smoaksignal

December 2008
Jacob is celebrating 12 Days of Christmas by following the story of Jesus' birth. We decided to utilize a gift given to
us by my sister for the kids. It is called "The Elf on the Shelf." It includes a little elf and a book and the idea is that
the elf sits on the shelf and watches to see if the kids are naughty or nice and reports to Santa at the north pole
each night. Each morning, the elf is supposed to be in a new place. We are not big on the naughty or nice aspect of
Christmas. First, the amazing gift of Christ coming to earth was not based on how nice humans were, in fact it was
because we are sinful. So, gifts are not gifts once they are based on merit. Second, I don't want to rely on a toy elf
to discipline my child into right behavior. But, we were able to utilize this elf in a fun way to help with the 12 Days of
Christmas that we had planned to do. Each morning, the elf is in a new place in the house. When Jacob finds him, the
elf tells part of Christmas story from Scripture and nearby Jacob can find the figurines of Mary and Joseph along with
a surprise. The idea is to show that Mary and Joseph had to travel from Nazareth to Bethlehem. We tried to make the
surprises fit with the lessons we learn each morning from the story. The surprises are either toys or treats. I will try
to post a clip on the blog soon with a recording of the elf telling the story. The elf's voice is created on my computer
and is played back on an iPod with portable speakers that are hidden from Jacob's sight. I guess we could call him an
iElf. Jacob has responded great to the whole project. He is excited. He knows the elf is mechanically speaking and not
magical. He is the kind of kid who is already questioning the existence of Santa, so it is no surprise that he is not
convinced that the elf is real. But he is learning new things about God each morning and our goal is "to raise him up in
the way he should go." It has been fun for us to watch.

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November 2008
Jacob spent the night with his grandparents, BB and Papa. The next night he was home and when he was going to
bed he stated, "Dad, if we are too polite to each other we will end up being bad." I asked him to explain. He said, "If
we are too polite to each other we will get into an argument." I laughed a bit and asked him what he saw at BB and
Papa's to make him think that. He said, "Well, if the man says to the woman, 'After you,' then the woman says, 'No,
you first,' then the man says, 'No, ladies first,' then the woman will say, 'No, you first.'" I asked him if BB and Papa
started “arguing” because they were trying to be too polite to each other. He smiled and said, “Yeah. They are
cuckoo in the head!” It is amazing how five year olds interpret things.

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September 2008
Jacob's big change is that he has started kindergarten. He is BIG STUFF now! He goes to the same school as Macayla
which was allowed in spite of the fact that we are not technically zoned for that school. Since we are not zoned for
it, taking the bus in not an option for Jacob, which is fine with us.
However, after a few days at school, Jacob asked with much concern why was he "different" from everyone else. I
asked what he meant and he said that all of his friends at school liked to work "plain" puzzles and they all rode the
bus and he didn't. He asked if he could ride the bus. I explained the zoning situation and he was upset that he could
not ride the bus because it made him different. Amazing that in less than a week of school, peer pressure is already
kicking in. We have reassured Jacob that he just needs to be him and not worry about being like everyone else. God
created him to be Jacob and not anyone else. Jacob has since settled in and loves school. He is a sponge and
absorbs more than we can keep up with. Hopefully, he will continue to absorb good stuff.

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June 2008
Jacob hurt his finger playing with a pocket door in our bathroom that we have told him not to play with multiple times.
I had a headache all day and when Jacob hurt his finger, I was not the most compassionate father. I was short with
him and not very understanding. In the midst of half-heartedly consoling him, Macayla's started having grand mal
seizures (see the blog). During those seizures, Macayla stopped breathing. She turned gray and her eyes glazed over.
She was slipping away. In a panic, I yelled at Macayla to "breathe." Jacob heard me and came in the room. He saw
that I had tears on my face and he asked what he could do to help. The only thing that came out of my mouth was,
Pray! Pray that Macayla will start breathing again. Jacob responded, O.k. in a very matter-of-fact tone. He took two
steps down the hall and prayed out loud. He said, God can you help Macayla stop choking and start breathing again?
Could you do it today, like right this instant? Within a few seconds of Jacob finishing that prayer, Macayla spit out a
lot of mucus and began breathing again. Once Macayla seemed stable, I began to clean things up. Jacob came back
to the room carrying a bottle of diet pepsi
(my favorite soda) and said, Dad I brought you something to make you feel better. I had to hug him and ask his
forgiveness. I told him that when he hurt his finger, I had not been very nice. But when I was upset and scared he
came along side and prayed and comforted me. I told him he was being a bigger man than I was. He hugged me and
gently patted my back and said, It's o.k. Dad. It is quite humbling to be Jacob's Dad.

