Grieving the Loss of "Normal"

I know that I write a lot on this blog about “normal.” It must seem strange because I know that normal doesn’t actually exist. Most of the people that I look at and think they have a normal family and a normal life probably don’t feel the same about their own lives. But I think we also have to admit that there are a lot of families out there whose lives fall much closer to normal than mine. I don’t think it’s possible to feel further from normal than I do right now.

It’s hard for me to be around other people’s normal. I see them playing with their kids, chasing them around, taking family pictures, and it just reminds me how far my life is from that normal. I find myself wishing that things had turned out differently, and I could be a part of that normal crowd. Instead, I’m the person standing there uncomfortable and trying not to cry, for seemingly no reason.

I thought about this a lot yesterday. We were at a charity walk/run for some family friends. We were happy to be there to support them and their son. It was a nice morning with friends. It wasn’t until later in the day that I realized how affected I was by my morning. And it became a chain reaction as I dug deeper to understand what was really bothering me.

At the surface, it’s just hard for me to be around happy family times. I wish it wasn’t like that, because it makes me feel like a pretty selfish person. But it’s no secret that Gordon and I are fighting a very long and very difficult battle to try to get that happy family. It’s not a fight we have with each other, but with a universe that seems hell bent on making this as difficult as possible, and even potentially impossible. It is extremely difficult to be around something that you want so desperately, but is always out of reach.

So, that starts the sadness, and some guilt that I can’t just be happy for my friends who have something that I know is so precious. Then comes the wishing. I wish our lives could be normal like that. I wish that things went the way they are supposed to, and we could enjoy other’s happy family time because we knew it ourselves. Wishing for chasing kids around, comforting a fussy child, and taking family pictures that were complete with our whole family. It’s another layer of sadness when you realize that this can never be for our family. No matter what our future holds, we’ll never have that kind of normal.

And then the real sadness and guilt come. Because in wishing for this normal, it feels like I am wishing Vivienne away. In order for me to wish for that normal, it feels like I have to wish that Vivienne never happened. I understand that this isn’t actually the case – I can just wish that she never died (a lot of good that does me), but it feels more like I would need to deny her to have this type of normalcy that I wish for. There are no words that can describe the emotion I feel when I think about this. Once I had this realization yesterday, I spent the rest of the day just telling myself to breathe, because that alone felt impossible to me.

In the end, I know that I can’t change where we are. And I would never, ever wish Vivienne away. So I have to accept that this “normal” that other people get will never be for my family. And that becomes yet another loss to grieve.

Jumping Off a Cliff

I’ve long said that trying to have another child after you’ve lost a child is like jumping off a cliff. It’s a big leap of faith, and you have no idea if there will be a safe place to land. No one can tell you whether you’ve been given a parachute or just a backpack. You jump and hope for the best and try to prepare for the worst (even though you really can’t).

We recently decided to jump off the cliff again. It is not an easy decision for us, not only after what we’ve been through, but also because IVF is our best chance at getting a sustainable pregnancy and, hopefully, a healthy living child. If you’ve been through IVF or know anything about it, you know it is not an easy path. It requires shots – lots of them. For me, it meant 4 of them every day. It requires doctors appointments – lots of them. Every couple of days, I have to shuttle back to the doctor’s for an ultrasound and bloodwork. It’s no picnic, but it’s what we have to do because we want another child.

And so we jumped off the cliff with all of the challenges that IVF entails. And that sound you hear is splat. It’s the sound of someone who fell off the cliff without even getting the opportunity to jump. After 1 week of four daily shots and many doctor appointments, our IVF cycle was cancelled. Once again, my body couldn’t do what it was supposed to, and we were forced to cancel the cycle. We didn’t even get the chance to try.

It has been a difficult blow for us. It is harder than I can explain to find the strength to keep going when life keeps kicking you in the gut. And I see what everyone else sees – I’m not stupid. I recognize that the universe, God, whatever you want to call it is probably telling us to stop. But it is impossible for me to accept that this is how it ends.

