It feels like such a cop out to say “you will never understand how it feels until it happens to you”, but that is the only way to properly convey this type of pain.  Many can only sympathize, and there are few that can fully empathize with the pain. I believe truly that it is too hard for people to actually empathize because no one wants to put themselves in our shoes. Why would they? Why would anyone want to truly try and feel the pain that accompanies losing a child? I’ve been thinking about a few things regarding what I wish people knew about losing a child, so I decided I would write about them here. What better place, right?

 

• Just because time passes, doesn’t mean that I am (or things are) better.

The grief of losing a child is not linear. There are days where I feel great, and there are days where I honestly wish I could just be with my Daughter at all costs. The pain will never “go away”.  Sure, it might lessen, change, or I might just become better at carrying my grief on a daily basis, but it will NEVER go away. If you think by looking at me that I’m feeling better, you’re terribly mistaken. I am missing my Daughter; she died inside of me and I couldn’t do anything to save her. It’s not a pain that someone gets over, ever. The guilt is no joke.  The love I have in my heart for her is not a flame that can be put out, and I would hope that everyone understands that. I will grieve differently day to day, from now until the day that I die, and people need to understand that. Sometimes you should really just give me a fucking pat on the back for even getting out of bed.

Yes. Still. Even after a year. And probably for the rest of my life.

 

• Losing a child doesn’t have to destroy your marriage like statistics say.

One of the scariest statistics I read after our daughter was stillborn was that up to 80 percent of marriages end in divorce after the loss of a child. I remember reading this percentage, and then re-reading it, to convince myself that I’d read it correctly. 80 percent?! Was that even possible?–Paul (a guest post on still standing)

After Kenley died, I never wanted Shane to leave my side. I had to be held at night to sleep. I needed him to be near me at all times. He was my security blanket, for lack of better words, and still is. I know that many people feel differently about their relationships after loss. Some women feel that their husbands are “over” the loss, or that their feelings aren’t taken into consideration. I’ve personally talked to many loss moms who feel this way. Some say that their relationship suffers in that they can’t talk about the loss to their husbands, for whatever reason. Some mention they don’t feel attractive to their husbands anymore, which makes their sex life suffer, which inevitably makes them feel sad and alone.

I asked Shane’s opinion on the subject and he had some really interesting things to say. He mentioned to me that there were times around the 5-6 month mark where he started to feel better, but I was still feeling intense sadness. He told me that he remembers making a decision to never make me feel bad for feeling how I did. He would consciously make an effort to allow me to cry if I needed to, and to not get frustrated if I was having a bad day, and he wasn’t. I’ve read that some spouses feel resentment toward their spouse for having bad days (while they are having a good day), and “bringing them down”; Shane agreed with this, and even offered up a few times that he felt that way.

We also discussed opening up to your spouse. If you’re feeling something, there is a really good chance that they are feeling the same way too. The triggers, the grief, it’s all different for everyone, but who can you relate to better than the other person who is feeling the loss of your child as intensely as you are? Don’t keep it bottled up.

This is why I love my Husband. He is open with me about this stuff; the real stuff that sucks to talk about. He knows he can tell me anything, and that I will not be offended that he may have been angry at me one day when I had a bad day and he didn’t. It’s okay to have bad days– your child died, it’s fully expected. We both wanted our marriage to work after the death of Kenley; Living without one another was never an option. It’s been different, sure, but in a good way; our relationship is stronger. I can sit here and honestly say that I have NEVER once felt like a divorce was even an option for us and Shane agrees with this 100%.

 

• Just because we are expecting again does not mean this baby will replace the child we lost.

I’ve read a lot (A LOOOOOT) online about rainbow babies. I’ve read that they can bring you intense joy; joy you never expected to feel again. I’ve read that loss moms can experience a wave of emotions when they finally hold their rainbow baby. Emotions that they’ve been suppressing for months while carrying their rainbow. The raw grief comes out full force again. When my Daughter is born (even saying the word “when” is hard because I cannot guarantee she will come into this world alive) I fully expect to feel a million emotions. This pregnancy has not been “normal” and her birth will not be normal. Subsequently her life will be as normal as I can manage to make it (while I always live one foot in joy, and one foot in sorrow). She will know about her older sister, and I will always make it a point to not let Kenley’s death shadow the birth of her. But, I’m sure it will be extremely hard.

