Logistics

Having a sick child and all I have been contemplating and reflecting on certain things. So as not to disclose too much about my child or in any way infringe on her privacy…Kind of like HIPPA…I can only say that four years of round the clock care of your own child is…words cannot express what it is. I can say a few: heartbroken, exhaustion, forlorn, despondent, earth shattering, life altering, hopeless. These are just a few feelings I myself have felt. And YET I persevere and push my body beyond any limit I ever thought it could be pushed at any point day or night to lift her spirits, give her a moment of joy, or give emotionally when I’ve been emotionally drained to the rock bottom about 3 years ago. It must be different for a parent when they know what is wrong, if they have a treatment, a plan, an outcome. I don’t know. If I knew there were a cure or hope for a better future, maybe that would be different for me emotionally somehow. Either way I have expended every effort, brain power, body power, and emotional aspect that any human being possible could. I have done so with a deteriorating body, a constantly triggered PTSD brain, and challenges beyond most people’s ability to understand.

Being a hospice chaplain I learned there are far more things to do, caring for an individual than just physical. Meals are one. Have to feed a person. Hydrate them. Bathe them. Tend to their regular needs like teeth and blood work, etc. Arrange appointments, rides to and from, are just logistics. Logistics. The basic needs of a human being to survive and cope as best they can with their suffering. Logistics. Then their are other needs like holding their hand, lying with them so they are not alone, praying for them if they ask, listening to endless and constant purging of their soul that has conversations built up for years needing to be expelled. These are beyond logistics but survival. True survival to the root core of a person’s being. Caring, listening, empathy, and love in their darkest and scariest hour. I learned that in hospice and I did my best to provide each person I had the honor to be with the dignity of providing whatever their heart and soul needed.

I have done that for my daughter as well. It would be easy, well not for me with the muscle disease, but for anyone else, easy to get her to and from appointments. It would be easy to show up at an ER and send some flowers. It would be easy to bring dinner and…well do the logistics. The bare minimum for a conscience to do for another human being to not feel guilt over sitting by and watching them suffer.

Their is NO sacrifice in simply satisfying the logistics of keeping someone alive. And sacrifice is needed to help someone who is suffering. Sacrifice can be of the simplest ways. Sacrifice your time. Most good people would not even use the word sacrifice. They would consider it an honor to give any other person a tiny sliver of dignity to just sit and listen.

I’ve been reflecting on my daughter’s illness and as a mother how I have handled it.

Which led me to my own mother and my illness even spilling over into my daughter’s illness.

I’ve wondered, was it possible that my mother just got tired of having a sick daughter. Is that why she threw in the towel when any talk of past abuse came up. Because SHE felt and stated over and over again that she had been there for me. LOGISTICALLY. She had brought me meals and taken me to appointments and even shown up to the hospital that first week my daughter was ill 4 years ago.

My mother’s daughter, me, diagnosed with seizures, a muscle disease, deteriorating muscles and bones. My mother was here for a time for that. She drove me to appointments and has thrown that in my face countless times in past discussions where she said BUT look at all I did for you.

Which got me to thinking more. I don’t want my daughter to thank me for anything I have done for her. Infact, it is most certain, that if she becomes well, this whole time will be a blur and she will not even remember what I have done for her. I don’t need cards of thank you or other people to acknowledge or even know what I go through on a daily basis with my daughter because SHE is most important. I don’t need a pat on the back or even sympathy.

I have not walked away. My marriage has not faltered. We have stood as strong as we could for our daughter in every single way possible.

So, why did my mother leave me and her granddaughter knowing that we were both medically in critical condition? Because all she had to give were logistics. Basics. As soon as the hard stuff came along like actually facing the abuse that I endured, my mother could not even have a conversation about it. Imagine how that left me as a child. If my 70 year old mother could not have a conversation with her 40 year old daughter about something that happened 30 years ago, then imagine for a moment what me, as an 11 year old must have felt.

