“Please don’t judge me for asking this. I honestly don’t know where else to turn.
My child is very poorly, and we’ve been told that we may not have much time left together.
I keep looking at them and thinking about all the ordinary things I used to complain about.
The toys everywhere.
The night-time wake-ups.
The endless questions.
The little voice shouting ‘Mummy!’ from the other room.
I would give absolutely anything to have those problems back.
People keep telling me to be strong, but I don’t know what that means anymore.
Some mornings I manage to get dressed and smile. Other mornings I don’t want to get out of bed because getting up means admitting that this is actually happening.
I’m terrified of the moment when I have to say goodbye.
How do you make memories when every memory feels like something you’re going to lose?
Do I talk about what happens next? Do I pretend everything is normal? Do I tell my child how scared I am, or is that something I should keep to myself?
I keep wishing I could somehow take their place.
If I could carry this pain for them, I would. In a heartbeat.
I don’t want advice that tells me to ‘stay positive’. I just want to hear from mums who have been through something unimaginable.
What helped you get through the hours when you thought you couldn’t possibly survive another one?
What did you say to your child?
And how did you cope with the fear of the goodbye you never wanted to have?”
Source
May jesus be good to u and your child god bless ye 🙏
Just enjoy every moment darling ♥️ No looking in the past.Its about here and now..Please God everything be ok and you won’t lose your baby ❤️
Do you have support externally? Is there a children’s hospice near you.. they are wonderful places and not just for end of life care.. speak to your medical team and see what support you can get x
My son has a life-limiting condition. He is wheelchair dependent, ventilator dependent and in heart failure now. He was a normal healthy boy prior to diagnosis at age 3. He has outlived the life expectancy he was given. It has changed our whole life and our perspectives on everything.
He knows time is precious, he knows other people with his condition don’t make it out of childhood, he knows every new milestone is scary for all of us.
The only thing I can say is that you have to make the most of the time you have. It has genuinely made us plan every day as if it was the last. I don’t worry or even care about next month or next year, I worry about what plans we can make today and tomorrow. Not always big things, but things that matter.
I can’t say I don’t think about when the final day comes but I’m mainly to preoccupied in making today count.
You almost have to learn to play the cards you have been dealt as if they were the ones you wanted.
I’m so sorry to hear you are in this situation too ❤️