As I share Gwen's story and other things for CHD awareness on her blog I drag guilt with me through every post I publish. I know I'm lying. She is NOT gone because of her CHD as all my posts seem to suggest.
She is gone because of a virus. Any baby could have got the same virus and left that quickly. We were schooled in that fact by her cardiologist who went over the autopsy with us and told us the perfect condition of her heart and its repairs.
Gwen is a success story for congenital heart defect. Like so many of these kids, she was going to have a long road ahead of her - but she was going to, for the most part, be just fine. More surgeries were unavoidable, but as she grew she'd get stronger and more able to handle them... so the risks were going to go down as she grew (okay, it wasn't going to be simple...I'm making it sound to simple...but there was so much real HOPE).
I feel as though I'm using her story, her sad story, to raise awareness of how awful CHD is...that babies die from it...."see, look at Gwen." But that's not the truth. Babies die from it, yes. But, Gwen did not.
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I didn't know where to put this... I wrote it while making the post for today on her blog, but I can't publish it there (everyone will think I'm still grieving really hard, they will try to tell me it wasn't my fault, "guilt is normal but I can't listen to it..." - all loving and kind responses by people who care and want to talk me down of my ledge.... and I don't want to waste CHD awareness on that caring sentiment...And no, I don't think I can handel someone saying I "did the best I could" - really - please, please tell me I can do better than have a child die under my care... please don't say that was the best I could do. I want to keep the focus CHD - not the reality of my story that people can't handle.)
But... here is the truth, so I'm honest somewhere...
Looking back, I just want to fix it. Do things better. Everything. I want to Kangroo care with her more. I want to find out I can fortify her feedings with hind-milk instead of formula sooner rather than later (even as I'm so glad I did learn that at some point- thanks to another heart-mom I met there). I want to make sure I'm with her even longer into the night and arrive earlier in the morning while she is at the hospital.
I don't want the stress to win as we take her home from Philly to Harrisonburg and not soak in how wonderful it was we were taking our sweet Gwenyth home. We were fighting and were stressed because packing took forever and we got lost on our way out of Philly... how could we be fighting in the car with our two sweet girls in the back? I want to keep her protected and safe when she is home. I want to notice and clue in to how sick she is before it's too late.
Real life is so imperfect, moments are everything and hind-sight's 20/20 is cruel. "We don't remember days, we remember moments," so it is said. I remember the moment she was born, vividly. I treasure that moment. I remember the moment when I saw her diaper was not wet enough for how long it had been and yet didn't register yet what that meant. That moment... it lives just as strong in my memory, and it will always be a weight I can't bear, yet can't set down - it's mine to bear - it's chained to me.
One memory will always seep into every good memory I have of my sweet Gwen. One memory will always taunt me and tear at my soul every time I think of her and love her. One memory will never leave me alone... I really meant it when I said I belonged in jail after she died. It was criminal. My instinct didn't kick in. What kind of mom is so caught up in daily life that she misses her "heart-babies" need?
A two-second google search would have clued me in, for a healthy baby, that situation with the diaper, that was a giant red flag and flashing lights. I checked, just the other day, and yes, a two-second google search would have clued me in. What was wrong with me - how did I not tune in to my child's need? I've googled for far less.
We love so imperfectly, deeply but imperfectly. Hind-sight makes it glaringly obvious. But this was more than imperfect - it was criminal.
She is gone because of a virus. Any baby could have got the same virus and left that quickly. We were schooled in that fact by her cardiologist who went over the autopsy with us and told us the perfect condition of her heart and its repairs.
Gwen is a success story for congenital heart defect. Like so many of these kids, she was going to have a long road ahead of her - but she was going to, for the most part, be just fine. More surgeries were unavoidable, but as she grew she'd get stronger and more able to handle them... so the risks were going to go down as she grew (okay, it wasn't going to be simple...I'm making it sound to simple...but there was so much real HOPE).
I feel as though I'm using her story, her sad story, to raise awareness of how awful CHD is...that babies die from it...."see, look at Gwen." But that's not the truth. Babies die from it, yes. But, Gwen did not.
