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November 14, 2019

Julia is doing OK today. More on that below. I'd give this my usual "feel free to skip", but honestly, some of you need to read it. (GoFundMe and website followers will be very confused as this will appear to have come out of nowhere... that's OK.) ~~~~ We find ourselves back in familiar territory, that is, with a terminally ill child. Last January this was all so new and overwhelming that I didn't pay much mind to comments. And as things got better, so did the quality of people actively posting on Julia's page. Unfortunately, with Julia's recent decline, the amount of shocking comments have increased. I've seen similar comments on the pages of other sick children, so apparently it's not a fluke on my page... which means some people actually are completely clueless and think stuff like this is appropriate. I make many "you" statements here. And I'm aware that the author has a certain "you" in mind as they write, but the reader usually feels the "you" is directed at them. 99% of "you" are just fine. So as you read, if you feel this doesn't apply to you, just lean aside and let the "you"'s fly past. There are people they are meant to hit. . I felt the need to write this because I am being reminded that there are those of you who make a conscious effort to involve yourselves with the pages of terminally ill children, but have absolutely no idea how to behave like a decent human being. Your thoughtless comments can be extremely hurtful, especially to mothers awaiting the death of their child. I'm not shocked that you guys exist... but I am disgusted. I don't personally find your comments offensive (I just think you're an idiot), but many people will be offended, and likely during a very difficult time. So on the off-chance you just "don't know" and aren't actually an insensitive POS, here is your PSA: First, it is, without question, never OK to suggest "It's time to let your child die". For those of you who are already confused, this includes things like:

- "It's time to let her go"

- "Just let him be with Jesus"

- "Stop being selfish and her him go in peace"

- "It's not right to allow them to suffer"

No version of any of these are OK. Ever. (I can't believe I even have to write that. Like... how have you made it into adulthood while being so clueless?) Last January, Julia was in coma given days to live, and when I announced we were still trying to save her, I received many such comments. So to those of you who made those comments then, and those who feel it's appropriate to make those comments now... let's do a visualization. I would like you to imagine standing next to Julia's vent, the machine keeping her alive at night. Let's go back in time to any point in the previous 9 months since Julia has come out of coma. Let's pick one of her many happy moments: - One of her countless hugs with daddy

- One of her long cuddle sessions with mommy

- One of her O faces, claps, and excited points for baby brother

- One of her FaceTime sessions happily bobbing along to her cousins singing

- One of the many hours she's found herself laughing at Peppa Pig

- One of the countless times she's thrown all her toys on the floor while clapping

- One of the PT sessions where she did such a good job to work on more freedom


- Or perhaps the first time she went outside in her stroller again and laughed at the breeze on her face?

- What about the first time she was able to be picked up again? When she was held and rocked to sleep in her daddy's arms after so long being stuck in bed. So you visualize yourself back there at that moment, looking at Julia's pretty bald head and her beautiful lopsided smile. Put your hand on her ventilator. Tell her that YOU have personally declared that her life no longer has value. That YOU have determined it's long past time she died. That YOU know for certain she has no happiness left in her little world. YOU know better. YOU have decided. YOU are ending her suffering. YOU are being merciful. And then turn it off. It will only be a matter of time before she suffocates. You're cool with that, right? I mean, you will be sparing her months of living in a hospital, laying through scans, getting IVs, being sedated, feeling sick, etc. I mean, she's only 2. What does she know? HER clear will to fight, HER laughter, HER strength, and HER smile don't matter... right? YOU'RE the adult. YOU decided enough is enough. . We've been through this before. The "end of life, let her go" talks. And then Julia's body surprised us. She has (so far) enjoyed an additional 10 months of life that YOU would have stolen from her, because YOU have grown tired of seeing her in a hospital room. If it's not been made clear on my page, we will continue to fight for Julia to live, right up until the day she dies. That might be tomorrow, that might be when she's 60. But as long as she's comfortable, and surrounded with love, we will never give up on our daughter. And typing that, I can only hope that you never have children who are sick, and who are counting on you, their mother, to comfort and protect them. Because you seem all too eager to pull the plug. ~~~~ And secondly, there has been an uptick in 'forceful Christian declarations". People bulldoze onto my page, type in all caps, with lots of punctuation, copying random pieces of scripture, and making bold (and completely unfounded) statements such as: "IF YOU WOULD JUST...








