Lyssna på Nina som samtalar med Maja av podden Sjukt Liv
(07.02.2019, 16:05)Liz Wrote:
(07.02.2019, 08:55)Traudl with son SMA Typ I Wrote: The only thing that bothers me a bit is the way they transmit it. One might have the impression that all parents with children who have SMA are. Helpless, stupid. 

skrabe Let us talk about your words. You mean the presentation of both women is sometimes embarrassing! Or do you mean something else from the Bavarian accent that I do not know! Other parents may be considered "hysterical" by other people.

Is that what you want to say! skrabe

Ok, I've never thought about that, you're right. I get angry with other people with rheumatic  if they complain if they have a swollen knee. I always say, just one knee, I give you my body for a day. Stop with crying and make the best of it. giggles Big Grin

Back to the topic
There are always people who are a special species.
They need the light of the stage, they are a  adrenaline junkie, that's what we say here. (Slang)
I know many parents like you, Helga, Tami, Sandy, Solveig, Mia, Nils, Elias Mom, Rosa, they are for me the true heroes into  SMA world. They searched their way, they found him without a loud scream in public.



Thank you honey for the great praise, kys
we are more the silence tactical "mommy" warriors.
I can not wait of Traudl's comment. I looking forward to the next section. Wink


Proffession: Jag arbetar som rehabkonsult  (hjälpmedel)
"I am don't losing my hope",I am strong for my son. #CURESMA #NEVERGIVEUP Heart

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(07.02.2019, 16:05)Liz Wrote: skrabe Let us talk about your words. You mean the presentation of both women is sometimes embarrassing! Or do you mean something else from the Bavarian accent that I do not know! Other parents may be considered "hysterical" by other people.

Is that what you want to say! skrabe


Sometimes I feel that they have little self-confidence. They play in their own role like a clown. As I said, they are young, they have their stage, they can discuss everything. Disclose your privacy, not a taboo. I am aware that we like women more, who are like us. I do not have to be a pyschologist for that. When I guess you are a great legend in the scene Liz, you have given so many beautiful interviews, yet you are not conceited, I can touch you. 
Here I miss that with each other. Somehow they do their own thing. Why now, where are the other SMA parents in Sweden? In Germany we know each other, there is not a two man show. That's what bothers me right now.
As written, these are my personal thoughts. I'll listen again next Tuesday, when you translate again Liz! Angel
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Hi Traudl,

thank you for your detailed answer..  Shy

ok, ok that's an interesting analysis of you. Self-confidence is important in life, if you do not have it, you will cry a lot, you will lose many struggles in your life. Women like us have more life experience. That with the two-man show, yes. I had to think first what I write it. I thinking other parents love their privacy. Remember, Mia has only contact to me, we talk everything. She had said something great , that is what I often say to my folks. A self-help group aren't always good. It can pull you down morally. You need contacts to healthy people. Although I work in rheumatology, I have no contact personally with other rheumatic patients. I didn't  want it because I can't hear the cry. I like to give tips, but not more. I love people, even the arrogant ones. Through my job which including  press work is that a normal job. I'm available to all, including gamers of Electronic Arts where I do the "hero" support in my leisure time. I do not fancy anything, finally we breathe the same air. Wink

Before God, all peoples are equal. Ok i love buddhisms religon. She teaches you serenity, appreciating life, standing above things. Thank you for your constructive conversation. Dear readers, tonight we drived up into the depths of philosophy.. Smile

Liz Photopage
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Att acceptera vad som händer
och låt trollen i ljuset, kanske du borde att tro mer på dig själv
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Dear Traudl, Liz , there!
Nils, I do not want a life full of fears, grief and struggle. We have deliberately decided against self-help group. I work professionally in health. Why should I still meet with others when my colleagues, friends can help me? We have mastered every situation better than others. Our son is in a very good clinical trial. He makes better progress than under the other clinical study. Traudl, I learned to appreciate, we were in the same group.
You are a unique, loving countrywoman.
We like to travel to Germany even if the journey is tough, we see, thats worth. Ours journey of two days, we come from the deepest Sweden. (However, we will continue to treat further in Norway in cooperation with Germany).
Sometimes I drove alone with my mother, when Nils is working in Norway. Our babysitter keeping an eye over our other children's. That's why we do not need one. I learned from Liz you can also be blinded occasionally if you talk too much about SMA and other illnesses. You must not forget the daily life.
These both women are having fun, they are now experiencing something different in their horizons. That will be what you can possibly inspire. Heart


