TAKING A BREAK - OUR WAY

It has been a very long time since we took a vacation as a family. I honestly don't even remember our last vacation all four of us. I am thinking it must have been Jacob's make-a-wish trip back in 2009. We have always loved the Rocky Mountains. It is amazing to have these mountains in our backyard, what a gift. Every season brings a special beauty to our mountains.

We made many trips up to the mountains with Jacob when he was little, when he still could tolerate the high altitude without seizing. One thing that was hard was that we never knew the standard of the condo we rented. There were times when we simply couldn't have Jacob roll on the floor due to it simply being too dirty. Sometimes the bedroom setup didn't work well with all of Jacob's equipment. Sometimes there was no place for Jacob to be. That took away from our get aways. We couldn't enjoy it as a family. So, many years ago we did buy a time share up in Breckenridge. We had friends who had invited us up many times, and we liked the condos. There was plenty of room for Jacob and his gear, and there was that perfect warm water pool for our boy to play in! We had found the perfect vacation spot for Jacob and the rest of us.

We were able to take Jacob up to the mountains several times when he was little. We went swimming. We strolled through town. I especially remember taking Jacob down to main street in Breckenridge in his wheel chair one time. All walking paths were covered in snow, so it was quite the exercise for me, but Jacob loved it! He was smiling as we were strolling through town. We made the bedroom into Jacob's room with feeding pump, smart vest, suction machine, oxygen tank, medication bottles, formula, and the list goes on. It took us two cars to get us all up with Jacob's gear, but it was so worth it!

As Jacob's respiratory status has declined over the years, we noticed that it was harder and harder to take Jacob up to the mountains. He didn't like the high altitude. He had trouble breathing, he had multiple seizures. Our mountain trips didn't feel like vacations anymore. We spent all time watching Jacob for seizures. We were literally scared if we would make it down to Children's from the mountains. We stopped doing things, we simply stayed in our condo watching Jacob.

After Jacob's first crash in 2009, we had to face facts. It would be very hard for the four of us to vacation again, so we simply stopped. We just stayed home. We didn't go back home to Sweden to see family anymore. We didn't go to the mountains. We never ever went far from our house, since we never knew when Jacob needed an ambulance to Children's Hospital. We stopped using our condo in Breckenridge. We turned into homebodies.

A good friend of mine, a friend who tells you the things you don't want to hear, a friend who tells you the truth, told me that we had to start taking breaks. We had to get back to taking vacations, even if it meant we did it without Jacob. I knew she was telling me something that I had to listen to.

So, we started to use our time share again. The two last summers we have also taken Sarah to Sweden. One of us going with Sarah, the other one staying back with Jacob. This last September, Joakim and I also went away on our own for three days. We're getting better!!!

This past week, we had our time share in Breckenridge. It was not an ideal week for us. Sarah had just gotten back to school, Joakim and I could not take vacation. We both had to work. But we did make it work! Sarah spent the whole week up there. Joakim and I shared the week, so we both could get our work in, and also be home with Jacob. With the help of our fabulous nurses, Joakim and I were also able to spend 2 (!) days up there together. We skied, we went out for dinner, we relaxed in the hot tub watching the stars, we spoiled Sarah rotten. It was a great week, and I came back relaxed and knowing that this is one of the keys to me keeping my energy up all year around.

When you have a child with such high needs as Jacob, he will always get the first bets in our home. Jacob has something or often multiple things that HAVE to happen every hour of the day. If something is due, Jacob is always, always going to come first. Always. For Sarah to have the full attention of one of her parents or even both of us, is a big treat to her. It is not about the skiing or swimming, it is simply spending time together and having time to talk. To give her undivided attention. She blossoms every time we go away with her. Don't take me wrong, we all miss Jacob when we are away from him. We talk about him all the time. At the end of this stay, Sarah simply called me Jacob, since she missed him so much. But it is clear that she needs this time with us, and I must say that I love it too!

It is also very good for Joakim and me to get away from the scheduled life we have at home. You can ask me any time of the day, and I know exactly what medication or what treatment or task that has to happen for Jacob. It is good once in a while to not have to draw up a medication, to not have to watch for seizures, to not have to think about if Jacob has yet pooped for the day or not. To simply let the hours flow and to not have to worry if you have forgotten a specific task or medication, and the same time knowing that your boy is in safe hands. To know that Jacob is happy and perfectly fine at home. We know we are extremely fortunate to have Jacob's nurses Gemma and Libby who we trust completely with our boy.

Don't take me wrong. If there would be any, any way that we could start getting away the four of us again, I would do it in a split second. I would load up the two cars once again, and do whatever it takes to make it work. In fact, this summer we tried to take Jacob up to the mountains again for the day. Unfortunately, Jacob started seizing the second we parked the car in the garage in Breckenridge. The mountain get away was no vacation for any of us. It was all about rescue seizure medications, and figuring out how we could keep Jacob safe.

So, we have found our way to take a break. It is not what I would like it to be, but I have started to cherish the special times I get to have with Sarah, with Joakim, and to simply taking a break!

Love,
Maria.