10. Feb, 2022

Drip, drip, drip...

The last two days it has been feeling as if small, but constant drops of my soul have been dripping out of me and making a puddle of misery on the floor. Last night I was thinking back over my life and I realised that I had a rather miserable deal going on in the life department.

Just some of the things that sort makes me feel I am cursed:
  • difficult childhood and teenage years at home
  • diagnosed with my first auto-immune disease at 23 - Lupus and Raynaud's phenomenon
  • my parent's got the divorced one day after my 23rd birthday
  • I had to move out of my house on my own
  • I was diagnosed with my second auto-immune disease - Sclerorderma (systemic sclerosis)
  • broke up with my now husband because he did not want to get married
  • I was diagnosed with my third auto-immune disease - Sjogren's syndrome
  • I got pregnant and gave birth to my still born son at 26 weeks
  • I got pregnant (with my now husband's baby) and they said it was 75/100 chance that he had down syndrome. Luckily it was confirmed he was normal through amnio-synthesis
  • Raine was born at 29 weeks and weighed 1550g. His lungs collapsed, his kidneys stopped, his stomach stopped, he had two brain bleeds, they wanted to amputate his hands at one stage. They thought he might develop cerebral palsy because he was ventilated for so long. He was in NICU for 54 days
  • My sister's baby boy drowned at 13 months
  • I was retrenched after the company I worked for was closed down
  • My dad died after I wrote him off completely and now I live the guilt everyday
  • My cousin died in a car crash
  • I fell pregnant but lost the baby at 10 weeks. It was a little girl and my veins/arteries stopped providing her with oxygen due to my illnesses
  • I fell pregnant and Liam was born at 30 weeks weighing 1046g. He was so small that he was about 20cm long and his head was smaller than a tennis ball. He was in NICU for 45 days.
  • Liam choked on thickened milk (used because he had reflux) in a shopping centre and no-one helps you, they just stare. Luckily emergency personnel were shopping in the shop next door and they helped and rushed us to the ER in their emergency car. Liam was placed back on a ventilator for 5 days and he had brain damage on the frontal lobes
  • We were told that Liam would have difficulty with short term memory, language, reading and understanding music
  • Raine was diagnosed with ADD
  • I was diagnosed (actually self diagnosed and confirmed by neurologist) of axonal peripheral neuropathy in all the extremities and my ears through a spinal tap. I had to have it twice as the first one was leaking. I thought I was going to die from the headaches
  • I had my first bout of cellulitis in my feet
  • Liam was diagnosed with ADHD and anxiety
  • I was diagnosed with Vasculitis and cellulitis
  • I had to quit my job because my husband threatened to leave me. Choose family or career
  • My fingernail grew in and it caused gangrene and I was in hospital for two weeks. They eventually amputated the tip of the finger, but nearly caused a heart attack when they got all my drips confused
  • I lost weight to about 43kg in two months, I could not breathe and I could not even walk to the toilet without wanting to collapse from tiredness. It was like that for another two months
  • I had my stroke on Boxing Day due to septicemia left over from the finger which spiked my blood pressure. This also caused major depression
  • I had two droopy feet for about a year and I could not gain weight
  • I lost most of my own teeth and are left with only 8
  • I had a neuropathic pain episode on 3 January the next year
  • Liam's primary school told us to find him another school more suited for his needs in grade 2
  • My middle sister immigrated to New Zealand
  • Covid happened, my mom was stranded in New Zealand and my youngest sister immigrated to Australia
  • Liam died on 19 October 2021 at 13 in our garden whilst creating an boot camp concept in the trees and the ER people told everyone Liam hanged himself. Two pathologists confirmed that he was unconscious when he strangled after hitting his head against a rock
  • My father in law fell down the stairs in the same garden
  • My mom-in-law had a nervous breakdown and we had to book her into a restful sanctuary
  • I broke my ankle on 23 November whilst getting off the couch to switch on the lights to write in my journal
  • My father-in-law had a heart valve replacement today

Going through this depressing timeline really put me into a very dark place last night and I have not felt that dark place since I had my stroke. The death of Liam has really sucked me dry and I am asking myself what more does God want from me? He says he will never challenge you beyond your ability, but taking Liam is really beyond my ability. I am not strong enough to live like this until I die (could be 20 years still).

Speaking to other forever parents, apparently like most things in life, it will first get worse before it gets better. But will it truly get better ever or will we just learn to live with the pain. I am already exhausted beyond expression in words and next week it will only be four months since Liam got his angel wings.

Heaven is currently an abstract concept for me and I cannot get my head and heart around what or where this mystical place could be. But it feels very, very far away...

Am I cursed or just unlucky?