She is an amazing mother and he is an amazing little boy.  I am so happy that they have each other.  Their strength is something I hope I never have to summon.  May they both find peace. 

Poor sweetheart. I hope he does find that peace his mom is asking we pray for.

I admit I've always been impressed with her outlook on him. I think she has a balanced view in the most impossibly challenging circumstance imaginable. To be able to know when its time to start hoping for a peaceful transition for a tormented child takes a lot of strength.

As a mother, I am just in awe of her strength.  God Bless them both!

ETA:  Sometimes, I question my faith in God.  At times like this I hope and pray that he/she/it someone is around to bless these people with the peace that they need. 

Prayers for them. 

I first read this a couple weeks before delivering, and a small part of me was irrationally terrified A had EB. I can't imagine her strength, esp as a single parent. Grateful for healthy babies and praying for those who aren't. 

I can never read that blog without crying.  That mother has more strength than I think I could muster up.

Even thinking about him holding that Elmo makes me break out into ugly cry. That precious little baby.

Pescalita:

Prayers for them. 

I first read this a couple weeks before delivering, and a small part of me was irrationally terrified A had EB. I can't imagine her strength, esp as a single parent. Grateful for healthy babies and praying for those who aren't. 

I never really understood - did her H leave because their child had EB?

I hope he finds peace and can pass on. Its never blithely taken for me that anyone should die, but this poor baby is in pain and miserable. I only wish him relief.

 

BAMFMrsB:

Pescalita:

Prayers for them. 

I first read this a couple weeks before delivering, and a small part of me was irrationally terrified A had EB. I can't imagine her strength, esp as a single parent. Grateful for healthy babies and praying for those who aren't. 

I never really understood - did her H leave because their child had EB?

I hope he finds peace and can pass on. Its never blithely taken for me that anyone should die, but this poor baby is in pain and miserable. I only wish him relief.

 

She never went into detail but by the way she described it it was much more than the stress of Tripp's situation.

Praying for peace for Baby Tripp. Sweet, precious boy.

 

I have wondered the same thing about the ex-husband. If he did leave because of that situation, I am even more impressed and amazed by her total lack of bitterness or anger towards him (at least as written on the blog).

That Elmo picture destroyed me.  I think because it's easy to just picture him as this newborn who doesn't really know what's going on around him.  When I realize that he's the same age as my two year old, and likely equally bright and aware and attached to little dolls and things like my guy... I just can't... it's too much.

barcelonagirl:

As a mother, I am just in awe of her strength.  God Bless them both!

ETA:  Sometimes, I question my faith in God.  At times like this I hope and pray that he/she/it someone is around to bless these people with the peace that they need. 

This.

hanson4:

That Elmo picture destroyed me.  I think because it's easy to just picture him as this newborn who doesn't really know what's going on around him.  When I realize that he's the same age as my two year old, and likely equally bright and aware and attached to little dolls and things like my guy... I just can't... it's too much.

And this. 

That is the first time I've seen that blog. It is heartbreaking and inspiring at the same time. That poor boy....

I can't believe that people would criticize the way she raised her child, like they've ever had to face anything so difficult.

I'm not surprised they got divorced. It really takes a strong marriage to survive such a devastating and difficult situation.  

hanson4:

That Elmo picture destroyed me.  I think because it's easy to just picture him as this newborn who doesn't really know what's going on around him.  When I realize that he's the same age as my two year old, and likely equally bright and aware and attached to little dolls and things like my guy... I just can't... it's too much.

it looks like something my big guy would have.  it kills me.  that poor guy, and his poor mom.

Mrs.Handy:

That is the first time I've seen that blog. It is heartbreaking and inspiring at the same time. That poor boy....

I can't believe that people would criticize the way she raised her child, like they've ever had to face anything so difficult.

I'm not surprised they got divorced. It really takes a strong marriage to survive such a devastating and difficult situation.  

I agree with all of this. I am so happy she has such an amazing support system, from her mom to her new boyfriend. I can't imagine how difficult it is to wake up every day and inwardly hope that this is it for your child because they are in so much pain.

The pictures of him with Elmo had me crying as well. 

Is it because I'm not a parent that all I can think about is that this is a very good reason for assisted suicide?  It seems cruel how long that boy has stayed alive.   Has he ever had any quality of life?  I wouldn't be able to resist slipping him more morphine.

