Sunday, June 26, 2011


This journal is mainly about Jacob, but reality is that we're all connected. Tonight, I am going to write about Sarah.

When Jacob has a rough week, Sarah has a rough week. We all do. This past week was especially rough on her. I am wondering if age has to do with it. She has matured, she understands even more. She knows her brother won't be with her forever. How do you even get your arms around that at age 8? Sarah knows when Jacob seizes, she knows when she needs to support his chin for breathing. She knows when mommy needs the phone to call 911.

This past week, we had to call 911 twice. Sarah knows to unlock the door when she hears the sirens down the street. She knows to give room to 6-8 big guys running into our house with lots of equipment, radios on, and asking lots of questions. I am sure she can interpret every nuance in my voice as I am talking to them. I am sure she is picking up on all my medical lingo, and the level of worry in my voice.

The other night, we couldn't get a hold of Joakim in time for the ambulance to leave with Jacob. Sarah ran up to her room as the commotion started again, she didn't want to be part of it. Thank god our nurse could stay with Sarah, but I was wondering how worried she was when I ran out of the house, leaving her behind.

Sarah was in camp this past week. A good thing with all the time spent at Children's Hospital, and watching for seizures at home, but camp can also be scary. It is not a familiar environment, there are new things to face each day, things that would normally be fun if you're 100%, but maybe not so fun when you're feeling that your life is falling apart.

Sarah cried many times this past week. Sarah couldn't eat. Sarah had stomach aches and headaches. Sarah couldn't sleep in her own bed. Sarah in fact didn't sleep much at all. Sarah got quiet. Sarah looked unhappy. Sarah's world was shaken. She was worried sick about her brother. She turned down sleepovers and play dates to simply be home.

So to have had 2 seizure free days behind us with no ambulances or us counting minutes to give Jacob medications is a blessing. Yesterday, we all sat in the backyard having Sarah's home made trail mix, and drinking margaritas (and lemonade for Sarah), we all commented on how nice this was. Tonight, we could repeat the same dinner routine again! Two days in a row! Jacob was with us, and was not seizing!

The other thing that helped our little girl through the past week were two true friends she did camp with. On Friday night when I was driving home with Sarah, she told me that they both "get it". They both know how it is to have someone sick that you love, and that you simply don't feel like having a sleepover - and it is perfectly ok. Wow! 8-9 year old girls talking about a brother with a mitochondrial disorder, another brother with meningitis, a father loosing a leg in a motorcycle accident. I am always wondering if it is coincidence or faith that bring these kids together.

Sarah also told me that the hardest times with Jacob is when he is in between hospital and home, when we never know when he needs to go in, and when we need to call 911. "I like the best when Jacob is home, but I am also ok when he is in the hospital. I know no one likes the hospital, but I sort of like it. I get to hang out with Jacob, watch as much TV as I want to, and noone asks me to do homework!"

We changed Jacob's medication times around yesterday, and it might have done the trick this time. Jacob is getting tested for C-Dif in the morning, since this is a common infection for someone who has been on antibiotics for as long as Jacob. Typically the poop is very smelly with C-Dif, which is not the case for Jacob, but we do want to rule it out in case it is the cause of the seizures.

Hoping for more peace in our home.

Much love,


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