DIPG: THE INTERVIEW PRESENTS BRIAN & NATALIE JONES (PART 4 OF 4).

Brian & Janelle Jones

Natalie Rose Jones
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Brian: Janelle and I went to a workshop two weeks after Natalie passed away. We had a funeral in Montana and a memorial service in Minneapolis. We went to church two weeks later and his topic was "Our Callings". We listened to his sermon and we thought it was really good and so we stayed for his workshop afterward and one of the things we did during Question and Answer time, we had tablets and pencils and one of the questions was 'What if you had 6 months to live? What would you do?' And man alive, you could hear the pencils on the paper! You could hear the scribble, scribble, scribble, and the pages turning. Erase and scribble, scribble, scribble and I'm sitting there and I'm not writing anything. And Janelle's sitting there next to me and she says' 'What did you write?' and I showed her and I said 'What did you write?' and she showed me nothing.

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Manning: Ha! Isn't that something!

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Brian: When you've lived what he said. When you've lived what his question was, there is no answer. And when you walk the life that is taught by religions to live your life in a God-Like manner like Him, is what all religions talk about...when you walk that, there is no nothing to say. When you are that close to the one you call Creator, you cannot write anything down. That's the life that we've lived since Natalie was diagnosed.

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Janelle: Well, you've heard that 'Living your life as a prayer'. We all profess to make that effort to live our life as a prayer. You know what? For that five-and-a-half months we lived that. We lived out life as a prayer. We'd get up in the morning and we'd pray and we'd pray before meals and to know you're in the presence of someone who may not be physically present with you the next day, so you take that very moment and have so much gratitude for that moment. No matter what it looks like.Because if we could take that and feel that in our bodies, we wouldn't hurt each other. We wouldn't treat each other badly. We did that for five-and-a-half-months.

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Manning: It would change the world, wouldn't it?

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Janelle: It would change the world.

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Brian: It changed our world forever, and the world of our children, and the world of our family. The people who came into that house. We had a room set up that used to be a TV Room, a dining room, it was a foyer. And people would come to that table and just pray. I mean they would just take off their shoes and sit there and pray. We had the upstairs living room, and I mean there wasn't a TV in there or anything and that became Natalie's' room. If she was in her chair that was fine, but at night, we'd bring up the mat and lay there on the floor, and Janelle and I would lay down on each side of her. She was never in a room by herself...ever!

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Manning: How loving!

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Brian: You know what? She never was to begin with. We would always read to her. So when she would go to bed, Mom and Dad would spend that 20 or 30 minutes of special time. There was no go into the room and shut the door and go to sleep. This is the way it was.

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Manning: Totally transparent and real.

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Brian: Today we can go to the grocery store and we see kids...they don't even look anything like Natalie. We see the beauty of this child who is alive. And then we see sad things in the store too. Sometimes we'd like to take that parent aside and say, 'You know what? No.You don't realize how lucky you are'. And I do think we have a message and a story to tell.

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Janelle: That attitude of alertness in A-A about having an attitude of gratitude. I never really saw her a victim. This was a process she went through. And I still get angry. I get angry at the suffering sometimes. But I'm also amazed at her ability to go through what she did with the grace that she did.

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Brian: Oh, yeah. I mean. Looking back on her schedule. I mean, I had radiation before with my testicular cancer. I went through it, but not like that. I mean, I had that in a different region in my body. But I know the taste in my mouth, and I had some of the complications,I know. But not the way Natalie did. And all these kids die the same way. Their breathing and their heart rate get out of whack like they're running a race and their system just shuts down and they go to sleep. Some of them are more painful than others. We were blessed. She was blessed. Her doctors said, 'When we get sick, can we come over your house and have you guys take care of us?' And we said 'Sure'. And I really, truly believe that. They know the love that Natalie truly received. The sad part of it is, we talked with them that if another parent comes in and their child is diagnosed with this, you can call us and we'll call them, or talk with them and we'll introduce ourselves. And they thought: 'What a gift! What a gift!' And then it went from 'What a gift!' ...that was their heart opening up...and then society closed it back up and then they said, 'You know. Other parents aren't going to want to talk to parents that have lost a child'.

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Manning: Who decided that?

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Brian: Probably some statistician. They had their hearts wide-open because of the compassion and the love that we have. But then everything that we see, and our system callouses people, their emotions and everything. That, 'Okay I've got this great family that I can call...Brian and Janelle--Natalie's Mom and Dad and they can come down here and we would just have to say, 'Is there anything we can do to help?' Whether it's two weeks later and they take our card and just call us and say, 'Hey, you went through this'. It's just that parents don't want to talk to another parent who lost a child. This is a different group...250 children throughout the world and there is no research. We offered Natalie's' brain stem and it's just hit and miss. Sometimes there is and sometimes there's not. And everybody wants to raise money for research. No. Our doctors have already been told and people that we've worked with that 'No. We're not donating money to research. We're not doing fund raising for research. We will do fundraisers and we will do our work with our foundation for families, so the father doesn't have to go to work or the mother doesn't have to go to work, offer scholarships whether it's house payments or car payments or whatever because the truth is,' Yeah, we do know'. We do know from our experience that the life expectancy is this long. And I want that life expectancy with these parents and these parents to be without a little bit of stressed to be one-hundred-percent focused on this child. I mean, Make-A-Wish is great. They send you to wherever and they get the gifts and stuff. We want something different.

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Janelle: How about if we paid the electric bill for six months so their stress is alleviated?

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Brian: If that means going and talking to an employer and saying, 'Hey, John here. I know you know about his child and all being sick'. I mean I was blessed. I was given a lesson, because my company was an employee owned company and they just donated vacation time. So that from the time Natalie was diagnosed until after she died I never went back to work. I wasn't making the money I was making when I was working. But I knew that there would be a check there waiting every week. Then when that ran out, when their vacation time that they donated ran out, they did some other things so it was...

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Manning: ...How wonderful!

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Brian: ...Yes. And I mean, when they had a fundraiser, we would be there. They were very supportive. And it showed me because I've read on other blogs and other Caringbridge sites that there are families that aren't this way. That they've got to go back to work, they've got to work or they will lose their insurance. We would be willing to go talk with this employer. Because some thing's got to change and Natalie showed us this by giving and then by becoming a taker and we are family. Any family whose child is diagnosed with DIPG, we become bonded through the universe as a tight-knit family. And that's a fact. Just like when I came to Arizona and met the four children that I met, Gunner, Megan, Hailey and Caitlin...they all knew who I was. There was that connection. And the world would be a better place if we listened to our children because they have all the answers.

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Janelle: And to listen to our hearts.

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Brian: And listen to our hearts.

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Note from Michael Manning: This interview was planned well over one-year in advance. I cannot emphasize the tremendous amount of thought that The Jones' and I put into this visit. Their love for one another is strong and their message is one of Hope. There was a lot of deep Love and sharing here through both laughter and tears. I am exceedingly Grateful to Brian and Janelle for the Gift of their time with me. Through my BLOG feature, "The Interview," we are posted now on the worldwide web, and this visit of record is made available on the crawler so that parents of children with DIPG who are seeking more information have another means through which they can reach out for help as they begin "putting one foot in front of the other" to begin the difficult task of building a bridge from yesterday to the present.

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My heartfelt thanks also goes out to all of you who visited us along this 4-part interview during National Childhood Cancer Awareness Month!
With Love,
Michael