Sibil:

Is it because I'm not a parent that all I can think about is that this is a very good reason for assisted suicide?  It seems cruel how long that boy has stayed alive.   Has he ever had any quality of life?  I wouldn't be able to resist slipping him more morphine.

ive thought the same thing.

Sibil:

Is it because I'm not a parent that all I can think about is that this is a very good reason for assisted suicide?  It seems cruel how long that boy has stayed alive.   Has he ever had any quality of life?  I wouldn't be able to resist slipping him more morphine.

That's been brought up on the 12-24 month board before and flames ensued. The thing is, how do you kill your child and live with yourself?  I think she's at the point (and been there for some time) where she's just trying to make things as easy as possible for him vs. fighting for him to get better.

I've never cried so much over a stranger as I have for Tripp.

jlthompson19:

Sibil:

Is it because I'm not a parent that all I can think about is that this is a very good reason for assisted suicide?  It seems cruel how long that boy has stayed alive.   Has he ever had any quality of life?  I wouldn't be able to resist slipping him more morphine.

That's been brought up on the 12-24 month board before and flames ensued. The thing is, how do you kill your child and live with yourself?  I think she's at the point (and been there for some time) where she's just trying to make things as easy as possible for him vs. fighting for him to get better.

I've never cried so much over a stranger as I have for Tripp.

Oh, I'm sure there were flames there and possibly will be here.  I just thought that I had the best chance of discussing it maturely on this board.

I'm not faulting her for doing what she's doing.  She doesn't seem like she's doing anything extraordinary to prolong his life, although I wonder if it wouldn't be kinder to stop bathing him and letting infection take over.  

I internally battled this with my MIL.  When she only had a couple days to live it was all I could do to not give her extra morphine.  I saw how much her struggle pained her family watching it.  I didn't, and I wouldn't, but it made me think about how much it should be an option.  So, while I can't say I've been there with a child, I've still had a very close experience to it.

Sibil:

Is it because I'm not a parent that all I can think about is that this is a very good reason for assisted suicide?  It seems cruel how long that boy has stayed alive.   Has he ever had any quality of life?  I wouldn't be able to resist slipping him more morphine.

I agree with you, but she's talked about this a lot on her blog. And it has been one of her main criticisms by others; that she is keeping her baby alive for gratuitous purposes. I really don't think that's the case here.

He has had a decent quality of life until recently. He wasn't always like this. It seems to have gotten dramatically worse in the last 6 months, and she has known for a long time that his life was only worth living if there were moments of enjoyment and pleasure for him. 

I don't think she is keeping him alive for gratuitous purposes but I can't understand how a few minutes a day without pain is worth the other god awful, pain-filled moments. Personally the minute the time in pain outweighed the time spent happy would be when I would consider upping the pain meds to a huge level and seen what happened. To me one smile a day even every other second is agony would not be worth it.

majorwife:

I don't think she is keeping him alive for gratuitous purposes but I can't understand how a few minutes a day without pain is worth the other god awful, pain-filled moments. Personally the minute the time in pain outweighed the time spent happy would be when I would consider upping the pain meds to a huge level and seen what happened. To me one smile a day even every other second is agony would not be worth it.

I completely agree.

I know kids aren't dogs, but people go through this with dogs all the time.  If it's your dog, the good moments, the pain free alert ones, make it seem like the dog still has a life worth living that you can't take away.  From the outside, you see how brief those moments are relative to the rest.  So I can be a stranger reading a blog and thinking about what I would do, but I'm not faulting someone in it for doing differently.  I definitely don't think it's gratuitous.

I think the word gratuitous has been used by her critics more in a profiting off readership and attention kind of way, which is a really awful thing to say.

I agree, there is definitely a line in the sand where a life worth living ceases to be. Maybe my line with Tripp would have been further back, who knows. But that this mom is willing to think on these terms at all is meaningful. As those Bump conversations proved, there are many many people out there who would refuse to even consider that the child's life might not be worth stringing along. 

Sibil:

jlthompson19:

Sibil:

Is it because I'm not a parent that all I can think about is that this is a very good reason for assisted suicide?  It seems cruel how long that boy has stayed alive.   Has he ever had any quality of life?  I wouldn't be able to resist slipping him more morphine.

That's been brought up on the 12-24 month board before and flames ensued. The thing is, how do you kill your child and live with yourself?  I think she's at the point (and been there for some time) where she's just trying to make things as easy as possible for him vs. fighting for him to get better.

