MITCHELL'S JOURNEY / GUATEMALA

This afternoon I spent some time with educators, faculty, and staff in Guatemala who want to serve better one of their students who has DMD.

I was humbled and touched by their sincerity and how much they want to help. An old high school friend, Ginger Carlson, who runs their curriculum program asked that Mitchell's Journey share our son's story and experience through the education system. Specifically, they wanted to know what helped our boy and what educators can do to better serve a student whose muscles are wasting away.

Lately, much of Mitchell's Journey's work has been helping families and educating support groups across the world. 
Some we've posted on our website, other's we haven't. While our cultural nuances and languages may be different, one thing I've come to know is we're one big family. Every human is more similar that they're different.

Mitchell's Journey has been busy behind the scenes building tools to help families cope with life's greatest difficulties - regardless if they have a disease, a life-setback, or dealing with loss.

Soon those tools will be available to the public. We'll also start sharing new stories soon.

Thank You AGC of Utah

We’re grateful for AGC of Utah’s generous contribution to the Mitchell’s Journey Foundation. They’ve been a loyal supporter of our work for a few years now and we’re humbled each time they donate. These funds are used to continue our work to create awareness, offer tools of hope for families who struggle to cope with loss, and support DMD families who need help with wheel chair ramps, ADA home modifications, and more.

AN EVENING WITH ARCHIE & THE BOYS

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Tonight Natalie and I spent time with Paula, Padriac, Archie, George, and Isaac. These three boys have DMD, just like Mitch. This family was so gracious to have us over for dinner, and we enjoyed their company a great deal.

Watching the two younger boys wrestle around the floor and walk on their tippy toes reminded us of our sweet Mitch. Archie, the eldest brother, was smart and insightful. We loved talking to him.

The younger boys asked if Natalie could read a bedtime story, which she did. I think this was the highlight of the trip for my sweet wife. It reminded her of reading stories to sweet Mitch, and it warmed her heart. The boys sat attentively in their bed as Natalie read a children's book we wrote about Mitch called "The Thing About Giving." It's a story of Mitchell getting his puppy and what happens when we give: both the giver and the receiver are blessed.

We have one more day here, and honestly, we don't want to go quite yet. So many other families we want to love. So many stories we want to hear. So many heavy hearts we want to lift and hug.

Mitchell's Journey in Israel

113 ק"מ מתוכם 
1.9.שחיה בים 
90 ק"מ אופניים 
ו21.1. ריצה 
שיעור בנחישות והתמדה. גם שהכול הולך נפלא פתאום יש רגעים שלא. 
השחיה הייתה מתוקתקת ולפי התוכנית , הרכיבה הייתה מתוכננת שמרתי על קצב והגעתי לתוצאה הרצויה , עד כאן היה הכול נפלא . 
ואז הגיע הריצה והחום הגדול והופ הגוף מסרב לשתף פעולה יותר נכון הראש , 4 סיבובי ריצה שכל אחד מהם חמישה ק"מ בקיבוץ שדות ים, חלק בחול ים חלק באספלט רותח. 

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בשני הסיבובים הראשונים הייתה מחשבה לפרוש החום היה מעיק הדופק בשמיים ואז עוברים להליכה , ושוב ריצה שהדופק יורד , את השעון העברתי למצב דופק בלבד והחלטתי שזה הדבר היחיד שמכתיב לי את הדרך . בכל תחנת מים עוצרים ושותים .
בדרך שאלות מי הילד בתמונה על הגב. זה ילד שחלה בדושן ובגיל 10 ליבו הפסיק לפעום. מאז בכל תחרות שאני רץ בה , הוא על הגב שלי. 
ברגעים הקשיים בריצה וברגעי המשבר ןהמחשבות על פרישה , אתה מבין שזו בעצם זכות ובחירה. אני זה שבחר לעבור בספורט הזה

