Disjointed Musings on Grief and Death

I don’t know what to write today. My feelings are very confusing lately. I also haven’t had as much time to write. I usually write when Max is at school, but I have had appointments every school morning lately. And I’ve been trying to make our evenings LESS crazy so ….

Honestly, I’ve thought a few times about taking a break from the blog or just not writing about my grief anymore. It helps to get the feelings out, but I guess I am entering a new phase where I’m not sure I want to share my personal feelings with people so much anymore. It’s partly a new phase of grief, partly pregnancy hormones, I think. Pregnancy has had the welcome side effect of making my emotions more accessible. Unfortunately, I’d forgotten how easily I anger when I’m pregnant. I am very irritable. Basically, almost no one can win with me.

If you’ve ever been through a loss, you know that people want so much to help and don’t know how. Oftentimes, they either pull away from you, because your pain hurts them or because they don’t know what to say or they say and do the “wrong” things. Most of us have known people who suffered some sort of loss and we know that helpless feeling. Most of us have experienced some kind of loss and we have experience with people inadvertently being insensitive and cruel or just plain annoying and unhelpful.

I appreciate so much all of the support I have received from family and friends so far. Most of it has been fine. The things that have bothered me, I’ve ignored or just said, “Thank you” and moved on.

The problem is that most people I know have not experienced what I have – the loss of a child. We have a large circle of friends and acquaintances, so we do actually know a few other people who have lost children or have children with serious illnesses. We have gotten to know more since Lucy became sick.

This experience has opened up whole new viewpoints to me. I’ve seen the world of chronically ill children and their families. I am experiencing the world of people who have lost children. I struggle between wanting recognition and special treatment for the terrible loss of my daughter and just wanting to be treated normally.

I’ve been reading “The Still Point of the Turning World” by Emily Rapp. She lost her son Ronan to Tay-Sachs. She was also born with a congenital defect that necessitated the amputation of her foot. She spent a great deal of time in hospitals as a child, enduring many surgeries. So, she is a member of three communities that are marginalized or hidden in our society, but are actually much more widespread than most think, or want to think. She has a disability, she cared for a terminally ill child, and now she has lost a child.

Her experience differed from mine in that, although both of our children were diagnosed with terminal illnesses, Lucy did have some hope, no matter how slim it was, from day one. They knew their son would die from day one. But the thing we have in common is seeing things from the other side and seeing how no one understands what it’s really like to have a chronically ill child or to lose a child unless they have experienced it. And many don’t want to. I have not experienced the outright cruelty and insensitivity she has as a person with a disability and the mother of a child with Tay Sachs. That was one thing that was a blessing and a curse with Lucy’s illness. No one could tell how very sick she was from the outside. There were subtle signs. She was very quiet and very pale much of the time. But most people are not perceptive enough to note those things, especially when they don’t actually know the child in question.

The fact is, for many people, everything will always be fine. Nothing all that bad will happen. At the very least, they probably won’t lose any of their children. But child illness and child death are much more common than we think. Death is a natural and normal part of life, even though many of us have a very hard time thinking of it that way, especially for children. However, it does create a cognitive conflict, at least for me.  As I mentioned before, I want to be normal and I want everyone to recognize what has happened. For me right now, much of normal life is insensitive and cruel. Normal conversation at a girls’ night out can take a dreadfully hurtful turn for me and the speaker doesn’t even realize it. And I have to sit and smile and pretend it’s ok, hoping like hell they will drop the topic soon or casually leave the table. Because I can’t expect the world to revolve around me or stop and it’s not fair to make others feel embarrassed or like they have to walk on eggshells around me. I don’t want them to walk on eggshells around me. Because eventually people get tired of that and they walk away.

Stores won’t stop selling girls’ clothes. People won’t stop having little girls. The little girls in our family who were born the same year as Lucy will continue to grow and eventually become older than her and there is nothing I can do about it. Except be angry and avoid these things when I can. And hopefully, eventually feel better about it.

Now that I am having this experience I feel like it might be my responsibility to gently educate others about it. We are still a normal family. We don’t sit around bemoaning our loss constantly now, any more than we did after Lucy’s diagnosis. Both events caused grief and anger. It takes time to adjust. I often wondered if anyone realized exactly how hard it was for us when Lucy was sick. How much her diagnosis changed our lives. But we still laughed and enjoyed life then and we do now. Losing our daughter has changed our life, but it has not ruined it, no matter how much it might seem like it sometimes. You find a new normal.

Every day, you probably encounter sick children. Every day, you probably encounter someone who has lost a child. You can’t always tell by looking. And it can happen to anyone at any time. I don’t say that to scare you. It can be a freeing thought as well. I know that seems weird in our “knowledge is power, we can protect our children from everything” age, but it’s true. I breastfed my daughter, I followed all the safety rules. She still developed a fatal illness and died. There was nothing I could do about it. We basically learned that from the autopsy report recently. There was probably no way we could have anticipated or prevented her death. That was reassuring and frustrating at the same time.

I used to shy away before Lucy got sick. I tried to avoid sad stories, because they made me so sad. I am ashamed to admit that I still shy away from stories of children who have been murdered and feel like those parents have it worse than me, which is exactly what I don’t want people to do to us. For those of you who know someone who has suffered such a loss, you don’t have to do things. You don’t have to come up with words of wisdom. You don’t have to fix anything. Just listen. Ask them what they need. Tell them you’re sorry. Don’t tell them it will be ok. Don’t tell them it’s God’s will or plan. Don’t tell them you “can’t imagine” or you don’t know how they do it. Don’t say you could never go on if you lost your child. You may really mean that. You might be trying to express understanding or admiration. But it just exaggerates the fact that something bad has happened to them.

Also, do not give advice if it hasn’t been solicited or you haven’t experienced what they have. Just don’t. No one’s grief process is the same.

And if you’ve said or done any of those things to me or anyone else, do not feel bad. We know you mean well. We know you care. We also know this situation is very confusing for everyone. You want to be supportive and we want support and the last thing we want to do is hurt anyone’s feelings or make people afraid to give that support. I just want to make it easier and less confusing for all of us, if that’s possible.

I’ve had a protective wall around me since we lost Lucy. Sure, I’ve cried and been angry and sad at times, but I still don’t think it has really sunk in that she’s gone. I think that wall might be starting to come down. I find myself getting a bit shaky when I talk or write about her. I think I started to have that reaction right after it happened. The first few days, I kept having to remind myself to breathe. I found myself having to force myself to breathe a few times. But I found ways to keep myself busy and squashed it. Moving forward with the grieving process now is scary, but I know it will be worth it.

And I know you will all be there for me. I wouldn’t have it any other way. I would rather have you here saying the “wrong” things than have you avoid me out of fear. J

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