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

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

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. 

As we made our way down to CMH, it was a cold rainy day. Similar to the past 3-4 times we've went to visit Brisan's graveside… it has been cold and rainy. Overcast and gloomy was included. Those descriptions are accurate of our grieving mixed in with a few sunny days that our local weather has given us the past few months.

We were not for sure what to expect when we arrived Monday. A mixture of emotions involved. We were asked if we wanted to take a couple boxes up to PICU and we kindly had to decline. What we found interesting and also gave us some joy was the sense of excitement and joy that these tissues brought to the staff. You could go as far as to say you've never met anyone that excited for some tissues!

In an unfortunate and devastating story, there was a brief moment that we were able to positively affect others with Brisan & Parker's story. Even before 3-4-14…. our family's story has resonated to many that we will never know the full length it has impacted others. In life we don't get to do it alone (no matter what the life gurus tell ya….) but our purpose is so much more than we can put to words while we are hear.

How are we doing?

Since the beginning of August lets say, we have had a soon to be 3 yr old foster daughter in our home. She brings some unique challenges. Essentially she hasn't had parenting for 2.5 yrs of her life but Jennifer who bares much of the responsibility for her, has made progress with her.

Parker has lost some more of his mobility. Example would be he always loved to chew on his rubber chewy that is clipped to his shirt. He has a very hard time picking it up off his chest and bringing his hand to his mouth. A favorite activity that he enjoys and gets soothing from yet he isn't able to do that anymore. Subtle in how it just came about.

His secretions are going bonkers and if he isn't laying down… it is a cough fest 2000. At times you wish the boy could just hock a loogie! He is sleeping more than he ever has. It isn't uncommon now for him to sleep all night and into mid afternoon.

During all this Parker does have some good days where he seems wide eyed and bushy tailed. We just know now what is “around the corner”. Not to sound stark in this reality but this could be his last Christmas. Parker will turn a big 9 on 1-8-15! We just don't know and have to keep aware of this to make sure we hunker down to penetrate those precious moments of time to encapsulate every memory we can make. We do everything we can to stay positive so don't misread that statement.

Duncan has been a champ through all this. He still says touching things like “Brisan is with us and he will get to watch this movie with me” for example. A few days he has been sad and wanting a picture of Bubbas to hold onto and look at. We pray that God can just keep touching his heart and using these experiences to make him the man he wants him to be.

Merry Christmas to you and your family.