Can you believe it is mid February already? About 3 weeks ago Parker received his new chair and he seems to really like it. I say me and Jennifer like it to ! 🙂 He has been having issues with his balance because of the cataplexy. When we let me out of his chair he starts to giggle then it is “man down”. That has been our little joke in the house if him or Brisan falls down. Not that them falling down is funny because it is some serious business. They get hurt, break noses, and just look like they got in a bad bar fight.
It is hard to see these kind of things because it means Niemann-Pick Type C (NPC) is really doing it's dirty business. When you first see the boys you kinda of think they look “OK”. Then you interactive with them and it is all apparent. We contemplate what it would be like if they were just more typical kids their age. What would they say, do, and their activities. What would their voice really sound like? They are very sweet and we do know their voice but it is so few times we get to hear it more everyday.
We are very thankful for every single person that comes to our website, donates, and especially lifts our family up to the Lord. It is hard to stay focused when your pulled in so many directions to keep the Lord the main priority. I mean giving him every single piece of your life. In retrospect if this was all meant to be easy with or without this disease in our life, would we really develop the appreciation for his grace? Would we develop the since of gratitude that his blessings provide? It is about continuing forward and being thankful in every little way. Thank you!