Our warrior boy Jacob is turning 8 years old today. His birthday has taken me for a trip down memory lane. Our boy was so very sick his 3rd year of life. We were told twice that year we had to prepare for end-of-life care for our boy. We were told Jacob most likely wouldn't celebrate his 4th birthday. There was simply too much going on medically, and Jacob never seemed to catch a break from seizures and pneumonia.
We got to celebrate Jacob's 4th birthday. We were so afraid to expose Jacob to germs, so it was only the four of us and my dad celebrating Jacob. I remember us making a brunch in the morning and having Jacob opening his gifts. I didn't go all the way out, since I honestly didn't know if Jacob would be able to enjoy his gifts for very long. I was afraid the gifts around the house would remind me too much of his last birthday.
We then had a pretty quiet day around the house. We hung out together, and our social worker from the hospice program came over to do hand prints with the whole family. Hand prints that didn't turn out great. Her food coloring choices were so limited, the paintings turned out in an ugly orange brownish color. I don't think we even could get one of the paintings out of its form. All in all, a pretty quiet birthday with an underlying sadness.
As spring came around our boy was still with us. This was a turning point for us. We knew we couldn't live waiting for our boy to pass. We had to stop worrying about the future, and live in the moment. It was of course easier said than done when you have a very sick child who turned blue on us and went into status epilepticus sometimes several times a day. At the same time, we started to find a sense of deep gratitude and sincere happiness when Jacob had a good day.
Today we are celebrating eight years of life with Jacob. The double age from what anyone thought Jacob would live. We are celebrating that he is here with us against all odds. We are celebrating Jacob's extreme endurance and willingness to live. We are celebrating our warrior Jacob. We know not every Mito kid gets to see his or her 8th birthday, so as we are celebrating today, we will also keep our Mito angels close to our hearts.
Happy birthday Jacob, and Go Broncos!
Sarah, Joakim & Maria.