Tuesday, April 5, 2011

A Rare Breed

I'm writing this for no particular reason. Nothing has happened, all is well. It's just something that I often have thought, and figure I'll write out so others can understand.
There are 35 (I think) known CHDs...ranging from simple to complex.
TAPVR is considered a complex CHD. However, if everything goes well, once repaired, TAPVR shouldn't cause any problems later in life. Now, TAPVR does present in several different ways, and can be very, very complex..then it does cause issues later in life.
However, for what I'm talking about is my kids.
Technically, they should be fine from here on out. Yes, Zachy has a pacemaker, but he should be fine.
Most TAPVR kids have the same prognosis.
And yet, I don't know a single TAPVR mom who doesn't worry every time their child goes to the doctor. Or wonder if their lips look blue, or if it's just the lighting. I don't know any TAPVR moms who don't wonder, with every cold, what horrible thing could happen.
Again, technically, we shouldn't have to worry about any of this. But, we are moms, and dads, and we have watched our children fight for their lives, and we will never forget that. And it scars us, as much as it does them...if not more. Always, it is in the back of our mind, no matter how logical that may seem. It's just par for the course, being a TAPVR parent.
However, I feel like it sets us apart in the CHD world. We don't have to deal with multiple open heart surgeries (again if all goes well..TAPVR kids sometimes DO need multiple open heart surgeries), and we don't have to wonder every day, if today will be the last day we have with our child.
I feel like it kind of makes it hard to fit in, in this CHD world.
I have been in actual support groups, where the moms of the HLHSers (a VERY serious defect, where the child is essentially born with half a heart) in a sense feel better than us...like they have it so much harder, so they deserve to be part of the group more. They deserve to have the heart walk teams, because they deal with so much more.
And they do deal with more! And I am SO thankful that we got TAPVR instead of HLHS.
However, it doesn't make our TAPVR road any less real. It doesn't mean we don't deal with feelings that are so real.
We hurt at seeing our babies hurt just as much as they do.
I see it all over the CHD community. I don't understand it.
I love my new support group here, I haven't felt this with them.
The thing is, we are all fighting for the same thing. We are all on the journey together. It shouldn't matter who has it worse off, because really, if you look hard enough you can always find someone worse off than you!
I think doctors often don't realize it either. We are often discharged from the hospital and just sort of left. No one ever reaches out to be sure the parents are ok. No one suggests support groups. No one tells us that it's ok that the feelings never go away.
Anyway, I'm rambling, and I really have no idea why I'm even sharing this. Us TAPVR parents know who we are, we have our own support groups for other TAPVR parents who understand where we are, we are ok.
It's just been on my mind lately.


Christy Parfet said...

I just came across some information about support groups for parents with children with heart problems and I was going to give it to you on Sabbath. You might already know about it, but I thought I'd pass it on. :)

Anonymous said...

This is an excellent observation, you are correct that this often happens. I also see it happening a lot between those who have lost their child and those who are still living and it's a shame that the CHD world seems intent on further dividing itself. This from a TAPVR mom who did NOT get the normal road. Three open hearts, one pacemaker and several complications later, we're still chugging away. But I had to pull away a little bit from the CHD community as the drama, some of which you described, was just getting to be too much!

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