A conscious absence

Yes, a lot has happened since the last time, I have chosen not to be around and write so much because I want to keep my words and not give energy to the "problems" I guess you could write about other things that are not negative etc. but I chose silence instead and have focused on myself to heal myself in order to be able to help/heal Freja more easily.

To start with, I have fired Freja's doctor, I simply can't stand a person like that who neither listens nor shows respect. Children should be children have become words that have been thrown around since she was diagnosed when she was three years old....well, I guess anyone can understand that but when it comes to wanting to help your child so that she lasts a long time, that she can play and have fun without wearing herself out or doing things that hurt her, it's about seeing that children are allowed to be children. Freja's doctor only talks about mobility and that there are no restrictions, don't ask me why he got stuck in it but she happens to have Marfan and I have mobility but can do both horses and contact sports without me breaking down like she can.

Dentists try to get hold of the person but with no answer, not only that, Freja's physiotherapist is also completely useless, I think she has called me between 3-5 times in 4 years, she is a persistent person who really cares about her patient, I don't know whether to laugh or cry. So she gets fired.

Then we had to chase the occupational therapist because Freja's aids need adjusting (wheelchair and her two work chairs) but it turns out that the person has quit their job at NUS....but......you haven't heard from them then? No one has heard from them....this is so crazy that it doesn't exist....

It's lucky that you're not made of morning piss because otherwise you would have succumbed a long time ago.

Yes, the person I am, I don't let such tricks get away so I contacted the patient department, it took an hour then the head of children's called me and he is now going to conjure up a new doctor. Unfortunately, the new one has so far been conspicuous by his absence as he didn't hear from me a week ago because I said that now things are burning up here because Freja starts school like today and there is no plan for her but the only one who is in charge of everything now is me and everyone knows that without a medical certificate you can't get anywhere in the municipality. Medical certificate for her to be able to take a taxi home to get as few days as she can at school and medical certificate for her to get interventions at school etc. So now it's just a matter of waiting and I'm not that good at it anymore, I lost my patience a long time ago and I don't feel like a nice person anymore when I have to get angry and chase people all the time, it takes energy and I'd rather save that energy so I can be a mother and not have to pull everything I have to pull.

Something that's fun to tell you is that we (Jonas and my big sister) are going down to Gothenburg (Ågrenska) in October and meet other Marfans, Freja is so excited to meet someone with the same syndrome as her which is fun because she feels alone with what she has. Barnhjärta is responsible for the trip and everything. It will be educational and enjoyable and we are guaranteed to come home with a bigger backpack of knowledge, stories and new encounters :)

Otherwise, life is moving slowly, struggling to get both finances and energy together. This summer we have been swimming almost constantly. Freja got a bigger pump for our above-ground pool that has kept a warm temperature, which she wants for her body, and we are so grateful for that. What happened was that she ruptured both eardrums so she couldn't dip her head in the water for a couple of weeks, which she hated, and I've never seen her scream so much in pain. I was so frustrated because I didn't know how I could help her more than give her the maximum dose of painkillers and antibiotics and then massage her to calm her down. She screamed and cried so she could fall asleep from exhaustion. I would also like to add how high a pain threshold she usually has, so it was terrible what she went through. After the healing, she bathed with earplugs to avoid risking bursting them again. I read that it was apparently common for Marfans to rupture them. Freja swims mostly underwater, she loves diving and Marfans are advised not to dive but then believe me they are talking about greater depths than a 1.5 meter deep pool but you never know.

Now I will try to get Freja to have her gymnastics lessons at the bathhouse, swimming which she loves and is very good at. Exercise is good for the body but the right exercise I think. We will not allow her to do contact sports, even though I have read that others in the world allow this, there is so much else to do than to do things that can do more harm than good. If she finds other interests that she is good at, she completely sucks at football, floorball, basketball etc...

Freja is fantastic at shooting which is so cool with her vision problem that she fixed it as well as she did. She has a gift with many cool talents so I'm not at all worried about her future, what I'm most worried about is society, doctors, school, etc. that can mess things up.

I am tired and I have to find my own way to keep my focus, I have been careless with my energy medicine that I need to survive, I actually meditated today for the first time in a very long time, I have barely opened my mesa and had to think properly when I place my stones in the right order, the mesa almost felt like a stranger that I had almost forgotten. It felt a little hard actually but it was a nice meditation and I will try to plan my own time now that Freja is at school and I am at work.

Yes yes to be continued, be well everyone out there, take care of each other everything usually works out in the end <3

Love and Respect

Petra