ולמה.. בין היתר כי אני יכול .
שיש לך דושן ואתה תקוע בכיסא גלגלים או מכונת הנשמה אין לך הרבה אופציות לבחור, אבל לי יש. 
אני בטוח שעם כל הקושי היו מתחלפים איתי בשניה
אז כשהם מתמודדים גם אני מתמודד ומסיים , גם עם זה ידרוש הליכה של כל המרחק. הגם שאת שלושת הק"מ האחרונים רצתי כמו ריצה של סוסים לעורבה, ולא עצרתי לרגע. 
אחרי קייץ שהיה חם לרוץ ועוד תקלות בדרך ידעתי שהריצה הפעם תהה עקב אכילס שלי בתחרות אבל לא עד כדי כך. בסוף זה הסתיים. 
ואי אפשר בלי תודות .
תודה ל Naomi Wainsztok שהביאה אותי ממש קרוב והיום עודדה בדרך. 
תודה ל Yoram Levav שכיוון דאג תיקן ועידכן כדי להשלים את ההכנה שלי עם התקלה בדרך. 
תודה ל Jeannette Michaeli Van Opdorp שבאה לעודד לצלם ולתמוך 
ותודה למשפחתי ואשתי היקרה Tali Kushman Kaplan שמאפשרת לי את כל השעות האלה והשיגעונות הספורטיבים שלי. 
ובסוף לכל אותם ילדים נערים ובוגרים חולי דושן שבשעות הקשות נותנים לי כוח ומוטיבציה להמשיך ולהתאמן 
#בצעדים_קטנים_עושים_סוף_לדושן.

📷 Snir Ovadia
ג'נט מיכאלי

 
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ESSAY Translated in Chinese: 創傷的真相

A Mitchell’s Journey reader was so touched by our latest essay, The Truth About Trauma, she asked for permission to translate and re-post that story in Chinese. Thank you Atterly Ho, for helping Mitchell’s Journey reach more people.

《創傷的真相》

當殯儀館的員工把我兒子推到前門時,我幾乎崩潰了。這是我兒子在萬聖節時,興高采烈地向孩子們送糖果的門。他是那種最會給人甜蜜的人 - 送糖果給其他孩子,比為自己要糖果更快樂。這是Mitchell最好的朋友要求玩耍會敲的門。這是我們臨終關懷護士告訴我們Mitch快要死去的大門......在同一時刻,天堂派了一個天使來承託我們破碎的心靈。

當我第一次成為爸爸時,我並不準備成為父母。誰會,真的嗎?我很快發現,當有一個孩子時,你的生命會改變,永遠地改變。並不是因為要謀求孩子的幸福,而作的簡單改變,生命的改變,是因為你的靈魂大幅增大。一旦有了孩子,父母不再屬於自己。我們的靈魂就像是複制的一樣,孩子發生的任何事情,也跟我們身同感受。當他們受傷,我們感到痛苦,當他們快樂,我們感到欣喜若狂,當他們死去......我們的靈魂會破碎。縱然,我們可能會拼湊回那些碎片,但最終,永遠不會再一樣。


我很害怕那一刻。我知道已差不多是時候,所以試圖抺去這種想法,只想生活在剩下的脆弱時刻。不知道我們與兒子還有5分鐘,5小時或是5天,只知道他是在最薄的冰上,即將爆裂。


突然,就在眨眼之間,我發現自己正在看著兩個陌生人,把我可愛的兒子捲進冬天的寒冷空氣中。我感到很羞愧,難以置信。前一天我還跟Mitch說話,他仍然在這個世上......如此甜蜜,溫柔,天真。當他們把兒子裝到車後開走,恐慌貫穿身體,淚水順著臉頰滾落,在臉上凍結了。身體氣喘喘的呼吸著,好像我正在看著兒子被人綁架。


車子離開,我每一個部分都想走到街上,弄停汔車。我想跟他們說,“拜託,讓我一起躺進車尾,和兒子一起吧。他一定是很害怕,很寒冷,很孤單。在這艱難時刻,我要安撫他。“

我無法變出一些詞語來形容我此刻所經歷的創傷 - 以及隨後,隨後一百萬次,由悲傷而來的創傷。 那天早上,因為哭得太厲害,我嘔吐不止。然後,我哭得更厲害,我以為一根肋骨斷了。雖然太陽升起來了,但漫長的悲傷之夜才剛剛開始。在接下來的幾年裡,我開始學習一些關於悲傷的痛苦真相,也學了一些關於創傷的真相。

