Becca Peter
@DefectiveBecca
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That “vigilante blogger” in LuLaRich. My son Eddie died from an embryonal brain tumor in November 2023.
Lopez Island, WA
Joined September 2021
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Pinned Tweet
My husband wrote the most wonderful post about Eddie and I wanted to share it on this site:
Grief is the price paid for love, and Eddie was loved deeply by a great many people. Our grief is acute and intensified by the wonderful individual Eddie was.
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Wheelchair users have been trying for ages to raise awareness about their wheelchairs being broken so often when they fly, and the devastating impact this has on them.
@AmericanAir
baggage handlers decided to give a demonstration of how much they enjoy breaking them 😡
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Eddie was born 3 weeks past his due date, so it seems fitting that he is still here 3 weeks after we entered end of life care.
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Eddie passed away yesterday morning. It was incredibly peaceful.
We are devastated to lose him, but thankful we got so much bonus time with him due to the excellent care he received at
@seattlechildren
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This is my son Eddie a few months before he was diagnosed with cancer.
We used masks/testing/ventilation to keep him free of respiratory illness during this journey, which improved both the quality and quantity of time we had with him.
A thread…
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If you want to do something to honor my child’s life, wear a mask next time you go to the doctor’s office or get on a plane. Advocate for clean air everywhere.
“Only vulnerable people dying of COVID” means suffering and earlier death for kids like Eddie.
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Eddie stopped breathing yesterday and they called a code blue. They were able to get him breathing again, but we don’t have much time left with him 💔
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Day 17 of end of life care. Eddie continues to be really comfortable most of the time.
It originally looked like we would be lucky if we got a few days with him, but now we could have another week+ until he passes.
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@DavidBushe72516
@DarylTractor
@AmericanAir
It never should have gone down that ramp at all, it should have been carried down the stairs.
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After 14 months of fighting brain cancer, we have entered Eddie’s final hospital admission, the one he won’t make it home from.
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The creator of this video added more info. I believe they posted the video the same day it happened, November 19, 2023.
@AmericanAir
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Eddie updates…
He is doing well. Really stable. He is awake and responsive to us at times. Waves to people if we ask him to. Watches (well listens to) The Office with us. Holds his stuffies.
He no longer seems to be about to die.
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Our time left with Eddie is almost gone thanks to a brain hemorrhage, but there are kids like him everywhere.
Their lives matter. They are worth protecting. It is not acceptable to let them die in order to pretend that life has gone back to normal.
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It has been one week since Eddie left us. Thankful for these sweet photos 🥰
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Three months after a brain hemorrhage that he wasn’t supposed to survive, we made it out of the hospital 🥹🥰
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We are almost at two weeks of end of life care. It’s the most wonderful and horrible of times. Mostly horrible.
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Everyone reading this thread can help kids like Eddie by masking in public, advocating for clean air, staying home when sick, etc.
Most illnesses can be spread before symptoms start, you could feel fine but unwittingly harm a vulnerable child.
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We made it outside today! 🎉
Eddie’s first time outside in two months 🥹
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Our hospital just updated Epic/MyChart to show an estimated discharge date, which is a little dark when your child is on end of life care 😬
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We made 22 visits to the
@seattlechildren
emergency department in the past 15 months. Universal masking helped keep Eddie safe as we had to navigate crowded check in and waiting areas, my heart breaks that vulnerable SCH patients no longer have the same protection today 😞
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The best thing we did as a family for our son during cancer treatment was wear a mask in public indoor places.
During that 18 month journey he had zero externally caused illnesses.
#MasksWork
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Quite a few of our doctors and nurses cried when Eddie died and I was touched that they cared so much.
Normalize being human. Kids dying is sad.
We need to stop shaming doctors & nurses for:
- Seeking mental health care
- Crying if a patient dies
- Needing time to sleep
- Taking vacation
What did I miss?
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My kids have grown up on a small island that has no retail chains.
Their only experience with Pizza Hut was through Roblox.
One day we were driving on the mainland and out of nowhere, Eddie says, absolutely flabbergasted, “wait, Pizza Hut is real?”
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@AmericanAir
The creator of this video is on Twitter! Incredible gratitude to
@DailyyHaeleyy
for filming this and raising awareness of how poorly the airline industry treats wheelchairs and other mobility devices.
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This is my son Eddie a few months ago as we started fighting his brain cancer.
