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

Posts Tagged ‘Parker’

Our lives as many of you are aware has changed drastically the past 19 months. We lost Brisan March 4, 2014 and then Parker on January 23, 2015. During this time we had always been Foster Parents and cared for a few handfuls of children the past 3 years. We had one little girl come into our home August 1, 2014 named Rubee. Through a long process and even challenging times because of our grieving, we officially adopted her into our home on October 9, 2015.

Wait.. what?

Many of you also think we are beyond crazy. That is ok because to some extreme you have to be. You have to be extreme in your thinking, heart, and faith that God has a plan for your life and it doesn't always include “you” as the main subject. Here we are in the midst of grieving and we were called to adopt this little girl. This wasn't any ordinary little girl either.  Read the rest of this entry »

Father's Day for many is a joyous celebration of their pops. For some, it brings heartache that their father is no longer here. For others, it serves as a painful reminder that there was no father to fill that role.

Being a Father comes in different variations and terms. That person sometimes is not your biological father but a man who stepped up and helped fill that role. A Father is someone who loves unconditionally to a fault no matter what circumstance may present itself.

Father's & Mother's day in the Stults household has a new meaning. As of writing this, we still have both of our parents alive but with the gaping hole that we are missing Brisan & Parker, our first & second born. They each made it to 9 years of age respectively. The moto of “They only have a childhood to live a lifetime” has spoke volumes to us and so THEY DID. An unbelievable stamp of reality with bookends to mark a precious time in our lives that we will never get to experience again until our heavenly meeting.

On Father's Day, June 21, 2015…marks our first of many without our two oldest boys. In retrospect, we have much to celebrate in Duncan. He has been a caring & compassionate trooper. We love him so dearly. At a young age he had to take a bit of a back seat while we took care of his brothers. He had to watch his parents care for them in a way that many of his friends would never understand. He had to learn to “grow” up being the big brother when his role was the youngest brother. He missed out on his brother's “roughing” him up and teaching him the ropes but THEY DID. They taught him compassion, caring and understanding… to LOVE.

Being a Father has always been significant to me because it produced a bond of Love that could never be manufactured otherwise. I couldn't possibly realize the feeling without the experience of my own children. I can also say in the same breathe that losing two children in a short time also solidifies that deep Love. I think that Love is similar to what our God has for us. He died for our sins and made us a promise that if we endure during the difficult times and ask forgiveness of our sins that we will be with Him again in Heaven forever. We know Brisan and Parker are celebrating with Him. He's made that abundantly clear to us through the small glimpses of hope.

I've always looked at Father's Day as just one day out of the year of being a Dad. I knew being a Dad to Brisan & Parker after August 2008 was going to be numbered physically on earth. I am so proud that I was chosen to be their earthly Dad. It was such an incredible honor that God felt that we could take care of them for their short time on earth.

Be patient with your children while loving them and understand that their life and your life can be very abbreviated. Be awaken to the reality that perfection isn't always achievable.

Love them…take care of them….hold them tight. Spend that extra 2 minutes you'd otherwise postpone. Know that although you will try this and fail, you get up and dust yourself off to try it again. Life isn't about perfection but the ability to fail forward.

Love you Brisan & Parker. Thank you for loving me in all the ways you were able to show.

Just a few things in April

Easter came and went but it wasn't the same. Our first with both of them not here. We have came full circle of learning of a horrible disease and then living through the years knowing Brisan & Parker would one day succumb to the inevitable. No matter how much you think about what that “may look like”, it never is and the pain is more real than you could ever imagine. I don't think we are meant to know what that pain beforehand is really like because it would be crippling. Why take away the good before it all has to happen. Your soul cries out for that need of comfort when you are no longer able to hold them close physically. Me,& Jenn miss those dudes! Duncan talks about them frequently.

Thank you Lexi & KSHB 41 Action News

On April 23, 2015, Lexi Sutter and 41 Action News were so kind to reach out and do a story about our family! We are always blown away with the generosity of others. Here is the link to the story and video below. They did a wonderful job and we are so proud of the time they invested to put this together. We are grateful and hope it is just a little piece of !!!

Youtube Link: https://youtu.be/Lw2w9aBn5Io

Story Link:

http://www.kshb.com/news/local-news/missouri-family-copes-with-loss-of-two-sons-by-helping-others?autoplay=true

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 »

On the 22nd Brisan went in for dental surgery and cleaning but…. he is still in the hospital. He only came home for about 5 hours before we had to go back last Friday night due to a high temp and extremely difficult breathing. This past Tuesday, Brisan celebrated his 9th birthday. The staff and child life at CMH does a wonderful job of making all kiddos feel special on their birthday.

He had a lot of air in his tummy but more importantly developed an infection (septic) after the surgery.

Last night he was able to go from the PICU to a regular room because of his gradual progress in the right direction. Unfortunately he is heading back to the PICU due to moving in the wrong direction. It just doesn't seem like he'll be coming home anytime soon. On top of all that, Parker has his dental surgery tomorrow and hernia repair. pfft.

Most of you probably have been following Jennifer or I's Facebook posts but wanted to get this on the site for those of you that may not be on Facebook.

May was an eventful month in many ways. We had a little man in our home through foster care, PV Family Camp, and just over all busy to say the least. Now the month is over we no longer have any foster children in our home and probably are considering strongly of putting that on hold for the moment. Really to much drama associated with something that shouldn't be too complicated.

Our annual PV Family camp went very well. This year we were apart of the “team” helping get things organized and conducted. It was an enjoyable time for most of it. The weather cooperated which is always a bonus for all the families! The follow day after we arrived home our nurse of the past 4 months decided to quit without notice. Hopefully we will find the right person that will fit our needs soon and who will be respectful to our home and personal life.

Duncan started pre-k this week. They do a kindergarten round up for a month and he seems to be very excited! Brisan and Parker have been fairly OK. Just seeing the seasons of decline in some ways and then it hits you about how you don't have normal kids who do normal things who are not able to participate in anything that your friends kids are probably doing. Life seems so normal to  us but once in awhile it creeps up and smacks you up side the head.

We are considering attending the annual Niemann-Pick Family Conference this year but more than likely if we do, only one of us can go. Way to costly to fly the whole family plus a nurse with us. Sounds immensely stressful at this point. ha

Duncan Starts Pre-k

Brisan & Parker at Church