I’ve been reflecting on this for 2 weeks now. In these two weeks I have not been writing blogs I have been posting photographs because I have been unable to express the depths of my emotions.

A few weeks ago I was at an appointment with my daughter when my daughter started humming a song. It was a song that sent me back 25 year to a ski competition where a young boy pulled me into his hotel room and assaulted me. No one knows about it. I’ve never spoken about it. It was just one more boy in my waterskiing years that took part of me. But I remembered that time fully and was very dissociated through a very important doctor appointment which I could not bring myself to the present enough to even tell you what happened at that appointment. After that appointment smells have been affecting me profoundly. Something burned up in the house electrically and I had to exert myself washing linens to get the burned smell out. All triggering. No sleeping for me while still having to care for my daughter and her needs. I have been in a snowball of a triggered state.

Then the 4th of July came. I put on a fake flag tattoo to try to have fun and put on a brave face for my daughter. We were going make funny videos and watch fireworks from the front yard. But my legs just died. I could not move and ended up in bed for a few days.

As I was laying there I remembered the July 4ths of long ago when I was on the ski team and we were in a parade in our small town and later did a ski show for the towns people. I remember after it came out that I had been abused by the ski club member and my brother kept skiing with the ski show and I sat on the lake front that July 4th watching my brother ski with the man who had molested me for years with everyone else watching as well.

I lay here in my bed thinking that my mother could not be there for me back then so what on earth made me ever think she could be here for me now!

My life is crumbling. My health is crumbling. This is hard stuff. Watching my daughter suffering is I would say literally killing me. YET my OWN mother never wanted to hear about the details and my husband reminded me just recently that when I tried to tell her over the years she was fixated on the fact that I never told all the details back THEN.

Two days ago I got mildly overheated and my muscles locked up in total cramping. I screamed as my husband rubbed the cramping muscles and I felt awful he had to experience watching me in such pain. Some pain cannot be masked. Some people do not walk away in the face of that pain, but sit there beyond the basics and go beyond to try and help ease that suffering.

I have gone beyond for my daughter. My husband has gone beyond for me. My mother…it makes me sick. Sick. Just the realization that she walked away and while walking away blamed her own daughter AND dismissed her role in any of it. It wasn’t about what she did for me. Anyone could do that. A taxi driver could do that. A maid could do that. A paid professional service can do that. It is what she did not do. And has not done. She has not acknowledged, validated, or given unconditional love to a daughter who has done nothing but be victimized and destroyed by my own health and my daughter’s health.

For a moment, I missed her. I wished she could cheer my daughter up or distract my daughter by being the grammy that my daughter loved. But my mother abandoned her own granddaughter. For WHAT?! To be right? To not have to go beyond getting from point A to point B…logistics?

I can say this: my brain has PTSD and it won’t seem to let me forget the past. I WISH I could just forget my mother but for some reason when I see my daughter suffering and I know my mother walked away because she couldn’t get beyond abuse that happened 30 years ago…I hate her. I hate my mother. I will never forgive her for that. Not for me. I always thought she walked away because she was just tired of me being sick. Until these last few weeks when I realized that that wasn’t it at all. My mother was perfectly healthy. Yet did not hold my hand, listen to me cry, or be there for what I was going through. She didn’t when I was 15 and she didn’t 4 years ago. YET, I will undoubtedly, unless someone comes up with a cure for me, die trying my best to be everything for my daughter. When I do die, I sure hope my mother doesnt think she can weasel back into my daughter’s life. My husband would never allow that. And my daughter, well she is smart enough to see that she has no worth in her grammy’s eyes. That her grammy is too hung up on her own pride so much that nothing else matters.

So why do I care?

Why do I write about it?

