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

Posts Tagged ‘Brisan Stults’

There are days we all remember very well over others. Wouldn't you agree? There are some that we would like to forget about and then some we wish we could always remember. We typically remember the worse ones more than the glorious ones. At least, that is how it feels at times. August 8th is one of the days remembered for Brisan and Parker's diagnosis of Niemann-Pick Type C. It set a different tone and path in life altering what many families think isn't even possible to happen to them. 11 years ago today, we received that horrible news of what laid ahead.

Reflecting back to 8/08/08, it was very surreal to be in that room to hear that Brisan has NPC. Then to hear that Parker is basically following in his footsteps. They were just bouncing around like typical 2 and almost 4 year old boys for the most part. Boom…..Here it was… been waiting since May 21st to finally get the news and we get a call this morning to come down early afternoon for what seemingly was out of the blue. Truthfully, it was a call that no one wanted to take place, frankly. The big unveiling of news yet there was nothing to celebrate. For myself, it was as a defining and pivotal moment but honestly you could say for the whole family as well. One that produced a resonating ripple effect that spread far and wide in both positive and negative ways.

It has been 5.5 years since Brisan has gained his eternal life and went home. 4.5 years for Parker. Even that seems so strange to contemplate upon. 5 years is a long time in reality because so much happens during that time in which we all can surely agree.

We love you guys! It was such an honor! You have so many cheerleaders that have never got to meet you but your legacy has lived on through so many people. You made a difference without ever knowing!

If you know of any families that are going through a crazy medical crisis of a relatable disease, I encourage you to ask how you can help in the most simplest of ways. Even at that, the families don't always know either. So don't be taken back if you are not taken up on the offer quickly. They are so deep into the trenches that they barely come up for air. Maybe a small gesture will leave a life long blessing you'll never know about. Be patient and give them grace during those moments.

Matthew 19:14
But Jesus said, “Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven.”

Brisan, 5 years has felt like it has flown by! This time of year is so difficult because not only did you start your journey today, Parker has had his birthday and the same journey just a short 10 months after you. That grief is deep at the beginning of the year. It is very heightened.  Has it really been 5 years? So much life has transpired since then.

Being our last snow day of that March 3, 2014 school year, there are moments that we remember so much more in detail than others. The very next day for you, it was your homecoming to meet our King, Jesus in the early morning hours of March 4th. We can only hope you are living like a “King” in your own right being free of Niemann-Pick Type C. You are missed dearly my little Bubbas!

The void is a great chasm that having you and Parker no longer here has a piece of us feeling broken and empty. Because the cross has spoken, we are forgiven which gives us the opportunity to seek Him directly. I cannot put into words but my/ our hearts are broken into millions of little pieces but we get put back together by His love for us. Brisan, you are experiencing the ultimate promise. I can't wait until we get to be with you again. Duncan misses you, champ. You never had the chance to meet Rubee but I know she would have endeared you!

We stopped by to visit you and Parker a couple of days ago. The day we laid you to rest was like no other. A very surreal moment.

These moments aren't taught in preparation for burying your children and how to manage the weight of grievance it bares. We all are faced with non-seeming pivotal moments that in the midst of the battle you cannot see the impact of your decisions very clearly. It requires a faithfulness to lean on others that have our best interest in Jesus's name for our eternal souls and not be fooled by our earthly thinking.

I am thankful for all of our friends and family that have responded in love and kindness towards my family. People ask how we “get through it” and the simple answer is all of you praying and lifting us up to Jesus.

I believe you when you would say

Your hand will guide my every way?
Will I receive the words you say
Every moment of every day?

Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares your will for me

Help me to win my endless fears

You've been so faithful for all my years
With one breath you make me new
Your grace covers all I do, yeah, yeah, yeah yeah yeah

……

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!

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!!!!

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.