Saturday, February 2, 2013


As we have been celebrating Jacob's 7th birthday, I have also been preparing to speak at the Ethics Conference at Children's Hospital next week. The name of the conference is Making hard decisions for clinicians and families. The focus of the conference is on end-of-life care. The conference forced me to travel back in time. It forced me to rethink and relive our discussions and decisions around end-of-life care for Jacob, thinking about how terribly sick Jacob was right before he turned four. I remember Jacob's 4th birthday as bittersweet. We were very happy to have that day with our boy, but I also remember being afraid to plan for Jacob's 4th year of life. I didn't know how much hope I had for Jacob's future.

Fast forwarding to 2013 and Jacob's 7th birthday. Jacob is home, but he is still recovering from his colitis. We're still weaning Jacob off steroids, his immune system is lower than it typically is. His labs are wacky every week. Many values are off, most likely due to Jacob being on steroids. Some are related to Jacob's colitis. The thinking was to celebrate Jacob's 7th birthday at home, just the four of us.

But his friends had other plans. They were asking when they could they come and celebrate Jacob's birthday. When was his party? And that is when it was clear - steroids or not - Jacob needed a birthday party! Having been close to loosing our boy, it might sound counterproductive to put on a big party, but for that particular reason, Jacob needed a party! When your life is fragile, you have to live it real, every day.

So, we decided to do a pizza party! Everyone made their own pizza for lunch! It was a success to put the pizzas on the grill! After lunch, it was craft time. Since we're approaching Valentine's Day, the kids were making Valentine's cards and other crafts in the colors of red and pink. We also had plenty of sugar cookies to decorate with frosting and all kinds of sprinkles. The kids were on sugar high!

It was then time to open presents. The kids were so excited to help Jacob open their gifts to him. Jacob got many home made cards and a very special balloon. The balloon was decorated with so many stickers, it couldn't fly anymore! It was perfect decorations for Jacob's chair no matter what.
Jacob got his first own switch toy - a puppy! Jacob activated the puppy over and over again, and the kids loved it, and cheered Jacob on every time he got the puppy to walk and bark!

We ended the party with Swedish strawberry cake. We sang for Jacob, and all the kids helped Jacob blew out his 7 candles. As we finished the party with cake and coffee, Jacob was exhausted! He fell asleep in his bean bag...but the kids were not done! They continued playing barbie for a few more hours as Jacob was in dreamland...

It was a good day. It was a really good day. Sometimes we need to remember the really hard times to know how good we have it now. A birthday party. Jacob's last birthday party was when he turned 3, and today we celebrated with friends again. I am ending the day with an immense gratitude for Jacob's seven years of life.

Much love,



  1. Kathleen, it was special for us to share Jacob's birthday with you. We hope you can come back and celebrate other birthdays with us!

  2. It was a wonderful day! A day I will not forget. Love Karen