Friday, August 10, 2012


As Sarah and I took Jacob to the warm water pool at his school on Monday afternoon, we both stopped in front of this poster. "He's not heavy, - he's my brother". We smiled at each other, since we were both thinking of Jacob. It was one of those smiles of complete understanding. A secret smile that only the two of us could understand.

For a long time, in fact several years, I ignored the fact that Jacob is growing up. My strength and will power were focused on keeping Jacob alive. The threat of him dying was so imminent with each illness and hospitalization, so the fact that Jacob was getting bigger in front of my eyes, I couldn't even take in. It seemed like a tiny detail in the scheme of things.

People was asking me, if Jacob was heavy to carry. People was wondering how we could carry Jacob. People are wondering how we can continue to carry Jacob as he gets bigger. I heard them, but I really didn't. If Jacob would stay alive and become bigger, I would figure it out. It just didn't seem like a big priority when all his doctors had told us that he simply wouldn't survive the winter.

It is now 2,5 years later, and Jacob is 6,5 years old. Wow! Who would have thought that would happen? It is the greatest gift anyone could give us. Time. Time with our son who we love to pieces. It is one of those unexpected gifts in life that I think you can only understand if you or someone truly dear to you have had to battle for their lives.

But that Jacob is growing is also starting to be a fact. It starts to be something that can not be ignored any longer. It is not simply the pounds and his height. It is the fact that Jacob has a complete floppy airway, so one of your arms will always have to support his neck and my arm position needs to be precise to allow for Jacob to breathe. It is the fact that Jacob has osteoporosis at age 6. That his bones are so brittle that a simple transfer can break a bone on him. This makes this reality hit me right in the face.

The secret is in that poster - He's not heavy, he's my brother. We will always find ways to care for Jacob no matter how hard it is. This particular one needs a little bit more structure than pure willpower though. That is why I am committed to stay in shape, and to stay as strong as I possibly can. After a day of lifting, transfering, repositoning Jacob, I am mentally and physically exhausted. I am tired. Exercise will definitely help, but we are also trying to always be a step ahead of Jacob. We got our stair lift, so we can transport Jacob up and down the stairs before we actually needed it. We got Jacob's bath handicap accessible before we actually needed it. With Jacob's handicap van, that was not the case. We were not ready for Jacob's osteoporosis when it came to transporting Jacob in the car by the time he had his first break. Jacob is getting his hoyer lift in a week. The lift will help us to transfer Jacob from room to room. It is a big clumsy lift though, and it isn't fast...It is nothing compared to putting on Jacob's lumbar support, and securing his arms today. It is not a routine I am looking forward to incorporate into our day, but when the time comes, I will be happy that that big clumsy lift is in my house. Because no matter what the challenge is, Jacob is today living against all odds, and for that any home modification, back strength exercise, or clumsy equipment will be worth it. He's not heavy, - he's my son.

Much love,



  1. Thanks Maria. I'm right there with you. Let me know how the lift works.

    1. Thank you, Sue! I will keep you posted on the lift. We got a loaner, and I ended up putting it back in the garage, since it is so big and slow to maneuver...

  2. I love,love,love that poster. Every time I walked passed it it made me smile. I know exactly where it is at. (-<

    1. I had missed it completely until this week! It was a gift to find it :-
      We are missing you guys, but hoping you all are having a good time away!

    2. We miss you guys too! Selina is making drawings for Jacob! (-: its nice to be away but just way too hot!!! Haha.