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

Posts Tagged ‘anniversary’

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

……