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

Archive for the ‘Parker’ Category

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.”

4 years today you took your last breath here but you went Home little buddy… Mr. Stinky… our very loved son, Mr. Parker! We went to bed this very night uttering the words “Did this really happen?”.

Every year we will commemorate you and Brisan. The same and similar words will be written and changed around some but ultimately they will have the same meaning… we are grieving and saddened that your life on earth was less than others. It is vey selfish of us to feel that way but I know you and Brisan are in a much better place that is promised to us (all of us). It is just hard to understand due to our earthly thinking.  We miss you.

I always wondered “What were you thinking?”. You both had this look in your eyes that were so “deep” with meaning… so intriguing. We just relished the moments accepting what they were but “what if” you could tell us more what you were thinking? How did you guys feel? What did you worry about? What were things you really liked when me and mom were guessing what you wanted?  What were your early dreams? What sports would you have played? What activities would you like to be apart of? The list really goes on and on….

No words or actions can ever be enough to relieve pain associated with the experience of losing you and Brisan. What a blessing to be able to be your parents… your dad.. .your earthly father.

Below is Parker getting “excited” at our old house. Such a ham-hock! Miss you guys!

I Love you. Words that mean more than all eight characters could ever convey.

youtube: {https://youtu.be/sNE4vKhwKFg}

Proverbs 18:10 The name of the Lord is a strong tower; the righteous run into it and are safe.

Happy 13th Birthday, Parker! Every year we get to learn a little more about ourselves and what emotions pass through when it comes to your birthday. So many memories and so many “what if's” continually run through our minds as to which what life would be like with you and Brisan here.

You are missed beyond what words can describe and we fall short of accurately describing how we really feel. You and Brisan were so joyful and full of awesome happiness. We saw it in your eyes, your laughs, and your hugs.

I remember that smile that was full of orneriness and care free attitude…. just like little kids should be when growing up.

I Love You.

Have a heck of a party today! 

3 years ago today Parker you were called Home to be with your big bro and partner in crime, Brisan. This is such an intense month with celebrating your birthday, your Homecoming, and then laying you to rest. It seems just like yesterday. 🙁

I remember back in 2009 when we went to Florida for our Make-a-Wish trip for Brisan and you…. you guys played on Daytona Beach! You enjoyed it so much with sand in your mouth and all over your face! Brisan decided to do the smart thing and fall asleep in the chair in the shade. 🙂 We just couldn't fathom how precious the memories would be during this time. We Love You!

You played with so much “joy” and your heart was so full.

2 My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? 3 And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. 4 You know the way to the place where I am going.”

John 14:2-4 NIV

The boys at the start of a bath in July 2010. Parker was being a stinker with “Heyyyyyy”, Duncan being cute as a button and Brisan doing his “thang” looking gangsta with the Palm Tree hanging out of his mouth. Parker was so full of “personality” as they all 3 were. It was such an honor to be their earthly parents! Miss you guys! There are no words to describe the void that this has put into our hearts & lives forever.

Mom & Dad miss you.

[ Youtube Video Link]

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