This will hopefully be the beginning of something cathartic, healing or just a really unusual way to start a personal journal. I don’t really know if I want to be writing this yet or what I want to write or if I will ever find the time. literally. But I know I have to do something. I have to do something urgently.
So this is another attempt of mine to try to help myself, my family and most importantly my nearly 5 year old son. If this place helps me express emotions which I’ve never felt before, vent, celebrate, question, confirm or nothing else than capture what is the most difficult thing I’ve ever faced in my life, then so be it. I don’t know what this is. I don’t even really read blogs, occasionally I read a few mother/parent style blogs but very rarely.
Also, I feel like this world I find myself living in is so quiet. This is a hidden world of secret support groups, communities and constant relentless questions which no one really has the answer you need but offering your own experience to a stranger is the next best thing. Its the most undercover, secret and hidden place I’ve ever had to stumble into and navigate completely blindfolded with no bearings of where I am or where I am going. Not to mention learning things I never wanted to learn nor thought I would ever need to think about. I guess I will just call it the special needs parenting world? I have no idea what to call it. This is my first time here, it appears I’m staying here, so I guess I need to agree on the name of where I am, where we are.
I apologise in advance if I say the wrong thing or refer to something in the wrong way (not politically correct or inclusive enough). Please forgive my genuine lack of knowledge, experience or exposure to disabilities and special needs. I am very new here, I genuinely don’t know what the “right” thing is to say most of the time nor do I feel its anyone’s place to decide what the right way to describe their life or world to look like or feel. But I hope I don’t accidentally, without intention, offend anyone. This is not my intention.
So I dont know my intention yet. Something wasn’t right in my heart, I felt like I needed to wear a go pro camera on my head to show others what my life really and truly looked like. I don’t know why I thought anyone needed to know, or if they’d even care. But it was like our world was spinning so fast and in a chaotic fashion, we were trying to get through an hour at a time, day at a time, a bath, a dinner, a car trip, the smallest things I had previously taken for granted as easy normal tasks, moments. Yet from the inside looking out, everyone else was just sleeping, eating, working, living and in it was in normal speed and life just kept on going normally outside for everyone else. But no one knew what was happening for me, for my son, for our family. I just couldn’t tell people the level of detail and reality, it was too much. My own mother even says words to the effect of, “even if you did tell people, they wouldn’t believe you, I wouldn’t have believed it myself, unless you are here for yourself and see it how it really is” . Apart from the extensive support of a few people and my husband, I don’t tell anyone. I stopped trying and I stopped knowing what to say . I couldn’t say any of it anymore. Often it felt pointless anyway.
But I wanted a voice, I feel like I have no voice. It’s the strangest thing, I do actually have a voice, I use it every day and speak with ease in the typical sense. I am usually a reasonably confident speaker and I can talk, argue, express, communicate with my voice pretty well when it comes to supporting my family, my friends, my job and most things I guess. But here in this new world, the special needs parenting world, I feel like I’ve lost my voice. I dont really know who I am anymore.
Everyday someone will say to me “you are his best advocate” or “you are his voice”. My son is non verbal. He has a very limited voice. In some ways he has no voice, only sounds. Not all of them are understandable to anyone other than a close few people such as mum, dad, grandparents, therapist, support worker etc. He desperately wants to use his little voice, but for some unknown reason… the words don’t completely come out. If I could give him my voice, I’d hand it over in a split second. If I could give him a voice to use for his whole beautiful special life, I’d never say another word again willingly, but thats a fairytale. You can donate a kidney, but not your ability to talk. So here I am, I’m his mother, advocating for him, using my voice and my words to help him, protect him and love him, yet I feel lately like Ive never felt so quiet, never felt so silent, never felt so unheard. I have to talk about him constantly to medical and therapeutic supports, but its not the same. We don’t get to express the small wins, the constant battles, the happy, the sad, the anger, the moments of absolute adoration or the recurrent moments of utter heartbreaking grief.
So maybe this will be a small part of my voice and a small part of his voice. Maybe it will be something another mother or parent or carer, like me, will read and feel like they aren’t crazy for feeling so alone. This is a really hard place and its not a world I ever imagined Id be in. But that can be said about any unforeseen journey in our life, yet here we are. We just keep going, we aren’t supposed to question it too much or appear like its “hard” or “unfair” because there is some concept that quietly accepting your personal challenges is a badge of honour or something to be admired. Quietly being brave and looking for the positive is to be admired, everyone has to be brave but some of us need to know its ok to be terrified. And even more so, its actually OK to yell and scream out that you are sad or terrified or exhausted or lost or alone. AND even more so again, it’s OK to just accept that is how we feel, that you don’t know what else to do or say, except yes, this is so hard. But I hear you and I see you.
When I hear others who celebrate those special people who took on a life difficulty with a smile and never shared what really went on behind closed doors, I wonder if its just me who feels like screaming out? Am I the only one who is upset or struggles or feels pain in this way? Why aren’t I “getting on with it quietly” and keeping a smile on my face and never letting the emotional burden show? I guess those people must be so strong, so toughened and so emotionally balanced that they keep it all to themselves and thats amazing. They must process things so well that they never need to show or talk about how crappy some things are. Well I don’t feel that way right now. Maybe when I get to some special place of acceptance, wherever and whenever that is, I will read this and say now I understand how and why. I feel like the silence is deafening. I want to hear other voices say yes this is really hard, you aren’t imagining it. No one talks about it, but yes we agree.
I know one day I will find that place of pure joy and the struggle wont be so silent, it will be more open and accepted by everyone around us. I hope one day, being vocal and using your voice (or attempt at a blog) gets me closer to that quiet gratitude place at the end of our rainbow, journey, path or whatever you want to call it. Im not there now. I want to get there, I read about it, I hear about it, I know it must exist for some. But I am hoping that I will find my way there, but I guess you cant get there without being here first.
So this is day 1? Blog entry number 1… whatever it is. I hope it helps.
A Journey to Joy 