Because I’ve blamed myself. I thought my illness pushed my mother away. Well I had to write a blog to share that that blame has now been lifted. I’m to blame for nothing. I was a victim who sadly was born into a very self righteous, self absorbed, narcissistic family, then unfortunately got a muscle disease. I got dealt a bad hand that’s for sure. And YET, I am still here fighting for my daughter in my own sinking ship. Because that is what mothers are supposed to do.

19 thoughts on “Logistics

      • I believe we all have a choice. My mother made hers. I am making mine. It is a shame that “should” has to be included in a sentence where a mother is involved but in my case that is so.

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      • I don’t understand what you are trying to say. Just spit out what you are feeling and say it like you want to say it. I am too ill to decipher cryptic at the moment

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      • I don’t want to be a burden while you’re feeling so rotten. You sure are entitled to your anger. I guess I’ve just read too much, like “Your Perfect Right”, which helped me distinguish between assertiveness and aggression, or When Anger Hurts. Then too, my own son disowned me, so I’m no one to listen to. Hope you’re feeling better.

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      • I’d love to not be angry. I’d love to have a mother, father, brothers, cousins, who did not disown me for just telling the truth. I’d love for my daughter to be well. I’d love to be well. I’d love for my mother to not to have had to be right but just to have known how to love. I do not claim to be perfect. I can most certainly distinguish between aggression and assertive.
        But my blog is simply a place where I can be myself. It is a place where I am true to my feelings and I can speak rawly and honestly without being psychoanalyzed, or judged, or dismissed. If my blog ends up a place like that I will no longer post a thing.
        If I were well maybe i would not even look back or look at the reminders or see videos of my daughter singing when she was 15 at a concert while my mother cried as she watched her and wish for one moment that I could go back and everything be ok. But i look at the video of my daughter singing and want more than anything for her to be ok and i loook at anyone who has had any negative affect on her and I truly feel anger. Real anger. And yes, that makes me imperfect. Should i hate. No. should i feel anger. No. should i place blame where it belongs and hold others accountable, yes, i believe i should.
        Maybe one day those who have betrayed me will not affect me. Until then, as my muscles die on my bones and my bones die inside that and my daughter withers away I sure the fuck will feel whatever i need to feel and i will write it. Until my last breath. Hopefully you will stand beside me in my journey. If you cannot, then so be it. I simply will not be judged though. I’ve had enough of that to last me many lifetimes.

        Liked by 1 person

  1. As you know, Bethany, I am 65 years old. My mother is 82. And it still hurts my soul that my mother threw me away when I was 14 years old. It still hurts my soul that my mother used to tell me repeatedly as I was growing up, beginning with my earliest preschool memories: “I love you, of course, because you are my daughter. I just don’t like you!”

    When I was around 11 years old, I finally worked up the courage one day to ask my mother WHY she did not like me. I was hoping to fix whatever was wrong with me, you see.

    “It’s just you!” she snapped. “It’s just the way you are!” Later, she added: “It’s the way you think that I don’t like.” As if she could hear my private thoughts, somehow.

    How does a child fix that. How does anyone fix that?

    I tried for years to get my mother to like/love me. When I graduated from nursing school as class president, I thought that would do it. Nope. When I published a novel (under a different name). Nope. When I was featured on an inspirational Oprah Winfrey Show “Remembering Your Spirit” segment. Nope.

    Today I am finally at peace and even happy in my life, without my mother’s love. But it still hurts at times.

    Every child needs and deserves a mother’s love. Being genuinely, deeply cherished and appreciated by the person who brought you into the world, is a deep human need. We never really outgrow that yearning.

    I am so sorry you do not have that need met. But I am super inspired and amazed by how you keep going and loving and functioning, despite never having that need met. You are awesome. And it’s your mother’s loss that she cannot even see and appreciate the awesome daughter she has.