Proffession: Jag arbetar som rehabkonsult  (hjälpmedel)
"I am don't losing my hope",I am strong for my son. #CURESMA #NEVERGIVEUP Heart

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what's up Traudl , too much snow in Bavaria? Let the girls have fun, they have to tell their experiences to the folk.   Wink We are too old for it, we only had our diaries, family, friends.  Nice conversation, nice podcast.  Cool
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Att älska och vårda ett dödssjukt barn
Lyssna och titta videon
https://www.aftonbladet.se/tv/a/278188


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Liz Photopage
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Att acceptera vad som händer
och låt trollen i ljuset, kanske du borde att tro mer på dig själv
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Going out the theme conversation!
http://sjuktliv.libsyn.com/16-ft-ditte-svanfeldt
Why other mothers in  interview of children, I do not understand! 
So many people influence me too, but I do not invite them all to my house! 

Edited topic 13.02.2019

Please Bente stay constructive and stop laughing. 
I remove your emojis, I do not tolerate that laughed at other people.

//Liz
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This mother has a child with CP (cerebral palsy (CP), please do not confuse it with the chronic juvenile polyatrhritis which also has the abbreviation (CP or JIA).
She talks about her everyday life - the obstacles in everyday life.

For me is one of the most beautiful blogg which has been awarded several times in Germany "22 months" > 22 Monate (översatt)
A mother tells in real time about her son, it's an online diary.
This family gave us strength with their articles during the difficult hours we had
Josef was very sick, he only lived 4 years as he died away

These are people who really inspire us, was Josef, mother Anne,
And every day she writes anew article

Quote:We are 22months. Josef, our son,
lived with us 22 months together
What is life with a very sick child?
We want to give our story and view

We got #raising awareness over this page, by Liz. Last year was a tough year for us, when Liz gave us this link. Mia understand German, Liz said, get strength from Anne. Liz has contact to Anne via instagram. Yes we are thankful, they are deserving of our respect and we kneel before them.

I want to show you these strong people in our virtual world. They deserve us to put the link to their page.

Vi (Mia + Jag) är föräldrar till ett pojke med SpinalMuskelAtrofi typ I-II
Att jobba som frilansarkitekt i U.S, Norge, Sverige, Danmark, Tyskland

Shy Varje morgon börjar en ny del i ditt liv
Låt den början, bli riktigt bra idag

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Tack for sharing these website.
What I could read through the translator, hit me deeply in the heart.
This woman is special, I am full of awe  Blush
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Det finns saker ni inte vet om mig. En av sakerna är varför jag höll tillbaka idag.

När du ha ädsla och misstagen i medicinen. För 8 år sedan bestämde en läkare att jag skulle börja med kemoterapi. Det var ett dödligt misstag som nästan kostade mig mitt liv. Mitt blod var som vatten efter kemo. Jag hade inte längre röda blodkroppar. Min blodet, det sprang ur öron, näsa. Det tog mig ett år och bodde isolerat tills mitt blod var ok igen. Det var ett år utan medicin för min reuma, det var ett år av massa smärta. Fortfarande vann jag kampen, men jag förlorade troen på medicin. Även om jag jobbar där.


Maja, tack för avsnittet. Jag var värdelös pá sorg i dessa dagar, litar på kollegor och deras ord.
Jo lyssna den nya avsnitt av Maja , de låter väldigt ärlig


Liz Photopage
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Att acceptera vad som händer
och låt trollen i ljuset, kanske du borde att tro mer på dig själv
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