Friday, December 5, 2014


I have been writing about our community always coming together for Jacob and us. Finding pumpkin pies on our door step, home made soup ready to heat up in the hospital microwave, goodies and gifts, phone calls and messages at all hours of the day, hugs and cheers.

Joakim and I take turns sleeping in the hospital. When I come home to sleep after about 48 hours in the hospital, there is always  a long list of things to do. Grocery shopping, laundry, dishes, bills to pay, volleyball practices etc. Despite the busyness, being home for the night is a break from the beeping monitors and being "on" as Jacob's advocate around the clock. A lot of times, the best part is to not talk about the hospital and just watch a movie or TV show with Sarah on the couch.

When both Sarah and I are stressed and worried, we snap at each other. It is often something completely ridiculous, but we know how to push each other's buttons. I had been stuck in traffic for over an hour to get home in time for Sarah. Once again, I had to call her to go through the garage since I wouldn't be home in time for her. Two too young children had passed away in the PICU overnight. My favorite PICU nurse decided to have Jacob watch cartoons at 4 am, and didn't know how to start Netflix on his IPad (so woke me up to do it). I was exhausted. Sarah was home, and definitely had an attitude. I wasn't up for an attitude. I wanted my girl to be in a good mode and give me the relief I needed. I know, too much to ask from a twelve years old girl. We argued, and the argument went from a silly thing to tears. We started talking about Jacob, and how sick he had been this time. And in the middle of an ugly cry, I realized how much our girl is carrying around each day. It was like a big punch straight into my tummy. A punch that leaves you without air. I had somehow thought Sarah was doing ok between school, friends and volleyball. Too tired and wrapped up in my own worries to see behind the surface. She was surviving, and was going through the motions of her day, but carrying the weight of her sick brother all on her own. This is where I realized that our community is not always reaching our girl. You know who you all are who are opening your hearts and homes for our girl, and we are forever grateful to you. But at age twelve it is not always easy to struck up a conversation about your sick brother with your friends. Sarah is very lucky to have really good friends, but they are twelve. Sarah keeps her thoughts to herself. She carries the weight on her shoulders. After our good ugly cry, Sarah went to volleyball practice. It was a good practice for her, and after that we had our mom daughter time on the couch and I got to visit the middle school world with my goofy warm hearted girl. We laughed and found each other. Those are the best times.

It did remind me of a blog post I wrote about our girl in 2009 when Jacob was really sick and his future was uncertain:

Jacob gets a lot of attention, and on any given day his care to get through the day is tenfold what Sarah requires. The love for them is always equal. And as many special needs parents do, we try to make it up to the siblings once we're home again. We give her more alone time, more attention. It was really good to be home in time for Sarah's holiday break. It was a good Thanksgiving for us all. A time to reconnect and to catch up on life and love.

December has always been my favorite month with all things Christmas. Sarah is sharing that with me, and this weekend we are planning on getting going on some Christmas baking, Christmas parties, and yes a Swedish Christmas concert!

Love, Maria.

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