Love, Death and New Life through the lens of Disney

[Moira222]

I am just checking in reading for the first time. Loving it so far!

 

[Trentmom]

Thanks for sharing your story with us.

Your son is beautiful

 

[dmoore718]

Just read the blog....words cannot express the strength and courage that is clear. It is true that in life and death, there is hope. Loving reading about Disney and about your life together. Admiration does not begin to say what I feel. Hoping that life is now full of joy and wonder for you and your son.

 

[spurk5532]

I just started reading your blog, starting at the beginning.

Oh, what can I possibly say? I can see so clearly your faith and your husband's faith and why hope was in the name of your blog. I am so so sorry that the two of you had to go through that. I look up, above my computer, to the sign that hangs there...

"There are only two way to live your life. One is though nothing is a miracle. The other is as though everything is a miracle."

It's clear how you live your life, how Ben lived his. I'm crying, but there is so much faith and hope and love there. I see it all. You must get tired of strangers wanting to hug you!

It is strange when I was writing my blog I didn't even think for one second about sharing my faith but turns out it happened without me even knowing it. God works in amazing ways and through amazing situations

I never get tired of hugs, especially virtual ones. he he

Thanks for sharing your story with us.

Your son is beautiful

Thank you, I think he is beautiful too but I am a little biased

Thank you for sharing your life with us. Your love for your husband was felt in every word.

I am just checking in reading for the first time. Loving it so far!

Just read the blog....words cannot express the strength and courage that is clear. It is true that in life and death, there is hope. Loving reading about Disney and about your life together. Admiration does not begin to say what I feel. Hoping that life is now full of joy and wonder for you and your son.

Thank you for all your kind words. To all those of you who have read my blog thank you. My blog is a sacred space for me that really shows the heart of who I am. I started it originally just so that everyone would have accurate information about Ben from me instead of other people. It turned out being my saving grace. Every night I would sit down and write and let go of everything that happened throughout the day. It was my release, my prayers and my therapy all at the same time.

Welcome to all the new readers, I am glad you are enjoying my trip report.

 

[Moira222]

I am enjoying reading your PTR, and am looking forward to the next trip. I read through your blog - not every bit, its a beautiful but hard read, and brings some of my own still raw emotion out. Thanks for sharing it with us as well.

 

[spurk5532]

Everything was about to change and we had no clue. By the end of my maternity leave I realized I was no longer happy with the church I was serving. Ben and I decided it was time for me to start looking for another church to serve. We knew we wanted to stay in the Northwest. I applied for a job in Spokane, WA, which is only about 1 ½ hours from Sandpoint. I got the job and we were so excited because Ben would be able to keep his job and now we would be able to buy a house since the housing market was less expensive in Spokane. My start date would be September 1st, 2008.

This picture was taken on July 30th, 2008. It was Ben's all time favorite picture of Raider and him.

In August Ben started to experience numbness on his right side. We didn’t think much of it but it just kept getting worse. On Tuesday, August 26th we went to the doctor. Our doctor noticed that along with the numbness Ben was feeling that his right side had also started to lose strength. The doctor immediately called for an MRI. On Wednesday morning we headed off to the MRI. We had to wait until that afternoon for the results. Our doctor called us in and informed us that Ben had a tumor in his brain and that it was inoperable. He had contacted a ton of neurosurgeons throughout Washington and Northern Idaho and nobody was even willing to touch it. It was located along his motor path for the right side of his body and along his speech path. This is why he was experiencing numbness and loss in strength on the right side. Our doctor told us that we needed to go to a regional cancer center for treatment. Ben had a cousin that we could live with in Houston, TX so we chose to go to MD Anderson.

The day after Ben was diagnosed we were scheduled to sign papers to close on a house in Spokane. The plan was to sign papers on Thursday, Move all of our stuff down to Spokane and the new house during the weekend and then I would start work on Monday. Well that obviously did not happen. Instead on Thursday Ben’s mom flew out to be with us. On Friday we flew to TX and met up with Ben’s Dad. On Saturday he was admitted into MD Anderson. Our life had literally changed overnight. One day we were on top of the world starting our life as parents and the next we were in Texas and Ben was fighting for his life.

