I often find myself feeling like If I think a negative thought eg: death of a child or sickness brewing ……
I will jinx it and I often find Im having a battle against my own thoughts before I even let them become full thoughts.
It’s a stupid mindset yet it’s also a survival mindset. I’m so alone and battling this alone. Which is fine as I’m also very emotionally strong. To have your children sick with such life limiting illness though is crippling and it hurts like no other pain other than a mother losing her child experiences. The emotional pain becomes physical and the physical becomes mental and it didn’t stop…. If your child is getting worse medically it gets harder and watching your child lose abilities we all take for granted is like another knife to the chest.
I watched my daughter suffer for 9 months in physical pain and no matter what drugs and what therapy or positions nothing would help. I begged and begged for help in hospital. She was on Valium morphine and epidural and nerve pills and still in agony from both hips being reconstructed. Her bones were brittle and breaking just from doing her daily cares in bed with an air mattress. The only thing besides time that helped was Bone infusions
Bone therapy every three months, sick for three days as a side effect but so worth it. We have been home bound since September last year after five long months in hospital in another state. Since starting bone infusions my daughter has come off the morphine and oxy, she has started to laugh again she started to wake up and the most basic things …… She started to wee again
Having being able to wee again means I’m not doing caths every four to six hours. Such an invasive thing to do to a little girl. No one wants to be doing this.
Never did I think I would become so multi skilled and so many different levels. 21 medication for one child three times a day. Usually every third hour I’m giving meds day and night. My son is on five meds twice a day and that’s easy. It’s amazing what the brain can hold. I have my alarm on my phone set to wake me over night but I usually wake five to ten mins before it goes off.
I lay in bed at night and always struggle to fall asleep without scary thoughts. I will get an idea and get up and research or I will write it down to look up the following day.
My daughter sleeps with cpap as she has obstructive and central Apneas and I have her on a monitor that alarms when her heart rate drops or is to high and her oxygen drops. It alarms on and off all night as she is epileptic and also just stops breathing.
The other night I actually fell over as I fell asleep standing up ( not a rare thing) but this time I zonked and hit the deck lol
most nights I’m up with her three to four times and hour and by around 6am after meds she will go back to sleep. She is still very much mentally like a baby in many ways and on a good day she will listen but is no verbal and not always able to understand me. Somedays it’s like she isn’t there at all and she laughs and laughs at shadows, sounds and everything. It’s beautiful to hear after being such a hard year.