Saturday, August 14, 2010


In the middle of getting the kids ready for school with loads of paperwork to fill out for Jacob, meeting to prepare with his teachers and therapists, school supplies for Sarah, new school bag and lunch box, new sneakers - and the list goes on - Sarah said to me: "mom, I have had the best summer ever".
It made me really happy, it made my eyes tear up a bit, since we have had a really great couple of months together. I didn't really know what to say more than: "I had my best summer too."
"But mom, you're turning 40, did you have to wait this long for your best summer?"
Good question. Do you have to wait 40 years for your best summer? It got us talking about my summers as a child in Sweden. About me playing with my best friends from early morning til the street lights were turned on. That was the signal to go back home. It seems now that we had quite a lot of freedom in where we were during the day as long as we showed up for meals and bed time. We were playing barbie shows for each other, we were playing outdoor games, we were going to the candy store, we were going to the lake for swims, we were listening to ABBA. They were pretty good summers. I also remember our annual family vacations to summer cottages in Finland and France, and how it was pretty good to have a sister after all. The day trips we did, and swimming in the Atlantic ocean or a little lake in Finland.
So, maybe this wasn't my best summer, but sure one of the better ones. Maybe the best one as an adult. As you live in the moment, you realize that there are very little things you truly need to mark your summer the "best one" - it's not that big extravaganza vacation, it's not if the sun shines or the rain is pouring down - it's the fact that Sarah can't stop smiling, and that our little guy has "only" spent 4 days in the hospital, and has spent more time in the pool than I ever thought was possible for him again - it's family time and spending time with good friends. Very simple things when you learn to live in the moment.
Sarah goes back to school on Wednesday, and she is so excited. She knows all the girls in the class this year, and is really happy to go into the new school year with many friends in her class. She knows her new teacher, and likes her already. She likes her new school bag :-
I haven't written much about Jacob lately, since we're more in a routine right now. We are for the first time since December working on decreasing Jacob's seizure medications. Yes, decreasing, not increasing! The suspicion is that some of Jacob's meds are a bit too high, and we would see more interaction and smiles, if we could get the doses down to a manageable level without breakthrough seizures. It takes weeks, and we're extra alert as we take a dose down to make sure Jacob doesn't have increased seizures. In that case, we have to stop. So far, so good. We're on our second decrease, and will go ahead with one more this coming week, if the boss still says yes. We will then regroup with his neurologist again for further decreases.
Jacob is also put on a strict diet, since he has continued to gain weight despite us taking down his calories. The strict diet doesn't bother Jacob, but his protein level is low. We need therefore to add amino acid to his feeds, but no one wants to pay or deliver the d--n pulver to us! We have lost weeks in finding a supplier and someone to pay for the expensive supplement. After weeks of back-and-forth between suppliers, manufacturers, and Jacob's doctor - we finally can get it delivered to us, but at our own expense! It's another $800 medication we're adding to Jacob's list of expensive supplements that no one wants to pay for despite the words "medical necessity".
Jacob has started to be more alert lately, and he also tries to vocalize more again. When you're with him alone and talking to him, you see how he forms his mouth to respond to you, sometimes we get a vocalization, still most times not. But it's still a little improvement we're happy about. Jacob is also out for walks and swims daily, and THAT we're happy about. Jacob starts school end of August. We won't let him go to school over the winter, but hoping that he can go to school during the fall that is typically still warm and not filled with respiratory issues and illnesses in Colorado.
When the school year starts it sort of marks the ending of the summer, but for a Swedish soul, it's still summer weather for another month or two here, so we will keep up the summer spirit despite the school routine being back again!
Love, Maria.
P.S. Check out some new pictures from Breckenridge, and Addison playing with Jacob at home!

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