Posts Tagged ‘Parker Stults’

Deja Vu – Autopsy Is In

Parker Stults's Autopsy

Parker At Family Camp 2014

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 »

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Memorial Bench

Brisan & Parker Memorial Bench

It's been a long time coming but we choose NOT to put anything on our website until now regarding Brisan & Parker's memorial bench. For many it was their first time seeing the memorial bench (w/o Parker's name on it) at Parker's funeral. It was completed around the end of November as a surprise (we didn't except them to get it done so quickly.) but we choose to hold off publicly saying much due to an issue of “placement” at the cemetery.

While we were waiting on those arrangements to have it moved, Parker's time had arrived and I sent out a dire email asking for assistance from the memorial company (not of their fault on original placement). It was previously placed on Parker's grave and in the early morning hours of January 23rd, I knew it had to be moved because it seemed evident we were getting close to Parker's homecoming. The cemetery had insisted on the original placement that it did't go “where it currently resides” because it wasn't on the plot map except we did own the spot in it's final position. It sits facing east towards Parker & Brisan, just west of them by only maybe a foot. It is literally right there.

Story of Memorial Bench

Near impossible really. We wanted something that stood out and could be a staple piece to remember our precious boys.

You'll see 5 army men on the base of the seat. 2 on the left and 3 on the right “sneaking” up! Duncan had put 5 army men (1 for each of us) in Brisan's casket and we did the same for Parker.

Brisan loved his best friend “PETE” and Charlie Brown. Parker has his favorite “Chewy” wrist band and Handy Manny! These were a couple favorite things that they enjoyed dearly. Under Brisan's name is “Bubbas” and for Parker, “Stinky”. Each of their nicknames.

The picture in the middle is of Brisan and Parker taken August 2008. We were on the side lawn of our Grain Valley home at that time. We had just received the news of Brisan's diagnosis of Niemann-Pick Type C. We choose to leave the picture “as is”. Brisan is on the left and Parker on the right. We didn't feel it would be right to horizontally flip the picture around so they each were on their respective sides. Embed in the picture is each of their names by their feet so if you didn't know them… would know who is who.

Orange was Brisan's favorite color and green was Parker's. The majority of the design is hand etched.

Thank You to Johnson Granite Supply & YOU!

TO EVERYONE THAT HELPED, THIS IS ALL POSSIBLE BECAUSE OF YOUR KIND DONATIONS AFTER BRISAN PASSED MARCH OF 2014!

No QUESTION about it!

Tripp Johnson of Johnson Granite Supply was referred to us from Hank who helped guide us at the funeral home (Hank was amazing to say the least!). Tripp and his company made us feel warm and welcomed. They really invested time into us to not only extend their condolences but really wanted to deliver an awesome memorial bench. No words can really describe the generosity, time, and investment they made into us to help get this accomplished.

His staff including Kaylee & the artist planned out the design and carefully executed an awesome bench! It stands out like a million dollar car as you enter the cemetery. We would in a second trade it all in to have a few more days with them here on earth but… until we see you dudes again, we LOVE YOU!

We just wanted to say thank you for everyones help and generosity!!!!

 

 

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Parker’s Funeral Service & Eulogy

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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We Love You Parker!

Parker Stults Jan 4, 2015

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.

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 »

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5 Year Anniversary

Tomorrow August 8, 2013 will mark the 5  year anniversary of what we call “the phone call” regarding to Brisan and Parker's Niemann-Pick Type C disease diagnosis.

It seems that every year is going faster and faster as we move further into the the upcoming years knowing that time isn't on their side. However, we do have some good things to celebrate and not to make this post all about being sad. We will be moving soon to a new home that will allow us some positive situations. The down side is we will be giving up other things like the boys' school teachers, nurses, and even friends we became close with. The whole situation seems to be showing much favor for us. Duncan will be starting Kindergarten here next week! Their new school seems to be really “going to work” for us already. I hope that they keep that level of excitement in the upcoming future.

Since March I had started a new opportunity and have been focusing on leveraging my skills to be a key contributor to my team. Everyday I look forward to bringing my “A” game and putting a positive stamp on it. We've not had any foster kids in our home since Memorial Day weekend. It has been very nice most of the time not to have that additional responsibility… at least that is how I feel :).  Jennifer has stayed pretty busy herself.

~ Mike

 

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Pulmonology and Cough Assist Machine

Man time really flies. It is so hard to believe that in this past few weeks we have celebrated Parker’s 7th Birthday and Monday is Duncan’s 5th Birthday. It seems just like yesterday we were bringing Parker home from the NICU and Duncan from the hospital. As you all know I go BIG for Birthdays around here. We had a “Jenn style” party for both Duncan and Parker last weekend. The theme was “the Lorax”. I have to say that I think this was one of my favorite parties yet. We had a great time with our friends and family even if there was like 60 people here!

The Lorax Party 2013

The Lorax Party for Parker & Duncan – 2013

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