Archive for the ‘Parker’ Category

Today, January 8, 2017, we celebrate you Mr. Parker… AKA Mr. Stinky!

It would be your 11th Birthday today big guy. How's the party going up there?!?!?!

We love and miss you so very much!

For being your birthday in the month of January, there sure is a lot that happened this month in our lives. You came into this world in 2008 and went “home” in 2015. Although physically you are not here, it seems to amplify your passing even more sharing that commonality of your birth month with your passing.

We find ourselves wanting to give you a big hug, kisses and just love on you and Brisan.

That feeling never stops.

2 Years?

Coming up on 2 years on the 23rd this month when you joined Brisan on the “ultimate vacation package”, it reminds us how surreal the thought of knowing you and Brisan are in Heaven throwing down with Jesus! It gives us a reminder of the promises we have been given to not lose faith. There is no more suffering from Niemann-Pick Type C and all the rotten stuff that came along with NPC that abbreviated your lives on earth.

Me and mom frequently feel that same shock that you two are no longer physically here. You both left lasting impressions in our hearts and minds.

I am honestly having a super hard time writing all the things I want to write for this.

Let's Sing Happy Birthday to Parker today!

This video is a small clip from 1-10-2009. I love the picture at the end because it is sort of a “Celebration move” to cap it off! 

Here is to a great day celebrating with your bro and partner in crime!

Love,

Dad, Mom, Duncan, Rubee

Today was the day a year ago that you left us around 1:55pm in the afternoon. It was bittersweet, Parker.

We attempted to sing “Jesus Loves Me” as the Lord called your home as you took your last breathe. A very stark reminder of how “real” life is and how fragile it can be all at the same time.

Later today we will have a little get together in your memory to help celebrate your life and remember how much everyone cared for you and Brisan!

We don’t know what words to really write or say at the moment frankly, except We Love You Parker!

Thank you friends and family for being so kind and loving during our grieving!

Jenn's Facebook Post 1-22-16

Parker, aka Mr. Stinky…. today we are celebrating your 10th birthday without your physical presence but with a flood of memories of all the happy times and the sad times where we had to watch you suffer. At times it is hard to celebrate because selfishly… we would like to be able to hold you.

Mom, Dad, Duncan and Rubee hope that you guys are having a blast today! Your innocence while on earth was a blessing in many ways. Now you get to live out the promise that God has promised all of us that at times seems so far fetched because we just cannot imagine the infinite glory it will be. We also hope that you and Brisan are able to soak up all the activities that makes your heart full!

Your huge smile and dipples brought smiles to all! Your feisty attitude with that occassional teeth grinding when mad, really allowed your personality! We sometimes wondered how you would really react if Niemann-Pick Type C wasn't in your life. We thought this often about a lot of things for you both.

Your passing on January 23, 2015 was the “bookend” for you and Brisan’s physical story yet your story really just began. Your legacy and story will carry on for many years influencing many families when they read you and Brisan’s struggles. Although great pain in many eyes, you left a gift of hope and ultimate compassion. A true testament to the real peace that God provides, you looked like you were sleeping that day. No more pain, no more struggles and yet he calmly called you home during that time. The final minutes of earthly life showed us HIS presence only promotes peace and love. Your beautiful eyes were shown to us one last time.

Last year we had a Charlie Brown party for you where you seemed to be playing “possum” while you slept during it all. Shortly after everyone finally left you woke up and seemed well rested! We know you are a stinker! That is one of many reasons you’re our Mr. Stinky!

Little did we know that your time was so imminently near… just 10 months after Brisan passed. We know you missed him. Our hearts wept deeply and secretly inside because we knew that not many birthdays were left all while we were grieving for Brisan.

Thank you for being our son, a brother, and a friend to all whom were able to meet you. We love you Parker. Happy 10th Birthday, your first in heaven! Your celebration of life has to literally be “out of this world.”

We will celebrate you this weekend coming up big guy!

Parker Stults's Autopsy

Parker At Family Camp Memorial Day 2014

Well… seems to be a bit of deja vu, wouldn't you agree? We shouldn't have a feeling of “I've done this before”, meaning we are sharing news of the Autopsy of Parker or Brisan! Some may disagree in the first place of doing an autopsy with a child of a rare disease but it provides us peace of mind and insight into what was going on behind the scenes in their body. It also may help the Niemann-Pick disease community in the future.

It flat out sucks all the way around.  Read the rest of this entry »

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.

Read the rest of this entry »

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 »