你學會了生活在恐懼中
悲傷和恐懼在許多方面都是相同的。 C.S.Lewis說得最好,“從沒有人告訴我,悲傷就如恐懼一樣。”回顧我悲傷的早期歲月,我生活在一種深刻的情緒受創狀態,感覺像是恐懼。當夜幕低垂,每一天,我都感到恐怖。

深深的悲傷是延長了的創傷。
如果你感到不耐煩,想知道你的朋友或家人,何時會克服他們的悲傷,又或者你曾想過要讓他們跨過,請記住,悲傷是慢動作的創傷。這個星球上的每個人,就如莎士比亞的觀察,“除了身受苦痛的人之外,誰都忍得住那苦痛。”

其他人會繼續前進,只有你不會
關於創傷的另一個殘酷事實是,對於旁觀者,同理心的保質期相對較短。其他人將繼續前進,他們應該前進的。但你不會,至少不會很長時間向前。

對受傷者來說,最好的建議可能是:不要指望別人理解你的悲傷,或者期望別人徘徊在側,直至你的悲傷完結。他們不能 - 終究,悲傷的旅程只是一個人的旅途。

對旁觀者來說,不要指望那個受傷的人,以你的閒暇節奏繼續向前。請記住,他們承受著悲傷的重壓 - 一種你無法想像的重量,即便在你的噩夢中。如果你要撫慰他們,你可以用體恤的話,去提起他們疲憊的心。我發現說:“我很抱歉你受傷了。我關心你!“已經足夠。

在變得更好之前,它變得更糟,甚至十分糟
我經常這樣說:死亡是容易的部分,之後才是最難的。所以,當你看到一個失去某人的人時 – 要知道他們在葬禮上,和未來幾個月內都會輕輕地需要你的愛,關心和同理心 - 但在接下來的孤獨歲月裡,更會深深的需要。
我重複最後一部分:在接下來的寂寞歲月裡,他們會更深深地需要你的愛。

時間和治療
當談到悲傷的創傷時,時間不會治癒。相反,如果我們小心照顧好傷口,時間會為我們創造治癒的空間。我想創傷就像坐驚嚇的過山車之後,所感覺到的腎上腺素,離開你的身體需要時間。前15分鐘,創傷好像滲透血管 - 但隨著時間過去,我們回到了常規的平靜狀態。我們有時會誤以為,被愛的人死亡像過山車,其實不然,這只是一個開始。創傷的過山車來自於自我懷疑,遺憾,無盡的假設,以及再次見到所愛的人那份渴望。這種創傷,需要很多年才能褪去。


創傷粉碎你
創傷不只是打破了你的一部分,它粉碎了你很多部分,有時甚至整個你。然而,在某種程度上,我們收拾了破碎的碎片,並慢慢地重新拼湊起來。根據不同的失去性質,可能需要許多年。在創傷的另一面,我們永遠不再是同一個人 - 相反,我們成為了以前自己的馬賽克。當我們進入新設定時,有時會參差不齊,脆弱不平。但總是,會散放一種新的美麗。

關於創傷的真相是,直到我們親歷其境,它不僅比我們想像的更難,它比我們能夠想像的更難。然而,關於創傷的另一個充滿希望的真理,是它隨著時間的推移會減少 - 多小快慢受其他因素決定,其中大部分都在我們的控制之下。

起初,我想知道太陽是否還會升起,我大概會在悲傷的黑暗陰影中度過我的日子。有一段時間我常常看這張照片哭泣。今天,我看著那一刻,鄭重地說,“我記得你,兒子。我將用我的餘生來紀念你。“

https://mitchellsjourney.org/…/…/9/18/the-truth-about-trauma

#childloss #Grieving #失去孩子 #孩子死亡 #孩子去世 #悲傷父母 #子女死亡

Mitchell's Journey on the Love Your Story Podcast

Just wrapped up a podcast interview for the Love Your Story series. Though I look blank in the image, it was a lovely discussion on Mitchell’s Journey, coping with hardship and finding meaning in life. This episode looks to air sometime in December. We’ll lever everyone know when it is online.

