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.