Archive for the ‘Updates’ Category

Happy 11th Birthday Brisan!

Happy 11th Birthday Brisan!

We miss you Bubbas! Today, we are going to celebrate your 2nd birthday in Heaven! We look forward to seeing one day again! It is so hard to imagine but you'd be a big 5th grader this year! We are just floored on the idea that if Niemann-Pick Type C wasn't apart of your life…what could have been. What you'd sound like, things you'd love most to do, and the things that would have interested you with you and your friends.

We miss you but most importantly Love You! You and Parker are so loved by many. Party hard Bubbas!

Brisan sampling his birthday cake back in 2009

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Father’s Day

They would only work for "smarties" that day

Father's Day for many is a joyous celebration of their pops. For some, it brings heartache that their father is no longer here. For others, it serves as a painful reminder that there was no father to fill that role.

Being a Father comes in different variations and terms. That person sometimes is not your biological father but a man who stepped up and helped fill that role. A Father is someone who loves unconditionally to a fault no matter what circumstance may present itself.

Father's & Mother's day in the Stults household has a new meaning. As of writing this, we still have both of our parents alive but with the gaping hole that we are missing Brisan & Parker, our first & second born. They each made it to 9 years of age respectively. The moto of “They only have a childhood to live a lifetime” has spoke volumes to us and so THEY DID. An unbelievable stamp of reality with bookends to mark a precious time in our lives that we will never get to experience again until our heavenly meeting.

On Father's Day, June 21, 2015…marks our first of many without our two oldest boys. In retrospect, we have much to celebrate in Duncan. He has been a caring & compassionate trooper. We love him so dearly. At a young age he had to take a bit of a back seat while we took care of his brothers. He had to watch his parents care for them in a way that many of his friends would never understand. He had to learn to “grow” up being the big brother when his role was the youngest brother. He missed out on his brother's “roughing” him up and teaching him the ropes but THEY DID. They taught him compassion, caring and understanding… to LOVE.

Being a Father has always been significant to me because it produced a bond of Love that could never be manufactured otherwise. I couldn't possibly realize the feeling without the experience of my own children. I can also say in the same breathe that losing two children in a short time also solidifies that deep Love. I think that Love is similar to what our God has for us. He died for our sins and made us a promise that if we endure during the difficult times and ask forgiveness of our sins that we will be with Him again in Heaven forever. We know Brisan and Parker are celebrating with Him. He's made that abundantly clear to us through the small glimpses of hope.

I've always looked at Father's Day as just one day out of the year of being a Dad. I knew being a Dad to Brisan & Parker after August 2008 was going to be numbered physically on earth. I am so proud that I was chosen to be their earthly Dad. It was such an incredible honor that God felt that we could take care of them for their short time on earth.

Be patient with your children while loving them and understand that their life and your life can be very abbreviated. Be awaken to the reality that perfection isn't always achievable.

Love them…take care of them….hold them tight. Spend that extra 2 minutes you'd otherwise postpone. Know that although you will try this and fail, you get up and dust yourself off to try it again. Life isn't about perfection but the ability to fail forward.

Love you Brisan & Parker. Thank you for loving me in all the ways you were able to show.

 

 

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Deja Vu – Autopsy Is In

Parker Stults's Autopsy

Parker At Family Camp 2014

Parker At Family Camp Memorial Day 2014

Well… seems to be a bit of deja vu, wouldn't you agree? We shouldn't have a feeling of “I've done this before”, meaning we are sharing news of the Autopsy of Parker or Brisan! Some may disagree in the first place of doing an autopsy with a child of a rare disease but it provides us peace of mind and insight into what was going on behind the scenes in their body. It also may help the Niemann-Pick disease community in the future.

It flat out sucks all the way around.  Read the rest of this entry »

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Memorial Bench

Brisan & Parker Memorial Bench

It's been a long time coming but we choose NOT to put anything on our website until now regarding Brisan & Parker's memorial bench. For many it was their first time seeing the memorial bench (w/o Parker's name on it) at Parker's funeral. It was completed around the end of November as a surprise (we didn't except them to get it done so quickly.) but we choose to hold off publicly saying much due to an issue of “placement” at the cemetery.

While we were waiting on those arrangements to have it moved, Parker's time had arrived and I sent out a dire email asking for assistance from the memorial company (not of their fault on original placement). It was previously placed on Parker's grave and in the early morning hours of January 23rd, I knew it had to be moved because it seemed evident we were getting close to Parker's homecoming. The cemetery had insisted on the original placement that it did't go “where it currently resides” because it wasn't on the plot map except we did own the spot in it's final position. It sits facing east towards Parker & Brisan, just west of them by only maybe a foot. It is literally right there.

