Today I cried in the shower, I let the tears stream down my face and I let the emotions I had been holding onto for way to long come flooding out. The tension release is not what you would expect, it’s like a rubber band that bounces back. It doesn’t get rid of the hurt, frustration and anger, it just stays the way it has been for 18 months and if I’m honest 10 years of similar emotions. Your child’s health is something you don’t think about until it’s taken from them. And today I look at a life full of my children not being well, a life where the normal mum worries get doubled and tripled. One daughter who spent her first decade struggling with seizures to now have a reprieve and one daughter who had a slightly bumpy ride with a handful of seizures, who`s become seizure free and is now living in a place that I don’t know if I could handle, with Fibromyalgia and POTS (Postural Orthostatic Tachycardia Syndrome).
I hate that I don’t know how to help her. I hate that we live in this grey place with no black and white answers. I hate that she is taking multiple medications to manage multiple issues. I hate not knowing why. I hate that I must watch her struggle and put on her functioning face every day.
Acceptance I have but am holding onto it by a lead and pulling it along as I go through my day, knowing that if I don’t accept our situation, I can’t function well to help my girl through whatever thing has buggered her day up.
Nerve pain, pain that changes and pain that moves, migraines and headaches, brain fog, flushed face, fatigue, memory loss, tenderness to touch, dizziness, vision changes, stomach pain, nausea, fainting, slow walking, holding on to walls to get around, breathing becoming laboured, heart racing and heart pounding, sleep ins to recoup and not being able to sleep because of a myriad of the above symptoms. Never a time where the body can just be centred, whole and functioning like it should be.
I’m a passenger, with my teenage daughter driving on a bumpy backwater road in the heart of Australia. I can try and guide her but I can’t tell her how to drive. There aren’t a lot of places to stop and get help so we just have to keep on driving and moving forward. What help we do find along the way is not exactly what we need and the relief of finding that the big place that has all the amenities is nowhere in sight. I have to let my daughter drive, she isn’t a little girl anymore she needs to be driving. She needs to feel in control and the times when I tell her how to drive she will want to go a different way or is stuck on a road that she just can’t get off. I wait till she works it out, I wait till she has a clear idea and then we drive on together hoping we find that wonderful place of good health somewhere. We haven’t found it yet.
There is little understanding of Autonomic Dysfunction and dare I say it I feel even more helpless than we did with my youngest daughter. There is no expert in our home town, there is supportive doctors who help where they can and call it like they see it. “Oh well that’s part of Fibro” and “I assume this is just part of her POTS”. For me who likes to understand the how, why and what of things I struggle with the unknown. I hate not knowing, but I accept that I am never going to fully understand it. Our bodies and minds are truly miraculous and the treasures and secrets that they hold are not all fully understood and that I accept.
My hair is now dry after my shower of sobbing. I can look at the wins that my girl has had. She is doing well at school even if she only gets there two or three days a week. She is following her passions. She is talking about her future as an adult and what she would like to do. She has acceptance and has moulded a new world around her new physical being. She has a humour so like mine that she knows how to make fun of almost anything and I know that is what she will fall back on when things are shit.
No happy ending just yet, maybe one day. No doubt more shower crying will occur, haven’t cried in a car for a while might pop that on the list. I will keep on letting it out and I will keep on talking about it with the people who have my back and understand my frustration and sadness and anger. There is no giving up and there is always hope. Hope is all we have so let’s drive this crazy car to the beach smell the sea air and start a new day knowing we are doing the best we can.
Ragdoll Mumma Zoe
Ha ha Ragdoll for seizures and now for fainting. Okay there is my sick humour coming out again.