Article Translated In Spanish

A non-profit in Texas, The Akari Foundation, translated a recent article written about Mitchell's Journey.  Thank you for making this available to the spanish speaking community!

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Article on Mitchell's Journey

Here's an article written about the work we've been doing at Mitchell's Journey.


Five years after the death of a Utah boy named Mitchell Jones, the national foundation created in his name helps families struggling with the ravages of Duchenne muscular dystrophy.

Mitchell, who was diagnosed with Duchenne at the age of 3, died of heart failure on March 2, 2013, just short of his 11th birthday. One year later, the boy’s father, Christopher Jones, established Mitchell’s Journey — a 501(c)(3) nonprofit organization that “provides tools and insights on grief, healing, and learning to live a life of significance.”

Christopher Jones, founder of the nonprofit Duchenne group “Mitchell’s Journey.” (Photo by Larry Luxner)

Jones, 44, is a self-described “serial entrepreneur” from Salt Lake City whose creative ad agency helps other nonprofits. His wife, Natalie, is a stay-at-home mom.

A board member of Parent Project Muscular Dystrophy (PPMD), Jones recently spoke to Muscular Dystrophy News Today following his keynote presentation at PPMD’s 2018 Annual Conference in Scottsdale, Arizona.

“I definitely want to create awareness,” he said. “There’s a million diseases out there, so nobody cares. But if you talk about a human story, they learn about Duchenne. My strategy is to give them something they can walk away with that’s going to help them.”

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2018 PPMD Keynote

About to give a keynote at the #PPMD conference on the pursuit of happiness: surprising discoveries about finding joy in the journey.

Though I am speaking to the DMD community, this is a message for every person on planet earth. #mitchellsjourney

It's being live-streamed at 10 AM Mountain Time (~25 minutes from now)
https://www.parentprojectmd.org/…/annual-confe…/live-stream/

Livestream with Youth Camp

 
 

Greg Tanner, the founder and director of Base Camp, a summer program for youth that teaches leadership and provides humanitarian service, introduced his audience to Mitchell's Journey as a foundation to support this summer.  Their goal is to directly serve families affected by DMD.  We're excited to work shoulder-to-shoulder with them!

Meet Dr. Butterfield MD, PhD

 

Today I met with Dr. Butterfield MD, PhD who runs the clinic at the University of Utah Neurosciences Center. 

He had heard of Mitchell's Journey and our son's story and wanted to connect.  It was a great meeting.  He's also been looking at certifying with PPMD's Care Center Program.

I was immediately impressed with him.  He seems to posses a rare blend of intelligence and empathy empathy for patients who cope with DMD and other neuromuscular diseases.  

Mitchell's Journey looks forward to finding ways to support the clinic at the U of U.

Russell Butterfield, MD, PhD received his PhD in mammalian genetics, and medical degree from the University of Illinois. He completed his residency training in pediatric neurology at the University of Utah in June 2009. He is currently an Assistant Professor in the Departments of Neurology and Pediatrics, after completing a fellowship in neuromuscular disorders sponsored by the Muscular Dystrophy Association. Dr. Butterfield is board certified in Neurology with special qualification in child neurology.

Dr. Butterfield’s clinical interests include all types of neurogenetic and neuromuscular disorders with an emphasis on muscular dystrophies of childhood onset. His research interests are in understanding genetic aspects of these disorders. His current efforts are in characterization of genotype/phenotype relationships and molecular pathogenesis in collagen VI myopathies such as Bethlem myopathy and Ullrich congenital muscular dystrophy.

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2018 Charity Run (Date TBD)

Hello friends of Mitchell's Journey & Miles for Mitchell.

Due to the availability of some key volunteers, we've postponed our charity run to later this year. We don't have a date set, yet, but anticipate something late summer or early fall. Stay tuned and we'll publish updates when the run firms up.

If you're interested in volunteering with our 2018 run, please let us know on our websites: mitchellsjourney.org or milesformitchell.org

With gratitude,

Chris & Natalie Jones