Posts Tagged ‘Niemann-Pick Type C’
Parker Stults's Autopsy
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.
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.
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 »
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.
On Sunday, 8-26-2012 we had the pleasure of meeting Havliah & Guy from Minnesota who were driving through back home. They have a little guy Mason who also has Niemann-Pick Type C disease. We were very appreciative that we had the opportunity to spend a few hours with them over lunch!
4 years ago today, we were summoned by an out of the blue phone call from the doctor asking us to come into see her. Of course we knew that wasn't good news considering we had been waiting over 10 weeks for either a “yea” or “ney” for Niemann-Pick Type C disease.
Watching the Olympics is interesting because at that time 4 years ago, the Beijing Summer Olympics were having their opening ceremonies while we received the news. That day was really like watching a movie. It was very surreal like and any parent with children of a rare disease potentially would describe that day they learned of the diagnosis of being of similar feeling.
Isn't life funny how we have a black and white definition most of the time but we complicate it to add different shades of grey? It is easy to say that we will take the higher road and be nothing but positive and encouraging. All though this is very inspirational and true, you and I are still human. We have feelings… we have emotions. When you start to get close to others in your disease community and the disease claims their life, you seem to be hit with bit more of a reality that your future will look the same. Others may not view it in this manner and everyone is going to deal with it differently. We as parents can offer advice until the cows come home but sometimes that isn't the answer. For us, we fail every day to make sure the Lord is in control and seek his guidance first.
Thank you to each and every one of you that has stood by our side, shown support, and lifted us up in prayers. It is because of you that we get through each and every day with the help of others.