Tuesday, March 26, 2013

Mortality and Taboo Clubs

Those of you who are Downton Abbey fans, like I am, will know that this is Sybil, a character in the show. I thought if someone made a movie of my life, I wouldn't mind if she played me.You will also know that she dies from eclampsia after giving birth. 

If I had lived back then, I would have died also in a similar manner. I had HELLP Syndrome (http://en.wikipedia.org/wiki/HELLP_syndrome, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001892/)  with my first child, which is like severe eclampsia. I'm only here today because of the miracle of modern medicine. It's a cliche phrase, but very appropriate.

I had pre-eclampsia with both pregnancies, the first pregnancy went past everything else all the way to HELLP Syndrome, the second pregnancy to toxemia. I was induced both times. One resulted in a stillborn son, the other in a living daughter. Both times I am alive because of the medical care I recieved.

As I watched Sybil suffer from eclampsia and die, I was a little numb, didn't feel much emotion. I think it is because that could easily have been me. To see what could have happened to me, but didn't was a little shocking.

Both pregnancies ended with the doctor telling us that I needed to get to the hospital quickly. Go home and grab some stuff of course, but then get to the hospital as soon as possible. I was in the hospital for a couple days both times.

Someone I know mentioned they actually had to have an IV when they gave birth the second time. From my experience, I didn't know that wasn't normal. I had IV's the whole time, with extra medication, and other medication to cancel the first on standby in case there was a problem. The first time, they also reserved some extra blood for me in case of an emergency, and I was assigned a nurse just for me.

If Sybil had the baby now (and was a real person), then she would have survived. If I had lived back then, I would be dead, twice.

Just as hard as these experiences were to endure, I think it was worse for my husband. I felt pretty sure that the doctors would take care of me, and I would be okay. But for him to be able to do absolutely nothing while his wife was so close to death except wait by my bed for a few days, then to lose a child and almost a wife. Then with the next pregnancy, we were pretty sure we would lose that baby too, the doctors were very worried about the outcome, not just us. My husband was worried he would lose a wife and a second baby. Everything turned out okay in the end with our second baby, but less than a year later, his dad died suddenly of a heart attack at a young age.

For him to almost lose a wife, to lose a son, to worry about losing his wife again and another baby, then to have a sudden life change and to deal unexpectedly with the challenges of a newborn, then to lose his dad, all within just over two years, it's almost too much. He went from challenge to challenge to challenge, and we are all still dealing with everything.

Sometimes we talk about how nice it was to be naive and in a happy bubble, before any serious trouble started. Is the knowledge, experience, and understanding we receive from trials worth it? Some yes, but others, I would rather stay innocent and unexperienced. If I could go back and change one thing in my life, it would be to have our first son live. Any 'good' that came out of the experience can never make up for losing him. I don't want to understand why it happened because that would feel like accepting that it was okay to happen. Nothing is worth losing a child.

If you lose a spouse then you are a widow/er, if you lose your parents then you are an orphan, if you lose a child then you are a .... Yeah, that's right, there is no word for it. Maybe that's why no one likes to talk about it. I know a lot of people that can't even think about losing a child, so they don't think about it at all because it scares them.

There are many tragedies that happen in our lives that put us in special clubs. No one volunteers to be in these clubs, and you can't leave the clubs, and most people don't want to talk about your membership. You are part of a taboo club. The tragedies include loss of a loved one especially a spouse or child, loss of a limb, diseases and sickness, abuse, disabilities, mental illness, infertility, wayward children, and the list goes on.

The advice of most people is to get over it as soon as possible. But they don't understand that you don't ever 'get over it', you just adjust to a new normal. Life carries on, so you have to also. People are afraid to talk to you about your 'problem', not sure how to approach the subject, afraid to make you cry.

A close friend shared the following with me. This is about losing a baby, which is my personal tragedy, but I think a lot of it can be applied to other tragedies.

20 Things Angel Mommies Wish You Knew

1. I wish you would not be afraid to mention my baby. The truth is just because you never saw my baby doesn’t mean he doesn’t deserve your recognition.

