Guilt and grief seem to go hand in hand, at least for me.
Here are some of the things that I have found trigger the guilt. This is something deeply personal and everyone will be affected differently by their experiences and emotions.
“How are you still standing? I don’t think I’d be able to get out of bed”
On the outside I am standing. I am heading back to work, seeing friends and making plans. Inside I am screaming to curl up into a ball and cry until I have nothing left to give. If I stop, I’m terrified I won’t start again. I feel like I would waste away into nothing. I feel overwhelming guilt for functioning. I feel like it looks like I’m unaffected by his absence. I worry he would think less of my love for him. Ultimately, the only thing keeping me going is him. I owe it to him to live, be happy and do positive things in his name.
“How are you sleeping? It must be so hard, you look exhausted”
Point one, thanks for that. Yes I am exhausted. I am exhausted from pretending to be ok. My eyes are exhausted from a mix of crying and holding back the tears. My soul is tired of carrying around the weight of my emotions. Yes I am fucking exhausted. You’re lucky I have clean underwear on, there’s no way I’m doing make-up.
Actually though, I’m sleeping pretty well. Due to all that exhaustion you kindly pointed out, most of my waking hours are just marking time until I can go to bed. All my body wants to do is sleep. Not only am I not even 10wks post partum (because I still have to recover from the birth, that doesn’t change regardless of losing my baby) but I am depressed. I am so low that just being awake tires me out. My brain fog is real, a heady mix of grief and hormones, and it uses more energy than it should just to form a sentence. Please, don’t make me feel like I should be lying awake screaming for my child all night. It’s all my heart does during the day. Sleep is the escape from the reality of losing him. Admittedly, some nights all I can do is lie there and beg for sleep. Neither is wrong. Both are draining.
“Do you know why it happened?” // “Was there anything you could have done to stop his condition?” // Basically anything that implies fault lies with genetics, pregnancy or otherwise.
I had a lot of this when he was first diagnosed. Lots of “can they not give you this?” “can you not take that?”
Oh yes, magically a few extra pills or mouthfuls of spinach will stop his heart from forming incorrectly. I hadn’t drunk alcohol for over a year before falling pregnant. I last had a cigarette when I was at university and even then I can count on one hand how many times my drunken self took a drag from a friend’s roll up in the smoking area of a club (University is so classy). I didn’t have a bath at all until after he was diagnosed l because I like them hotter than the flaming pits of hell and I was too scared to trust my opinion of what would be too hot. I didn’t eat soft cheese, sushi, chorizo or any of the other amazing things you’re not allowed. Christmas food was ruined. I missed cold meats and camembert. I did everything I could to grow a healthy child from the moment I saw that little pink line on the test. I would have swapped places with him in an instant, given him my own heart to save him. So no, there’s nothing we could have done and I live in fear that if I choose to have another child one day, they’ll be affected too. Your chances of having a baby with a CHD increase after one has one. No, not by much but then the chances of it happening in the first place are slim and it still did.
These are just things people have said to me. Not nasty people. Not people trying to make me feel like an awful mum. Good, kind people who are trying to help. I don’t want anyone to be offended, upset or worried they’ve said these things. Equally, I’d love it of people didn’t say them again. S
Sometimes to be kind to yourself, other people are made to feel uncomfortable.
Our HRHS Journey 