@WADeptHealth
has decided to end mask requirements at healthcare facilities.
I am asking
@seattlechildren
to keep universal masking to protect Eddie and all of their kids.
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This is why so many COVID cautious people are also neurodivergent.
The single lone factor common to all the actively covid cautious is the ability to resist peer pressure.
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My daughter has been in and out of in-person school since COVID started, but this was her first fall in school.
Zero illnesses this fall. Masks work!
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Eddie’s aggressive brainstem tumor easily could have killed him last year. We have been so fortunate that the brain tumor team at
@seattlechildren
was able to intervene and give us so much quality time with him.
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Came here 4 weeks ago with a brain hemorrhage that he wasn’t expected to survive.
Going to do a CT tomorrow and see what his brain looks like now.
Since
@seattlechildren
dropped masking outside of his room, this decision comes with risks that didn’t exist a month ago 😑
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Eddie’s immune system has been compromised to varying degrees this entire time.
It’s possible that he could have gotten a cold and just been miserable for a few days, but it’s possible a cold could have killed him.
Cancer treatment is so miserable, why add more suffering?
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Universal masking is returning to
@seattlechildren
on Monday October 2nd.
It’s awesome that rates of COVID and other diseases are up in the hospital NOW, but Eddie had to be exposed to over a dozen unmasked people in the recovery room after a procedure yesterday 🤦🏻♀️
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Today
@seattlechildren
announced internally that they have changed their minds about reinstating universal masking and are not going to do it.
I’d say FML but it’s more like fuck kids like Eddie.
#KeepMasksInHealthCare
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We protected Eddie by always masking in indoor public places, ensuring good ventilation and filtration at home, using tests to help reduce risks with family members (all of whom were also masking in public) and being lucky enough that
@seattlechildren
was still requiring masking
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Chicago mother comes forward, says her vaccinated 3yo was terribly sick from measles this week, she has no idea how he got it.
He is doing better but tonight their unvaccinated 10mo is in the ED with symptoms 😞
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We got Eddie out of bed and in his new wheelchair today (it still needs adjustments) and it actually went way better than expected!
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Pumpkins are not allowed because of the risk of infection but masks are still optional in the halls and elevators and waiting rooms at
@seattlechildren
😞
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I found shirts for Eddie with snaps all around! Have also added leg warmers to the mix 🙂
We also got a referral for a haircut from someone who comes to the hospital and gives kids haircuts 🥰
We finished watching The Office, now on to Parks and Rec.
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We’ve been COVID cautious since Feb 2020. In 2021 we drove cross country and enjoyed life, wearing masks didn’t get in the way of the fun.
When Eddie was diagnosed with cancer, protecting him from illness was not a big change to our lifestyle.
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I never thought I would get to hear Eddie’s voice again 🥹
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Universal masking in healthcare settings needs to be permanent.
Masks should be required in all healthcare settings. By all healthcare workers AND all patients. Indefinitely.
- an ER doctor
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🚨Unvaccinated kids are being allowed to continue to go to school during a measles outbreak🚨
This is unprecedented in the 21st century in the USA.
And still no community exposure notifications.
This is how measles becomes endemic again.
Utter failure
@HealthyFla
@CDCgov
Updates here:
- 6th case of measles at Manatee Bay Elementary in Broward County reported
- 20% absent today, which hopefully means the unvaccinated children and staff are being excluded during this outbreak
Where is
@CDCgov
? Where are the community exposure notifications?
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When Eddie was little we took him to a Thai restaurant. Corn wasn’t on the menu, but the waitress told us that was what he needed and she was right 🥰
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Eddie had numerous complications throughout this journey, but respiratory viruses were never one of them.
I couldn’t stop him from getting appendicitis from chemo, but I did stop him from getting COVID, influenza, etc.
Masks work!
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What?!
My 12yo son had cancer for 18 months until it killed him. A rare and aggressive brain tumor. He had all sorts of complications.
At no point was masking a barrier to clear and compassionate communication, and there was a lot of communication.
@PeteUK7
@LibDemPatrick
@PeterStefanovi2
@JoFroggatt
@ITV
No, it really wouldn't Pete. This is nothing to do with personal inconvenience at work. The cost is about the immense difficulties of communicating clearly & compassionately with patients about difficult subjects while masked.
And last night was not a clinical setting.
