on some art I had posted of Eli's online. A friend crocheted a blanket. A different friend sent me a necklace she saw that reminded her of my love for Eli. That same friend sent me a children's book she had been reading to her kids that made her think of Eli every time. I could go on and on. Eli had a huge effect on the world in his short life and people responded so lovingly to my family.
If it takes a village to raise a child, it also takes a village to grieve a child.
My personal recommendations are:
-A personalized piece of jewelry with the child's name. Etsy has incredible choices, a lot in the $30-$40 range. (www.etsy.com)
-It important to a grieving mom that all of her children are recognized. Especially in the situation of a stillbirth, consider personalized jewelry with all of her children included. Etsy again has the best choices. (www.etsy.com)
-name a star after the child. It's a crazy time after your child dies. I liked looking at the constellation where my son's star is from my driveway. The star wasn't him, but he wasn't here and the star was a thing I could see.
-books are hard because when you're deep in grief concentration is nil. She may get to that book and she may not. It took me a couple months to be able to read a paragraph and know what I had read. Books aren't bad, they're just tricky.
Sometimes books are meant with love but the message in the pages can cause more pain, not peace. For example, I walked into lifeway christian store several months after Eli's death. I spent about an hour perusing books and do you know there was one single book in that whole store that didn't feel uncomfortable like an itchy sweater? That book is A Grief Observed by C.S. Lewis. Lewis writes the truth- that it hurts, that the shear weight of the loss is impenetrable by hope at times. Lewis is raw and lays it out there. It was like a balm because it was real. It wasn't another author trying to wash over my pain with platitudes. Platitudes are for people who are afraid of suffering, not people who are suffering. When I read words such as, "She could not mourn....She wished only to cease, to be no more, as if sunk in some profound sleep devoid of wakening" (-Tanith Lee) I don't feel worse or suicidal. I feel understood. I feel less alone.
-memorial gifts. Often a family will designate where they would like gifts given in lieu of flowers. Do this. Even if it's $5. The organization will send a letter to the family letting them know the gifts that were given and by who (unless it is given anonymously). This is a means of silent support. The family will know you care and be touched that others were helped because of their child.
-other memorial gifts. Plant a tree in the child's honor- either at the family's house and with their permission (and be prepared to go take care of it yourself until it's self sustaining because the family has zero ability to handle that. If you can't or won't take care of the tree don't plant it) or with an organization where a tree can be planted in a person's honor. Google it.
If there is a certain activity the child liked you can give in their memory through World Vision or other relief organizations. My parents buy soccer balls and a family of ducks for children and families in abject poverty through World Vision in Eli's memory every year because he loved playing soccer and he loved feeding the ducks. Generally when you give in someone's honor or memory you are emailed a card to print out and give to the person or family.
10.
An open ended weekend getaway. If you have connections or means it can be nice to gift the bereaved parents a weekend stay at a hotel or bed and breakfast. If you are planning on doing this I would mention it to the family and let them know you will follow up with them in a few weeks. And then maybe a month or so after the funeral mention it again and ask them if they're open to it and if so to give you a couple weekends that would work for 1-2 months out. Losing a child takes an enormous toll on a marriage. We are over 18 months out and still spinning our wheels and trying to love each other well and failing hard (much harder than we ever used to with much more regularity). Men and women, mothers and fathers just grieve differently. It can feel like banging your head against the wall. Some time away won't solve everything, but it will be a nice reprieve.
11.
Just say the child's name. Any chance you get, use the child's name in a sentence to the parents. I remember crying to a friend and asking her to promise me she'll always talk about Eli and say his name to me. I didn't want people to stop saying his name. But they do, and that's life. As time goes on people say less and less about the child, much less their name. It is a gift to hear someone use Eli's name.
This is a work in progress. Some of these I wrote a year ago and some I wrote tonight. I suspect there may be more that I add over time.
Saturday, January 28, 2017
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:
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
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.
😂 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
Friday, January 27, 2017
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.
Wednesday, January 18, 2017
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.
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.
Wednesday, January 4, 2017
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.
Friday, December 23, 2016
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.
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