----
I didn't know where to put this... I wrote it while making the post for today on her blog, but I can't publish it there (everyone will think I'm still grieving really hard, they will try to tell me it wasn't my fault, "guilt is normal but I can't listen to it..." - all loving and kind responses by people who care and want to talk me down of my ledge.... and I don't want to waste CHD awareness on that caring sentiment...And no, I don't think I can handel someone saying I "did the best I could" - really - please, please tell me I can do better than have a child die under my care... please don't say that was the best I could do. I want to keep the focus CHD - not the reality of my story that people can't handle.)
But... here is the truth, so I'm honest somewhere...
Looking back, I just want to fix it. Do things better. Everything. I want to Kangroo care with her more. I want to find out I can fortify her feedings with hind-milk instead of formula sooner rather than later (even as I'm so glad I did learn that at some point- thanks to another heart-mom I met there). I want to make sure I'm with her even longer into the night and arrive earlier in the morning while she is at the hospital.
I don't want the stress to win as we take her home from Philly to Harrisonburg and not soak in how wonderful it was we were taking our sweet Gwenyth home. We were fighting and were stressed because packing took forever and we got lost on our way out of Philly... how could we be fighting in the car with our two sweet girls in the back? I want to keep her protected and safe when she is home. I want to notice and clue in to how sick she is before it's too late.
Real life is so imperfect, moments are everything and hind-sight's 20/20 is cruel. "We don't remember days, we remember moments," so it is said. I remember the moment she was born, vividly. I treasure that moment. I remember the moment when I saw her diaper was not wet enough for how long it had been and yet didn't register yet what that meant. That moment... it lives just as strong in my memory, and it will always be a weight I can't bear, yet can't set down - it's mine to bear - it's chained to me.
One memory will always seep into every good memory I have of my sweet Gwen. One memory will always taunt me and tear at my soul every time I think of her and love her. One memory will never leave me alone... I really meant it when I said I belonged in jail after she died. It was criminal. My instinct didn't kick in. What kind of mom is so caught up in daily life that she misses her "heart-babies" need?
A two-second google search would have clued me in, for a healthy baby, that situation with the diaper, that was a giant red flag and flashing lights. I checked, just the other day, and yes, a two-second google search would have clued me in. What was wrong with me - how did I not tune in to my child's need? I've googled for far less.
We love so imperfectly, deeply but imperfectly. Hind-sight makes it glaringly obvious. But this was more than imperfect - it was criminal.
One moment and I didn't stop the train and alter which tracks we were on... I was supposed to make a switch, get on route to the doctor, then and there... that was my chance. I could have given her some Hope. Instead I just kept barreling foward in regular-life mode... I took note, I wondered about it, but why didn't I go one tiny step further... why didn't I stop the train for a moment and get on google and try to rule out any slight concern I had... Where was my mind that morning? What was wrong with me?
And this train of thought goes on believe me- that was the beginning of several different "moments of decisions" where I chose the wrong thing. All moments now chained to every wonderful and sweet memory I have of the baby I no longer can hold...
So writing on Gwen's blog for CHD awareness only stirs this all up and makes me so aware of the reality - it demands to be acknowledged. And, don't get me wrong, I'm okay. I really am. I even hope and plan to one day talk about what all mama's need to know so no one makes the mistakes I made - over-there on Gwen's blog.
I'm okay up here on this ledge - I'm at an amicable place with it - it's part of all that happend, it's not going to go away, it's not going to change, time won't talk me down to a place with less tension. It is what it is. Things I will always wish I did differently, things that will always cause me to feel unending frustration with that person I was in those moments... I lost my baby and those moments contributed - there is no other way to square it. But I can live with even that- because again, what choice do I have?
None.
I'm here. All that really happened. And time is moving on. Life doesn't really care about how I feel about what's behind me and frankly it will keep handing me stuff whether I feel "ready" for it or not. Process schmocess. So - yes - live with it, that's the bottom line... carry it and just keep trying to keep up with life and for God's sake, learn from what I now carry...
Part of learning is to admit the truth. And I do.
And for now, I had to be real somewhere. I feel so false on Gwen's blog... I had to be real and honest about the truth somewhere.
Hey Laurie, how are you doing today?
