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Karlynn

Something always bothers me any time we get into a discussion, no matter how calm or heated, about valve choice and I thought it might be helpful for me to post these thoughts.

When we have valve discussions, I believe we are thinking about it in terms of adult valve replacement. I always feel badly when a Valve Parent posts and has taken one of the other posts as a criticism, or a questioning, of the choices they have made for their child.

It's my belief that valve selection and choice for children (age 0 to when they're out of the house :) ) is a totally different ball of wax. I don't mean this from the standpoint of anatomy or science (which I'm sure there are differences) but from the point that as a parent of a child, you are making decisions to come up with the best course of treatment possible in order to get your child through to adulthood in the best possible shape, when it will be their choice to decide what is done. This is a much harder position to be in than all of us that are adults making our own decisions.

I'm sure that a lot of the information we present in these discussions is helpful to you. But also understand that we are speaking in terms of adults whose bodies are no longer growing and who probably have less complex anatomy than your child does.

I really highly doubt than any of us here would even think of questioning the decisions you make for your children. You know your child, you are much more aware of what will work for your child and what won't. You have partnered with doctors for hours, far beyond any of our consultations, to make your choices and I don't think any of us would ever begin to think of telling you what you chose was wrong. (And we really try not to with adult valvers, but sometimes it doesn't appear that way.)

I personally, would rather have 100 OHS procedures if it kept my children from having 1. You really are my heroes. If you could bottle your courage and energy - I would buy a case of it.

God bless you all.
 
You said it all Karlynn. Thanks so much for expressing what all of us feel.:D
 
Thank you, that was so nice, today is a tough day w/ it being Angle Bethy's day, but when I read your post I cried. good tears.especially the part about making (or trying IMO) the right choices to get them to be adults in the best possible shape. There are so many bad things about finding out your one day old baby will need several heart surgeries just to make it to kindergarten. BUT there are many Blessings that come with it too.You really know not to take anything for granted so really appreciate everything the good and the bad.Justin is a senior looking at colleges now and I don't have the feelings many of my friends did that it goes by so fast, I wish I spent more time w/ them when they were little. it does go fast, but looking back because of Justin's heart we always did alot together and he knows how loved he is. and I do agree I so wish I was the one that had to have all the heart surgeries, it couldn't be as bad as handing my baby (even when he was 17) over to the surgeons and watching him recover.
so again thank you, and if it helps, I've always thought people here were the most supportive to the heart Moms (and dads)and the decisions they had to make. Thanks Lyn www.caringbridge.org/nj/justinw
 
Thankyou for posting that Karlynn. Personally I have always felt a lot of support from this site and hope I havent taken undue offense to anything any of you have said, as I always appreciate the advice I get here.
As for us having courage, I don't know about that. I just feel that I have no choice than to cope as Chloe needs me. I know I would go through all Chloe's surgeries 1000 times over if it would 'fix' her heart somehow but as I can't do that, I just do the best for her that I can - that includes making all her decisions as you talked about, in the best way I can for her.
Love Emma
xxx
 
Karlynn said:
I personally, would rather have 100 OHS procedures if it kept my children from having 1. You really are my heroes. If you could bottle your courage and energy - I would buy a case of it.

God bless you all.

As you adults are also our heroes.... The guidance and education, the support and welcome that comes from each of you means the world to us. I know I need to see what Matt's life will be like and I am learning it through all of you. I need to see what he can do, mabe how he will feel so I can prepare myself to help him.

And courage?? haha Who has courage? It is stress that we survive on. Trust me, I for one am not brave when it comes to appointments, tests, caths and most of all, surgeries.

Today is a very emotional day for us "Heart Moms" and we (I believe I can say we) appreciate you for being part of it....
 
You Girls Sure Know The Way To My Heart

You Girls Sure Know The Way To My Heart

Karlynn, Thank you for posting these sentiments. They are certainly ones I share. They say the power of prayer has been proven, and I believe thoughts are far more powerful than most of us realize. I think that's one of the great values of this site/forums. Love is the most powerfull of all. It transcends time and space with it's boundless reach. How often I find my heart opened here, and in it's turn sending out an embrace. So thank you Karlynn for helping me, and to Emma and Lyn, and all the other mothers of valvers I'm sending you my heart's embrace. Love, Brian
 
I think the addition of valve parents to the site has been an extraordinarily positive force. As an adult, I tend to be less optimistic when thinking about my heart. When I read the stories that explain what the children and parents go through, it gives me renewed courage and optimism.

Thank you all.
Mary
 
I thank you Karlynn for posting such a wonderful dedication to the valve-mums....I know where I will turn to first when and if any of our 3 boys need a new valve and hopefully my own valve-op will also be an example to them...

Biggest hugz to all you mums who have been there before me
 
Karlynn said:
I personally, would rather have 100 OHS procedures if it kept my children from having 1. You really are my heroes. If you could bottle your courage and energy - I would buy a case of it.

I couldn't agree more. Great post Karlynn!
 
Aw, shucks..........

Aw, shucks..........

Karlynn said:
It's my belief that valve selection and choice for children (age 0 to when they're out of the house :) ) is a totally different ball of wax. .

:confused: I don't remember ever having a wax valve as one of our choices ..........like we had a choice, anyway............:D


Karlynn said:
You really are my heroes. .
I do think we are long overdue a GIJanet action figure, don't you? Years ago, long before the days of GI Jane, a coworker and I had dreams of marketing just such a doll.........ya know, a Barbie doll, but in BDUs, LBE and Kevlar, with a mini M-60, her own M-1A2 Abrams tank.............:D :D

Love all of you lots...............and talk about heroes, besides saviors and therapists as well...............where would I be without all of y'all? The Looney Bin, for sure.........

Hugs. J.
 
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