final word

Grief is a strange thing…a fluid thing. The way it manifests itself in adults and kids. It really keeps you on your toes.

Often times Tony and I don’t even know we are struggling with big grief until we start tackling it. We will just turn to the other one and say the words.. The ones that will unleash a landslide of understanding for the fights or explosions or misunderstandings of the last few weeks.

With kids its a sudden twist. I want them to know they can talk to me or other safe adults.

I want them to also know its ok to not be grieving their sister.

Its ok to just be. .

It is a small tightrope to be walking along. That balance between openness and demonstrating healthy big emotions while still allowing them to just be kids.

They surprise us though. They often do it very differently.

Nicholas wants to go the cemetery a lot. Everywhere we go he picks up rocks to “bring to sissy” When we paint them he does so slowly and deliberately wanting to make sure its just right for her. He wants to go alone with me and Tony. He wants to teach Charlotte how to paint her rocks for Jennifer too.

He was super into fluttering this year
He was super into fluttering this year

Jonathan wants to not go.

Jonathan’s nightmares seemed to have calmed down. He doesn’t often scream for me in the middle of the night.

Both boys often choose a "sissy shirt".
Both boys often choose a “sissy shirt”.

Nicholas never has. But he recently told me he has Jennifer dreams. But they are ugly. Not her. Not other people in them. Just the dream itself. “Its just ugly Mommy.” He never calls for me in the night. I had no idea this was happening. What is a ugly dream for a just turned 4 year old boy?

DSC_0346 (1)

Recently at a “talk dr” appointment for Jonathan his therapist told me he just wanted to talk about Jennifer the whole time. A lot about her. And about how its hard for him to say goodbye to anyone for him now. He has a fear of what goodbye might mean. Since he knows he said goodbye to her once.. Not knowing it would be the last goodbye he ever got to say to her. I wonder what all that really means in his little head. I wonder how best to help him.. since I certainly can’t promise that any goodbye won’t be final. ..

Jonathan drew this. a heart for all of us.
Jonathan drew this. a heart for all of us.

When we got in the car to leave that appointment a song came on  immediately. One meant just for him. He asked me to turn it up. And for us both to sing along. Changing the words the way we used to when Jennifer was in the car with us.. using “sissy” instead.

you always liked the final word

i know goodbye wasn’t final

but it sure feels that way to us.DSC_0845 (1)

..until there is a cure. .

9 Responses to “final word”

  1. Libby,
    Some of your blogs keep bringing up a questions for me, because I have actually see this happen before in my work. Has anyone spoken to you about the possibility of you actually having Post Traumatic Stress Disorder from the experience of watching Jennifer die? Everything was so fast, so much quicker than you expected and you seem to still replay a lot of things in your mind and carry so much guilt. This is not meant as criticism at all, just genuine concern for where you are at and wondering if perhaps that is what is going on. You seem really stuck when it comes for forgiving yourself, even though I think it is pretty clear to all of us that you did absolutely nothing horribly wrong to Jennifer. Sure, it’s just a label, but often labels lead us to the treatment that we need. None of this is your fault. No one is blaming you for what happened to your daughter and if they are they are cruel and completely wrong. Just a thought, it may be something to explore with your therapist that might bring some healing.
    Much Love & Respect,
    Andrea

    1. Yes I have thought of it.. and we have spoken about it in counseling. She brought a option for me to work through it.. but I am jus not sure I am ready yet.. I know its crazy but the guilt keeps me connected. Thank you for writing.

  2. Libby,
    I just saw your response to my comment about PTSD. I”m glad your therapist is on top of things! I think when you are ready you might find some comfort in knowing that you are to losing your mind, those feelings are part of grief and PTSD caused by what you have been through. I don’t know how to email you without my comment being posted and I would rather you keep this message just between the two of us.

