Good Grief . . . how to deal without being a serious B + itch

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:

  1. 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.
  2. 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.
  3. 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:

  1. 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.
  2. 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
  3. 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:

  1. I was 100% WRONG – there is nothing easy or nice about one heart surgery.
  2. There is no hierarchy of heart-mom or heart-dad status.
  3. 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:

  1. 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?
  2. 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.
  3. 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.


14 thoughts on “Good Grief . . . how to deal without being a serious B + itch

  1. Great post! I agree 100%. We all need to get along because we are all in this together. Parents who have lost their kids are fighting some of biggest battles right now. I look to an adult CHD friend as an inspiration to what my son can become. It’s hard not to think that your child had it worse than some others, but it doesn’t really matter becuse it is hard for them all.
    If we stop fighting and work together, we can do amazing things!

  2. Amen, Sister! And one of the many reasons why I do not accept friend requests from Heart Parents that I do not know – either in real life or from the community you created for us on HRH. Too much stupid drama. And I follow the advice, “If you can’t say anything nice, don’t say anything at all.” When the temptation to type something unkind becomes too much or the people just completely irritate me with their constant whining – there is always the “block” feature or “unfriend.” Everyone should feel free to use it! There is no need to have constant drama, except some people seem to thrive on that. I don’t need “virtual” drama in my life! Why would I spend my time and energy arguing with people that I don’t even really know??

    As for those few who feel the need to play the “My child is sicker than your child” card or (God forbid) the “Your child died, you can’t be a Heart Parent anymore” card (and thank goodness I wasn’t near THAT conversation) I will leave you with my favorite quote from our wonderful friend Stephanie and FOREVER Heart Mom to Lauren, “You want to play the ‘my kid is sicker than your kid game?’ Fine, my Heart Kid died. I win. Game over.”

    1. Oh yes Barbara. I love Stephanie and I know the drama the yielded that response well. Under those circumstances she was right. But it cuts both ways. Recently, a bereft mom told me Liam’s pace maker surgery is a “small price to pay” to keep him alive.

      I know she was having a really hard day missing her son, so I accepted what she said without argument, but it isn’t true. It’s not a small price to pay, and not just because Liam has to be opened fully to get it in, even if he could have the pacer the “easy” way, it would not be a small price to pay.

      Maybe for me, it is but I doubt it. However, I was making a point for for Liam, and this is the point I was trying to make, it’s hard to watch his own fear and anxiety over this impending violation of his body and not be able to ease them. That fear he feels and the pain he will experience is not a small price for a little boy to pay to stay alive, and he’s paid, and paid, and paid for the life he still has.

      To dismiss that because a child has been lost is to lose sight that Liam is on his own difficult journey and to diminish his struggle. While I revere all angel moms and I understand that this woman was in a lot of pain, it doesn’t make her infallible or right. I think the larger point is not to compare the two. Each is it’s own painful journey that must be respected and seen for what it is. They do not bear comparison.

      1. Well, that mom was absolutely wrong! And you know Steph would never attack anyone – in the example I talked about she was defending herself. Anytime a child has to face fear and pain, the price is too high. It doesn’t matter how often or how big – once is too much. Even if the child will never remember it, as parents it is etched on our hearts forever! And you are right – we can never compare journeys. Every one is different. We need to remember that as a heart community. There is no “better” or ” worse” there is “similar” or “different.” But we are all on the same journey.

  3. Having a sick child is in my opinion one of the most difficult experiences life can give. There are so many different emotions and scenarios to deal with. I remember thinking when I was a young teenager that the worse thing that could happen to me is if I had a child that was sick with a serious illness. I remember a neighbor child who had a heart defect and she was always sick and couldn’t play with us kids. My mother pitied her and her family. I did not like that feeling at all. It felt disempowering.
    I had two healthy children and then my son George was born with transposition, in 1987. I was thrown into my worse nightmare. I can say that I am grateful for my own inner resolve and spirit that got me through the times I thought I could never endure. George is now almost 25, and an adult(?) I am still a mother of a child with CHD. I go with him to his cardiology appts and worry about him and pray and do my own inner healing work. Always. This never ends. This only becomes manageable for days or maybe weeks, depending on how I am feeling and what is going on with him.
    There are so many factors involved that make people act the way they do. People have deep past wounds, pain, they are not aware of, inner demons, etc, etc. George’s own father and my husband was one of those perpetrators. He could not handle his child being ill and took it out on me. Years later, we divorced and discovered he had a mental illness and personality disorder. He was arrested for domestic violence, etc. So, my point is thus. He had issues way before he had a child born with CHD. He was going to handle this how he handled it.
    My thoughts are therefore this: There are many people out there who are loving, kind and compassionate. The first person to be loving kind and compassionate to is yourself. Reach out to people who have walked the road and you feel a connection to in a positive way. Having a child with a serious medical condition does not give people a “badge of goodness”. People still have their issues. My road to this understanding has been a long one. There were many people who supported me and many who did not. If they were cruel, I knew it was their problem!!!
    Be strong in your own inner knowing, get support from those who are kind and generous. Have very good boundaries. Get therapy yourself. This is the most difficult experience to do through and will bring up all of your issues too. We can learn how to walk through life in a healthy productive way and not let the emotional pain drown us!
    When you go public with your personal story, it will lend intself to more attacks than if you remained private. Build your team of support. The team you can trust.
    Now, 25 years later, I am in a place to offer my support to others. I have a private counseling practice and have recently decided that I would like to use my skills to assist other heart parents and families. Because of my training, I know that people process all of this very differently and so therefore, it is important to have very good boundaries and to continually heal yourself, so you can be there for yourself. Always, always be good to you!!
    Mary