There is so much to the story that I won't go into here because I could go on forever. But if you want to read the whole story and see the whole journey I wrote a blog during the experience that you can read. The website is www.hopeforben.blogspot.com.

Basically we got to Texas and immediately got connected with neurosurgeons and oncologists. They decided they could not do surgery because of where the tumor was located, but they would do a biopsy to figure out what type of brain cancer Ben had. It turned out he had a Grade 4 glioblastoma, which is basically the most deadly brain cancer you could possibly have. Glioblastomas are always fatal.

Ben started chemotherapy, radiation, physical therapy and occupational therapy.

Here are some pictures from our time at MD Anderson

This was taken in the butterfly gardens during the first time he got out of his hospital room. It was so nice to go outside and breath fresh air.

My mom, Ben and me the night before what we thought would be his first surgery. He has white markers on his head that would help guide the doctors during surgery.

The meds he would take daily. Most of these meds he took twice a day. I had him on a schedule. 6am meds, 9am meds, noon meds, and 6pm meds. Having to give him the shot everyday was probably the worst part.

The hope was that Ben would finish his radiation therapy at MD Anderson and then we would be able to go home and continue the other treatments at home until he died. This was not exactly how it happened. He began treatments and started to make progress and then over one weekend rapidly declined until he ended up in ICU. At this point treatment was no longer an option and Ben was at the end of his life. We decided to get a medical flight and go to Indiana to Ben’s hometown for hospice.

This was the last picture taken of Ben when we had just arrived at hospice. Once we got to hospice Ben could not move his entire right side and had no language but could communicate through hand squeezing. He also slept most of the day but would be awake for short periods of time.

We spent about 12 days in hospice until Ben died on October 21, 2008. It had been less than two months since he was diagnosed. It was a crazy journey that I could have never expected I would be a part of.

Throughout the whole experience Ben showed such great courage and grace. His love for me and Raider is what got me through each day. Ben was an amazing man that I was blessed to have known, loved and shared a life with. He gave me the greatest gift possible in our son Raider and I have a piece of Ben with me everyday.

 

[lovebuzzandwoody]

I'm just so sorry.

 

[spurk5532]

I have been completely blessed throughout this whole experience. I was unemployed when Ben was diagnosed and just about to start a new job. The church that had recently hired me decided to immediately start my full salary and benefits even though I was not going to start working. They told me to take as long as I needed and that I needed to focus on my family and not worry about my job it would be there for me whenever I was ready. When I returned back home after Ben died I had nowhere to live. We had backed out of the house we were going to buy for obvious reasons. A gentleman in the church offered to rent me his three-bedroom house and it turned out to be the perfect place that I eventually was able to buy. I had to go back to Sandpoint and move all of our stuff down to Spokane and start a new job in a new town with the only family living 3 hours away. It was a difficult time for me to say the least, but everyday my focus was just to survive and be the best mom I could be. Spokane ended up being the best place for me to be. I was surrounded by an amazing congregation that just wrapped there arms around me and took care of all my needs. I was in the perfect place to mourn and heal.

While we were in Texas all Ben talked about was how he wished there was a Make A Wish for adults so that he could wish that Raider could go to Disney World. Ben’s cousin offered to pay for a trip for us to go to Disney World when Ben finished Radiation treatments even. It was something we talked about almost every day. Ben wanted Raider to go to Disney World so badly. He wanted to live out all those dreams we had begun to have during our honeymoon. I knew that even if Ben was not able to take Raider I would. And this is where the second trip begins.

Because I don't really have any pictures for this update I will post some of Raider between the time of Ben's death and the next Disney trip.

First Birthday!

Wasn't quite walking just yet but was definitely cruising.

Learning to walk

A trip to Sandpoint and to the beach. I love taking Raider there, I just feel like the spirit of Ben is there.

Spreading some of Ben's ashes in the mountains of Idaho.

A trip to the Brookfield Zoo in Chicago. This was where Ben and I had our first date.

This was taken at the Point Defiance Zoo in Tacoma, WA on the anniversary of Ben's death. We chose to go to the zoo because Ben loved the zoo no matter which one and we wanted to do something he would love doing.

