Tuesday, April 14, 2009


Make-A-Wish foundation has granted us a vacation to Disney World for a week mid May! Our first wish was to take Jacob to Sweden, but we found out as we met with the foundation that they can't grant international requests at this time due to the economic recession. They simply don't have the funds. Our second wish was to take Jacob back to Disney World. We had the best of time there last year, and know that Jacob enjoys it and can do the trip. We also know that our girl would LOVE to go back. We're very excited to be able to go on a vacation all four of us, and know we will make memories for life.

Jacob has had another hospital free week. Yeah! We have had true winter conditions in Denver the past week though, so the respiratory season is not yet completely behind us. I think Children's hospital let kids visit again mid April, so maybe that's their official end date of respiratory season.

This week, we went back to our support group after 4 months. With Jacob being sick so much, we simply having been able to go. One mom opens her house to other families with special needs' kids one evening per month. It's food, laughter, and sharing ideas and thoughs about our kids and life. I am always amazed about how incredibly strong all these kids, moms and dads are, and that I always leave re-energized for the challenges I have ahead of me. We're definitely committed to go more regularly again.

We also went back to Night Owl last night again. This is a program completely free to families of special needs kids. They pair up each child with a volunteer for the night. They do fun activities all night long. Jacob in addition gets a nurse who takes care of all his medical needs. When our kids play, Joakim and I get a night out. Both Jacob and Sarah love going there. Sarah has found a true friend in Ginny, who is a DU student. Ginny rather hangs out with Sarah on a Friday night than going out herself. That amazes me with all the volunteers who show up on a Friday night to watch all our kids for free. We haven't been out on a date night for 4 months, so it was really good for us, especially when you know your kids have a blast.

Sarah and the rest of us have started to work with the Butterfly program's art therapist Ashley. She is a blast. She just has the best humor and outlook on life. This week we talked about helping hands, and how Sarah can help her brother and the meaning of a hand. We had a lot of fun, and also made an art piece in plaster and 3-D jelly showing our 4 hands. We still have to paint it, but it turned out great.

What I am trying to say is that we have a lot of work, stress and worries each week with all of Jacob's day-to-day needs, doctor's and therapy appointments, BUT in the middle of all of that, we have so many amazing things happening to us that would never be the case without our unique situation. I am getting more and more thankful that I get to experience those things that simply wouldn't be part of our lives without Jacob's condition. It also shows me that you should make each day and each week special.

- Maria.

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