Måndag morgon. Sovit oroligt, mycket stök i känslorna just nu. Både mamma som ska få besked och lilla Emmis som är väldigt dålig nu.
Det här skrev Emmas pappa Micke här om dagen på deras blogg:
”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.”
Som ni förstår är det här otroligt hårt. Jag ska och krama Emmis idag, sitta hos henne så länge jag bara kan. Kanske läsa hennes favoritbok. Jag vet inte hur länge jag får med henne. Läkarna säger en vecka. Kan inte ta in det, kan inte det.. Hon som alltid kommit tillbaka med sitt busiga leende hur dålig hon än blivit.
Förlorat en person i hela mitt liv. Min älskade farmor, som ni vet. Det tog flera år innan jag kunde se på våra minnen med värme, inte drabbas, och bli ledsen istället. Varenda vår har gjort ont fram till i våras, den våren var vacker.
Hur ska jag någonsin kunna ta att Emmis, som jag haft i mitt liv sen hon var 1 år, inte ska få bli stor, inte ska få fortsätta med sitt bus. Hon är bara 6 år. Tror jag har fysiskt ont i hjärtat just nu, det krampar och svider.
Jag är rädd att det är sista gången jag träffar henne idag.