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

Posts Tagged ‘Parker’

Today marks 10 years when we received the devastating news about Brisan confirming the Niemann-Pick Type C diagnosis. Shortly after, a handful of weeks later, Parker was confirmed as well. That day was so sad because we drove to the hospital and learned that our sweet boy(s) were never going to have a full life but an abbreviated one. One that was going to be filled with much heartache and devastation due to the cruelness of this horrible disease. Little did we know what was truly ahead…

To watch your sons slip away from all the things you and I take for granted health wise was quite life altering. It has ran deep in multiple directions over the course of the past 10 years and will continue to cut deep for many more. Wounds that are not healed by time but by the grace of God shouldering that burden that has left our family so riddled with deep sorrow.

Brisan and Parker, me and mommy Love You! You were such incredible young men with awesome personalities. You gave us so much joy and a passion to love you even more unconditionally.

We miss you. 🙁

Happy Birthday to you. Happy Birthday to you. Happy Birthday dear Parker… Happy Birthday to youuuuuuu!

Mr. Stinky… you'd be 12 years old today! Super exciting but we still can't fathom that you or Brisan are not physically here to celebrate. To be able to wrap our minds around this great void that took place when you were both called Home, is quite the journey, Son. We know that you are having one heck of a party up there!

Whoop Whoop.

Me and Mom miss you dearly with all your little grunts and feistiness! We often allow our minds to wonder what life would be like if NPC wasn't apart of our life story such as what would be things you'd be interested in, sports, and the identity that every child takes on during these years.

We LOVE YOU. Happy Birthday Mr. Stinky!

Party on!

(Watch the first 30 seconds or so. Duncan… such a funny kid!)

Oh Mr. Stinky! It's been 2 years since you were called home…. to be reunited with the promise of eternity of no more suffering and to be with your partner in crime Brisan!

Live like a King, Mr. Stinky! 

With just celebrating your birthday a few weeks ago, the looming day of today is very burdensome for so many that loved you and Brisan. Me and mom have had a difficult time grieving in your physical presence being absent; this goes for Brisan as well.

Your precious dimples and award winning smile are so gratefully missed.

You put a “bookend” on this part of our families life story when your time was called at 1:55 pm in the early afternoon hours. It was so difficult to sing “Jesus loves me… this I know” while you were leaving here. Your were so peaceful looking in the midst of your body giving away from all the years of devastation by NPC.

We LOVE YOU.

Here is Parker's balloon release from Graveside.

(30 seconds in)

[Video Link: https://www.youtube.com/embed/b2qqrlLKDZQ?rel=0]

Then I saw “a new heaven and a new earth,”[a] for the first heaven and the first earth had passed away, and there was no longer any sea. 2 I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. 3 And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. 4 ‘He will wipe every tear from their eyes. There will be no more death’[b] or mourning or crying or pain, for the old order of things has passed away.”

Revelation 21

Today, January 8, 2017, we celebrate you Mr. Parker… AKA Mr. Stinky!

It would be your 11th Birthday today big guy. How's the party going up there?!?!?!

We love and miss you so very much!

For being your birthday in the month of January, there sure is a lot that happened this month in our lives. You came into this world in 2008 and went “home” in 2015. Although physically you are not here, it seems to amplify your passing even more sharing that commonality of your birth month with your passing.

We find ourselves wanting to give you a big hug, kisses and just love on you and Brisan.

That feeling never stops.

2 Years?

Coming up on 2 years on the 23rd this month when you joined Brisan on the “ultimate vacation package”, it reminds us how surreal the thought of knowing you and Brisan are in Heaven throwing down with Jesus! It gives us a reminder of the promises we have been given to not lose faith. There is no more suffering from Niemann-Pick Type C and all the rotten stuff that came along with NPC that abbreviated your lives on earth.

Me and mom frequently feel that same shock that you two are no longer physically here. You both left lasting impressions in our hearts and minds.

I am honestly having a super hard time writing all the things I want to write for this.

Let's Sing Happy Birthday to Parker today!

This video is a small clip from 1-10-2009. I love the picture at the end because it is sort of a “Celebration move” to cap it off! 

Here is to a great day celebrating with your bro and partner in crime!

Love,

Dad, Mom, Duncan, Rubee

Today was the day a year ago that you left us around 1:55pm in the afternoon. It was bittersweet, Parker.

We attempted to sing “Jesus Loves Me” as the Lord called your home as you took your last breathe. A very stark reminder of how “real” life is and how fragile it can be all at the same time.

Later today we will have a little get together in your memory to help celebrate your life and remember how much everyone cared for you and Brisan!

We don’t know what words to really write or say at the moment frankly, except We Love You Parker!

Thank you friends and family for being so kind and loving during our grieving!

Jenn's Facebook Post 1-22-16

Parker, aka Mr. Stinky…. today we are celebrating your 10th birthday without your physical presence but with a flood of memories of all the happy times and the sad times where we had to watch you suffer. At times it is hard to celebrate because selfishly… we would like to be able to hold you.

Mom, Dad, Duncan and Rubee hope that you guys are having a blast today! Your innocence while on earth was a blessing in many ways. Now you get to live out the promise that God has promised all of us that at times seems so far fetched because we just cannot imagine the infinite glory it will be. We also hope that you and Brisan are able to soak up all the activities that makes your heart full!

Your huge smile and dipples brought smiles to all! Your feisty attitude with that occassional teeth grinding when mad, really allowed your personality! We sometimes wondered how you would really react if Niemann-Pick Type C wasn't in your life. We thought this often about a lot of things for you both.

Your passing on January 23, 2015 was the “bookend” for you and Brisan’s physical story yet your story really just began. Your legacy and story will carry on for many years influencing many families when they read you and Brisan’s struggles. Although great pain in many eyes, you left a gift of hope and ultimate compassion. A true testament to the real peace that God provides, you looked like you were sleeping that day. No more pain, no more struggles and yet he calmly called you home during that time. The final minutes of earthly life showed us HIS presence only promotes peace and love. Your beautiful eyes were shown to us one last time.

Last year we had a Charlie Brown party for you where you seemed to be playing “possum” while you slept during it all. Shortly after everyone finally left you woke up and seemed well rested! We know you are a stinker! That is one of many reasons you’re our Mr. Stinky!

Little did we know that your time was so imminently near… just 10 months after Brisan passed. We know you missed him. Our hearts wept deeply and secretly inside because we knew that not many birthdays were left all while we were grieving for Brisan.

Thank you for being our son, a brother, and a friend to all whom were able to meet you. We love you Parker. Happy 10th Birthday, your first in heaven! Your celebration of life has to literally be “out of this world.”

We will celebrate you this weekend coming up big guy!