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

The feeling is strange. Flat out no other way to state how Brisan not physically being here anymore feels. I think the feeling is a normal feeling because death isn't suppose to feel normal. It is a separation of your body and soul. Throw your emotions on top of that and you have the case of the “what in the world” is going on feelings.

After 90 days as Jennifer reminded me, we both nodded in agreement of “is that all”? It kinda of feels like forever ago… although the moment, the day is still very raw. The scary thoughts are you feel that you are forgetting Brisan because it is the longest period of our life that we have never physically touched and cared for him. Contrary to popular belief, it is a false feeling because that simply isn't true. A feeling that we have to reject at the gate because that is far from the truth. Sounds great, doesn't it? Practicing it is an entirely different thing.

His presence blessed our family but on a grander scale, blessed others in ways we've couldn't even fathom. His bed is essentially the same as he left our home. His pump bag is still hanging the way we left it (looking pretty gnarly though…).

As Days Progress

As the days progress, personally speaking I miss him more everyday. Thoughts at some point overwhelm me and Jennifer. Watching videos or looking at pictures have a different meaning now. I know before you would go back and watch that video and think… one day he won't be here. Bittersweet but you're never prepared. Blinded sided by a MAC truck (or Peterbuilt… whatever…). I know Jennifer feels similar.

Mothers and Fathers dream of what their children will become one day. We just didn't know that our kiddos would become inspirational leaders to others with the sacrifice of having a rare disease that would and will claim their life early.

Guilt You Face

A person has to deal with guilt. A guilt that we have heard and have felt at times is “did I spend enough time with him?”. I feel that we tried to do and have realized that you will always feel it isn't enough time spent no matter the efforts. It is the power of love and endearing pursuit of caring for your child or loved one. Not everyone who has lost a child has the same perspective. While attending a support group, we get to hear a range of emotions stemming from very tragic situations ranging from kiddos to adults. Those woulda, shoulda, coulda moments. Nothing will replace Brisan not being here but I/We are thankful for our support around us. Your prayers are very powerful.

Some people are angry at God as to why he allowed this to happen, stealing their “blessed” life. Life was never guaranteed to us nor was there guidance that we would live a pain free life. Those decisions were made up long ago with Adam & Eve's decision. Brisan is carefree and joyful right now. He doesn't get to be restricted by Niemann-Pick Type C and the effects it has on his body. That is something as parents we were not able to give him but our spiritual father was able to deliver. We miss him terribly.

Autopsy

The autopsy is in but has not been read to us. We are trying to get the meeting of the minds together to be in the same room to get this accomplished. Some precursors have been said to us that we feel we may not get any “awww haaaaa” answers during the meeting. Maybe on my next post I can describe a few things in detail what has been thought so far. Sadly, this post (portion of it has been written for over a month).

Here I Am

About 4-5 years ago, I was taking Brisan for a wagon ride, which he always loved. I first encountered hearing “Here I Am” by Downhere on my ipod. I was moved by the song and I recall as I played it over and over looking back at Brisan and that feeling of knowing the futures reality. The lyrics don't make anything better but the song really spoke to me. This is the picture I took when we made it back home that day.

Link to Youtube Video:  http://youtu.be/kN1MvK7Y-iY

[Chorus:]

Here I am, Lord send me,

All of my life, I make an offering,

Here I am, Lord send me,

Somehow my story, Is a part of your plan,

Here I am

When setbacks and failures, and upset plans,

Test my faith and leave me with empty hands,

Are you not the closest when it's hardest to stand?

I know that you will finish what you began.

And these broken parts you redeem

Become the song, that I can sing