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

Posts Tagged ‘Brisan’

Happy 11th Birthday Brisan!

We miss you Bubbas! Today, we are going to celebrate your 2nd birthday in Heaven! We look forward to seeing one day again! It is so hard to imagine but you'd be a big 5th grader this year! We are just floored on the idea that if Niemann-Pick Type C wasn't apart of your life…what could have been. What you'd sound like, things you'd love most to do, and the things that would have interested you with you and your friends.

We miss you but most importantly Love You! You and Parker are so loved by many. Party hard Bubbas!

Father's Day for many is a joyous celebration of their pops. For some, it brings heartache that their father is no longer here. For others, it serves as a painful reminder that there was no father to fill that role.

Being a Father comes in different variations and terms. That person sometimes is not your biological father but a man who stepped up and helped fill that role. A Father is someone who loves unconditionally to a fault no matter what circumstance may present itself.

Father's & Mother's day in the Stults household has a new meaning. As of writing this, we still have both of our parents alive but with the gaping hole that we are missing Brisan & Parker, our first & second born. They each made it to 9 years of age respectively. The moto of “They only have a childhood to live a lifetime” has spoke volumes to us and so THEY DID. An unbelievable stamp of reality with bookends to mark a precious time in our lives that we will never get to experience again until our heavenly meeting.

On Father's Day, June 21, 2015…marks our first of many without our two oldest boys. In retrospect, we have much to celebrate in Duncan. He has been a caring & compassionate trooper. We love him so dearly. At a young age he had to take a bit of a back seat while we took care of his brothers. He had to watch his parents care for them in a way that many of his friends would never understand. He had to learn to “grow” up being the big brother when his role was the youngest brother. He missed out on his brother's “roughing” him up and teaching him the ropes but THEY DID. They taught him compassion, caring and understanding… to LOVE.

Being a Father has always been significant to me because it produced a bond of Love that could never be manufactured otherwise. I couldn't possibly realize the feeling without the experience of my own children. I can also say in the same breathe that losing two children in a short time also solidifies that deep Love. I think that Love is similar to what our God has for us. He died for our sins and made us a promise that if we endure during the difficult times and ask forgiveness of our sins that we will be with Him again in Heaven forever. We know Brisan and Parker are celebrating with Him. He's made that abundantly clear to us through the small glimpses of hope.

I've always looked at Father's Day as just one day out of the year of being a Dad. I knew being a Dad to Brisan & Parker after August 2008 was going to be numbered physically on earth. I am so proud that I was chosen to be their earthly Dad. It was such an incredible honor that God felt that we could take care of them for their short time on earth.

Be patient with your children while loving them and understand that their life and your life can be very abbreviated. Be awaken to the reality that perfection isn't always achievable.

Love them…take care of them….hold them tight. Spend that extra 2 minutes you'd otherwise postpone. Know that although you will try this and fail, you get up and dust yourself off to try it again. Life isn't about perfection but the ability to fail forward.

Love you Brisan & Parker. Thank you for loving me in all the ways you were able to show.

Just a few things in April

Easter came and went but it wasn't the same. Our first with both of them not here. We have came full circle of learning of a horrible disease and then living through the years knowing Brisan & Parker would one day succumb to the inevitable. No matter how much you think about what that “may look like”, it never is and the pain is more real than you could ever imagine. I don't think we are meant to know what that pain beforehand is really like because it would be crippling. Why take away the good before it all has to happen. Your soul cries out for that need of comfort when you are no longer able to hold them close physically. Me,& Jenn miss those dudes! Duncan talks about them frequently.

Thank you Lexi & KSHB 41 Action News

On April 23, 2015, Lexi Sutter and 41 Action News were so kind to reach out and do a story about our family! We are always blown away with the generosity of others. Here is the link to the story and video below. They did a wonderful job and we are so proud of the time they invested to put this together. We are grateful and hope it is just a little piece of !!!

Youtube Link: https://youtu.be/Lw2w9aBn5Io

Story Link:

http://www.kshb.com/news/local-news/missouri-family-copes-with-loss-of-two-sons-by-helping-others?autoplay=true

Well hello there! It has been a few months since we last updated everyone on our blog. Our emotions have been a whirl wind of ups and downs which are to be expected but until you FEEL them… there is no preparing for the response of how you truly feel in that moment. A typical day of emotions rise with a constant thinking of Brisan. You still think about how unreal at times it really feels in brief segments but you always turn back to knowing he has been “healed”. That doesn't make it any better…. let's be truthful in the matter. We still have his bed up and pretty much the way he left it. Not a moment goes by you don't look over that way visualizing him sitting up and watching TV or something.

At times when you love on Parker you see glimpses of Brisan and for a tad second you feel guilty because you don't want any of your feeling to take away from the precious moments left with Mr. Stinky. He has been a fighter. When he is in a good mood… he makes an occasional “humming noise” with a slight groan. It is kind of like his “Master P” lyrics. Make them say “ummmmm”. (I am sure not all of you will get that 🙂 ).

Pete's Puffs Delivered

In the New Chapel at Children's Mercy Hospital | KC

So in honor of our Bubbas, Jennifer orchestrated a Tissue drive so we can help Children's Mercy Hospital out because again… who wants to wipe their nose on sandpaper? Bueller.. Bueller? After 606 boxes (thank you guys for all of your support on this!!!) and sitting in our dinning room since the end of August ( I know… I know…), we carefully labeled them with the Pete's Puff's logo and a quick story about why they may have this box of tissue at their hands to use. So 606 individual boxes and 13 moving boxes packed up… we made our way down this past Monday, December 22nd to deliver them to the volunteer/ chapel / care team to quickly disperse.  Read the rest of this entry »

Many of you are aware that on Aug. 31st we had a celebration to honor Brisan which normally would have been a big shindig for his birthday. Instead we had food, live music, and a “drive” for donations of Kleenex boxes to honor him. Our goal was 250 boxes to give to Children's Mercy Hospital to help get rid of the sandpaper we had to use during Brisan's homecoming March 3-4th. As Jennifer had stated, “No one should have to use sandpaper to wipe their nose after their kid dies”.

Petes Puffs Donations

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On Sunday, August 31, we are having a Celebration of Life for Brisan. His 10th Birthday is upon us this upcoming Wednesday, August 27th. A milestone birthday to say the least for any kiddo except there is no big party with his physical attendance that we will be able to snap a few “pictures” of. Life is such a stark kick in the nuts, wouldn’t you agree? It will take place at Pleasant Valley Baptist Church in the “Well” from 6-8:30 pm. Drinks, food, and music by Jason Ellsworth will be provided! We hope those locally can attend and just enjoy some fellowship. After all, he’s on the best vacation of his life!  Read the rest of this entry »