  4. I agree and love this post….for the most part. I was in love until the end.

    I am an angel mom, you has lost her son in less than 6 months ago. My pain is still very fresh and raw. I would never “say” it, but do I sometimes feel like my pain is worse than a mother who has a child still living but fighting CHD? Sure do. Am I right? Nope. But I do often think an feel that. The implication that someone who feels this way needs mental help is outright wrong. Again, Ive never said it to anyone in the community, but I say things to my husb and and family often. Its called grief, not mental instabillity. I do support others in thier journey and empathize with their struggle. I help when and where I can to offer any form of support possible. Im not mental for feeling like my pain is far greater than anouthers, because to me it is. Again I love this blog post, but feel that the “mental” judgment at the end was rather harsh.

    1. Heather, I’m very sorry for the loss of your son and I am also sorry that comment seemed harsh, but it’s clear from your response that that comment doesn’t apply to you. You’re clearly too aware, caring, and present in the world to fall into the camp that denies the humanity in and suffering of other people. It’s that camp that is truly unhealthy, and you’re not a part of it. It’s totally normal to think what you think, but that’s the operative word, you “think” it, you don’t define your life around it and you don’t marginalize other people or act out on those thoughts. Sadly, there are people out there who do, and those people really are not well.

  5. I love this post… I’d actually like to comment that this post not only applies to the heart community on FB but also to the medical community in real life. My son is often compared by his doctor to a child who was born with the same defects, but had more complications after surgery than my son, the favorite phrase is “your son wasn’t complicated”. While I am SO grateful that my son only spent 16 days in the hospital instead of months, I don’t know any part of open heart surgery that isn’t complicated to the parent that went through it. It imparts a dismissivness about what we’ve been through because another childs journey was more involved. As a patient you sit and bear it, not wanting to appear like your whining, but in the end the lack of understanding is painful.

  6. There needed to be a big voice of reason in all of this and I’m so glad that you are it. I wonder sometimes, if these issues come up in other health communities: cancer, HIV, etc.

  7. I couldn’t agree more! It is so hard to deal with a sick heart child and it is difficult to deal with a “healthy” heart child. Our lives are just different from the “normal” non-heart families. With that being said, I think we are the hardest on each other as a heart community. I have been very fortunate to have a HRHS child that has done “exceptionally” well as our card put it, but this journey has been hard and let’s face it, it just sucks! I too have pulled away from some of the heart community because I found my self feeling “guilty” for having a child that has done so well on his journey. Is that thought rational? NO, but during this “grieving” process, it was hard for me not to see how irrational it was. I have grown immensely since my son was born and now feel privileged to be his mom. I feel blessed that he is doing so well, but also understand that I better not take a single day for granted because let’s face it, none of us know how much time we have. And I agree 100% that you never know when you are going to be in another person’s shoes so be careful what you say.
    Dawn-I think most health communities have very similar issues. I have a very dear co-worker who has a son who has CF. It is great to talk with her because everything Amanda listed above is all too true for her too!

  8. You hit it right on the head once again. I have had parents say to me “well at least she didn’t die, you should be grateful for that”. Yeah, thanks, realized that when she was born. But then I get the parents that feel like they have to apologize to me for asking for prayers for their sick kiddo getting their tonsils out because our situation had to have been worse being open heart surgery and all. I try and tell them that in no way is one worse than the other to me.. Your baby and what they go through is just as heart wrenching no matter what they are going through. My son face planted onto the concrete and busted his lip and nose tonite and will have two black eyes tomorrow. I was crying about that because he’s my baby and it hurt me to see him hurting. I hope everyone of my heart family know how important they all are to me each one being the same as the other no matter how many surgeries have transpired. Love you Amanda. You are doing great things:)

  9. I have always tried to live and talk to anyone about my Joshua as if the person I am talking to has been thru what we have been if not more regardless if it’s a skinned knee or trisomy 18. This is someone’s child, someone’s pride and joy, a child that someone would walk to the end of the world for to protect. So for me to assume that their brand of pain is any less than mine is conceited. Their child hurts so therefore they hurt. What does make me mad is the difference in the way each child illnesses are treated at hospitals and by drs. I sometimes they they are the worst offenders.

  10. This is a phenomenal post! Thank you Amanda for putting into words what many of us are thinking. I constantly imagine us in the CHD community having a voice loud enough to be in front of Congress asking for money for research…and getting it, like the Autsim community. But that will never happen unless we all realize we are in this together. The comments following are just as good and insightful. Thank you all.

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