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    • It’s been a bad few weeks with my health and my daughter. Just a really really bad few weeks. And i’ve been incredibly sad to not have a mother and to realize why I don’t.
      I cannot tell you how much I appreciate your loving and understanding comment.thank you!
      I really hate for you that your mother put you down and disliked you. I’d switch with her in a heartbeat.
      I think some days are just THOSE days where we wish things could be different.
      I’m sure for others out there hiking and working and not in chronic pain and taking care of a sick child maybe they can overcome easier, cope easier, i just don’ tknow. All i know is right now my life is incredibly difficult and I appreciate your kindness

      Liked by 1 person

  2. Oh Bethany, Im so sorry. Im sorry you mother chose made (and continues to make) those hurtful choices. You deserved protection, and the same unconditional love that you and your husb has for your daughter. Sending extra hugs and love to your family. Let the owls being you peace tonight. ❤️

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  3. I hate for you that you are living this. Everything you write is completely justified and makes sense. Noticing the comments about ‘should’ (without me judging because I’m not clear on what Nan was trying to say) but ‘should’ is a judgment word. And don’t get me wrong. I use it all the fucking time. Idc what people say, I think sometimes it applies. And in your reply to Nan, you’re saying that you should not be angry, etc. But I disagree with that. I think that anger is completely appropriate here. And besides, emotions just are. They are part of the human experience and are there to tell our minds and bodies the info we need to know.

    I know that sounds all analytical and something you don’t want. I’m not analyzing YOU, just the idea of judgment and feelings/emotions. I’m just saying that feelings are not something to judge. And that statement comes from my own experience with my family.

    Everyone else is/was entitled to how they felt. FFS my brother raged at me as he towered over me, as I sat in a chair and he bellowed at me, while B and brother’s girlfriend looked on (in shock in their own frozen response). When I told my mother about it she said, “Oh, well that was just an emotional reaction.” Or some such shit. Forget that I felt threatened and scared to death and that he towers over my 5’6″ frame with his 6’1″ frame.

    Sorry to get into my shit here, I’m just saying I relate and just like you’ve told me, You GET to be angry.

    I wish I had some words that would make all this go away, at the very least that you would be physically strong again, which would even help somewhat with the PTSD probably and that your daughter was well again too.

    The one thing that I notice with the family shit (within myself) is that the anger and other strong emotion comes in waves. I could be going along in life for a weeks or months and not think about them, not care that they aren’t in my life or whatever.

    And then BAM! Some thought or some reminder comes up where I really could ‘use’ family support, in particular my mother. But then the reality comes over me and before I know it, the pain of not having them in my life and knowing that it’s not safe for me to have them in my life crushes me.

    Big (painless) hugs and I am praying for a cure for you. And for your daughter. ❤

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    • So basically, what I was saying, was in a perfect fucking world where I was an enlightened being and perfect then yes, I would have no anger and would just ride off into the sunset but pardon me for being pissed as fuck that I am suffering and my daughter is suffering and that the person that I had HOPEd maybe not SHOULD have been there but HOPED would be there after everything LEFT and because of that I am angry because it hurts my child who is suffering. I just didn’t know how to put it but i seem to be able to put things to you more clearly about how I feel 🙂
      It does come in waves. I mean. Why the hell do people think i put nice little photos on here. Because I don’t live in anger. I go out. I make an effort. I try to find beauty and post it on my blog and for that matter not many people care or even comment other than a few including you. They seem to rather hear about my sorrowful life and i don’t always want to dwell there and so i switch it up with my path of trying to cope and be happy in the midst of this fucked up situation where I live with PTSD and the suffering of my daughter which breaks my heart on a daily basis.
      So yeah. Pardon the fuck out of me for saying someone SHOULD and all of that wording. I may not put the right words that are approved by readers but I am honest about how i am feeling and i thought that that is what this blog was all about.
      Maybe i should reconsider. I don’t know. This has left me unsettled and you have made me feel bettter this morning but overall i feel unsettled.
      I’m actually only angry for a short period and i wish it would last longer becasue if i am not angry and I despondent over this situation that I am helpless in. And before someone else beats me up for saying “helpless” i am referring to my health and hers and the PTSD. Yes we can all “choose” to be happy so they say and i do a damn good job showing that i go out and HURT my body daily to CHOOSE to find happiness and even mindfulness and even take photos to share and try and bring others cheer. But I kind of am wondering why now. Why in the hell do i try. What am i doing here. I just don’t know.
      Btw your brother is an asshole for towering over you and causing you fear. And no one stood up for you? They all suck too!
      I sent you an email btw. I can’t remember if it is the right one or not. My memory is off today with a few things.
      Anywy, thanks for letting me ramble on wtih my feelings and validating my feelings which is all i ever really want. * any anger or rage sent in this message is not aimed toward you or anyone it is simply me feeling angry