... YOUR CHILD WILL BE HEALED!!!!" I realize some of this might (misguidedly) come from a "good place". But you need to realize what your words are actually saying. This is an accusation, and a dangerous declaration. You are accusing the parent of not already doing these things. You are stating that the cure for their child's cancer is "as simple as" (and if they "really" want their child to live, then "they just need to..."). You are treating faith as a magic spell that is 100% guaranteed to work... unless you don't believe enough or don't perform the ritual correctly. You are claiming to know the will of God. By this logic, every child who has died, at any point, to any disease, or any tragedy, died simply because their parents "weren't good enough" in the eyes of the Lord. They did not do the right song and dance. They did not say the right words. They did not contact the right guy to come pray. That is what statements like this mean. Is that what you intend? What if Julia's illness, and possibly death, is to be used by God for good? What if her story has changed the way families all over the world are loving their children? What if her strength is showing others that they can persevere through hardship? What if our hope for her is allowing people to rediscover their faith? What if her tragedy is going to prompt radical change in medicine or politics to more rapidly find a cure? What if the very unfair hand Julia has been dealt already has been, and might continue to be, used for good? By God. But YOU know better. Right? And with comments like these, come the "but they're on my team" Christians. Those who feel the need to defend these messages purely because they appear to agree with you foundationally. You can share beliefs with someone and still see that they are doing a poor job at delivering a message. See it for what it is. Correct it when it needs corrected. You want to share your faith with a hurting family in a desperate situation? Pray for them. Pray for their child. Pray for their doctors. Pray for strength. Pray for wisdom. Pray for perseverance. Pray for divine intervention. Pray for needs to be met. Encourage them with YOUR faith in healing and YOUR faith in the power of prayer. Share scripture that speaks of hope, and comfort, and forgiveness. Share suggestions of where they might turn to in the bible for peace and guidance. Offer to help them, or pray with them, if you believe they are feeling lost, angry, or alone. But these all-caps "magic wand" declarations are the wrong direction. They are dismissive of the reality of death in our world, they are extremely hurtful to already-hurting parents, and they are dangerously misguided. ~~~~ I would like to see comments like the above come to an end, especially for future moms in my position. If you are one of the 99% who don't make wildly inappropriate remarks, please feel free to bring attention to them. It doesn't bother me to read them. Sometimes people need to be told (by a dozen other people) that they are being extremely inappropriate before they change their ways. Saying nothing only allows their behavior to continue, and at some point, their cruel suggestion or hurtful accusation might be read by someone in too delicate a mental state.






~~~~ Julia Update ~~~~ Julia has had a fine day. She's come out of her two-day sedation nicely. She's made it known she does NOT like the PICU by taking swings at all the staff =) Her vitals have been fantastic today. She's always been a wonder-baby coming out of surgeries. While relaxed, her heart rate is under 120 which is the best it's been in a long time. All the stitches on her head look great. Nice and healthy, no concerns as of now. And other than some poking, she doesn't seem to be bothered by them. She has been tolerating her feeds again nicely. Her original oral chemo was restarted today, and if that stays down, they will ramp her up on the next oral chemo + off-label med in the next two days. They are interested in getting her treatment back on the move ASAP. This whole shunt thing was just an unexpected hurdle. In general, she's been WAY more interactive than she's been in many days. Clearly the shunt was causing issues, which we chalked up to the cancer growth. (The cancer growth is of course also causing issues, just not all of them). She's been much more herself when awake. PT stopped by, but she had just dozed off so we decided to give her another day of rest, even though she enjoys her sessions. And as far as I know, we are currently on the waiting list for a room back in the PCU. A SINGLE room... There are only two, and the room Julia called home since spring got a new occupant immediately. But with her tanked immune system and ongoing chemo (and the start of cold/flu season), we can't risk exposure. Last time around we felt a bit rushed out of the PICU and I felt we really needed to fight for the isolation. Hopefully this time will go a bit more smoothly. But it's nice to know she's all ready to be downgraded out of intensive care =)

~~~~ Pics tonight: Gabriel's hair has been getting long. I told Charlene that if it's not cut by his birthday, I'm taking him out to get a fancy birthday mohawk. So today she buzzed his head... I guess that's a no to the pink mohawk? (And 2 year old birthday boy tomorrow!) Video in comments was from earlier today. Not a super bright or smiley video, but it shows she has regained lots of her lost physical ability! She kept tangling herself in all her wires and then tooting the Julia Horn for help.

YouTube: TL;DR: Julia is doing well, don't be an insensitive jerk. . . .

********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

If you're new and want to know what's going on, my first post about Julia was on October 31st 2018. You can find them all on my Facebook page or Julia's website <3

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Julianne Boley
Julianne Boley
15 בנוב׳ 2019

I've been following Julia's GoFundMe since January of this year and I just wanted you to know that I think you're amazing. Really, your whole family is just awesome to me and we're sending you big hugs from Baltimore. I know you live a life of what must be incredible stress and that keeping up with this blog must be difficult sometimes, but it is so appreciated. You're fantastic at putting your feelings into words and describing everything and it helps people connect. I appreciate the candor and think maybe some day you should write a book. We don't know you but we love your family and are sending Julia all the good energy we can and are hopefu…

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