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

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Today, we celebrate you, Brisan! 15 years old? Get outta here!

That doesn’t seem possible! Happy Birthday to you Bubbas up in heaven! I would wish you one heck of a day up there but from what I am told it’s a party that literally is out of this world!

Every year seems to become a bit more strange only because you are not here but also for the fact that you’d be morphing into a young adult in your own right. You’d be in high school right now! That seems so “odd” to say! It’s fascinating to wonder what type of life you’d would have lived thus far if the circumstances were different for you and Parker. How you would be socially with your friends… what kind of sports would you have played? What kind of other activities would you have been into? What would you be asking for your birthday now being a big 15 years old!?!?! Who would be your best friend? Would you have a girlfriend …oooooo :)?

Those are questions we will never know. They are locked away in another dimension never to be told because that simply wasn’t your life story… our life story. No matter the emotional distress that has been placed upon us, you live on forever in our hearts and we carry on life until we are called home like you were. The pain felt is so real and far greater than we can every truly realize because we couldn't carry that pain all by ourselves. Thank you for making me a father… your father. Now, you're at home with the ultimate Father. What a satisfying feeling.

I love you so very much and I know Duncan misses you a lot! I remember when he told me that “you were probably eating Cheetos” in heaven! That was very touching of him to say…

So, how are those Cheetos?

Happy Birthday, son.

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

……

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! 

Brisan on his Make A Wish trip June 2009

Happy 14th Birthday, Brisan! Ohhhh Mr. Bubbas! This is your 5th birthday celebrating your big day while you are in heaven. We hope you are having a big ol' party up there! Have you pushed your brother down the stairs again? Have you tried to tramp him in the clothes basket like you did Duncan? 🙂

Some have told us that these days would get easier as time goes on but really we just remember all the things that we are missing out on. Your presence brought us so much laughter and joy that our family just isn't the same without you or Parker here.

We will celebrate you today with a little “cacoons” at our favorite Chinese place! Our hearts will be heavy for you, son. We love you! We miss you immensely!

A couple weeks ago at church as we are studying Romans… we looked at what the message of Romans 8:28 WAS NOT.

Romans 8:28 – And we know that in all things God works for the good of those who love him, who^[a] have been called according to his purpose.

• It doesn't mean all things that happen are good.
• It doesn't mean God causes all things, including bad things, to happen to you.
• It doesn't mean all things work out the way you want.
• It doesn't mean everything is going to work out for everybody eventually.
• It doesn't mean we can live any way we choose and God will fix our messes.

He will never allow a pain to be wasted in your life. All the pain and suffering will turn out for something good in the life of his kids.

All we have is hope. Keep smiling.