Monday, December 5, 2011


Last night as I was sitting on the couch writing the last Christmas cards, having some Swedish glögg, I realized that I had my back to Jacob’s monitor. I was relaxed and not worried that I couldn’t see him sleeping. I could hear his breathing, which was even and deep. I felt at peace.

I am enjoying the holidays this year. Jacob hasn’t been home for the month of December since 2007. That is 4 whole years. We are always spending this month in the hospital. I know every Christmas tree at Children’s Hospital, I know every blinking Christmas light outside the hospital, and how they always make me a little bit sad at night. I know the draft from the hospital window as I go to bed, I know all the carolers and entertainers coming to the hospital during the month of Christmas. I think it is wonderful what Children’s Hospital does for sick children during the holiday months, don’t take me wrong. They do a fabulous job.

But I also silently enjoy being at home this year. I enjoy having my coffee in my Christmas mug in the morning. I enjoy baking my Swedish treats. I enjoy my decorated house. I enjoy my Christmas lights. I have hope that we will be home this Christmas.

But most of all, I enjoy that our Jacob is doing so well right now. He is still in school. Jacob has never been able to go to school a whole fall season without illness, and now we’re only 2 weeks away from Christmas break. Jacob has not been sick a single time this fall. Jacob is still going to the pool each week for warm water therapy.

I can’t get enough of Jacob smiles! Last night, Jacob was playing on his new Elmo guitar with his dad, and he couldn’t stop smiling. I honestly think Sarah had forgotten that this is how Jacob was all the time in younger years. It was way past bedtime, but we just couldn’t stop playing that loud Elmo guitar…

Jacob is out and about again! We still pick our outings for Jacob due to all those nasty germs this time of the year, but we are going out all four of us as a family again. We all went for Thanksgiving dinner together. On Saturday, we went to Bal Swan’s Christmas party. It is always a blast, but again, I had to realize that Jacob hadn’t been able to go since 2008. Jacob got to visit with Santa in a safe environment for him, and he got that loud Elmo guitar…

If you want to see Jacob and Sarah with Santa, you can go to our local paper Broomfield Enterprise:

We also got to enjoy the best Charlie Brown Christmas party this weekend. Our neighbor puts on these amazing parties, and each Christmas party has a theme. Jacob was doing great, but finally said that enough is enough, and fell asleep on the couch…Time to go home! I was thinking back on the parties over the past years, and realized that Jacob went to the Polar Express party last time, and was it in 2008 or 2007? I am not really sure anymore, he definitely has missed a couple.

I love that Jacob so strongly wants to communicate again. I love how he makes choices again, and how we need to think about new ideas for him to communicate with us.

This last half a year has truly taught me a life lesson. You never know what life has in store for you. I know we all can say that, but reality is that I didn’t expect to experience this with Jacob again. It is a precious gift that I gently unfold each day, since I don’t know what life has in store next.

From my safe home, I still receive messages about Mitochondrial children not making it. Our dear flight for life nurse and friend bringing in a sick Mitochondrial child to Children’s Hospital, and the child passing away in the Intensive Care Unit. Dr. C. caring for a baby with Leigh’s Disease passing away last week. My dear friend who is spending her second holiday without her beautiful snuggle bug.

And because of these stories, it is even more important to cherish and treasure the gift of Jacob’s life, each and every day.

Much love,


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