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

Archive for the ‘Updates’ Category

The feeling is strange. Flat out no other way to state how Brisan not physically being here anymore feels. I think the feeling is a normal feeling because death isn't suppose to feel normal. It is a separation of your body and soul. Throw your emotions on top of that and you have the case of the “what in the world” is going on feelings.

After 90 days as Jennifer reminded me, we both nodded in agreement of “is that all”? It kinda of feels like forever ago… although the moment, the day is still very raw. The scary thoughts are you feel that you are forgetting Brisan because it is the longest period of our life that we have never physically touched and cared for him. Contrary to popular belief, it is a false feeling because that simply isn't true. A feeling that we have to reject at the gate because that is far from the truth. Sounds great, doesn't it? Practicing it is an entirely different thing.

His presence blessed our family but on a grander scale, blessed others in ways we've couldn't even fathom. His bed is essentially the same as he left our home. His pump bag is still hanging the way we left it (looking pretty gnarly though…).

As Days Progress

As the days progress, personally speaking I miss him more everyday. Thoughts at some point overwhelm me and Jennifer. Watching videos or looking at pictures have a different meaning now. I know before you would go back and watch that video and think… one day he won't be here. Bittersweet but you're never prepared. Blinded sided by a MAC truck (or Peterbuilt… whatever…). I know Jennifer feels similar.

Mothers and Fathers dream of what their children will become one day. We just didn't know that our kiddos would become inspirational leaders to others with the sacrifice of having a rare disease that would and will claim their life early. Read the rest of this entry »

A very good question these days, “How are you doing?”. One that we will continually have to develop and fully find the answer for us. April 4th marked one month that Brisan went home to be with Jesus. He's laughing, he's running around, he's doing all the things this life wasn't able to fully give him and he's doing it all CARE FREE! You talk about a gift that you can never give a your child when you are physically unable to change the outcome of their abilities.

We miss him terribly. We've left his bed pretty much the way he left it when the paramedics came to take him down to the hospital. Your “normal” coming inside to greet Brisan after you put Parker & Duncan on the bus really hits you at first and it still kinda of does. Bedtime is still strange like there is this “blackhole” in your home. There isn't a moment we both aren't thinking about Brisan. Things that made us laugh, smile, and feel good as a parent. Memories that are so far engrained into your mind that at times you may have forgotten about.

I think about his love for “sweet tea” or better known out of Brisan's mouth as “teaaaa” (imagine in a southern twang voice). Although later the past 18 months he may not have been able to really “take a sip” of the goods… I know he was thinking it! You could just see the look in his eyes! Like a cougar on it's pray minus when you offered he would turn away.  Read the rest of this entry »

Brisan + Duncan + Parker | November 2013

We have had a few requests for the video of the service and also a copy of the eulogy that I gave at Brisan's funeral. What is most important to note is I had an abundance of people lifting me and our family up that knew I was going to speak. The majority of our support and family/ friends did not know this. I asked the Lord to help me, to give me strength and courage, and to guide me to deliver a great message. More importantly… get through it!

So glad that I had the opportunity to do so BEFORE all the video's and songs; otherwise may not have been able to finish and plan c would have been in affect. I so badly do not want to take credit. I just wanted God to use me.

The “Moment”

Over the past 4-5 years, I've had a handful of times that this moment of inspiration and excitement played through my head. I spoke about this in January to someone and before that it was at PV Family Camp last May 2013 that I “felt” motivated. That “moment” was always centered around on a stage, in front of a crowd, but the message was fuzzy. Wasn't for sure what that meant other than the “outcome” of the message was meant to be inspiring and motivational. Another one of those moments of…I did not think this was the moment (Brisan's Funeral). When we were in the planning meeting with our pastor, he asked “do you have a good friend or someone that can do Brisan's eulogy?”. With all of us looking around, I finally spoke up and just shared that “vision” (dislike saying that word in this situation). With talking through it, it seemed that this was my mission at hand. Later that night I started to put the “pen to the pad” or in the 21st century terms… the “finger to the ipad”.