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5 month old baby in the UK catches measles AT THE HOSPITAL while inpatient for an unrelated reason.
Doctors are angry at anti-vaxers but they should be 10x more angry about lax infection control measures that are leading to hospital acquired measles.
#KeepMasksinHealthcare
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My passion for protecting vulnerable people from illness isn’t going to end with Eddie’s death.
The tools exist to prevent so much pain and suffering and I will continue to advocate for policies and programs that create safe environments for all.
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When Eddie was a baby, my Grandpapa was so excited to show his first great-grandchild off to everyone at the clinic 🥰
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Eddie was saving this candy for when he could eat food again 😞
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When my child was dying of cancer at
@seattlechildren
seeing hospital administrators and other VIPs walking around the hospital unmasked was one of the most discouraging and infuriating things.
Last week members of the
@WADeptHealth
Executive Leadership Team & I had the honor of giving Grand Rounds at
@seattlechildren
& then touring the Seattle Children’s Research Institute. Seattle Children's provides hope, care, & cures to help every child & we are proud partners.
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Anti-maskers also accused me of child abuse for having my son wear a mask when he was going through cancer treatment.
They don’t want the truly vulnerable to mask, they want them dead.
Anti-maskers keep saying only the “truly vulnerable” should mask. This is a fallacy:
1) you can’t visibly tell who’s clinically vulnerable
2) everyone is vulnerable to Covid
3) best way to become MORE vulnerable? Repeated Covid infections.
We should all be masking.
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Wearing a mask around other people outdoors might be overkill, but Eddie is immunocompromised and on chemo and it’s not hard for us to wear a mask!
#KeepMasksInHealthCare
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13 years ago Eddie joined us. Almost five months ago he left us 💔
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Actually it’s worse than that. Most people with measles have symptoms for ~four days before the rash, while they are contagious.
The problem is they mirror cold/covid symptoms and public health says no need to isolate or mask with cold/covid symptoms.
Presymtomatic transmission is a feature of measles. The best protections against measles are the same as against SARS2: a high-quality respirator, having your antibody titers for measles protective, maintaining hand hygiene, and circulating fresh air.
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Third day of school and my daughter’s teacher is already out with COVID 😑
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Don’t have much to update. Eddie is still here. We are doing our best to keep him comfortable, and I think he is most of the time.
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Indiana Resident With Measles Visited 3 Chicago Hospitals While Contagious, Health Officials Say
💥Universal masking needs to be permanent at all healthcare facilities💥
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Children aren’t supposed to die.
There was nothing I could have done to prevent my son from getting a one of a kind brain tumor. The cure for his type of cancer doesn’t exist yet.
But we can prevent most kids from dying from COVID and other respiratory illnesses.
It’s also not true.
The most common underlying conditions in children killed by covid are obesity and asthma.
These kids were robbed of their entire life. Even leukemia is not a death sentence these days.
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One year ago Eddie was so happy his hair was growing back. I miss waking up next to him 💔
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@SecretaryPete
@AmericanAir
Thanks so much for your support. Please reach out to
@DailyyHaeleyy
she is the one who filmed this video!
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We made it out of the hospital, hoping for better luck this time!
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I asked him if he felt sad and he squeezed my hand yes. I asked him if he was sad because he was in the hospital and he squeezed my hand again. This isn’t the first time he has indicated the same. I usually don’t ask because I know I won’t like the answer.
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The stress and anxiety have eased considerably for now. We have a tremendous amount of love and support.
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People say they are praying for a miracle for us, and I know they have the best of intentions.
But we already got our miracle. How does a kid survive a tumor doing *that* to their brainstem?
Getting to spend the past 15 months with Eddie was our miracle.
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@drdrmaya
I’m a parent of a kid with cancer who just spent two nights sleeping on the floor of a windowless exam room because all the inpatient rooms were full, so yes, I have noticed! 😬
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Four times yesterday his breathing slowed and his sats dropped to single digits and we said goodbye, but each time he ended up coming back up. He has been really stable for the past 14 hours or so. It could all change any time but for now he is still here and comfortable ❤️
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Eddie benefitted from research and we would like the kids who come after him to be able to do so as well.
If you have the money to spare, you can help the kids who come after Eddie beat brain cancer by donating here:
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I believe that somewhere he’s free, perhaps running around carrying a new slate of monkeys. Maybe he knows what dark matter is now, or where the closest inhabited star system is. I hope to see him once again, but until then, he will be missed.