And now, we endure more tests to determine whether this path is really an option for us. In the end, the doctors could tell us it’s time to pack it in. Or they could tell us that we can try to step up to that cliff again and take the leap. I have to wonder if I have the strength for either of those anymore. But I only have 2 options. I either find the strength to say enough and accept that the only children I will ever have are dead. Or I find the strength to jump, knowing that the odds are against us, and we never seem to get a parachute.

A Defining Moment in Time

While many of us have momentous moments in our life (both good and bad), I’m not sure that everyone has a moment that defines time for them. As I look back at my life, there are certainly moments that are seared into my brain – graduating from college, my Dad’s death, my Mom’s breast cancer diagnosis, and marrying my husband. While all of those moments are markers in my life, the death of my daughter is a definer in my life. All of my life can be organized in one of 2 time periods – BV and AV (Before Vivienne and After Vivienne).

The day of her birth and death aren’t just a date for me – they are a marker of time much like BC and AD are for everyone else. Everything changed on that day, including me. As I think about who I am, there is the Me that existed Before Vivienne and the Me that exists now After Vivienne. They are not the same person. The experience of bringing her into this world and saying goodbye to her changed almost everything about me and how I look at life.

I suppose this is true for anyone who goes through a truly tragic event. So much in a tragedy forces you to evaluate what you believe in, who are you, and what your expectations are for your life. It requires you to put your life back together from scratch, and it changes everything.

In my Before Vivienne time, I was an optimist. I believed that if I wanted something enough and was willing to work for it, it would happen. Good things came to people who believed and worked hard. I operated under the illusion that I had some control over my life and that as long as I did what I was supposed to do, things would work out.

I have to admit that the AV Me looks at the BV Me like a stranger. I don’t know that person anymore. As I think about BV Me, there is a mix of jealousy and pity. I envy the innocence she had that allowed her to be so positive and believe so strongly. And I pity how foolish she is for thinking that way. Poor BV Me who doesn’t know that life can be so cruelly unfair.

Not everything about AV Me is so negative. Sure, there are the waves of sadness, bittnerness, and anger that come with this new person. But the AV Me is also stronger, more understanding, and more appreciative of what matters in life. This new Me chooses not to take some things so seriously – work, keeping the house perfectly straightened, and caring what other people think of me. I have seen the real value in family and friends who have stood by us. I find more purpose in helping others – mostly other Moms who have been through a similar experience, who I can help by listening and understanding. In AV time, I have a clearer understanding of who I am than I did at any point in BV time.

I am grateful for the lessons I’ve learned since Vivienne’s death. I’d still go back to BV time and the Me that existed there in a heartbeat, but that isn’t an option. I live in AV time now. All I can do is continue to learn about this AV Me and hope that the good points will outweigh the bad.

Body Issues

I hate my body. Not in an anorexic, weight-issue kind of way. At every point in my journey to have a child, my body has failed. Every time, it seems to find new ways to let me down. My body seems to have a mind of its own, and its goals never align with mine.

In my early rounds of therapy, I would talk through my feelings of failure with my therapist. My mantra was “my body failed her, not me.” This was a means to not blame myself – I did everything I could to keep her safe. It was my body, not me, that failed her. That does keep me from thinking that there was something I did or didn’t do that caused this to happen. But, it is also a reminder that my body failed in its fundamental job to keep her safe from harm. At the end of the day, my body killed my daughter.  Sounds harsh, but it’s true.

As I look to our 3 losses after Vivienne, I can say that my body failed me at least twice again. Babies 3 and 4 were both ectopic pregnancies. My body couldn’t get these babies to a place where they could grow and develop, and instead, it put me at risk. Once again, my body failed in its basic job to follow the natural protocol of development, and 2 more babies died.

If there were a person responsible for all of this, I could direct all of my anger towards them. But ultimately, what is responsible is my body. Even though I try not to, my anger gets directed there – I don’t know where else I can reasonably put it. And considering I’m stuck with my body, and I can’t get away from it or change it, that is tough anger to manage.