Funeral Service For Brisan

(around the 12 minute mark the service begins) (**Feb 2015 I had to update the video. I've updated the below. I had to remove the intro of the video)

Services were fantastic. There are soooooo many people to thank! Beautiful outcome, weather, and just about everything minus Brisan physically being here. With everything said, more than ever will myself and our family continue to need prayer and support. Sadly we have round 2 with Parker. I just hope his time isn't as quick.

Download: Word Doc of Eulogy Read the rest of this entry »

Brisan Michael Stults | August 27, 2004 to March 4, 2014

Many of you know that Brisan flew into the arms of Jesus at 1:55 am last Tuesday morning, March 4, 2014. We wanted to share some of the events that Monday with all of you.

Monday March 3, 2014 started off like most days in our household: me coming home from the gym getting Brisan, Parker, and Duncan ready for the day. I put Brisan in a red long sleeve shirt with gray sweatpants. Unlike most March days, we had a snow day so they were out of school.

Monday Morning

I came home a few minutes later than normal because of the snow day and not having to rush around right before 8am and that song Hungry Eyes by Eric Carmen was just playing on the radio. A kind of song that you remember. I started to take care of the boys such as diapers, meds, feeds, and etc. Brisan was in a great mood as you will see or have seen in the video I so gratefully took that morning…. even laughed on camera! I told the Lord thank you after I hit stop. It is rare for us to get him on camera. They were watching scooby doo!

Video of Brisan

I proceeded to get him dressed and place him in his “old man chair” (mini recliner). A normal thing for us to do because he wouldn't try to “jump” out like Parker does. Later that morning he had a normal seizure then followed by a violent seizure.. convulsion like. Shortly after it followed by another just like it. We both looked at each other (Jenn) and was like…we've never seen this before. It was scary looking. Read the rest of this entry »

Few days behind in getting this posted. Brisan on Jan. 10th had an Ileostomy bag placed to help reduce the distention in his colon/ bowels. I can't think of a better way to sum up everything than by posting Jennifer's updates from Facebook.

Jan 10th:

Brisan is all settled into his room and doing well. He chose to be weaned off of the ventilator on his own so he is now off and got to be extubated! He's been awake off and on and his color and lung volumes are some of the best I've seen in over 4 years. Plus since we're not worried about gut motility he can have morphine again. He has had some vomiting and seizures but that's to be expected since he just had a major surgery. Thanks for all of the prayers and keep them coming.

Jan 11th:

Brisan update: so he's doing okay. Had fevers off and on all night and today. His BP is holding it's own but it is trending down. But he has an art line so we can monitor that better and more accurately. He is getting his pain meds scheduled but for some reason is very restless and hasn't slept at all. His new stoma is okay and from what we can see the bleeding has stopped. So now we are just trying to get him some rest.

Jan 12th:

Brisan Update: So Brisan is out of PICU and on the floor. He's having some pain management issues and possible withdrawals. This am we had a scare. He started coughing and his O2 dropped really low and wouldn't come up. So after some cough assist, breathing treatments and a chest xray he's back on oxygen and getting more pain meds. Waiting for Dr to come back to see what plan is.

So Brisan's chest xray came back that his lung volumes aren't great and he has some shading. So they are now keeping him on antibiotics for double pneumonia

Jan 13th:

Brisan Update: so he's been holding his own. He's had some de-sat issues but that we can work with. His new “bag” is working great and is already producing. I got training on how to change his bag today and Bri seems to not mind it. His life is drastically changed since the surgery. Thanks to everyone who has textex, emailed, called and prayed for Bri and our family.

Merry Christmas Everyone! Yes, a day late but we had those important moments to tend to :).

It's been a hectic year for the Stults family! We've had many blessings and shortcomings to say the least. 2014 brings on new challenges and hopes with a lot of unknowns up in the air right now.

Thank  you for being so kind to us. Please continue to keep us in your prayers for everyones health and continued direction.