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

A very good question these days, “How are you doing?”. One that we will continually have to develop and fully find the answer for us. April 4th marked one month that Brisan went home to be with Jesus. He's laughing, he's running around, he's doing all the things this life wasn't able to fully give him and he's doing it all CARE FREE! You talk about a gift that you can never give a your child when you are physically unable to change the outcome of their abilities.

We miss him terribly. We've left his bed pretty much the way he left it when the paramedics came to take him down to the hospital. Your “normal” coming inside to greet Brisan after you put Parker & Duncan on the bus really hits you at first and it still kinda of does. Bedtime is still strange like there is this “blackhole” in your home. There isn't a moment we both aren't thinking about Brisan. Things that made us laugh, smile, and feel good as a parent. Memories that are so far engrained into your mind that at times you may have forgotten about.

I think about his love for “sweet tea” or better known out of Brisan's mouth as “teaaaa” (imagine in a southern twang voice). Although later the past 18 months he may not have been able to really “take a sip” of the goods… I know he was thinking it! You could just see the look in his eyes! Like a cougar on it's pray minus when you offered he would turn away. 

What are you thinking?

One thing that I can't wait to know one day is… “what were you thinking about this or that?”. So often you get a child who is always talking and most of the time holds nothing back in telling you what they are thinking but we have just been left wondering for Brisan and Parker. Usually just making up our own little “bubbas or stinky” voices to express what they may be saying. The kind of voices that a stranger may give you a strange look out in public for!

I like saying “oh bubbbbbasss” or “daaaa bubbbas” out loud. This is something that I would normally do when he was here so not out of the normal for me other than now… he's not physically here. I miss his “nuggles” like Jennifer would say. When you hugged him from the side… he seemed to always have a “good fit” wrapping your arms around him. Just like any kid though…. “mom/dad get off me!” I am sure he was thinking at times. We so take for granted those moments in our child's life. Don't do that in yours. Embrace that squeeze! Like we have said, not in a million years did we think March 3rd was going to be the start of his homecoming.

He was mainly right handed but certainly later in life it seemed his abilities to use his right hand became less and less and he favored his left hand poking your nose, rubbing your elbow skin or arm, or scratching at my goatee (of course Jennifer doesn't have a goatee…). I haven't shaved since the funeral week and I am sure at some point I'll need to whack it off… break a blade or two.

Parker & Duncan

Parker has been doing ok. We finally have Medicaid all back live and active for the first time all year! What a mess. Parker has been himself. We think he knows something is different like his partner in crime is not physically there with him. I would hope to think that the Lord has sheltered his mind and the prayers all of you have sent has helped him be comforted in his own abilities. In a way it is a blessing.. in a way, you're so said for Parker.

Duncan has been asking questions about Brisan like “how did he die” and etc. My perspective is he has given good answers such as “I'll see Brisan in heaven”, “Jesus lives in my heart”, “Brisan is running around playing”, and etc. Stuff that just makes you want to cry. Please continue to send prayers for little Duncan and our family. I see him feeling the emotional side of the pain but he also sees others having “normal” siblings and urns for similar. Peer models is huge for their learning needs which he never really had. He has a tall mountain ahead of him.

There are several moments where you want to “well” up and cry. The sensation that runs down your jaw up to the back of your eyes is a rush of turning on a river. You collect yourself and continue on.

Answer

The answer to “how are you doing” is simply “I don't know” because these are all new feelings no matter how much you knew it was going to happen. You're never prepared. Just like we had to answer that question during taking care of the boys, is the same thing we have to do now and that is to keep moving forward and keeping the Lord in our hearts. Asking him for guidance, forgiveness, help, strength, and his awesome grace. He's promised us great things that are beyond our comprehension. You don't feel worthy at times.

Thank you for all your kind donations, cards, and meals that you have sent our way. Our words of thanks will never be able to fully “repay” you for your kindness. It is so humbling it really does bring us to tears.