Do you have any idea what it’s like to walk around with something you hate, all day, every day? I’m faced with looking at it every waking moment of the day. There it is – this thing that is responsible for the worst moments in my life, and I can’t get away from it, punish it, or even take out my anger on it.

It’s not as though the aspects that I hate are aspects I can change. If I hated my weight, my nose, my hair, I could do something to fix it. The solutions may or may not work, but at least there are solutions available. There are no solutions to fix what I hate about my body. I can’t un-do or change how my body has killed my children.

So what do I do with this anger? My only means to not blame myself for my children’s deaths is to blame my body. But then I am angry at something that I have to look at every day and that I can’t work out my anger on.

A Lost Limb

I’ve heard the metaphor many times that losing a loved one is like being wounded. Initially, you feel sharp, blinding, and unrelenting pain. But over time, the wound heals to a scar – it never goes away, but the pain does. I’d heard this metaphor before losing Vivienne, and I’ve heard it a lot since her death. I never felt fully comfortable with this analogy – mostly because it’s presented as a linear process. You have a wound, it heals, you have a scar. Once it’s a scar, it doesn’t hurt any more – it’s just a quiet reminder of what happened in the past. Losing a child isn’t that linear – it hurts, it heals, it hurts again, and so the cycle goes.

Recently, I read an analogy that seems much more appropriate for the loss of a child. The comparison is to having a limb amputated. There are a few reasons why this analogy feels better for me.

Losing a limb is tragic. It’s not the norm, and it doesn’t happen to everyone. When it happens, it gets your attention because it’s not how we plan for our lives to go. We all get scars – but most of us get to keep all of our limbs and all of our children.

Losing a limb is painful. If you’ve ever had a doctor ask you to give a number to your pain, you know that 0 is no pain and 10 is “losing a limb” pain. Losing a child is a 10 on the pain scale (actually, I’d put it closer to 100, but you get the drift).

It’s life changing in every way. When someone loses a limb, they have to learn new ways to walk, drive, and do everyday tasks. When you lose a child, we have to learn new ways to communicate with our spouses, new survival techniques around new Moms, and how to answer simple questions like “how many kids?” It changes all of your relationships – some get stronger and some fade away. You have to relearn how you relate to the world.

You never get over a lost limb. You learn to adapt and find new ways to get the same things accomplished, but it’s always present in your mind. You never wake up one morning and think “I totally forgot that I lost my arm!” just like you never forget about your child.

There are always reminders of how your life is different because of what you lost. While you may adapt to living life without a limb, the world doesn’t adapt to you. Similar to losing a child – you adapt to life with a child in heaven, but the world goes on with pregnant women, baby showers, first birthdays, first days of school, graduations, and on and on to remind you that your situation is different.

This analogy seems much more in line with what I’ve experienced in loss. The biggest difference that I can think of between the 2 is how the outside world sees you. When you lose a limb, people notice that aspect about you for the rest of your life. When you lose a child, it is invisible to the people you meet, and eventually, invisible to many of the people who know you. The battle to adapt and deal with the reminders and pain happens on the inside.

Thank God

I’ve written in this blog before about coming to terms with God and my faith through the loss of my daughter. My therapist tells me that this is my time to decide what my faith is for me, not what I’ve been taught by my parents and church. Every time I feel like I’m making progress with it, another question comes up to set me back.

I have tried harder than I can tell you to come up with an explanation of my daughter’s death that doesn’t have me blaming God. So when people tell me there’s a reason for everything or losing her is part of a greater plan that I don’t understand, I get angry. Those are explanations that force me to lay my daughter’s dead body at the feet of God and ask why He did this. That is not how I want to define my faith.

After some reading, much thought and introspection, I arrived at the conclusion that God doesn’t control everything. This isn’t an idea I was raised with, but it makes sense to me. A loving God (which is what I believe) would never put His children through this to make a point, to teach a lesson, or to get them from point A to point B. You can’t watch the news for more than 5 minutes before you have to accept that there is evil in this world. If God controlled everything, there would be logic and reason, and people would get what they deserve, good or bad. That is certainly not the world we live in.

