Our Blizzard

Hi all, I know normally I am not the one that blogs but today I am. As I am sitting here in this blizzard watching the snow fall, I am thinking about Brisan and Parker. I often think about what they would be like if NPC was not taking them away from us. Would they be begging me to go outside and play in the snow like Duncan? Would they be watching the TV to see if school is canceled tomorrow? While Duncan is excited about the snow and spending time with Mommy and Daddy, Brisan and Parker really have no idea. But that is just our reality. They don’t even know what snow is anymore and don’t say Mommy or Daddy and have not for a long time.

Brisan and Parker Laughing

Brisan and Parker Laughing

I find myself having a hard time dealing with this “reality”. I know in my head that everything happens for a bigger picture but when you are in the forest it is hard to see anything but the tree in front of you. But when you take a step back that is when you can see the whole forest and the bigger picture. I was once told that there is light at the end of the tunnel and it is not a train.

As I have been talking with some friends on facebook, I am slowly starting to learn thatI have to ask for help when I need help, I have to allow myself to feel these feelings and I have to rely on those that have sadly gone before me. None of those are easy for me to do. I am a very planned and organizing person. But let’s face it, Niemann-Pick Type C has a plan of its own and is not organized like I wish it was.

On a good note, we have a new member of the family, Jenna. Jenna is our new personal health aid that is working with the boys. I have to say that she is great with the boys and she loves them as her own. That is exactly what we need. She is always asking us questions, wanting to learn more and more about them, their story and NPC. More that I can say for 98% of the ones in the past.

While I am very sad at our crazy daily life, it for some reason makes me want to fight even harder. This is where we need help. We know that we can’t fight this battle alone. We just can’t. We need your help, awareness is key. If we can save one other family from having to even know what NPC looks like then I would feel successful. I have heard several times lately that I am NOT Super Woman and Mike is not SuperMan. (That also doesn't mean I wont try though.) There has to be some way to make Brisan and Parker’s life better than it is already and also find a cure/ treatment for this monster. That being said, I think we may do some finger painting today with all three boys.

I’ll let you know how it goes.

Last note, “The King has one more move!” I don’t know what it is but I have to trust in him and know that it is all for His glory and Brisan and Parker will and are making adifference in this fight against NPC!

  • Sara Paxton

    Jenn – I cannot imagine, and cannot relate to what you deal with on a day to day basis… watch your children fade a bit with each day… Your smile is so beautiful and bright I can only imagine how happy they would be if they were to celebrate a full life each day like Brisan… You cannot change anything … all that you can do is cherish every second that they are here … though their life is not what you would have asked… make it the best that you can each and every day. These days may be hard, but these should be the best days of your life as there will come a day when you would give anything for these moments… You are an amazing woman, friend, and mother … Know that I am always here if you need to talk, vent or cry… It is so great to capture your thoughts in blogs and memories … Because you will find comfort in relieving these memories in the future… This snow storm reminds me of the storm that came the week before Jadyn was born… we had about 8 inches of snow all of sudden, and we all took a snow day… I couldnt do much and had limited movements but I went ahead and went outside for pictures and a few snowballs. Snow in February makes me think of Jadyn… I know there will be many people there to help you along the way, but dont ever think you are alone or that you shouldnt reach out. Love, Sara

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