I took this photo one year ago, yesterday. The day Nicholas died. I didn't know in the hours to come that our son would pass away from his rare disease. My shirt says "I love someone rare and beautiful." Today is Rare Disease Day and it seems appropriate to share this as our first-born and our only son left this world at age six because of his rare disease: Spinal Muscular Atrophy. Rare diseases affect more people than cancer and AIDS combined and approximately 50% of people affected by rare diseases are children. SMA is the most common rare disease, but we had never heard of it until Nicholas was diagnosed in 2009. The worst part about rare diseases is that 95% of them do not have a single FDA approved treatment. We miss our son every single day and pray for a cure for all those living with SMA.

It's Been Awhile...Nicholas' First Angel Day

I am so behind on blogging. With this being my first year back to classroom teaching after seven years, I will admit that the majority of my free time is spent on lesson planning and prepping fun activities for my kindergartners. My last post was on December 5th of last year, so I am going to attempt to update our blog as much as possible regarding Gustafson family life in the past two months.

First up:

Yesterday was Nicholas' first angel day and it was an emotional day for all of us but we decided to honor and celebrate the life of a little boy who we miss so much by driving up to Hood River, OR to visit a nursery and have lunch. We took along some paper airplanes because last March 10th, which was his funeral day, we flew paper airplanes for him. So we thought that we could make it a way to honor him each and every year on his angel day.

We went to the Good News Garden first and picked out some Narcissus, a Lenten Rose plant, and a Valley Valentine plant all of which will bloom each year at the end of February, close to Nicholas' angel day. We planted them today in the back yard so that they can be easily seen from our living/dining room and kitchen which is where we spend most of the day.

Then we visited Celilo restaurant and had a delicious lunch.

As we were walking back to our car, Jeff spotted a rainbow and pointed it out to Ella and I. Ella said, "Nicholas painted the sky for us!"

When we got back into town we bought some balloons, six green helium ones (for each year he lived on earth) to release and two flower ones to leave by his graveside.

Ella flew the airplanes we brought with us for her big brother.

Later in the day we went to my parents' house to celebrate my dad's 65th birthday and I got to snuggle my sweet, beautiful niece, Evelyn. Which was the perfect ending to a very beautiful day.