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

Archive for the ‘Brisan’ Category

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

……

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.

Today marks 4 years at 1:55 am since you went to heaven, Bubbas. I feel we will write similar messages every year on your anniversary of your physical passing. Your joyful spirit and curious gestures were always something me and Mom reflect upon and cherish. You always had to have a finger or two in your mouth at all times!

We would say this was the hardest day of our life up until that point. It was so very much “not real” because we never left you at the hospital by yourself. Me or Mom were always there to be right by your side. Reflecting back to the day before on March 3rd, we could have never imagined this is what your homecoming would have looked like. Your passing was glorious in one right to the promises God has given us but it also invited a void that reality swept in and kicked us right in the teeth to learn how to cope without you here. It is an ongoing battle of grieving.

We all miss you and Parker dearly Brisan! I know Duncan sure does as well. I know you didn't get a chance to meet Rubee but we know she would have endeared you.

For all the things that we “dreamed” for your life here on earth, you showed us that we could love unconditionally that no one can just script.

I recall as I stood next to you on that hospital bed after you took your last breath, holding your hand, and crying looking upward towards heaven…. it felt so real. I felt you run up by my side and give me a big hug… a kind that I had to throw my right elbow up and over you so I could embrace you as back. Then you “ran” off like you were going to play. You had the biggest smile on your face… the kind that we so much remember before NPC took that away. It was so real feeling.

Me and Mommy love you.

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.

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