2. I wish that if we did talk about my baby and I cried you didn’t think it was because you have hurt me by mentioning my baby. The truth is I need to cry and talk about my baby with you.

3. I wish that you could talk about my baby more than once. The truth is if you do, it reassures me that you haven’t forgotten him and that you do care and understand.

4. I wish you wouldn’t think that I don’t want to talk about my baby. The truth is I love my baby and need to talk about him.

5. I wish you could tell me you are sorry my baby died and that you are thinking of me. The truth is that it tells me you care.

6. I wish you wouldn’t think what has happened is one big bad memory for me. The truth is the memory of my baby, the love I feel for my baby, the dreams I had and the memories I have created for my baby are all loving memories. Yes there are bad memories too but please understand that it’s not all like that.

7. I wish you wouldn’t pretend that my baby never existed. The truth is we both know I had a baby growing inside me.

8. I wish you wouldn’t judge me because I am not acting the way you think I should be. The truth is grief is a very personal thing and we are all different people who deal with things differently.

9. I wish you wouldn’t think if I have a good day I’m “over it” or if I have a bad day I am being unreasonable because you think I should be over it. The truth is there is no “normal” way for me to act.

10. I wish you wouldn’t stay away from me. The truth is losing my baby doesn’t mean I’m contagious. By staying away you make me feel isolated, confused and like it is my fault.

11. I wish you wouldn’t expect my grief to be “over and done with” in a few weeks, months, or years for that matter. The truth is it may get easier with time but I will never be “over” this.

12. I wish you wouldn’t think that my baby wasnt’t really a baby and he was just blood and tissue or a fetus. The truth is my baby had a life. My baby had a soul, heart, body, legs, arms and a face. I have seen my baby’s body and face. My baby was real person – and he was alive.

13. My babies due date, Mothers Day, celebration times, the day my baby was born and the day I lost him are all important and sad days for me. The truth is I wish you could tell me by words or by letter you are thinking of me on these days.

14. I wish you understood that losing my baby has changed me. The truth is I am not the same person I was before and will never be that person again. If you keep waiting for me to get back to “”normal” you will stay frustrated. I am a new person with new thoughts, dreams, beliefs, and values. Please try to get to know the real me-maybe you’ll still like me.

15. I wish you wouldn’t tell me I could have another baby. The truth is I want the baby I lost and no other baby can replace him. Babies aren’t interchangeable.

16. I wish you wouldn’t feel awkward or uncomfortable talking about my baby or being near me. When you do, I can see it. The truth is it’s not fair to make me feel uncomfortable just because you are.

17. I wish you wouldn’t think that you’ll keep away because all my friends and family will be there for me. The truth is, everyone thinks the same thing and I am often left with no one.

18. I wish you would understand that being around pregnant women is uncomfortable for me. The truth is I feel jealous.

19. I wish you wouldn’t say that it’s natures way of telling me something was wrong with my baby. The truth is my baby was perfect no matter what you think nature is saying.

20. I wish you would understand what you are really saying when you say “next time things will be okay”. The truth is how do you know? What will you say if it happens to me again?

-Author Unknown

Don't ignore people who are different or had bad things happen to them, it hurts. We had friends who avoided us, and it's not fun.

Be mindful of what you say because though you may not say it to the person, it can get back to them. A woman I worked with at the time was asked if she wanted to go in on flowers for me, she said yes. Then asked if the baby had actually lived and breathed. The answer was no, it was a stillborn. She said, never mind then, it wasn't actually alive, I don't want to go in on flowers anymore.

Be mindful of what you say to the person. I had two women offer to have a baby for us. The first has many troubles of her own. She offered in a casual way in front of other people while we were playing a game. We don't have a close enough relationship on my end for her to offer that, and it was the wrong setting, wrong way of presenting the idea. Then she did it again. The other woman is very close to me and always has been. She talked in a humble unassuming way to me personally in a quiet setting. It was a vastly better experience, one that I actually appreciated. Another example, my husband's family wanted family pictures taken but happened to pick the three month mark after losing our baby. It was hard to take the pictures, which wasn't the problem. The problem was someone telling me to stop crying and get over losing the baby. I did stop crying because anger took over my emotions instead. I think it is totally reasonable and probably expected that a person would cry on the three month mark of their child's death, especially if family photos are being taken.