ReplyDeleteI know you don't want to hear all the clichés and kind coments and stuff. I've been thinking about what to write for a few days, but I'm not very good at deep and meaningful. All I can say is that once you've had some time of beating yourself up, take a moment to be nice to yourself too. You have so much to deal with right now, you need to be kind to yourself or you'll sink under the weight of it all. I'm not going to say any of the comments you wrote above, just make sure that when you think bad things of yourself, try and balance it with a good though too. Take care of yourself....
Jackie
thanks Jackie. I have managed to get stuck here. But thank God for the responsibility of Lil - I know I can't stay here... I know at some point I gotta drop it... I know it will seep through into every area of my life... and it will cause Gwen to have not been the blessing she is... I stupidly watched a video of Gwen the other day, for the first time... so I did, I kicked myself while I was down...I am pretty sunk these days... thank you for trying to help me up... I do, I have to stop this, I can't do it to Lillian... to Gwen's life... but the weight of it all... every good thought feels so fake and forced. but Lil - I'll do anything for her... but yea... I do...I'm going to keep trying to get more sleep. I'm starting with the basics... one thing at a time... but it all (all three losses) get more real every day...isn't that weird...? But I will try not to trust myself till I'm getting more regular sleep... thanks for being a good sounding boark Jackie :)
ReplyDeleteIt sounds to me like you’ve actually got quite a good grip on things. You know that grief is a process. You also know that your process is bigger than the average because you’ve lost three very special people very quickly including the hardest loss of all, that of a child. You also feel guilt over the loss of Gwen (whether or not you should feel guilt is another discussion). There are no short cuts through this process. I have very little experience of personal grief to speak of but I know that the first step in learning to cope with it is to recognise it. It’s that moment when you go “hey wow, I guess this is what real grief feels like!” You know you’ve sunk, you feel that you’re kicking yourself when you’re down, and you know that you have to come up again. You also have the best reason in the world to bring yourself back up and that is your family, your daughter. This is recognition – ‘I understand what is happening to me’. The next step is how to start moving back up, but maybe you’re not ready for that step yet? There’s no time limit on grief, there is no set pattern you have to follow, maybe you actually just need to feel bad about things for a while? If that’s the case, then that’s OK. Sometimes you need to give yourself permission to grieve. So instead of ‘I should be strong and should be coping better by now’ which is mentally telling yourself that you’ve failed in the recovery stakes because that’s not happening, perhaps you need to say ‘I’m having a bad day, I feel rubbish and I want to cry, and that’s normal’ which is a far better way to approach things in your mind...... you’re being normal, which I think is all that any of us want. I don’t think I’ve explained myself very well, but I think when you start beating yourself up your mantra should be “I feel rubbish today, and considering the stage of grief that I’m at it’s normal to feel rubbish. I am behaving normally for my circumstances.” You just have to be careful that your new ‘normal’ is getting easer over time because there is a very thin line between grief and depression. And while I’m rambling on, I don’t think that watching video of Gwen is kicking yourself when down. I’ll bet you couldn’t bear to watch those videos a while ago. Now you can, that’s progress. Of course you got upset watching them, that’s normal. Did you expect to watch them and not get upset? That would not be normal. Don’t set yourself up to fail, tell yourself the truth. “I want to watch video of Gwen and it’s going to upset me, and it’s going to make me feel bad”. Then when that happens, you’re expecting it.
ReplyDeleteGosh don’t I go on.... I really don’t even know what I’m talking about, I can only tell you what I’ve experienced and seen. I’ve seen a lot of people go through grief. My own brush with grief was minor compared to yours (ok I’ll admit, my dog died, I’m unhappily single and live alone and she was my best and closest friend. I know, that makes me sound like a reclusive weirdo!!), I was expecting it because she was old, and in a way I had already done a lot of the grieving before she died. I was mentally very prepared and I think this gave me a good opportunity to really step back and examine my feelings and emotions through the process and realise that rather than rush through it and try to get back to where I was before, it was actually easier to accept the feelings for what they were – normal. I also couldn’t stand it when people said things to try and make me feel better. I know they meant well, but I just couldn’t hear it. Did they really think their clichés were going to make me feel better? I really don’t understand that one.....
Anyway, I have no idea if that helps or even makes any sense at all. But at least you know that I’m thinking of you!!!!!