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March 2008
Learning about the End
Over the past two months, Jacob has been asking more and more questions about Macayla and her condition. He has
also been asking about death in general and though he never directly put the two together, I could tell he was
getting close to putting the pieces together of Macayla's prognosis. We have purposely waited in telling him until he
seemed ready to process it. Finally, Jacob asked if Macayla will grow up. I reminded him that neither we nor the
doctors can get rid of Battens disease. I reminded him that because of "the Battens" Macayla will continue to lose her
abilities and her body will not work as well. I then told him that Macayla would die because of “the Battens.”

He went silent for a moment and then said, “I don’t think that is right. I think you would die first, Dad, because your
older.” I told him it is usually that way, but because of Battens, Macayla will die while she is still a child. He then
asked, “Will she go to heaven?” I said yes and he then asked, “Will she grow up in heaven?” To that I could only say,
“Jacob she will be more grown up than any of us because she will be her whole self.” He was silent. I asked him how
all of this made him feel and he quickly changed the subject.

As we have been pre-planning for Macayla’s funeral, we have discussed how to prepare Jacob as best we can. Then
Jennifer’s grandmother died suddenly. When I told Jacob the news, he was visibly shaken. He said he was sad and felt
bad. On his own, he knew this meant he would not see Nanny again. We talked about it some, but he mainly wanted
to be quiet and hide his face. He did not cry but was just quiet. After a while he got up to play and from time to time
he would stop and tell me that he still felt sad. He asked if he would always feel sad. I told him no but that it might
take a while before the sadness goes away.

Then, I was in the kitchen with Macayla giving her medicines and Jacob ran in and said, “Dad, don’t” and he stopped
mid-sentence. He came over to me and whispered, “Dad, don’t tell Macayla about Nanny. It will make her feel bad
too.” At bed time, he said he still felt bad. I suggested that it might help to talk about some of our favorite things
about Nanny. He said, “Dad, if we talk about that, I’ll just worry about it more.” I told him that was o.k. too. The
next morning, he and Jennifer did talk about some favorite things. Jacob wanted to know about Nanny’s pound cake.
He asked if we had the recipe for Nanny’s pound cake and we assured him that we did. It may not taste exactly like
Nanny’s, but I had to share with him that Mom makes a great one.

We went through the process of the funeral with Jacob and he learned about caskets and burial. He wanted to see
Nanny in the casket, but that was not possible. It was a closed-casket service and I simply told Jacob that the
casket had to stay closed. Overall, he did great. He is still sad and he had some tender moments with the family. In a
small way, it is preparation for Jacob as we face Macayla’s prognosis. I hate this tragedy has struck our family and
we miss Nanny tremendously. But now, Nanny is all grown up and complete in heaven and that should bring comfort
to Jacob.

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February 2008
The last couple of months have been hectic and I think Jacob has had to spend too much time with his Dad. My
attitude got a check the other day when we were riding together in the van. We were pressed for time so I
apparently was not being very personable. Jacob said, "It must be pretty boring to be a father." I asked what he
meant. He responded, "It must be boring to be a father because you have to take care of kids all the time." I assured
him that being a father was not boring, maybe difficult at times, but not boring. I took some time to think about what
led him to this conclusion. My attitude was obviously teaching him something about fathers. To top it off, the next
day he comes to me out of the blue and says, "Dad, I CAN wait to be a grown up. Being a grown up is not much fun
so I can wait." His perception and wisdom was convicting. Being a grown up does not mean we should lose the
wonder of life, but I obviously reflected that loss of wonder to Jacob. It is also convicting that as a father I was
being a poor reflection of the heavenly Father that I want to point Jacob to. I pray that I can regain that wonder and
let it be contagious for Jacob.