Story of Memorial Bench

Near impossible really. We wanted something that stood out and could be a staple piece to remember our precious boys.

You'll see 5 army men on the base of the seat. 2 on the left and 3 on the right “sneaking” up! Duncan had put 5 army men (1 for each of us) in Brisan's casket and we did the same for Parker.

Brisan loved his best friend “PETE” and Charlie Brown. Parker has his favorite “Chewy” wrist band and Handy Manny! These were a couple favorite things that they enjoyed dearly. Under Brisan's name is “Bubbas” and for Parker, “Stinky”. Each of their nicknames.

The picture in the middle is of Brisan and Parker taken August 2008. We were on the side lawn of our Grain Valley home at that time. We had just received the news of Brisan's diagnosis of Niemann-Pick Type C. We choose to leave the picture “as is”. Brisan is on the left and Parker on the right. We didn't feel it would be right to horizontally flip the picture around so they each were on their respective sides. Embed in the picture is each of their names by their feet so if you didn't know them… would know who is who.

Orange was Brisan's favorite color and green was Parker's. The majority of the design is hand etched.

Thank You to Johnson Granite Supply & YOU!

TO EVERYONE THAT HELPED, THIS IS ALL POSSIBLE BECAUSE OF YOUR KIND DONATIONS AFTER BRISAN PASSED MARCH OF 2014!

No QUESTION about it!

Tripp Johnson of Johnson Granite Supply was referred to us from Hank who helped guide us at the funeral home (Hank was amazing to say the least!). Tripp and his company made us feel warm and welcomed. They really invested time into us to not only extend their condolences but really wanted to deliver an awesome memorial bench. No words can really describe the generosity, time, and investment they made into us to help get this accomplished.

His staff including Kaylee & the artist planned out the design and carefully executed an awesome bench! It stands out like a million dollar car as you enter the cemetery. We would in a second trade it all in to have a few more days with them here on earth but… until we see you dudes again, we LOVE YOU!

We just wanted to say thank you for everyones help and generosity!!!!

 

 

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Easter & 41 Action News

Just a few things in April

Brisan & Parker Limo Ride

Easter came and went but it wasn't the same. Our first with both of them not here. We have came full circle of learning of a horrible disease and then living through the years knowing Brisan & Parker would one day succumb to the inevitable. No matter how much you think about what that “may look like”, it never is and the pain is more real than you could ever imagine. I don't think we are meant to know what that pain beforehand is really like because it would be crippling. Why take away the good before it all has to happen. Your soul cries out for that need of comfort when you are no longer able to hold them close physically. Me,& Jenn miss those dudes! Duncan talks about them frequently.

Thank you Lexi & KSHB 41 Action News

On April 23, 2015, Lexi Sutter and 41 Action News were so kind to reach out and do a story about our family! We are always blown away with the generosity of others. Here is the link to the story and video below. They did a wonderful job and we are so proud of the time they invested to put this together. We are grateful and hope it is just a little piece of !!!


Youtube Link: https://youtu.be/Lw2w9aBn5Io

Story Link:

http://www.kshb.com/news/local-news/missouri-family-copes-with-loss-of-two-sons-by-helping-others?autoplay=true

 

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Brisan, We Miss You Today

Brisan Chocolate Pudding Face

 

Early this morning on March 4th, 2014 we had to make a decision to “let you be” and allow the process of your homecoming take place. There was not a ounce left that could sway your ravaged body from Niemann-Pick Type C any longer. Your destiny and legacy was cemented with a tremendous impactful that goes further than we can measure.

Today we celebrated you and choked back some tears at times facing the reality of the truth that we can no longer physically give you a hug. Your smile and presence infected so many around you in a great way. What an honor to call you our son. We had this unbelievable privilege to be your dad and mom. Your life reminds us all how “little” time we all can have on earth at any given time. Little did we know that Parker would be with you celebrating so “early” after your homecoming with Jesus. We love you Bubbas! We dearly miss Parker. Give him a big wet willy from all us and check his “ear guke”.

To our friends and family… you've been wonderful. You have provided great leeway in handling our emotions and have provided powerful prayer for our family. No words will be able to thank you enough!

I wanted to make sure we posted something small today.

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