So my latest aggravation in this area is hearing people give credit to God for their blessings and living children. I know that sounds harsh, but hear me out. I am certainly not against people being thankful for their blessings – honestly, I believe that more people take them for granted than appreciate them. And I’m not against people being thankful to God. But, let me tell you what I hear when this happens.

When someone says “the baby is healthy, thank God!” I start to ask “you gave them a healthy baby, why not me?”

 When someone says “God answers prayers!” I wonder why God could answer their prayers, but not mine. (on occasion, people make me feel like I didn’t pray hard enough for my daughter – I’m sure you can imagine how that makes me feel without having me explain it)

When someone says “I put my faith in God, and He gave me what I needed” I think about how I put my faith in God and got the worst heartbreak I can imagine.

When a child many thought wouldn’t survive pulls through, people say “believe in miracles!” All I can think is that God thought enough to get involved and save that child, but not mine. My child wasn’t worthy of miraculous intervention.

It’s hard not to feel like a heathen for questioning why we thank God. In hindsight, it was so much easier for me to get to a place where I could accept that bad things happen and they aren’t God’s fault. Turns out, it’s harder to accept that good things happen that aren’t God’s fault either. I had faith, prayed, and believed in miracles. My daughter still died, and I don’t believe it’s God’s fault. So if someone has faith, prays, and believes in miracles, and their daughter lives, is it to God’s credit? I just don’t know how to reconcile not blaming God for the bad stuff and still giving Him credit and thanks for the good stuff. 

What is Normal Like?

In the months after Vivienne died, it would cause me a lot of pain to hear people talk about their pregnancies and children. It still does, but lately, I find a new phenomenon happening. When people talk about it, I start to wonder what it’s like. I don’t wonder what they are actually experiencing, it’s more that I wonder what it feels like to experience it as the majority does, and not as someone who has lost a child.

I wonder what it’s like to get a positive pregnancy test and be hopeful and make plans. I had that with Vivienne. I’ll never have it again. If I’m lucky enough to get a positive pregnancy test, I will wonder if it’s  another miscarriage or ectopic, and I’ll be too scared to hope that maybe, just maybe, this is a baby we’ll get to keep. 

I wonder what it’s like as you progress with a pregnancy to be out and about, wearing your cute maternity clothes, and doing things largely in the same manner as before getting pregnant. I only got a little past halfway there with Vivienne, and I have maternity clothes I’ve never worn. If I can get pregnant again, I will likely spend a portion of that time on bedrest, and you can be assured that I will spend the entire experience feeling like I’m made of glass. 

I wonder what it’s like to go through pregnancy and plan for bringing a baby home, not thinking for one second that there is a chance you won’t get to do that. As I hope for the possibility of getting pregnant again, I actually think about things like not having a baby shower or decorating a room until the baby is actually here and healthy. We’d started those plans for Vivienne and never got to finish them. And now I wonder if I could ever do that before the baby arrived.

I was meeting with a vendor the other day at work. It was the first time I’d met her, and she didn’t know my story. As we talked about a project, she said she wasn’t around when that happened because she was still home with the baby. I have to admit, I was distracted after that. My mind immediately went to “I wonder what that’s like.” I wondered what it was like to go through a pregnancy, have a baby, take your maternity leave, return to work and be able to talk about your child without making people uncomfortable. What is that normal like? And I realized that I’ll never have that normal. I may go on to have another child, but I’ll never have that normal experience that it seems so many others get to have.

I’m trying to convince myself that having a normal pregnancy experience doesn’t matter – it’s bringing home a healthy living child that is most important. Of course I recognize that. And I know that a healthy living child makes it all worth it. But, I have to admit that I find myself mourning the experience that I’ll never get to have. I hope more than you’ll ever know that I’ll get to have another child, and that I’ll get to raise that child. But my path to getting to that point is nowhere near the normal experience, and it never will be. And that makes me sad.