One week… one week.
That is the news we received from the doctors.
That is the estimated time left Emma has with us.
It might be faster, it might take longer, but a rough estimate.
My brain has stopped working. My stomach feels like a rock of ice has lodged itself inside it. I can’t breathe.
To keep those of you not following my on social media: We’ve had a summer of Emma gradually getting worse, and her need for care has increased and increased. Three times we have gone in to Sweden’s only child hospice. Three times the doctors have counted her out. Three times, Emma has bounced back.
But not this time. This time is different.
Emma is constantly drifting in and out of consciousness, and is too weak to even sit up. Her head is like a bowling ball attack to the top of a stick with a rubber band. She has no control over most of her body. From time to time, she can raise her left arm up and wave and move her legs about somewhat, but the leg thing is rare.
Emma’s body can no longer tolerate and hold the liquids that go with the intravenous medication. She has stopped eating and from last night, it seems she is unable to swallow, physically.
I have fought so hard. I have turned over every rock and I have travelled with her halfway across the world in search of something that could have prevented what we are now facing.
Emma’s tumour is one of the worst ones. No one has ever been cured from it. No one. Ever.
Emma is a fighter, and the odds she would still be around today is less than 5%.
My purpose, that has filled my being for the past three years, is over. I will now focus on keeping Emma comfortable and as happy as i possibly can. She needs me, and I need her. More than she’ll ever know.
I’ve been sitting having meetings with the doctors in rooms containing books with titles like “Death”, “How to continue after a loss” and having meetings start with the words “When Emma dies…”
I am tired. I am exhausted. I am beyond devastated and sad. I walk out of Emma’s room here at the hospice when reality hits me as I’ve said I won’t cry in front of her.
Think of us in our situation. Think of Emma.