Okay I feel like the last two posts have been downers so I want you to know that Raider and I are doing great. We are happy and enjoying what life brings us each day. Yes we miss our husband and Daddy but we have so many wonderful memories and pictures that make us more joyful than you will ever know.

Tomorrow I will begin Raider's first trip to Disney.

 

[DisneygirlTeacher]

I have been reading all along and have to tell you that you have a beautiful way with words. I am so sorry about Ben. The strength that you have for you and your son is so heartwarming. Stay strong and remember that Ben will always be right with you in your heart. Your story reminds me to appreciate each and every day. Thank you for that and for sharing Ben with us.

 

[Trentmom]

What an amazing Church you found to work for. They sound like great people.

Your strength is admirable.

I am very sorry for your loss and Raider's too of course

Looking forward to hearing about Raider's first trip

 

[sdoll]

I just spent the last few hours reading your blog. Thank you is about all I can say. I shed a few tear (Ok more than a few). Thank you because I feel that all to many time we take things for granted and we need a few reminders of what really matters. I have 2 little boys and my oldest son had a few health scares for the first 2 years of his life. We had some dark and scary days and were very blessed because we dodged every bullet that came our way. But in a way I am thankful because it made me love harder and live for the moment. It made me go back for a second hug when really all I wanted was for them to go to sleep.
I hope I don't offend you by saying I am thankful for our scare (which I am sure you know I wish we never went through it) but it sure puts life in perspective.
I think your little boy is beautiful and what a beautiful gift you have in him. I wish you the best of luck. Thank you for sharing your story with us you have courage and a beautiful faith.

Here is another virtual hug. and one for your little guy too

 

[jc040404]

I just noticed your TR early today and have now read every word and started on your blog. I really have no words, but you've had me in tears so many times. You've brought out so many feelings I've tried to tuck away over a not so recent loss of my own. I am so sorry for all you've been through. You are an amazingly strong woman and Raider is so blessed to have such parents. I'm looking forward to reading about the happy times to come in his first trip..

 

[KNJWDW]

You are such an inspirational person. Thank you so much for sharing this with us. This is a true love story.

Amy

 

[zalansky]

Your story is so moving and your faith is an inspiration. I think its amazing that you and Ben were able to have a legacy tile at Epcot in that package on your honeymoon. Its like you froze a moment in time and it will be there forever, that you and your son can look at every time you visit WDW. Raider looks so much like Ben, what a precious gift he is!

 

[SeptemberGirl]

You did such a beautiful summary of your husband's life and your blog. Really. And since you are okay with the virtual hugs from strangers, let me give you a big one. Again, tears in my eyes but smiling. I can see what a happy, sweet child you have and that of course you survive this...of course you both do. But I'm still so sad for you and for Raider.

Your faith during this is loud and clear and that's what I see the most, that and the love. Like you said, it's not what you intended but I agree with you about how God works!

It's really a beautiful thing to see and a beautiful story to read.

 

[princess_reject]

Hi. I've been reading along and you have had me nearly in tears a couple of times now. You are amazing. Can I ask you a question...you mentioned that Ben worked as a ramp agent when you were in Minneapolis, I did that too and infact still work for an airline. What airline was he working for...I feel like I may have known him (but I can't see the pictures on my work computer so I can't know for sure.)

 

[Pooh667]

You have a written a beuatiful tribute to Ben. I too am sending you a virtual hug. Raider is adorable!

 

[flounderfan12]

im crying as i'm subscribing to this thank you for sharing your story with us

 

[Pembo]

I'm amazed at how fast it was between diagnosis and Ben's death. I won't say you are strong because, from experience, you've done what you're had to. Keep that strength and thanks for sharing.

 

[spurk5532]

I have been reading all along and have to tell you that you have a beautiful way with words. I am so sorry about Ben. The strength that you have for you and your son is so heartwarming. Stay strong and remember that Ben will always be right with you in your heart. Your story reminds me to appreciate each and every day. Thank you for that and for sharing Ben with us.

Thanks for letting me share Ben. One thing his death has shown me is that we really don't know what tomorrow will bring so we should appreciate the day we do have.

