8. mars 2019

“If we can share our story with someone who responds with empathy and understanding, shame can't survive.” ― Brené Brown

Hi again ♥ 

This blog has gotten so dusty. The last two years I have just not felt like sharing anything. I have been very much "in" myself, reflecting, meditating, reading A LOT! After some tough years I have needed to center myself. Find out what my needs are, how to get those needs met and finding a balance ♥

We have moved to a wonderful place. Where everything is on one level. So both my daughter and I can use more of the house. We live in nature now. The one thing our daughter has wanted for years. When we drove up to see the house, she made the most sweet sounds of joy! When she got out of the car she took the longest breathe. Like she inhaled the whole essence of the place. When she exhaled she just sighed and said - this is home! Mom I can smell nature! Mom smell the trees! Mom you know I am a nature kid! I said I know darling! Please mom can we pleeease move here?? So we have lived here now for over a year. It is an old house with a lot of soul. It feels like there has lived very kind people here. 

Daily we can hear or see animals. Moose, Hawks, Birds, Deer, Otter (!) yep he ran over the road! I even saw a Raven one night! Oh my it was amazing! It was chasing some seagulls on our rooftop! It was so close to me! Like a couple of car lengths away! We have a lot of birds and so much more! Our dog loooves living here! He is a lover not a fighter. Mooses comes all the way up to our porch and he just sits there tilting his head. 

One day when we were outside, we did not see that there was laying a moose between some trees by our lawn. Suddenly we could see a moose jumping OVER our dog Theo. He just stood still and let her jump right over him ♥ My sweetheart hubby loves it here too. He gets to see us so much more. No more stairs that stops us from being together. We love to snuggle up by the fireplace and just be together♥ We live a very quiet and peaceful life. We would of course love it to entail much more experiences but being really ill makes it more difficult. So a thing like sitting on the porch and feeling nature is a very strong and wonderful experience. Nothing gets taken for granted, nothing...

My need to be so quiet has also been because of my daughters and my own health. Finding the balance after the big turn when she got sick. It has taken me some time to find some normalcy in it. Especially with an illness like M.E. With so little treatments and knowledge. But I think right now we all know how to cope, deal as best as we can. So I feel I can start being creative again. I have tried now and again. But I have always been to enthusiastic and bit over too much. Or I have felt guilt for using my energy on only myself. Now I have learnt how to balance out the days. Before I could make an Art journal page in one sitting. Now I have to pace myself and do it over maybe ten sittings or even more. It can even take me a month for one Art Journal. But that is ok ♥ It is not about the result it is about enjoying being creative again.

Giving up has never been an option. I do not really understand giving up 😀 Then you have to start all over again. Taking a time out to regroup is fine, but there is always a way ♥ Also I truly believe suffering and hardship teaches us to process grief and loss in a very real way. There is no where to run or hide. If you try to run or not deal, it will just hit even harder. So what I have learnt most is how important it is to accept what is ♥ What is alive in us, accept what is happening right here and right now and taking mindful choices through that acceptance. Also knowing that life is not perfect, permanent or that we can control everything.

Living in the rich part of the world, we experience tons of privilege. That can fool us into believing that we are the masters of everything. I believe that is why we are missing a lot of language when someone gets sick. We are supposed to WIN over for example Cancer. But it has nothing to do with winning. But that is the narrative we have been used to. It is so much scarier to take in the whole situation. Or when someone is sick and it is chronic? How do we communicate with that person. Do we have the patience to keep being a friend when the person changes? Or does it get so scary, so we retreat and feel we are just bothering the person.

My hubby's best friend died a few years ago. He expressed such gratitude for my hubby still coming around. He said most friends disappeared when he got really ill. He could see their fear, their insecurities. I do not believe people stop caring, but I believe it is about not being able to relate to the person who is really sick. I have seen many of those scared faces myself. Especially when my daughter got sick. In a millisecond I could register fear on their faces. Every mom has this as her nightmare... Ones child gets really sick, there is no treatment that works.. what then?

So when my daughter just got worse, I did not have the language or capability to express that fear or grief to friends and family. I instead started comforting and trying to ease their fears. Instead of saying what I needed. I just retreated to making sure my daughter got the best care we could get her and stabilizing her life as good as we could. Also taking care of our own mental and physical health so we could be there for our daughter.

It is okay to not be okay! I was afraid if I seemed insecure and fearful , then my daughter would not get the best care. I know that sounds weird but it is about seeing to that my daughter gets what she needs. It is about her not about me, if that makes sense? When your child is diagnosed with an illness that carries so much stigma. It hits even harder. The uncertainty, the not knowing, the feeling of not having sufficient healthcare for ones child.. is.. I still do not have the words for it. That means I really have to have my own stuff together. It is about being responsible, and being very truthful about what is alive in me and what my needs are. So I see to that my daughter gets what she needs. If I don't deal, than that will be put on her shoulders. That I will not do.

Right now while I am writing I hear her giggling to an episode of Friends ♥ Hearing her enjoying the moment just fills me with so much gratitude. She knows how to be present and enjoy the here and now♥ She has such compassion, empathy, knowledge and patience that she takes my breath away ♥ I tell her every day that she enough, that I love every minute with her. She is so funny to! She can make me laugh so hard! Sigh ♥ So suffering, illness and challenges are what they are. How we choose to deal with them; well that will either bring some kind of calmness or it can bring more suffering.... I think we as a family has the last 6 years learnt a lot about how to mindfully accept what comes our way ♥

And that.. I am grateful for.

Love and light to you all ♥

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