Kenley was planned. She was wanted, and we tired for a really long time to conceive her. For her to be ripped away from us, so close to her birth, is cruel in ways that I have no words to explain. This baby will not take that sadness away from us. I will still be sad, but will have a living baby to hold. I will still walk into the nursery and think of the child who never got to see it. I will dress this baby in Kenley’s clothes, all the while knowing that they are brand new hand-me-downs. Life is never easy; life after grief is even more messy.

 

• PTSD in relation to losing a child is very real.

There have been many times since losing Kenley where PTSD hits me hard. I know there are people out there who think this (and all mental health issues) are not real; that they don’t deserve to be talked about and we should be ashamed of them. Well, those people are assholes. Those people have never had a bad day in their life, so its inconceivable that others could possibly feel anything other than great. There have been nights where I lay in bed, reliving the worst day of my life while listening to Shane’s rhythmic breathing as he sleeps next to me. It doesn’t matter what I do, I can’t stop my brain from taking me back to that triage room, and hearing the words.

Yesterday in the shower I was rinsing my hair and it hit me like a ton of bricks. I saw myself in the hospital shower, having to be washed by my husband because I physically could not move my arms due to shock. PTSD has no mercy. It hits you whenever it damn well pleases. Shane chimed in on this subject as well. He told me that he’s noticed it’s a lot harder than he ever expected it to be when co-workers and friends talk about their newborns or grandchildren. He went on to say that you want to be included and don’t want people to feel awkward talking about these things in front of you, but at the same time it’s extremely hard to hear. I think he was truly surprised at how sad/anxious he felt when he experienced his first “trigger” out side of the normal ones (babies in the store, etc etc). It goes to show you that PTSD can affect anyone, anywhere, anytime.

I found this on Grief Speaks and I think it’s an important piece to add to this post just incase someone is wondering if they might have PTSD related to child loss:

2.  Avoidance Symptoms:

• Staying away from places, events, or objects that are reminders of the experience
• Feeling emotionally numb
• Feeling strong guilt, depression or worry
• Losing interest in activities that were enjoyable in the past
• Having trouble remembering the dangerous event        

Things that remind a person of the traumatic event can trigger avoidance symptoms. These symptoms may cause a person to change his or her personal routine. For example, after a bad car crash, a person who usually drives may want to avoid driving or even riding in a car.

3.  Hyperarousal symptoms:

• Being easily startled
• Feeling tense or “on edge”
• Having difficulty sleeping, and/or having angry outbursts                                                                                                                                                                                                                        Hyperarousal symptoms are usually constant, instead of being triggered by things that remind one of the traumatic event. They can make the person feel stressed and angry. These symptoms may make it hard to do daily tasks, such as sleeping, eating or concentrating. It is natural to have some of these symptoms after any dangerous event. Sometimes people have very serious symptoms that go away after a few weeks. This is called acute stress disorder, or ASD. When the symptoms last for more than a few weeks and become an ongoing problem, they might by PTSD. Some with PTSD don’t show any symptoms for weeks or even months. 

 

• Some things are always going to be hard for us now.

Seeing babies, attending Holiday functions, or get togethers, or seeing children around/younger than Kenley’s age are just a few things that will always be hard for us. Like our Grief, I’m sure these things will change in intensity, and possibly become less triggering as time goes on. This, however, does not mean that I want to see your “baby bump” photos, or that I am ok with seeing your child who was born after my child died. There are few women who I am ok with seeing the above things, and they know who they are because I’ve told them.

I don’t mean to sound like an awful person, but it is what it is. I didn’t make the rules of grief, people. I know that there are some people who understand us not wanting to be around their children, and they respect that. I am so thankful for those people. Then, there are people who think it’s okay to send you a Holiday card with their newborn baby’s photo on the cover. THIS IS NOT OK. This has not happened to me, thank sweet baby Jesus, but it has happened (more than I can actually believe) to friends of mine who have lost their children. Getting a photo of your newborn child, on what should be our child’s first Christmas, is not something that should happen-ever.

Please tell me on what planet that is ok? Oh wait, you can’t because it’s not.

I’m pretty sure I won’t ever send out Christmas cards again due to the fact I think I jinxed my pregnancy with Kenley by including her name before she was born.

I know that grieving a child comes in all different shapes and forms. I know that everything I posted won’t necessarily apply to you, and your situation, but if even one person reads this and feels like they’re not alone, my job is done. That’s why I started this blog. I need people to know that they are not alone. There are so many women who came before me, and unfortunately, there will be so many who come after me.

You are not alone.