Sigh. One of those nights. I keep trying to sleep and my mind is way to active. I am thinking of someone from days long ago Demetrius who I recently got into contact with. I am enjoying getting to know him on a different level then a couple years ago. Though I have been tossing and turning and sleep eluding me those thoughts aren’t that intrusive.
What is keeping me up is the fact that I can’t stop my mind thinking of darker things. Might be one of the reasons this novel of mine is coming out so dark. My headspace isn’t that great. I’ve been snapping the elastics on my wrist often tonight. The feeling of my favorite blanket instead of feeling soft and plush feels itchy and like a ton of nails. Can’t decide if that is the autism or if its the fibryo. My guess is that it is the fibro as it tends to feed sensory input and start triggering overload. My ankles are itchy, I am to warm, I am to cold. Why do I bother to try, I can’t work and give back to society is a heavy thought in my mind tonight even though that is part of the reason for this webpage. A way to start to change that in a way that works with the alphabet of issues that I have. The music I listen to is annoying me. The sound of the water pump for my plants is to high pitch and hurts my ears. The list goes on, if it can cross my mind it is tonight. I just want to sleep. For once the characters are being quiet and calm about the next part of their story. So to give my mind focus I might create a binder with the computer image and on the back have notes about each character. I have something similar already, its just really messy. Though I think that might be normal LOL. The worst thoughts crossing my mind are hell.
The loss of my child. They couldn’t figure out what was wrong. After three years I felt the hand of a Dr on my shoulder and right now I can feel that same hand. I can hear that same voice “She is trying to die and the one thing that can save her will kill her” The scream that came from deep within is built up and locked behind a tight throat since the actual incident. So instead I lay here recalling every detail of that night. The way the lights hummed in silence as they stopped trying to resucitate her. I remember handing my cell to the dr so he could call a family member. I think my uncle broke land speed records to get to me. He helped me with the calls. To this day answering the phone is nearly as bad as making calls for pulling this memory back to my head. I can barely tolerate the phone because it makes these memories race. My brother and cousin forcing me to step outside and being handed a pack of smokes as I broke in my brother’s arms. He was the only one who I would let near me for hours after. I recall the smell of his cologne or body wash. I recall his silent strength next to me. I recall watching my little girl there as they tried to save her and I felt her leave. I had to say to her “I need you to stay, I want you to stay, I want to be selfish. You have been through so much though and are in such pain, how you take it I do not know. Rest now my girl and know I understand if you need to leave. If its your time” that was when i felt her leave. When it looked wrong them trying to bring her back. She was gone. I recall all the blood because part of her issues made it so she had no immune system and could not make blood cells herself. My wrist is screaming from how badly I am snapping the elastics there. What is worse is I want to cut so badly, I want a reason I can see for this pain. I want to watch some of the pain leave my body. I swear I hear her voice in my mind saying it is ok mommy, dont cry. I am ok.
I know according to Cree culture I am not to cry at night for those lost. It can call them back thinking their family needs them. Yet tonight I can not stop the tears falling. So i have smudge buring to help prevent this. While I ache for her to be near, my heart screams to hear her little voice. My arms feel empty. I have a song going that I have always listened to when upset like this. I have included it at the bottom of this post as well as other songs in that playlist. I am cupping a cup of hot tea as I struggle tonight. The loss of a child is not something you ever heal from, it is not something that ever stops hurting just as bad as that first day. You just learn to function and hold that pain so you can do more then exist. Some days or nights like in this case it hurts to much and you can’t do anything but cry. I recall the one night when she was low on platelets and the soaker pad of the crib was soaked in blood. I recall every detail of her sitting there and me poking my head out of her room to find out what they were going to do. Every resident that was in that unit trying to figure out what to do was on their phone looking it up frantically. I lost my shit that night and demanded they call “RAP” a rapid response team with a specialist from each major disipline of medicine that when called they come nearly running. In medicine your trained to not run, it causes fear around you. When you see medical personal running get the fuck out of their way. Soon as they arrived they were doing blood tests, running scans and in minutes they decided she needed the ICU. We had just switched her to a bed instead of a crib because she wanted to sleep with her mom. I remember them saying they would come get me when she was stable and I recall looking them dead in the face and daring them to keep me from her side. I have trauma training and I know how to stay out of the way but she is my daughter and I do not leave her side unless HER peditrician is there. The moment they heard her drs name they stopped fighting me and let me go. He does not like PICU and despite many of his patients being high medical needs and him dealing with many who no other could save and the fact that it comes with a high price as well. They don’t stand in his way. Not many do. It was a good thing to. I called a nurse on the IV line they were setting up dipping into the garbage can and her not using a different one. She was booted from the room for that one. They wanted to do an xray and my child by then was terrified of those things and it was unneeded by this point we had been fighting for a year, we had avoided PICU but knew many of the issues and it was a platelet issue. They had to stabalize her so she stopped destroying them as fast as they could give them. And platelets from women are often unable to be used due to a protein we create if we have ever been pregnant even