This wait...

Yep, from ambulance to waiting in Gothenburg...hate uncertainty and waiting, think it's the only thing I do these days, waiting for things and events.

Waiting every day now for a date when we have to go down to Gothenburg for the professionals to check her eye, then we'll see what happens later. Freja still has a headache, even though she wasn't wearing her glasses.

There is little to plan for those of us who live up here in the North for a trip to Gothenburg, the county council is responsible for travel and accommodation, but still...flights must be booked, hotels must be booked, everything must be planned. The worry that Freja might need surgery prematurely hangs over me like a fog and I try not to think about it too much but it's hard.

Now we've got another curator and it's great, she helps us a little in the practical, so nice. Freja is also registered soon for my big day so she can get a little silver lining in life, it will bring her so much joy.

Today my other daughter called from school complaining that pain has spread to the other finger (ring finger) and basically the whole hand...have contacted her doctor on the rheumatism team because the pain has flared up now, will see what the test results show which was retaken rheumatism, because she had an increase in joint rheumatism. We were also told that the test result showed that Elza did not have Marfan syndrome, so good to hear, now we are just waiting for the son's answer, but it will probably be the same because the chance that he has the disease is very small, but still...

Some people have bigger tasks on their shoulders and I'm one of them, don't understand where I get all my strength from?

We can't do anything but take one day at a time and see what the day has to offer, I try every day to be grateful that we get to live, that's the most important thing of all, everything else we can try to prevent and work on for life to be as good as it can be.

Take care out there!

Oh my god congrats my beautiful friends on your new miracle, got a video call this morning so the tears flowed, miracle of life, a little boy lying at his mother's chest, well fought!

Love & Respect

Petra