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Eddie discovered the joy of reading in bed at an early age 🥰
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I took a ton of videos of Eddie waving his arms and legs on the changing table when he was a baby because he was so stinking cute 🥰
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My son’s best friend sent him this last night and I can’t stop crying every time I read it 😭
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I’ve had a lot of conversations with our oncology nurses about
@seattlechildren
decision to stop masking outside of patient rooms.
Overwhelmingly they are confused. They thought masking would be permanent, at least on the cancer care floors.
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Healthcare workers are amazing and we were so blessed to get to know so many of them throughout this journey and especially the past 4+ months we have been mostly inpatient.
We so deeply appreciate everyone’s kindness ❤️
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Because most hospitals are not educating cancer patients about it.
In May 2022 at
@seattlechildren
I had to go through a lengthy training on how to keep my newly diagnosed child safe from bacteria.
Zero training on how to protect him from airborne illnesses.
How is it possible that people with cancer don’t know that catching Covid is especially dangerous for them?
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The care that Eddie has received at
@seattlechildren
has been wonderful.
I’m critical of the hospital admins making the hospital less safe because I want every child to be able to safely receive care like Eddie has.
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Eddie, age 6, explains how humans got to be this way.
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There have been plenty of people on this platform who felt my child deserved to die of a healthcare acquired infectious disease because he was already terminally ill with cancer and they don’t like wearing a mask.
“Some people deserve to die” is not a valid public health policy. Hope that helps.
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The comments are full of people who got shingles before age 50.
We have a safe and effective shingles vaccine but most <50 aren’t allowed to get it.
A significant number of adults in their 30s and 40s got chickenpox before the vaccine came out and are now getting shingles.
I think shingles needs to be rebranded. It is not an old folks’ condition, but physical proof that your stress levels are so incredibly high you are able to span dimensions, to reach back through time itself to repossess the neural agony of childhood and ignite it in fiery…
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Masks protect the vulnerable, even Eddie’s stuffies know that.
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Researchers in Germany recently studied the impact that COVID mitigation measures had on pediatric cancer patients.
A thread with my thoughts as the parent of a pediatric cancer patient in a world that is no longer applying these measures…
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One year ago. I was so happy his eyelashes grew back ❤️
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My son Eddie just turned 12. This could be us.
Kids aren’t supposed to die.
We don’t have a cure for aggressive pediatric brain stem tumors. His is going to kill him.
COVID is preventable. Kids don’t have to die of COVID.
Im rarely speechless, and I’m rarely affected to the point of non stop tears, but this dm brought me to that point.
I don’t know what we are doing anymore. I truly don’t
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Update: Someone fairly high up the food chain stopped by our room to apologize profusely and let us know they fixed the problem, and it has changed on our end.
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Is
@CDCgov
going to recommend that kids with cancer and their siblings no longer attend school?
Of course not. They are content to let them die.
This idea that "vulnerable" are only in healthcare is bs.
Does CDC think those of us at higher risk for severe COVID all live on island together & only travel magically to healthcare? We live in apartment buildings, take public transit, work with other people, go to school etc!
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Less than 48 hours free, we are back in the hospital with probable pneumonia 🤦🏻♀️
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100% this.
I know this wasn’t the same everywhere, but in my very blue county and state we handled the pandemic well under Trump because no one trusted him.
It is so much worse now.
@drvolts
I actually found it much easier to live with a pandemic under Trump because liberals saw through that bs. I’ve found it profoundly worse to live under Biden normalizing this amount of illness and death — and liberals happily going along with it
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We easily could have lost Eddie 14 months ago. His original brainstem tumor was inoperable and very aggressive. We were fortunate that we were able to start radiation in time to save him.
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@AnaMardoll
It isn’t just stripping naked. Their vaginas will have to be penetrated by fingers or an ultrasound in order to prove they are female enough + expensive genetic/hormone testing not covered by insurance.
Getting an appointment to have these things done + test results = months.
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Shortly after Eddie’s brain hemorrhage in July a photographer from
@Soulumination
came out to take family photos.
I don’t *like* most of the photos (because that was such a challenging time) but I love this one.
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Now and then.
The heart can hold an incredible amount of joy and pain at the same time ❤️💔
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Eddie’s Celebration of Life went really smoothly yesterday, it was wonderful to see so many of our friends and family and community members ❤️
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