What an amazing Church you found to work for. They sound like great people.

Your strength is admirable.

I am very sorry for your loss and Raider's too of course

Looking forward to hearing about Raider's first trip

My church is truly a blessing and I continually am amazed at all they have done and continue to do for Raider and me.

I just spent the last few hours reading your blog. Thank you is about all I can say. I shed a few tear (Ok more than a few). Thank you because I feel that all to many time we take things for granted and we need a few reminders of what really matters. I have 2 little boys and my oldest son had a few health scares for the first 2 years of his life. We had some dark and scary days and were very blessed because we dodged every bullet that came our way. But in a way I am thankful because it made me love harder and live for the moment. It made me go back for a second hug when really all I wanted was for them to go to sleep.
I hope I don't offend you by saying I am thankful for our scare (which I am sure you know I wish we never went through it) but it sure puts life in perspective.
I think your little boy is beautiful and what a beautiful gift you have in him. I wish you the best of luck. Thank you for sharing your story with us you have courage and a beautiful faith.

Here is another virtual hug. and one for your little guy too

I am sorry to hear about your son. I hope he is doing better now and has a clean bill of health. I totally understand being thankful for experiences that others would think were completely awful. I have grown so much through losing Ben and have entered into friendships that would have never have happened before. I also have comforted others going through the same thing. Some times great things come out of awful experiences.

I just noticed your TR early today and have now read every word and started on your blog. I really have no words, but you've had me in tears so many times. You've brought out so many feelings I've tried to tuck away over a not so recent loss of my own. I am so sorry for all you've been through. You are an amazingly strong woman and Raider is so blessed to have such parents. I'm looking forward to reading about the happy times to come in his first trip..

I am so sorry for your loss. I hope this trip report isn't too painful for you. There definitely will be some happy roads ahead.

You are such an inspirational person. Thank you so much for sharing this with us. This is a true love story.

Amy

Thank you, I love to think of my life with Ben as a wonderful love story that I was so blessed to be a part of.

Your story is so moving and your faith is an inspiration. I think its amazing that you and Ben were able to have a legacy tile at Epcot in that package on your honeymoon. Its like you froze a moment in time and it will be there forever, that you and your son can look at every time you visit WDW. Raider looks so much like Ben, what a precious gift he is!

I feel like the legacy tile was just meant to be. It is something that I treasure every time I return to Epcot. Raider has all of the same expressions at Ben. It is so fun to get those same looks from Raider that I got from Ben.

You did such a beautiful summary of your husband's life and your blog. Really. And since you are okay with the virtual hugs from strangers, let me give you a big one. Again, tears in my eyes but smiling. I can see what a happy, sweet child you have and that of course you survive this...of course you both do. But I'm still so sad for you and for Raider.

Your faith during this is loud and clear and that's what I see the most, that and the love. Like you said, it's not what you intended but I agree with you about how God works!

It's really a beautiful thing to see and a beautiful story to read.

Thank you for such kind words. And as strong as I can be I am sad for Raider too.

Hi. I've been reading along and you have had me nearly in tears a couple of times now. You are amazing. Can I ask you a question...you mentioned that Ben worked as a ramp agent when you were in Minneapolis, I did that too and infact still work for an airline. What airline was he working for...I feel like I may have known him (but I can't see the pictures on my work computer so I can't know for sure.)

He worked for Mesaba Airlines. He loved his job there and all the people he worked with. I liked it to for the flight benefits and I liked his schedule. It allowed for us to travel quite a bit.

You have a written a beuatiful tribute to Ben. I too am sending you a virtual hug. Raider is adorable!

Thanks for the hug and compliments.

im crying as i'm subscribing to this thank you for sharing your story with us

I am glad your are enjoying my trip report. Thanks for reading.

I'm amazed at how fast it was between diagnosis and Ben's death. I won't say you are strong because, from experience, you've done what you're had to. Keep that strength and thanks for sharing.

It was incredibly fast. The moment he was diagnosed I knew it would be quick. And honestly I prayed for it to be quick. When we left for Texas I knew Ben would not be coming home. It was hard but honestly had it gone on for a really long time I don't know if I could have handled it. It was so hard seeing Ben struggle.