Tuesday, February 2, 2016


It's me. I turned double digit on Sunday! Who would have thought I would get to see my 10th birthday?! It sure was a special weekend, and a celebration of my life.

On Friday afternoon, Icing Smiles delivered my birthday cake! The best birthday cake ever for a Superhero party! It wasn't just a beautiful cake, it was also the most delicious cake. For many this was the best tasting cake they had ever had. The baker's daughter goes to my school, so she knew me already. That was a little special.

On Saturday, it was time for my birthday party! I had told mom I wanted to be Superman. I was really excited to celebrate my birthday with friends and family. Several of my classmates came to my party. Grandpa was our special guest this year.

We had a pizza buffet for our guests. This is something we have done for the last couple of years, and it's liked by everyone.

Sis was in charge of Superhero crafts! I made my own superheros and my own superhero mask. She had made the best Superhero bingo, but she completely forgot about it. She was annoyed when she realized it late at night. Next year!

After pizza and crafts, it was time for my center piece, the SUPERHERO CAKE! Mom had a special gift for me this year. She hold a special double digit speech for me. I'll share it with you below.

I was tired at the end of my party. I loved when my friend Liam decided to start reading my Star wars book to me. It was the perfect ending to my party.

Sunday morning, we woke up to a beautiful winter morning. We had a thick layer of snow on the trees and a little fog. Sarah had an early volleyball tournament, so mom and I had the day to ourselves. We took it easy all day. We read books and cuddled.

My friends Selina and Leandra also FaceTimed us from their vacation in Italy. It was so great to talk and see them all thanks to technology! They gave me the absolute best gift for my birthday. They will come and visit me this summer. I was so happy to hear the news.

When sis, dad and grandpa were back home, we had a nice dinner together, more cake and more gifts! Look at my new very large bean bag!

It was a very special birthday weekend. I was so happy to get to spend this day feeling happy and healthy with family and friends.

Get your kleenex, and read what my mom wrote me:

Dear Jacob,

You have no idea how incredibly happy and grateful I am to have been your mom for 10 wonderful years.  I have been told by numerous doctors that today wouldn’t happen. You decided differently.
You sure have kept me on my toes. It started already in uterus. My ob/gyn told me you wouldn’t survive in uterus. I had to prepare myself to miscarry. Against all odds, you decided to beat all odds and continue to grow in uterus and be a full-term baby at 40 weeks.

At 4,5 months we were told there was nothing more to do. We should prepare ourselves for the worst. I remember the incredible pain. I fell in love with you the moment I knew you were in my stomach, so the thought that I would lose you at 4,5 months just didn’t seem right. That is when Joakim and I had to grow up. We had to very quickly become very medical savvy and being your advocates despite never even heard of the diseases that were thrown at us. I remember googling inborn metabolic diseases. We knew you were worth every fight, your smile and perseverance made us going. You were our little baby boy.

Fast forward to your third year of life. We got to fully understand what it means to live with mitochondrial disease. We got to see what it means to have a mitochondrial crash. We more than once got to see you fight for your life. We got a crash course in emergency and intensive care. We feared for your life more than once that year. I remember sitting with you in the trauma unit in the Emergency Room on a Saturday night, and your brown eyes told me that we would be ok. To this day, I always look you in the eyes to make sure we are both ok to fight the good fight.

Grandpa is here today to celebrate your 10th birthday. He was also here for your 4th birthday. It was the most depressing birthday. Your medical team had told us you wouldn’t see your 4th birthday. Your immune system was at an all time low, grandpa and us celebrated with you. No friends or party. I am not sure how many times I had to try to keep my tears away that day. On top of it, we had the worst social worker from your hospice program join us to do clay hand prints and she had absolutely no clue how to do it! It was disastrous all around!

Despite a depressing birthday, you once again decided to beat all odds. You had no interest in making your 4th birthday your last. I will never forget the first spring walk we did together. You were still so very weak, but that is the day I knew you had decided to continue living. That is one of the most life changing moment in my life. Thank you Jacob for that gift, the gift of living in the moment and to realize what is truly important in life. I am not sure I would have found that path on my own. When I know you only have today, I can find so much joy from simply giving you a bath, from reading you a story, from communicating with you on your talker, from cuddling with you and giving you endless kisses. My favorite is to give you a back massage, you so enjoy.

Last summer, we were told once again you didn’t have much time left to live. We were told to prepare ourselves once again to lose you. I was devastated, and so were your dad and sister. After 10 years with you, my skin is a little thicker and I am little wiser. I realized that it truly doesn’t matter what the doctors predict. YOU, my sweet lovely boy, ARE IN CHARGE. You have no idea how much happiness you give us every single day. A decade with you, sweet Jacob, is so worth celebrating. So with that, let’s toast to Jacob’s life and OUR superhero!

We love you so very much.

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