if we didn’t know. It’s men who platelets usually come from so they can be hard to get. I recall having to wait for them when she was critical low as they decided with patients were in more need then others. They ended up giving a medicine designed to slow bleeding. Turned out her gi tract was irritated and that was why she was bleeding faster then we could do anything. This medicine ended up having to be given often. This was the first of many PICU stays. It was the one they all learned I am a mother with one hell of a medical background and can stand toe to toe with the most pig headed dr and win. When I needed to fight it often surprised people. I was calm and collected and the center of a storm unafraid of that storm. Striking with precision and hard evidence. I later found out that this was thanks to my autism. I could compartmentalize like no tomorrow and those with ASD in certain areas are nothing but logic. Makes it hard to describe emotions but it can be done. It also makes it so we can block them with the right training until the crisis is over and then we break. For me, I break often. I don’t want to be alone tonight. I don’t know who to reach out to who I would not wake when its 02h00 MST. I need to be held. The comfort I am getting is from my service dog who is near retirement as she lays against me doing a task called pressure and helping me hold it together. When I get to far down memory lane and a full blown PTSD episode (I have C-PTSD which means multiple triggers) she will do a task called interupt. I chose that to be her licking the hell out of my face. I can deal with the germs later but I don’t know anyone who can ignore dog breath. It eventually makes me giggle and get past the worst of it. She hasn’t had to go that far. Probably cause I am snapping those elastics so hard I am sure to have bruises later which is grounding me in the hear and now. Her father gets it to a small degree but even he can never understand my pain or other aspects as there are things I was the only one there. It took alot to get me to leave her side besides for a smoke. Yea I was a smoker, at that time I needed to be or mentally I would never have made it. I suspect that tonight being so bad is in part to an incident in December when my clotting factor was a bit to high and due to an allergy they had to run a neucular medicine scan. A test they did on my daughter that nearly shattered me, the only one I couldnt make it through alone. I had gone through surgeries with my daughter alone from start to finish and many other things. This one though drove me to my knees. Now I needed it and yea they found blood clots in my lungs. I also had to battle with my own dr who went “well if its so bad you need medication to get through it I dont think you need the test. the number is just barely to high and the odds of a clot are low” I think the nurse who was assigned to me actually stepped back. She had been one of the ER nurses that we seen often when living at Stollery Children’s Hospital with visits home. She had seen what happens when a dr pulls bullshit and this was bullshit. ANY risk of a clot is to high. Let alone with the fact that it was breathing issues that got me to the ER. This dr had already been in my cross hairs. I could tell I wasn’t going to like what she was going to say when she stayed by the door. You see blood clots in lungs are a silent fucking killer. Turns out me going on about any risk being to high and that she best figure it the hell out was a good thing. It was not just one clot found but multiple pulmonary embolisms found. I knew before I even left the hospital that I likely had another PTSD inducing point of life occur. The dr when I called the emergency mental health line agreed within minutes of seeing me a few days ago. My own experience and watching my child go through this those two incidents keep twisting and twinning like a pair of dancers together. They are so mixed that I will go from one moment it being my daughter in that scan and the next me.
So tonight I fight the memories, I fight what I want to do, I fight to keep my sanity and I fight to make it through each minute of this night. I fight to not cry because of the possibility of my daughter coming to me and leaving the round dance in the sky (Northern Lights), which is our heaven so to speak. Every time I start to cry I grab smudge or sage and light it praying to the Spirits, the Rabbit (waspos) which was the Cree name given to me in a dream and was very true. We could tell what our daughter was up to by watching the rabbits. Even now I have a wild rabbit in my bark mulch watching me. So the Wapos spirit is the main one I pray to. I pray to the Eagle to carry my prayers to the great spirits to grant me calm and understanding that there is a right time and right place for everything that happens. The good and the bad. Tonight their answer was to write and the music. Let it take me, let the drums, the beat of mother earth’s heart, seap into me, settle me as I write and let peace come over me again. It is not always easy but I make it through each time. They are all battles and I may lose at times like tonight however I will not lose the fuckin war and leave this world before my time and walk the spirit road until my time was actually supposed to occur and then I can join her. Either way I wait so why cause those I love that pain. Sometimes that is the only thing that stops me from looking at things and going “that would be easy with x, just do this”. I don’t fight the thoughts, I let them go through me and then send that energy to the spirits to turn into something good instead. There is nothing wrong with the thoughts, as long as we handle them properly and this is my method.
Thank you for joining me on this nightmare my night is tonight, thank you for reading this if you made it this far. It is not easy for any to read these things. I should know. There is always something wrong when we lose a child to death, it is not the natural order of things. She was only 4 and she is MY role model because even in the darkest times she would find a way to laugh and smile. Though when she was mad you knew it and so did half the hospital. What can I say, she was a red head. Thank you for being with me tonight and walking through this torment. Even though you are not here right at this moment knowing you are there helps more then I can ever tell you. Respect for making it though this journal entry, big respect.
Who am I? 
I would love to hear from you!