I received another email of stuff someone saved from the CaringBridge guestbook.
This was written after Bethany had spent some time in the hospital:
- Written Dec 22, 2012 10:16pm
Sorry for the lack of update yesterday. Once I was home, computer time was limited, especially after Joshua woke up. 🙂 It is wonderful to be home!
Bethany is fine. She’s exactly the same as before, except now she isn’t in pain, which is obviously a huge relief.
With congestive heart failure added to her list of medical conditions, no one really knows how long she is going to live. We don’t see her leaving us in the near future, but if the medications she’s on lead to adverse side effects or she gets a bad infection, things could get dicey very quickly. We are keeping her DNR status the same because if she were to code, we would not want to resuscitate her since we all know the life we would be trying to bring her back to and it’s not a life anyone would want for their child. It’s really awful that everyone involved in Bethany’s care agrees it would be more merciful for her to die than to continue living, but there’s the reality.
We are hopeful that we’ll see more smiles and more happiness from Bethany now that she’s not in severe pain, but so far, she has been content to just sit and watch the world go by. Tomorrow, I will be resuming her standing therapy and I anticipate she will hate that as much as always, but hey, maybe she’ll surprise us and be okay with it!
Thank you so much for the prayers and words of encouragement and support during Bethany’s hospitalization. I am very thankful that God has given me a community of readers who care about me & my kids.
These are guestbook responses:
I am so happy to read that Miss Bethany is seeing some relief with steroids. I am sad to see that this course of treatment can’t be a normal for her. She is such a sweet beautiful little girl who deserves the very best chance at life.
I am very disturbed by your comments about how merciful it would be for her to go to heaven verses living in pain. Yes I understand that blanket statement. But it breaks my heart that you would make a statement like about one child and not the other. You would NEVER make a statement like that about Joshua. In fact you encourage him not to die. And tell him he won’t get his presents if he does. Does he also not live in extreme pain?
I guess it is just ok for one to not have to suffer but not the other. After all she had to suffer longer without her heart surgery because there was a possibility Joshua might have died last year when she was steroid free.
Wow, what a bitchy comment! Let me spell this out for you REALLY clearly since you obviously can’t read for comprehension.
Bethany has ZERO quality of life. She never has. Period. She does NOTHING. She WANTS to do nothing. And her DOCTORS ~ you know, the people who actually spend time with her and are unbiased ~ are the ones who first brought up the idea of not doing heroic measures to extend her life because hello, what would we be resuscitating her for?
For your information, Joshua has been a DNR since we found out that his condition was terminal. Yeah, so what that means is that, had he coded, he ALSO would not have been resuscitated because we recognized that it would be cruel to do in that situation.
You know, what? You have NO FRICKING IDEA what it is like to have TWO medically-fragile children and have to make decisions for both, knowing that snarky people like yourself are going to come along and judge whatever it is you do or say because they think they have it all figured out.
You showed your ignorance in stating that Bethany couldn’t have her heart surgery last year because Joshua might have died. Uh… NO… it was because the cardiothoracic surgeon wanted Bethany off steroids for a MINIMUM of 3 months prior to doing surgery because he knew she wouldn’t heal. The ONLY reason she had her surgery at the end of August was because her heart got bad enough that they couldn’t wait any longer. And because she’d only been off steroids for a few weeks, she didn’t heal properly and we dealt with a mess for 7.5 weeks in trying to get her chest incision and port incision completely healed over.
AS PER ONE OF MY PREVIOUS POSTS WE SEE THAT KATE LIES ONCE AGAIN! Bethany was steroid free for 4 months but Joshua was to ill for Kate (or any other adult in the family) to be away from him.
If you have nothing supportive to say, then stick a sock in it, lady. I HAVE said repeatedly that it will be merciful for Joshua when he finally goes to heaven. I have said that it will be the best day of his life because he will finally not hurt anymore (and it’ll be the worst day of mine because I won’t have him anymore). I have said repeatedly that we won’t do anything more to extend his life. We don’t do heroic measures. We DO try to keep him comfortable.
I’m sorry you seem to have trouble reading for comprehension and that you think I am so mean to poor Bethany while obviously favoring Joshua. I realize there are lots of people out there who think that the poor adopted child gets shafted in a family and maybe you’re one of those who has that perspective. I’d like to remind you that I just spent a week away from my “favorite” to be 250 miles away with the one you assume I “don’t like”. I guess I did that to look good to everyone, right? Heck, next time, maybe I’ll just send her away to fend for herself because you KNOW I can’t possibly choose Bethany over Joshua ever, right?
Ugh. People like you suck. Do me a favor and don’t comment again. Really. I don’t need crap from you or anyone of your ilk and if you actually cared, you’d understand that being in the position of having 2 children not anticipated to live long lives is pretty damn difficult. I’m sorry I don’t handle everything as perfectly as you would. Maybe God will bless YOU with two kids who will die of completely-different conditions and you can show the world how it should be done.
I agree with my mother, you suck to have written this. Do you not realize we live with enough crap as it is?! I mean REALLY! Our lives are stressful enough without STUPID people like you making asinine judgments when you don’t even KNOW what our life is like. My mom only writes a FRACTION of what we have to deal with on a daily basis. You don’t know our lives or us – don’t assume you do. It makes you look like an idiot.
To answer your question, no, Joshua doesn’t live in extreme pain. It is controlled by a HUGE amount of pain medication, but thankfully, we ARE able to keep him comfortable. If you actually read his caringbridge page, you *should* understand that keeping him comfortable is our primary goal and that it’s all we can actually DO for him anymore.
We can’t force Joshua to live longer, but yeah, heaven forbid we should want to encourage him to not die before Christmas. You’re right; we should totally tell him “Joshua, please go to heaven so we can live with the agonizing, painful memory of your death every single time this holiday comes around”. You’re right; that is SUCH a better option! And yes, just so you know, I AM going to mention Bethany just do you don’t think I only care about my brother!
As for Bethany, my mom is right. Bethany does NOTHING. I love her. She’s my sister and it doesn’t matter one iota to me that she’s adopted just in case you’re assuming it does. But she does NOTHING and she has no desire to do anything and at this point, we have to look at QUALITY of life versus QUANTITY. What would it matter if she lived to be 80 if all she did was sit around and do nothing and be miserable because the medications she HAS to take to try to control her myriad of conditions will eventually destroy her body? Wow, doesn’t THAT sound like a GREAT life for her? Wouldn’t YOU like to live like that? And don’t even give me any crap about how she is capable of doing anything she wants to do and she has so much potential. She’s not capable of doing the things she wants (and she’d have to want to do something, which she doesn’t) and there is very little potential for her. Her doctors know that. We, as her family who spend every single day with her, know it, too. It’s not a loss of hope or will to help her, it’s just fact.
Oh, and don’t call her “sweet” like you know her, because you know what? She’s NOT! She’s not a sweet little girl. She has moments of being sweet and loving on her own terms (always on her own terms), but most of the time, she is very unhappy if we try to interact with her and all she wants is to be left alone. THAT is what makes her happy and even then she’s not really “happy” in the traditional sense. That would be due to her having autism and an attachment disorder (that my mother hasn’t shared publicly but yes, I have her permission to inform you about it now).
Basically, it all comes down to an age-old rule: If you don’t have something nice to say, don’t say anything at all. And in a newer, internet-made rule: If you don’t like what is on the page, use the red little X at the top of your screen and go away.
Don’t make things difficult and cause emotional stress for families like mine. That’s not helpful in the slightest and we deal with enough heartache without having to hear venom spewed from people like you.