When I wrote the Discontent in the Heartland post I touched on the issues of Heart moms with living children ostracizing Heart moms who lost their children and the occasional animosity between Heart parents and adults with CHD. There’s a new one to add to the list of craziness: Heart moms trying to trump each other with one-upmanship that borders on Munchhausen’s by proxy.
Let me be clear, I am gonna preach here. But let me also be clear to both the choir and my fellow sinners, I too have been a sinner. I also want to be clear that the MOST important part of this dialog is that as long as this crap continues, we better not expect people in power to take us seriously as advocates or pay attention to CHD. It doesn’t matter what type of defect or prognosis we’re facing, we are ALL in this together, like it or not, and we need to act like a community. Now, let’s review each level of insanity and what needs to be done. Sermon time.
The Living and the Lost: OK, this one makes me maddest because:
- If a parent’s heart child died, she or he is a forever heart mom/dad. FOREVER. This is not debatable and I accept no arguments. There is no greater loss, and to diminish that is just sick, hurtful, wrong, and says so much more about the attacker that is not at all flattering.
- There but by the grace of God and modern medicine go we all – you never know when you might find yourself on the other side of that line. Remember that, and imagine it, don’t dwell on it because it will kill you, but take a taste of the bitter possibility. Now think about how it must feel to live that way with no escape because that possibility is your reality. Now, think about saying something terrible to a person who lives in that place.
- If you can’t offer love to someone who has suffered such a catastrophic loss, how can you expect it for yourself?
Let’s all grow up already: Honestly, I’ve never had trouble with any of the amazing CHD adult friends I’ve met, but I’m pretty easy going. Still, here’s my sermon because I don’t like what I’m hearing with my ear to the ground of the Heartland:
- To the parents: Respect these people because they are able to give you valuable insights to what your own child may experience. They can give you precious information about medical advice, fears, challenges, and hopes and inspiration. They can tell you how they learned about their hearts, what they feared, what they wish they had known, and how to be supportive about things you can’t possibly understand because they lived it and you didn’t. They are adults just like you, not children, so treat them like you would your peers. Don’t talk down to them, and don’t expect them to pull punches about their own experiences to spare your feelings. Remember these are their experiences, not your child’s. What they share are learning opportunities for you, so don’t take it personally or act offended by their truth. They are entitled to their truth; they’ve certainly earned it.
- To the adult CHDers: These people are NOT your parents and their kids are NOT you. While your advice and perspective is priceless and should be respected, whatever specific issues you might have with your own parents do not apply. What happened to you might happen to their kids, but it might not. Also, these parents are your age and of your generation, so they are not exactly like your parents. If you transfer yourself into their own relationships with their kids, you’re going to hit a raw nerve. Parents don’t like to be told how to raise their kids, so use I statements. “I had a hard time with xyz,” not “You shouldn’t do that to your kid.” How would that make you feel is someone said that to you? See . . . raw nerves
- Respect each other. Just do it because it’s the right thing to do and we’re all adults here. We’re all playing for the same team.
The sickest kid contestants: Oh yes, I am a sinner. I’ve honestly thought to myself (but not for a long time), “Must be nice to only have to go through one surgery instead of twelve.” But know what? I was WRONG, and I own that in my book. Also, I would have NEVER said that to anyone. I may have thought it, but I wasn’t rude enough to direct it at another mother. Besides:
- I was 100% WRONG – there is nothing easy or nice about one heart surgery.
- There is no hierarchy of heart-mom or heart-dad status.
- All heart moms are heart moms, all heart dads are heart dads. No one is more authentic or real than anyone else.
I ran into a super B, now what?: This is the most important part of the whole blog post, so I hope you’re still with me:
- Whatever that person said or did to you in the Heartland came from a place of pain, so try to understand it’s about them not you. Are you sure it was intended as an insult to you, or might it have been an offhanded or thoughtless remark that came from a deep well of pain? It doesn’t make incivility acceptable, but is it possible that you’re reaction comes from your own place of pain?
- We are all in pain, and comparing it does no one any good. I once broke my foot and sprained my ankle at the same time. Know which one hurt worse? Neither do I – it was a cluster-F of pain, and that’s the Heartland my friends. We are ALL in pain, so dragging each other down is not OK.
- Knowing that we’re all in pain, we must avoid the toxic people whose pain is so out of control that they cannot be civil and are not remotely helpful. We can forgive them because we know they’re grieving too, but we should avoid them because they hurt us. Attacking them doesn’t help, it just adds fuel to their fire. Sometimes, we just have to walk away because there’s no arguing with crazy.
I’ve been a super B, is there hope for me?
Fellow sinners, if you’re one of the people on the list above, as I have been, think about your own pain. Is it so enormous that you cannot offer empathy to anyone else? Can you not imagine how hard things are for your peers? If you can you can repent of your ways, do that, and think before you type. You’re going to be OK.
However, if you are too stunted to feel for others, then you simply need to get therapy. I’m not being flip or facetious, I’m being helpful and honest. If you find yourself telling a bereft mother she can’t be in the club, a mother whose kid is doing better than yours that she’s not suffered enough, or an adult with CHD that they don’t know what they’re talking about or that they’re depressing you with their reality, then you need to get Hell off Facebook and get on a shrink’s couch because you’re not mentally healthy.
I say that with love because I’ve been there. We are all grieving what we’ve lost, our expectations, our sense of certainty, and in the worst cases our hope itself. We all hurt, but if you truly believe you hurt worse than everyone else in the Heartland, it’s time to take a vacation from other heart families and take a visit to the land of mental health services, because Baby, you’re drowning and dragging down the people who are trying to help you.
Yes, we are here for each other. But just like the oxygen mask on the airplane, if you can’t breath, you’re no good to anyone else. Now everyone, grab your own oxygen mask, take a deep breath, we’re going to be OK.