Most important is to understand that you do not understand what they are going through. You may have a good idea, or have gone through something similar, but everyone's experiences are still different. It's okay not to understand, it's okay not to know what to say. Just be there for the person, and they will help you help them.


  1. Lizzie, this is an absolutely beautiful post. Well put together, informational yet heartfelt, instructional yet kind. I know you've had a lot of time since Rylan to think through the best way to phrase all these ideas and emotions and it really comes through in your writing. I just really loved reading it! It really is a little weird that so many people have a hard time knowing how to respond to others that are grieving, since nearly everyone has some kind of trial in their life in which they will be the recipient of others' sympathy. I know I've certainly been guilty at times of responding inappropriately to someone who was grieving - not on purpose but just because I didn't know what the right thing to do was. I think you're doing the right thing - the best way to teach others how they should respond is to tell them so they can learn! Hopefully we can all remember these tips and do a little better with those in our life in need of comfort.

  2. Thank you :) I've been the same way, not sure how to respond to someone's crisis, even though I'd been through almost the same thing. I actually read on your blog about how someone just asked you what they should say to you. I thought that was a great idea and added that with my thoughts.

  3. Well said. I have been a lot more mindful of these same emotions recently... with Bridger's birthday coming up. I wish we weren't a part of this "club," but honestly, it is nice to have a friend that understands. Thank You for talking about it because sometimes... that is what some of us need. :)

  4. I distinctly remember looking at your blog with the pictures of you with Bridger one day. There was such a sadness in your eyes that I knew I didn't fully understand. The very next day was when that same sadness came into my eyes, and I understood. It's been so nice to have you to turn to for friendship and understanding, even if you're an ocean away!

  5. This is beautiful, Lis. Grief is so hard, and people can be so stupid about it. It seems like it changes people in really, really strange ways. Like your coworker... I just can't believe what she said about the flowers! It doesn't even make sense (why would you be sad for someone whose baby was born alive and then died, but not for someone whose baby was stillborn?). It just sounds cruel, honestly. But the thing is, I wouldn't be surprised to find out she's a perfectly lovely person otherwise. I guess we can never really understand what's going on in someone's head (or heart). And your final point is such an essential one: We should never think that we know what someone else is dealing with. All it does is get in the way of communication and cause pain.

    I'm so sorry for what you and Jeremy have been going through. It's been an impossible couple of years for the two of you, and I can only say that I love you and I hope you find comfort wherever you can.

  6. Thank you, it's been great to have family love and support. The lady is actually kind of an odd ball. She can be very nice then turn crazy on you in a second. We called her Hurricane Haley. (Her name wasn't Haley, but the Hurricane part was right, sadly.) But, I know she's also been through some crazy things in her life, which can leave anyone hurting. Life's hard, and we all just do the best we can.

  7. this was so sad- made me cry, sorry for your loss

  8. Liz--What a beautiful post.. Rylan is such a real person to me and I can't wait to meet him again someday. I wish I had had more time with him but I knew that it was such a tender time and I wanted to respect Jeremy's and your wishes. I can't believe how insensitive those people were (Aaarghhh! MotherBear rearing her paws!). Thank you again for reminding us that, no matter what we think, we don't really understand what you are going through and that we shouldn't impose our own deadlines or beliefs on you. Because really, we don't really know how we would act having the heartache of losing a child. Also, we shouldn't forget what the fathers go through. When I visited you in the hospital and was hugging you, I looked over at Jeremy's and the thought came to me that he was hurting just as much and needed to be hugged too, especially since society expects men to be "strong". LOVE ALL FOUR OF YOU <3

  9. When I look at our pictures of Rylan, I wonder how anyone could think that he doesn't count.