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

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! 

Pete’s Puffs

So what is Pete’s Puffs? Well, glad you asked! Pete his trusty side kick (stuffed dog or formerly stuffed dog) is a good symbol of comfort. Jenn had the idea to do a kleenex box drive for Children’s Mercy Hospital because as she said “no parent should have to use sandpaper to wipe their nose when their kid dies”. Couldn’t agree more with her. I was disappointed because we couldn't use the electric sanders to wipe away the pain in the form of snot! We are asking that every person who comes, please at least bring a box per person. Just make sure it isn’t sandpaper….

When we bring these up to CMH, we will have a sticker or something on each box memorializing Brisan and why this is being done. We’ll come up with something creative.

We’ve been asked how we will feel about his upcoming Birthday but that almost feels like a given, we would think. Well, we will let you know :(.

There will by many of “firsts” adjusting to Brisan not physically being here any more. His bed just as empty as it has ever felt but memories abound when we stare over that way. A sudden “bubbbas… whatcha you doinnnnggg?” or “good night bubbas” or “Daaaa bubbas”. It’s second nature, habit to say the least. Then you stop for a frank second and think… that is strange. Physical death is so permanent.

Good ol’ Parker & Duncan

We get the question of “How is Parker doing?… and Duncan?”. You would think it would be easy to answer but it’s hard to access the situation. The feelings are very raw and everyday is a battle of dealing with what comes with those raw emotions. It is quite sickening. We have that harsh reality in our household that we know Parker’s time is coming in the near future in relative terms. Those hard conversations with the Neurologist and caregivers to make sure we have a plan of attack in place in the event of a crisis with Parker. At his given state, getting the flu or any type of lung issue (pneumonia) as nuero said “it would be quite devastating for him”. Guys, I’m just sugar coating it, honestly on the totality of the hard conversation. It was a hard reality to have that conversation last week. We want to do what we can to make sure he is here through Christmas and his 9th birthday in January.

I know that sounds “far stretched” but Brisan’s homecoming and the grieving process pushes you to boundaries that you don’t want to ever experience. So many earthly goals and dreams for your children are just completely shattered.

Duncan started 1st grade a few weeks back and so far he is doing good. He still continues to memorialize Brisan with his awesome comments and child like attitude towards it. We have someone coming out to the house every few weeks to meet with him one on one to hopefully “help” him work through his grieving. He is currently going through his Green Belt training for karate.

Awesome Friends

After Brisan died, a few of our awesome friends got together and made this happen below. That is his real fingerprint embedded on the necklaces.

Friends, thank you for all. Thank you for all that pray for our family and continue to lift us up. It REALLY is a hour by hour thing. It creeps up on you like a thief in the night. We are only human… we have to look for help higher than ourselves to continue.

Donate Kleenex?

Shoot us an email at info @ bripardun.com and we will get you our address! We’d love if you could help.