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

Archive for the ‘Updates’ Category

Tomorrow, February 23 will mark one month since Parker passed and went on to live free from his earthly body. In great joy for him and Brisan, it still leaves us very fragile and sad while we journey down this immense path of grieving. Our journey with Niemann-Pick Type C in some ways have ended but it still is a great part of our life story.

Below you will find Parker's funeral service & eulogy. We appreciate everyone that was able to make it out to celebrate Parker and show your support. We know that in just 10 months you'd be having the same thought of “weren't we just here?”. It took a lot of strength for you to come back for Parker and we appreciate that. As we continue life and attempt to find our new daily normal, it still seems strange to look over at their beds to know they are physically not here.

We want to thank the entire PV Staff for helping out with this.

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Parker Jan 4, 2015

2 Weeks ago today Parker went home to see Jesus and Brisan. I like to say he is experiencing the ultimate vacation package. We can only imagine the joy he is having with no more Niemann-Pick and his earthly inabilities that prevented him from experiencing a typical childhood. They only have a childhood to live a lifetime is a very true and stark reality now that we’ve come full circle. What can we really say other than “did this really happen”? We love you Parker! No words can accurately describe how we are feeling right now. All this in under a year. Who would have thunk it.

• Parker’s Obituary in the Kansas City Star: http://www.legacy.com/obituaries/kansascity/obituary.aspx?pid=173975546
• Our GoFundMe URL (Thank you Dawn for setting it up): www.gofundme.com/parkerstults
• Recent Kansas City Star Article by Eric Adler Jan 2015: http://www.kansascity.com/news/local/article8589614.html
• Original KC Star Article By Eric Adler Oct 2008: http://www.kansascity.com/news/local/article8589011.html 

Timeline of Events

Parker passed peacefully at home on Friday, January 23rd around 1:55pm. We were surrounded by our friends and family during this time. The room was eerily quite while Parker took his last few breaths which were few and far in between. As the morning started and progressed, so did his breathing which indicated to all of us that he was in big trouble with the reality of his homecoming in the distance future.  Read the rest of this entry »

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 »

Brisan Stults' Autopsy

Did you play the drum roll sound in your head? June 30th we had our meeting regarding the Autopsy of Brisan with CMH. That meeting consisted of a handful of individuals who cared for him that night and also who have been involved with our family in various manners.

Another step in the grieving process as that day approached. 16 weeks that vary day Brisan went to CMH in a blazing fast ambulance ride. Matter of fact… seeing an ambulance running “hot”… takes on a new meaning for us. Flashbacks of me watching them pull out of the drive way thinking to myself “there aren't too many more of these rides he is going to leave and come back” and for Jenn, experiencing the “ride” down there when CMH said “get here fast”. We live about 25 mins or so from the hospital.

Arriving

As we put on our big boy “pants” and pulled into the parking garage not saying much to each other because of the tension we already felt of having to relive the night. The fear of what the answers may be and even the fear of not having any answers at all. Typically they aren't going to do an autopsy for kids with a rare disease like this. You know why they past away for the most part but not Brisan. Didn't seem to make sense although he was battered with Niemann-Pick Type C, there was something else that propelled him into his homecoming.

The Meeting

Over 2 hours we spent in that room going over how we have been, specifics of the report, and what can we do regarding Parker, our Mr. Stinky. Emotions ran high at times and other times we kept a calm outwardly approach in presentation of our feelings. Many tears were shed on different levels. The staff at CMH was nothing but professional with a huge vulnerability of wanting to know how we were; to cater towards how they can help us moving forward.

A few items we wanted to clear up was did he bleed internally? Did he have an issue from his Ileostomy surgery this past January? Did his red blood cells just “destroy” themselves in a rare occurrence? I mean, we are talking about Brisan here. Bubbas never did many things to the “normal”. He went from one extreme to another and he pulled out of those. We purely have to give God glory and thanks for those triumphs. A part of us was really worried March 3rd but Brisan had proven that we may just need that 2-3 week hospital stay to get feeling better.

Jenn was referencing at one point that Brisan past awayed 9 days before my birthday and I don't know why that was so impactful to me at that time but I nearly lost it. I pushed back my chair, head towards the ground while I tried to gather myself. That rush felt like an avalanche taking place racing up the top layer of my skin to the back of my eyes.

Autopsy Findings Read the rest of this entry »