Archive for February, 2012
Me and Jennifer say all the time that we wonder what Brisan and Parker are thinking? I am sure for them it is like being in a jail cell screaming at that top of your lungs only to find out that they have you in a sound proof room with only a pin hole for people to hear you.
Can you image the picture of someone looking out through your eyes with a reflection back showing you imprisoned behind bars? This isn't to be all sad, just an observation I think we all think about but we don't necessarily tell people.
They are good little troopers. Brisan is still dealing with his Ileus but has been in a fairly good mood. Looking to get him back to school on Monday. Parker has been pretty fair. Duncan has been all over the place! Being sweet at times like below when he told Jenn that he wanted to feed Brisan.
One day Parker will stop making eye contact. When he locks his eyes onto ours and holds that for a little bit, it is so precious. They say a picture has a thousand words but that doesn't begin to describe the feeling when he does that for us. Brisan prefers not to make eye contact and will turn his head of nod downward. We will take what we can get!
The joy in Parkers eyes when he is feeling good is indescribable. This morning I told him “thank you” for giving me that warm smile and looking into my eyes. This was all after he had thrown up all over himself during the night and had a severe blow out. I had just given him a bath. This is a daily occurrence in the Stults Family!
Being parents of a child or children with a rare disease like Niemann-Pick Type C or Niemann-Pick in general, isn't the most joyous club you ever wanted to be apart of. I know parents of other rare diseases like this have similar feelings. We are fighters, we have hope but mostly we have a tender heart that is very personal towards the situation. Love doesn't begin to explain the magnitude of our feelings.
Jennifer and I know that those days are numbered. We aren't negative nelly's who think about the down side of what is going to happen but we are human. We have feelings. We're not superman or superwoman 24/7 like some people think outside our home. It makes me tear up after looking into his eyes knowing the outcome for both Brisan and Parker. We hope that our story can positively affect others.
Brisan, the last handful of days just hasn't been himself. We think his ileus came back and he will break into these random crying spells. We feel so helpless for him because the carousing we have attempted just hasn't seemed to work. He is also very tired and rightfully so.
This morning, poor Parker is having his turn like I mentioned above and is running a slight fever. We think he will be ok to say the least!
Hug your family, love your spouse, and say thank you to the Lord!