His Beautiful Smiles

Searching Cure for Progressive Degenerative Disease

 

励みになるブログ(Encouraging Blog)


Edit Category つぶやき (Tweets)
励みになるブログをママが見つけた。
My wife forwarded me this encouraging blog.

筋ジストロフィー 難病とは
Muscular Dystorophy - Disease without Cure


娘さんが6歳で筋ジストロフィーを発症。進行性で現在、医学的治療法がない。悪化の一途をたどり、自力歩行が不可能に。医者からは5年寝たきりに…と言われる。

The author of this blog is a father whose daughter was diagnosed muscular dystrophy when she was 6. Muscular dystrophy is a well-known degenerative disease without cure as of today. In her case, as the symptoms got worse, she became unable to walk by herself. The doctors told him that she would be bedridden within 5 years or so.

その後7年、あきらめずに様々なことを試し、最終的には食事療法と漢方などの実践により、身体から毒素を排出し、人間本来の治癒力を高めることで、不治の病とされる娘の筋ジストロフィーを克服した父親のブログ。

7 years later, his daughter recovered from muscular dystrophy. Yes, I repeat. She RECOVERED from the disease supposedly without a cure! What made it possible? Both the father and his daughter focused on the diet and Chinese medicine to get rid of bad stuff from her body while taking a good stuff to boost the healing power that our body originally has.

実践した食事療法や治癒力を高めるための高度な知識と経験が非常によくまとまっているだけではなく、親としての葛藤や苦悩。病気を克服する強い意思。そして何より、娘への溢れる愛情とそれを支える家族への想いが詰まったブログだ。

The blog is well summarizing the diet they took and the methodology they used to boost our body's healing power. He also records the emotional movement and struggle with the disease as well as the determination to overcome it. His very warm love for his daughter and his family can be seen everywhere in the blog.

一気に全て読んだ…
I read them all at once...

気付いたら涙が止まらなかった…
And I could not stop the tears from my eyes...

もちろん、この父親に会ったこともなければ、顔も知らない。
Of course, I have never seen him, so I don't even know how he looks.

ただ、その同じ葛藤や苦悩に日々置かれている我々の心に、余りにも強烈に、でも、とても優しく話しかけてきてくれる。
But the stuff that he writes echoes strongly to our minds since we are in the same emotional turmoil and struggle everyday. I felt as if he was listening to us warmly.

目の前で日々進行していくLeoの症状…
The reality is, Leo's symptoms are getting worse day by day...

それに対して、様々なことを試しているが、結果がともなわないことへの焦りと怒り。そして、日々押しつぶされそうになる不安や苦悩、葛藤…
We have been trying everything we can, but unfortunately have not seen good results so far, which is very upsetting and frustrating. And the emotional roller coaster everyday , feeling down, depressed, and struggled...


自分たちが今思い悩んでいること全てを聞いてもらったような感覚になり…
So I felt as if he was kindly listening to our physical and emotional struggle...

ただただ涙が止まらなかった…
and could not stop the tears...

そして気付いた。
And there is one thing that the blog reminded me of.

Leoの症状の悪化に対処するために、日々の生活の上で様々な点でその変化に慣れなければならない。
I know we need to get used to the changes in our life as Leo's symptoms progress...

でも、自分はもしかして、Leoの症状の悪化にまで 「慣れ」てきているのではないか?
But, I ask myself, "aren't you also getting used to his worsened disease itself?"

これがLeoの「普通」なんて思ってはいないだろうか?
"In other words, aren't you getting used to the idea that this is Leo's normal thing?"

自分が傷つくのを恐れて、結果がでない、光が見えないのは「普通」などと期待を持たないようにしているのではないか?
"aren't you just afraid of yourself being hurt because you have not seen good results yet? Aren't you protecting yourself by having lower expectation that it is normal that we don't see the light of hope?"


だとしたら自分は、
If that's the case, I am

今世紀最大の愚か者だ!
the stupidest person in the entire universe

こんなのは普通じゃない!
This is not normal!

こんなLeoは普通じゃないんだ!
This is not a normal Leo!

2歳の頃は走ってたんだから、
He was running when he was 2!

こんなのには慣れちゃいけないんだ!
I should not get used to the current situation!

病気に慣れちゃダメなんだ!
You should not get used to the disease itself!

このブログに出会って、Leoの症状が出始めた3年前の気持ちに戻れたような気がする。
Thanks to this blog, I remembere the determination I had when his symptoms started to appear.

必死でがむしゃらにLeoの病気を治そうとしていた時のことを…
It reminded me of the days I was trying to cure his disease...

今自分たちに出来る最大限のことをしていこうと思う。
I will do whatever I can do now...

どんなに辛くても…
even if it is always tough...

結果が出なくても…
even without a good result...

信じて。
Just believing in miracle...

ただ一心に…
focusing hard..

がむしゃらに…
and working hard...

Newer Entry糖鎖について勉強中(Studying about Glycan)

Older Entry今年のハロウィンは?(Halloween This Year is ...)

Comments



 
04 2019
SUN MON TUE WED THU FRI SAT
- 1 2 3 4 5 6
7 8 9 10 11 12 13
14 15 16 17 18 19 20
21 22 23 24 25 26 27
28 29 30 - - - -

03 05


 
 
 
 
 
 
 
プロフィール (Profile)
カリフォルニア・サンディエゴ郊外在住。失調症の息子のことを中心に、日米の障害児事情の比較や、ふと思ったことなどを書いてます。コメント、TBフリーです。

From San Diego, CA. Topics on my son with ataxic CP, US-Japan comparison on physically-challenged children, and just some tweets from life. Comments welcome.

leosena

Author:leosena
FC2ブログへようこそ!

 
 
検索 (Search)
 
QRコード (QR Code)
QR
 
 


ARCHIVE RSS