THE “NEW” NORMAL

It was nice with a break from the hospital. Sarah and I both very much needed some time together. We went to the store, and picked up some cookie dough and made gingerbread cookies last night. Today we made some more cookies and had time to decorate them. We then met up with Joakim for lunch close to the hospital. It’s really hard to not be able to tell Sarah everything that is happening to Jacob and the seriousness of the situation. She knows he’s very sick, she knows he’s intubated, but that’s about it. She thinks it’s weird that he did go from the regular floor back to the ICU. She knows that much about the order of care. We have talked to the child life therapist on the floor, and she has told us that you can’t talk about a possible death to a child, since they don’t know how to compartmentalize that information. In their mind, it will be immediate, and it will always be on their mind. In fact, she will start thinking that not only Jacob will die, but most likely mommy and daddy will be impacted as well.
They are weaning Jacob off the sedation medication today, and the plan is to extubate Jacob tomorrow morning. He’s off the blood pressure medication, and is doing well. He is breathing over the ventilator. I am still really worried about taking out the tube. I will never forget the time he didn’t succeed to breathe on his own after they took out the tube in June.
It’s amazing to me how much I could see of our Jacob yesterday despite him being sedated and so sick. Jacob’s favorite nurse Shannon came to visit. She was talking and singing to him as she always does. He was clearly trying to communicate with her despite the breathing tube and the heavy sedation. He moved his arms, opened his eyes, and attempted several smiles. It tells me that there is still a strong fighter in him.
I have been thinking a lot about the life we live right now, especially living between home and hospital for 7,5 weeks now. It was clear in the care conference that several of them in the room wanted to point out that we can’t live like this forever, and that it’s so hard on all of us. I actually had to interrupt the discussion and point out that it’s not that we have chosen this life, but what choice do we have? We know the alternative is a life without Jacob, and compared to that life – this life is pretty darn good. I still have both my children with me. The four walls of the family are still intact.
I think the other thing people forget is that this is our “new normal”, and has been for a year now. We’re used to drop whatever we have going on to jump in the car and run to the ER, call 911 for an ambulance or sit in the hospital on a Saturday afternoon with half your family. We’re used to have a bag packed ready to go. We’re used to eat dinners on paper plates. We’re used to never sleep through the night. I am used to not see my daughter and husband every day. It works because we all have an understanding of why we’re doing this. It’s not that we’re super parents. It’s simply what our Jacob needs. When Jacob was brought in to the ER this time, Sarah and I went to the cafeteria to pick up a snack. I said to Sarah that it was ok if she felt frustrated to end up here on a Sunday afternoon, and that I felt the same. She said: “ but mom, we always have to take Jacob here when he needs it.” Even Sarah knows the rule of our family too well. I guess I am writing this today, since our “new normal” is getting rocked once more. I never expected my life to look this way raising my two children, but it works for us due to the love we share between the four of us. Due to the alternative being one we all fear. As I write this, I know that our boat can be rocked at any time right now, moving us once again into the painful unknown.

THANKS for all the visits, phone calls, e-mails, meals, presents, and offers to help in any way possible. We’re all a bit overwhelmed right now, so if we're not getting back to you right away, it’s simply because it’s so much going on right now. We’re forever thankful for all your generosity that we’re surrounded by at this time, and it's helping us to get through this time.

Love, Maria.