I've never cried so much over a stranger as I have for Tripp.

Oh, I'm sure there were flames there and possibly will be here.  I just thought that I had the best chance of discussing it maturely on this board.

I'm not faulting her for doing what she's doing.  She doesn't seem like she's doing anything extraordinary to prolong his life, although I wonder if it wouldn't be kinder to stop bathing him and letting infection take over.  

I internally battled this with my MIL.  When she only had a couple days to live it was all I could do to not give her extra morphine.  I saw how much her struggle pained her family watching it.  I didn't, and I wouldn't, but it made me think about how much it should be an option.  So, while I can't say I've been there with a child, I've still had a very close experience to it.

My mom recently said the same thing as she watched her own mother in those last couple days. It was cruel. She was bitter that she was able to put her dog down when the suffering began but had to sit and watch her mom go through it.

Sibil:

Is it because I'm not a parent that all I can think about is that this is a very good reason for assisted suicide?  It seems cruel how long that boy has stayed alive.   Has he ever had any quality of life?  I wouldn't be able to resist slipping him more morphine.

The two worst things I can possibly imagine are losing my child and watching my child suffer. I honestly don't know which would be worse, so I couldnt even begin to judge this mom for either giving her child that morphine or for not doing it.

I completely understand where you're all coming from and tend to agree, as an outsider.

I actually watched as both of my grandparents (at different times AND places) were "euthanized" by increasing morphine and I was 100% ok with it. Not sure how legal it was, but whatever.

But I will never fault Courtney for 1 decision she has made in the care for Tripp. I can't say what I'd do b/c I don't let myself imagine it.

Incidentally, the fact that diseases/conditions like this even exist is why I cannot fully bring myself to believe that there is some sort of loving god out there.

We all know that the love for a child is a unique thing.

I also think like major suggested, stopping giving baths or other measures takes and extremely strong person. It takes a very strong person to sit and watch your child suffer. It is something else altogether to go against what is natural for you and to continue to care for your baby. I think there are people out there who could make the logical decision to stop doing certain things that may prolong life. I am unsure if I am one of those people and I think it shows a bit of weakness in my character. I would need to do everything I can up until the bitter end I think.

Like she said, she just can't not feed him. I get that. I totally get it. That goes against everything nature intended for us as mothers. In this child's case it is the logical answer but I don't blame her for struggling with that.

tartaruga:

Incidentally, the fact that diseases/conditions like this even exist is why I cannot fully bring myself to believe that there is some sort of loving god out there.

Yeah, I think that's another difficulty I have reading her blog.  I'm glad that her belief really seems to bring her genuine comfort, but the most recent post had some line about parents who don't believe in a god.  I'm sure it comes from a genuine sincere place, but it really stuck out to me, and not in a good way.

eddy:

We all know that the love for a child is a unique thing.

I also think like major suggested, stopping giving baths or other measures takes and extremely strong person. It takes a very strong person to sit and watch your child suffer. It is something else altogether to go against what is natural for you and to continue to care for your baby. I think there are people out there who could make the logical decision to stop doing certain things that may prolong life. I am unsure if I am one of those people and I think it shows a bit of weakness in my character. I would need to do everything I can up until the bitter end I think.

Like she said, she just can't not feed him. I get that. I totally get it. That goes against everything nature intended for us as mothers. In this child's case it is the logical answer but I don't blame her for struggling with that.

I get this I really do. And I lean more to the side of helping nature take its course by putting him out of the pain. The logical side of me tells me that if this were my child, I would know the day one come where one day he would die. That is just the cold hard fact of the matter. So I would think, what is a day early, or a month or an hour. Anything to get him out of the pain. That way, I could hold him and sing to him and tell him I love him over and over until he did pass. At least you get to see him out then. What if he dies while she is sleeping and she never gets to hold him while he passes, you know?

But then the other part of me, the selfish part, would think that I would want that extra minute or hour or second b/c I would spend the rest of my life wishing to hell I could get it back.

I don't know.

The pain will be in your heart forever. Do you do the selfless thing and put him out of his pain?

I don't know

major I think that is the thing, having the power to make a decision. That is the difficult part.

Of course I would want to do anything to end my child's suffering, but I also don't know if I could physicially make the decision to do something about it. It is the decision part that keeps catching me when I put myself in this scenerio.

God bless her is all I have to say. I admire her a great deal.