Friday, January 8, 2010


My lady who does my eyebrows (way too seldom) asked me that question yesterday as I was laying on a comfortable warm bed having her wax my eyebrows. Yes, the waxing does hurt! She had gotten caught up on our last couple of months of emergencies and almost loosing Jacob on December 8th due to him fasting before the keto diet, having pneumonia, or the actual diet itself, or a combination of the three. We will probably never know.

I thought it was a good question as I was walking out her door. I had squeezed in some time to do something for myself – getting my eyebrows done. I then realized that I was very close to Joakim’s work, so rather than going to the bank I decided to see if he had time for a coffee in the middle of the day. It was so nice to just chat at Starbuck’s unexpectedly in the middle of his working day.

After we got home from the hospital this last round, it was hard to move forward. We left the hospital with this “hospice doom” over us, and really not knowing what cards we have for us in our future. It didn’t make the picture better that Jacob ended up in the ICU 9 days later again. With Christmas behind us, it did feel that everybody was moving ahead with their new year, but we’re sort of waiting for the worst thing to happen to us with no time table or compass. Not a good start to 2010.

Thank god I have always had a positive outlook. It does come in handy with Jacob’s questionable future. I realized that I need to have things to look forward to as well, big or small. I am really excited about my dad visiting soon. I am also excited to see the progress of the seizure project that I work on with Children’s hospital, and possibly going to Albuquerque with the whole team last week of January. Yes, I do have a refundable ticket in case Jacob is sick. I am also really excited about the family leadership training I am starting mid month as well. I am hoping that can open more doors for me within the special needs’ community. So, without much thought I could come up with three things for the month of January that I am really looking forward to.

I am also starting to look forward to March, even if it does feel a bit scary to think that far in advance. I remember a life when I had no problem planning a year or more out. That’s simply not happening right now. But, in March, Sarah has her spring break and we have a week planned up in Breckenridge. We already know that Jacob can’t come, but hoping to at least split the week with Sarah, and maybe with some nursing care we could even get to have a day or two together for some skiing.

Secondly, the Bal Swan ball is on March 6th. It’s the annual black tie event in Broomfield. Jacob is the featured kid this year, and we’re working on the video right now. We just did a lot of shooting in our house yesterday. We’re doing the interview part later in January, and then I do have to start thinking about what to say that night…If you live in Denver area, check it out! For more information to the ball, please go to:

It would be great to have friends with us that evening, and it will sure be a really fun evening! If you want to sign up, you can either do it from the website above or just let me know, and I can give or send you a registration card.

And don’t take me wrong, being all home again is of course also wonderful. Jacob is getting over his rhino virus. He’s staying put at home until the winter is over, only leaving the house for doctor’s appointments. No other excursions at this time.

Seizure control is a constant factor in our home. We took his Ativan dose down this week, and Jacob is so much more alert and smiley in the afternoon, but he has also had a little bit more seizures in the evenings. Always a balancing act. Today, he started out his day seizing, and is in deep sleep, so we’ll see what the day brings. One day at a time.

This post got way longer than I thought, but I wanted to end it with a question for you all – what are you doing for yourself today? I think it’s a valid question to ask yourself each day.

Love, Maria.

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