Brisan and Parker Stults | Living with Niemann-Pick Type C

Posts Tagged ‘Video’

3 years ago marks a fairly large amount of time but this morning at 1:55 am you took the express route home to Jesus! It still feels like yesterday to us Brisan. We so deeply miss you guys. March 3rd was the last snow day of the 2013-2014 school year. Duncan was off with his little buddy Keagan at the library enjoying his day talking about wrestling with Jesus. Little did he or us know that those plans were shaping up for your homecoming a little after midnight.

We are so grateful that we were able to capture your last morning laughing and being “Brisan” on video. Although you were just getting better off a small eye cold and seemed a bit “weezy”, you sure were in a super happy mood leading up to your last earthly day.

Shortly after all was said and done for your time on earth, our main wall clock randomly stopped at about the same time as you went Home. Ironic? Still 3 years later we have not touched and replaced the battery. It feels like something we shouldn’t do!

Our heartaches in ways we cannot ever express in words with the void that we all feel deep down inside. The what if’s of what would life be like if this never was apart of our lives (NPC) for you, Parker, and the whole family. Our family make-up would be vastly different. We secretly wonder to ourselves what kind of things you’d like to be doing for fun as a kid?

We can take away a lot from the grieving we have experienced and will continue to do so. We realize that life is short in the grand scheme of all things through this experience of losing you and Parker.

Psalm 34:18 New International Version (NIV)

18 The Lord is close to the brokenhearted
and saves those who are crushed in spirit.

We went to your favorite place today to eat “cocoons” and Anna ate “peas and carrots”!

Tomorrow, February 23 will mark one month since Parker passed and went on to live free from his earthly body. In great joy for him and Brisan, it still leaves us very fragile and sad while we journey down this immense path of grieving. Our journey with Niemann-Pick Type C in some ways have ended but it still is a great part of our life story.

Below you will find Parker's funeral service & eulogy. We appreciate everyone that was able to make it out to celebrate Parker and show your support. We know that in just 10 months you'd be having the same thought of “weren't we just here?”. It took a lot of strength for you to come back for Parker and we appreciate that. As we continue life and attempt to find our new daily normal, it still seems strange to look over at their beds to know they are physically not here.

We want to thank the entire PV Staff for helping out with this.

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Brisan Michael Stults | August 27, 2004 to March 4, 2014

Many of you know that Brisan flew into the arms of Jesus at 1:55 am last Tuesday morning, March 4, 2014. We wanted to share some of the events that Monday with all of you.

Monday March 3, 2014 started off like most days in our household: me coming home from the gym getting Brisan, Parker, and Duncan ready for the day. I put Brisan in a red long sleeve shirt with gray sweatpants. Unlike most March days, we had a snow day so they were out of school.

Monday Morning

I came home a few minutes later than normal because of the snow day and not having to rush around right before 8am and that song Hungry Eyes by Eric Carmen was just playing on the radio. A kind of song that you remember. I started to take care of the boys such as diapers, meds, feeds, and etc. Brisan was in a great mood as you will see or have seen in the video I so gratefully took that morning…. even laughed on camera! I told the Lord thank you after I hit stop. It is rare for us to get him on camera. They were watching scooby doo!

Video of Brisan

I proceeded to get him dressed and place him in his “old man chair” (mini recliner). A normal thing for us to do because he wouldn't try to “jump” out like Parker does. Later that morning he had a normal seizure then followed by a violent seizure.. convulsion like. Shortly after it followed by another just like it. We both looked at each other (Jenn) and was like…we've never seen this before. It was scary looking. Read the rest of this entry »

Well, it's been a few months since I last posted. Much has taken place. We've moved and are getting settled into our new home and as you can tell by the title we've visited Children's Mercy again with Brisan. We think he must have missed the nursing/doctor staph.

GJ Tube diagram

On October 15th, Brisan went in for his GJ-Tube “upgrade” from his G-Tube. A relatively minor procedure since it only took a few minutes. He stayed over night as a precautionary measure to say the least and came home the next day. By Friday the 18th… that morning he developed a high temp. Read the rest of this entry »

Duncan decided he needed to call the police because I wouldn't go get his “bullet” from behind the couch. Take a listen below…

Here is a quick video we put together for Brisan and Parker in regards to promoting Niemann-Pick Type C disease. Many of you might have already seen this on Facebook or from another source.

As your watching the video please think of creative ways you can help spread the message. It might not be monetarily with the Niemann-Pick Children's Fund but it could be through other random acts of kindness. Keep in mind that Niemann-Pick Type C holds a lot of valuable information that could unlock doors to other common diseases that are cholesterol related.

Thank you for taking time to read this post and watching our video.

You can find us on Facebook [ Niemann-Pick Children's Fund ] : Niemann-Pick Children’s Fund