    I also have PTSD from my Dad’s death. More from the process of him dying because it was very, very ugly and brutal and it has left me with some very big wounds. I live in fear of cancer. I am terrified that the few people left i my life that have not been stolen from me by cancer will also get it and die. I lost 2 parents and a father in law to cancer, a mother in law to sepsis, all in 2 years. The last 3 deaths were very close together, as in 2 weeks apart. Everywhere I looked someone I loved dearly was dying of cancer, and none of them had “pretty” deaths. I know there isn’t such a thing, but some go more peacefully than others. We did not get that lucky. Cancer stole my beloved Dad from me pound by pound, one spark and twinkle in his eye at a time. It went on for much too long and I feel like I was in some sort of combat that just never ended. It will be 2 years February 9 and I am still a mess. I don’t ever want to compare my Dad to you losing your first born child, that is not the same experience at all. But, there are a lot of similarities. So many that I wish I could share but my comments would be miles long. I know what it is like to watch someone not be able to eat a single thing and waste away in front of your eyes. It’s unreal to have to witness that and feel helpless and not be able to do a damn thing to help them stop vomiting and keep even a drop of sustenance in their bodies. That experience alone is so unbearable.

    It’s actually more common than you would expect for parents who have lost children to cancer to develop PTSD. Some have it around the actual diagnosis “event” and re-live that moment hundreds of times a day for years. Some struggle with the actual moment of death, but it sound like that was a transition that was heartbreaking yet beautiful at the same time. From your writing is sounds to me like the traumatic aspect was in the last few weeks watching Jennifer go downhill so quickly while you felt totally helpless and kept thinking “we were supposed to have 9 months”. There is just something about your writing that made me sense the PTSD. I also work in mental health, so I have more knowledge than the average bear.

    You don’t need a therapist, you probably don’t need anymore friends either, but I am going to offer my support to you anyway. You are welcome to email me anytime. I will respond, always. I can give you my cell number and texting is free for me in North America. I’m just not sure where to put that, because if this comment pops up right away then my cell number will be out there for all the other readers to see which I don’t want.

    So, why don’t we do this…would you email me? Just say “Hi It’s Libby” so I have your address I am at andrea.macphail@gmail.com with my last name, just remember i’m a MacPhail, Mac like an apple, because if you put mc it won’t go through to me. Then I will send you my contact info. I come across interesting articles about grief and PTSD that I can share when you are ready. Or we can chat about it on a friend level, not a therapy relationship, you already have a therapist!

    And if you are not interested at all, that’s cool too. Or if you are interested 6 months from now, whatever works for you. I’m happy to be another person you can call on in whatever way is easiest for you, the odd text, many texts, quick emails, a FB message, whatever you like. No pressure at all. I don’t want to add to anything you are already going through, but I do want to offer since we seem to be at really similar points in our grieving process, and our loved ones have their death anniversary 3 days apart!

    In my work I have supported a few families who have lost children to brain tumours. I don’t know why I have been called to do this work but the opportunities keep presenting themselves and I don’t seek them out. I am very familiar with DIPG and worked closely with another family who lost their precious child to this horrible, evil tumour. Then out of the blue another family dealing with DIPG contacted me, coincidence? I’m not sure. But I now have an abundance of knowledge of DIPG and what it does to children and their families. I am trying to just accept that this may be a path that God has in store for me and not question it, but it is certainly a very unusual path.

    I have shared your blog with many colleagues and coworkers. I am concerned that one of them may have made a few unsupportive comments that came across completely the wrong way, but honestly she should have known better, but people say things sometimes without thinking especially in writing and they just don’t realize how harsh it actually sounds, especially when the person receiving the comments does not know them or their personality or communication style. I feel sick about it and hope I am wrong, but I really think I know who one or two of the not very nice comments have come from in the last 6 months or so. I know it’s not my fault, I cannot control what people do, I just feel terrible about it.

    So that is also partly why I didn’t want this to be posted, and perhaps if it does get posted you could just remove it from the blog for me? I tried to find an email address to contact you but couldn’t see one. It could very well be there, as plain as the nose on my face and I don’t notice it! Like I said, I’m not doing so great right now and my brain gets foggy when my grief is really tough and feeling overwhelming.

    Okay, that’s enough rambles from me.

    Take extra good care of yourself. You deserve it. And please, please, please let go of this beating up of yourself. You don’t deserve it. You did nothing wrong that requires forgiveness from Jennifer. You loved and adored her with all your heart, and you were there for her every single moment through the scariest moments of her life. You are a good Mama!

    Hope to hear from you when you have the energy!
    Your friend,
    Andrea

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