In addition to the daily surges of grief about our son’s life both now & the future watching him struggle to eat, breathe, sleep, communicate and play, the future for him and the huge impact on our own health & wellbeing, on top of that, I had one of those days which comes about once a week sometimes more, sometimes less. I miss my dad with all my remaining energy. Its funny how you have to handle this “losing a parent” grief on top of the daily pains of this journey we are on. It seems so excessive to have so much hurt in your heart and have to still get up all night long, get up all day long and talk/fight/email/cook/clean/shop/socialise (if you can ever actually find opportunity) or space in your complex chaotic world. But there is constant reminders of the father you lost. Always time to feel sad and most of the time you can push it to the side because you triage your hurts, today I am focused on fighting to get my son to eat his lunch at his new preschool without violently gagging in front of the other kids and keep him healthy/safe in this new place with new people who dont know his unique non verbal language.
I know I had about 2 hours sleep last night between 3 breast feeds, climbing in and out of my bed & the floor mattress next to the cot, making a bottle/s for my son, resettling the baby sitting up/laying down blah blah blah. It sounds ridiculous and it is, but I’m doing my best to survive. Atleast she’s out of our bed and not cosleeping every night. But its taken another huge toll on my health, limited broken sleep and my wellbeing. I hope it keep getting better and atleast I’m trying. I am in and out of our bed all night long as I pretty much work a night shift and day shift most days with some nights (like tonight) I get help with my mum or husband making my son’s bottles, but I still hear him cry, scream, hit the walls, kick the cot, cough, choke on the milk, breathe with floppy airways making a loud sound, reminding me how fragile every night of his life is.
Today I was extra upset. I miss my dad so bloody much. I know we are all grieving him, but wow, these days with my son fighting me and making me feel so sorry for him, then the grief for my dad on top… its just too much.
Today I think I cried for my father, who passed away in October 2019, crying maybe 5 times for no specific reason. I just ached for him. I ache to talk to him, to know he sees me, he sees my efforts, my constant battle to improve life for my son, our baby boy, his grandson. I cant even begin think or write in this space about the deep bottomless pit of pain I have to live with that is GRIEF that he never got to see my second child be born, to see and hear she was healthy. To see his face when he saw her for the first time or for me to live my life , thinking he could’ve died in peace to just know he had a final healthy granddaughter who was a wild independent fierce sister to fight for her brother and his grandson. Someone to make me feel like a more capable parent, someone who could tell me she loved me. He would know that if he hadnt passed away right before she was born. I have not one photo I can treasure of them together. This hurts more than it should, I know other people feel this.
I never wish that he’d lived longer as I didnt want him to be in pain or suffer for extended time to just meet her. But I do often wish I’d tried to have her birth come earlier. Makes no sense at the time because you just pray that the stars will align and he’ll be ok for just 2 more weeks and then she’d be there and he’d be there and then it’d all be ok. But life doesnt work like that. I wish I’d asked to have a c section earlier. I wish they couldve considered it. Her health was a priority to me as our son had been so fragile and will always be a fragile life, but yeah the ache is so real. I miss you so much dad. I wish you could see what we fight for and try to get done every single day. I wish I could tell you about everything we are doing.
The tears dont really stop, the smiles for the moments of joy come and they go, the exhaustion and fatigue is every day. Its not like there is ever a break from the broken sleep, the battles, the emotional rollercoaster, the noise. The daily noise. The tears come nearly every day, today they were all for dad. I wished I could send him a video, hear his thoughts on a new preschool environment, feel safe that he knew I’d spent 7 plus hours combined advocating in an NDIS meeting for more help for my son, that it had ended in my tears breaking down verbally to the NDIS representative the humiliation it causes me to beg for help, but I’ll keep doing it if it means I can give my son a better chance at feeding himself, going to school safely, making a friend, experiencing a conversation, anything in the world I can try to help him have. I will keep repeating myself and I wont stop until I cant breathe anymore.
I want him to know. He wont ever know. He will never know how much I fight for our baby boy and to give him an easier more comfortable life. To just have a moment of communication about his favourite things or the day or anything. We dont have that. We may never ever have that. It is so heartbreaking. The grief is real and keeps coming back every time you see or hear parents with healthy functional children near you. It never stops hurting.
I wish I could tell him and he could see how hard I am trying. How much we are doing every single minute of every single day, barely sleeping, getting by, living in a loud world with no real oxygen, just minute to minute, task to task, medication to medication, nappy to nappy, he’ll never know but I just wish he could hear and see and know we arent ever stopping, we never take a break because we cant anyway. I think I’ll probably die trying, but atleast we tried.
I wish he knew. I miss knowing that stories of him made dad happy. I miss knowing I had one thing in my life that made my dad happy. Its all gone now. I miss him so much.
A Journey to Joy 