It’s time to get real…I’ve been keeping a lot of feelings, fears, etc locked away for a very long time. I’m not hiding them anymore…they are perfectly valid and I need to give permission for them to float on versus tucking them deeper in shame or fear of what others may think…let this phase of healing begin
This was written to be posted in my daughter’s private group a month ago today…I chickened out. I wasn’t ready to release these deep thoughts out into the Universe just yet. I’m now ready to let it go. However, I decided that I want to keep her group the sacred space of hope that it is…so it is now becoming a blog. I have dated it the date of the writing so that as I add in additional past writings, the blog flows and makes sense in chronological order…here goes!
This is another tough one to share but it’s time. My daughter does not have an autism diagnosis, but I can relate on so many levels to this mother’s words and experiences. The world of special needs can bring so much pain and struggle that the general public cannot even fathom. I once read about a study discussing parents of children with special needs demonstrating the same medical findings as soldiers suffering with PTSD after being at war. Not surprising. The day in day out levels of stress are unimaginable to those outside the home. They are even unimaginable to the spouse not doing the primary care taking, medical management, etc. There is no time to work on healing from the stress, there is too much to be done that should have happened yesterday… or a week ago. And, the financial aspects. That’s a whole facet on its own that puts an entirely complicating spin on the already existing chaos. It is beyond ones imagination unless you have lived it.
I share the sunshine and roses in here. I know how important it is for everyone witnessing my baby’s journey to see and hold onto hope for her. So I share the things full of hope when I can create the time. Collective consciousness is so powerful. Prayer is a form of collective consciousness. Creator gave us so much power…we only must trust, believe it, see it in our mind’s eye, trust it is already being done and give gratitude for all that is transpiring unseen. That is my belief. That’s what this group represents. What is already being done…and the belief that it is…the holding space for all things beautiful for her.
I virtually share nothing of the challenges. I choose not to focus on those. I can’t. It’s like a rapid downward spiral and it rips right through my soul and steals my hope. It’s effing brutal, as this mom says. I have struggled so much for years even allowing myself to acknowledge my deepest fears, much less spill them out in black and white. I’ve learned my strength, but I know my limitations. I can’t acknowledge those things on a regular basis. I’d wither into a pile of nothingness on the floor. Quite rapidly. I have been working with a beautiful woman for several months now that a fellow practitioner friend and unbelievable biomedical doctor, Dr Sonia McGowin, introduced me to through the group, Soul Driven Healing. This incredibly talented medical intuitive, energy healing facilitator and teacher, Mallory McClelland has been guiding me to peel back those layers of fear, trauma, PTSD, etc one at a time as I have the energy to encounter and release them. I am finding freedom from my prison of fear again. I’m not even talking a fear of what is going to happen if she’s not independent when we die. That’s so far down on the list of my worries it’s not even really in my awareness. I refuse to accept that will be her reality. Refuse. I’m talking the fear of my child dying and there being absolutely nothing I can do to save her. I’m talking fear of further brain damage due to airway occlusion with eating, rapid onset respiratory distress, seizures stealing her ability to move air. Fear of lungs full of water or her busting her head open as she flails in the bathtub while trying to bathe her and wash her hair. These kinds of fears. All fears that have resulted from repeat experiences in our reality. So much has shifted for the better in the last year…some of those fears are moving away from reality into painful, nausea and panic inducing memories. But they are still deep wounds.
Hearing this mother speak of what she thought was going to be ok…not turning out ok. Oh how that hits home. I can’t tell you how many times we have tried to go here, tried to go there, tried to pretend to be a normal family for the day…it seems these days always result in a big fat reality smack that results in disappointment for everyone, hurts so deep that I just gave up at some point on finding the strength to even try anymore. It sucks for my other kids. It sucks that in order to have “normal family outings” I have to leave one child behind. That’s not a family outing…it’s a date with part of the family and that hurts. There just are no happy solutions but to just keep swimming. One day we will be able to do normal family things…and those days are peeking out more and more. We played hide and go seek at the house today. B participated, giggled so loudly, and squealed in excitement. That was fun. We played a board game the other night and B was able to throw the die for me on my turn and participate. There is so much hope. I will not stop, I will not give up until we ARE doing typical family things on a regular basis. Not just because B deserves it. My other kids deserve it too. I deserve it as a mother and my husband does too as a father. We deserve to do things AS AN ENTIRE FAMILY. Not just part of us.
Some may call sharing only the roses in here being fake. I call it survival. I call it holding a sacred space of hope for my baby. It is what it is. I’ll be sharing a glimpse of this reality I speak of soon…but, I’ll be sharing in celebration of a year of no seizures and as a part of my own healing process from the trauma. One day almost a year ago we really thought we were going to lose her, or at a minimum for several hours we thought we had lost all we had gained with her up to that point. I don’t know what I’d have done. I can’t start over. There are no strength reserves for that. We have come too far and it’s involved far too much work, sacrifice, pain, tears, etc to do it all over again. I just am afraid I wouldn’t have it in me. It all flashed before our eyes that day and into the night. Virtually no one even knows this occurred…it was far too traumatic and I couldn’t even bring myself to relive it in order to inform people what had happened and ask for prayers. I was absolutely frozen in a state of fear and trauma. It’s time…I’m ready to encounter it, release it and put it behind us. This was a big one. I didn’t sleep at night for a couple of months. Quite literally. I’d fall asleep momentarily and then my body would jerk awake as I jumped up in bed to look over and make sure my child was still alive. There were several nights when I looked and didn’t see her breathing (she was) immediately in our dim room and yanked her up out of bed in a state of full-on panic. One night her skin was chilled, same thing…instantly swooped her up out of bed. It was like a knee jerk reaction that would happen without my even thinking about it. Then I’d see she was fine and wonder why the heck I kept doing this. If I did fall asleep, I’d dream that we had lost her, and wake up in a state of panic as if it had been a premonition. Then I would be wired with adrenaline and couldn’t go back to sleep. I’d jump and my heart would race as I stared her down, just waiting for it, if my husband’s phone beeped, if the dog breathed heavily while dreaming, if anyone made a creak in the floor walking into the bedroom or out in the hallway, if the wind was blowing outside…God, please, can nobody do anything that might wake her up? I mean, last time she fell asleep on the couch and I moved her, we spent two days in the hospital. Nobody wake her up! I couldn’t sleep until my body just wouldn’t stay awake anymore. And then I slept. And she was ok. We bought a high tech monitor so I could sleep with a minute amount of peace. It took a few more months before I trusted that monitor and got any kind of sound sleep, but I did. And I do. And she’s fine 💗
Please, please pray or whatever you do to hold the healing space for all the parents out there who have lost their hope for their children. There are so many. They don’t speak about it to the general public but I promise you they are all around you…many more than you’d ever imagine. You may not even see them or know that they are there. But, they are. They may be on lockdown in their home, never making it anywhere but to therapy. That distraught mother you saw at the grocery store that her visible grief and lack of presence penetrated you to the core…maybe that’s a mom who cannot leave the house with her child. Can you imagine a life so vastly different than yours? Their stories are heart-wrenching. Just pray for them please, for them, their children, their families.