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

Archive for the ‘Brisan’ Category

The big 13th Brisan! Happy Birthday!

This marks your 4th birthday since you have went Home. Gosh, time just fly's by but the pain and hurt of losing you (and Parker) is still a very fresh wound for all of us. It has completely rocked our world and just when we thought having/had a rare disease was life changing, the grieving side of things has equally done the same to all of us. It has altered our hearts and minds in ways that frankly we couldn't wish upon anyone losing a child.

Me and Mom have talked about what you'd be “into” being in middle school and what some of your interests may be. You'd be in 7th grade this year and Parker in 6th grade.

We are so proud and honored to be your parents. I know Duncan misses you a bunch and that you never had the opportunity to meet Rubee, Mia and Anna but we sure hope you are having one heck of a party up there!

Mommy posted this on FB:

Today Brisan would of been 13 years old. A teenager, a 7th grader and our oldest boy. There are honestly no words to describe what it is like to not have you here with us. Happy Birthday sweet Bubbas. We love and miss you very much. You and Parker have forever changed our lives.

We love and miss you bubbas!

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”!

August 27, 2016 – Today little Bubbas we will celebrate your 12th birthday in your memory. You’d be starting middle school and that just seems strange to even wrap our minds around the thought of that reality. That reality is also versed with the sadness that you are not physically here to celebrate. Me and mom are consistently reminded of all the memories of your personality and character. Your memories are engrained every where we look in our home.

Three simple words Brisan, “We Love You”.

The ability to physically give you a hug to express our indescribable love for you is a stark check on our emotions…

We will release 12 orange balloons and enjoy some cake. It makes us super sad and most of the time others around us are unable to see our true feelings because of how we have learned how to contain our feelings.

Sometimes at least.

Our hearts are deeply weakened with the jolting grieving we still feel. It’s a life long battle over our grieving for both you and Parker.

2.5 years have passed by which seems insane to think time has kept going on and we are inching further away from when you passed into heaven missing all the memories we took for granted early on that we could have together. We are reminded of the gift of “life” you received free of pain and suffering for you and Parker both.

Hope you have one heck of a party celebrating eternity with your bro up there!

Let's sing you Happy Birthday today!

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!

Well hello there! It has been a few months since we last updated everyone on our blog. Our emotions have been a whirl wind of ups and downs which are to be expected but until you FEEL them… there is no preparing for the response of how you truly feel in that moment. A typical day of emotions rise with a constant thinking of Brisan. You still think about how unreal at times it really feels in brief segments but you always turn back to knowing he has been “healed”. That doesn't make it any better…. let's be truthful in the matter. We still have his bed up and pretty much the way he left it. Not a moment goes by you don't look over that way visualizing him sitting up and watching TV or something.

At times when you love on Parker you see glimpses of Brisan and for a tad second you feel guilty because you don't want any of your feeling to take away from the precious moments left with Mr. Stinky. He has been a fighter. When he is in a good mood… he makes an occasional “humming noise” with a slight groan. It is kind of like his “Master P” lyrics. Make them say “ummmmm”. (I am sure not all of you will get that 🙂 ).

Pete's Puffs Delivered

In the New Chapel at Children's Mercy Hospital | KC

So in honor of our Bubbas, Jennifer orchestrated a Tissue drive so we can help Children's Mercy Hospital out because again… who wants to wipe their nose on sandpaper? Bueller.. Bueller? After 606 boxes (thank you guys for all of your support on this!!!) and sitting in our dinning room since the end of August ( I know… I know…), we carefully labeled them with the Pete's Puff's logo and a quick story about why they may have this box of tissue at their hands to use. So 606 individual boxes and 13 moving boxes packed up… we made our way down this past Monday, December 22nd to deliver them to the volunteer/ chapel / care team to quickly disperse.  Read the rest of this entry »

Many of you are aware that on Aug. 31st we had a celebration to honor Brisan which normally would have been a big shindig for his birthday. Instead we had food, live music, and a “drive” for donations of Kleenex boxes to honor him. Our goal was 250 boxes to give to Children's Mercy Hospital to help get rid of the sandpaper we had to use during Brisan's homecoming March 3-4th. As Jennifer had stated, “No one should have to use sandpaper to wipe their nose after their kid dies”.

Petes Puffs Donations

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