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    • Ps.
      I got my hopes up when the doctor studying my genes told me he had found some variants that he thought could give us answers only to have him check in with the other doctor to find these meant nothing. It is the rollercoaster of WE FOUND SOMETHING that gives me hope to a cure and then the literally dumping of emotions that happens when I find out that there is nothing again. My original doctor in england 12 years ago said ” in five years science will catch up and we will know what is wrong with you” and that didn’t happen. And it’s been so hard watching myself just fall apart physically waiting on doctors to find answers that they may never find. Wondering could it lead to an answer for my daughter too in any way.
      It’s just been a suck 2 weeks. A suck way suck of a two weeks. I feel i’ve been pushed to my limit but what does that even mean. It is not like there is a soft ground to land on when my limit tosses me over the edge right!
      I just wrote another blog. Maybe it will explain better about how i feel. Not sure. God i’m so unsure about anything anymore…

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      • Oh Bethany. That’s awful. I’m really sorry. I wish they would not say stuff like that. One of the worst feelings is having the rug pulled out from under you.

        I know that even if they didn’t say anything, them studying your case, you will probably still be hopeful. But this one who says something promising then says, “Oops, no never mind.” That’s so cruel.

        Dude, keep your mouth shut til you really know and there is no doubt. Fuck.

        Not the same thing but it reminded me of this: A few years back when I was of the mind set I had borderline PD, I was looking for a therapist who could help with that. I made phone calls and was up front about my suspicions.

        Now, when I call therapists and leave detailed messages like that, I only expect those to call back who can actually help and set up an appointment.

        I prefer that they don’t call back if they can’t help. At the time, I was really feeling shitty about myself, not that that is new but I was really raw about thinking I have BPD. Still wonder about it, but anyway…This one therapist called back and I answered.

        She said, “Hi, I’m returning your call from the message you left me and I’m just calling to let you know that I won’t be able to help you.”

        And that was it. No reason, just that. I hung up feeling a whole lot worse than if she hadn’t called me back at all. I was pissed off that she had called me too. I was like wtf? Why would you do that?

        She could’ve had a plethora of reasons as to why she couldn’t take me on as a new client. But I believed that it was because of the stigma about people with BPD and how difficult they are believed to be. I still think that and if that’s the case, there is nothing I can do about that. But the phone call was not necessary.

        I was hopeful when she called because I believed that she would only call if she was going to attempt to help. Instead she simply called to pull the rug out from under me. Or at least that’s what it felt like.

        Having a rug pulled out from under you like that will definitely make you feel hopeless and helpless. I get it.

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      • Omg i got those phone calls too!!!! Right before jess died I KNEW i would need asap therapy so i started making phone calls and i got call backs from the actual therapists saying JUSt that!!! Like ok wow i amTHAT complicated even though you dont even know me that you just KNOW you cannot help me. It was really hard to hear. I’m so sorry you had to go through that feeling too.
        Yeah and i wanted to tell this guy listen, unless you have an answer, don’t call me. Definitely don’t get my hopes up then leave me hanging. Then to say eh never mind. With genetics this far a long they should be able to do this. I know they should

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