I wrote this about two weeks into his stay.
For the most part I feel like I have my feet back under me. We have a routine now. One of us visits Noah at noon (usually me), one of us at 5:30pm (usually Rich). It depends on the day and if Kiel is at home or school.
I don't have to get Noah on the school bus in the morning
I shower and get ready for work in a quiet house, since Kiel and Rich have already left for the day. There is no yelling downstairs to remind Noah to eat his breakfast or put on his socks then his shoes. No running down stairs to find Noah waiting for the bus in front of the door...with it closed so he can't see if the bus is there or not. The quiet is more disturbing than it is peaceful.
I get to work. Late. But with no excuse right now other than I'm not a morning person and the motivation to get out of bed is not there.
I check in with Rich to see if he talked to anyone at the hospital or to update him on my call with Noah. We confirm who is seeing him at noon, and who is going in the evening. Who is picking up food for him or what we have at home already.
I missed almost two weeks of work so now I'm trying to catch up. Projects don't stop just because I feel like our life is on hold. I'm concentrating better than I did two weeks ago, but I still find myself drifting off into worry at random times throughout the day. I have no choice but to commit to meetings and deadlines even though right now I find it difficult to see the future at all - be it next week or next month.
I'm very fortunate that my coworkers and my boss have been supportive. One of my coworkers completely took over the final piece of a project I had due earlier this week. My boss has stepped up and is taking a bigger role in another project I'm leading. I feel guilty. In the past I've managed my commitments at work, even when life with Noah was a struggle.
It's not a secret where Noah is right now, but most people at work don't know outside of the team I work with. It's not something that comes up naturally in conversation, although I have been known to just blurt it out.
At 11:45am I leave to visit Noah. Most days I'm slipping out of a meeting early, or trying to rush a conference call so I don't miss any time with Noah. If he's having a good day he might be at the gym, and not notice that I'm not there right at noon. If he isn't at the gym sometimes he is waiting for me. Even if he isn't I'm guaranteed a huge hug when I do arrive, which is the first time I've felt whole all day.
Most days I'm the only parent there visiting at that time. I'm lucky that the hospital is so close to both my office and our home. Some of the children receive no visitors. I don't know if it is because they do not have families or their families are too far away. The other day I watched a child leave dragging her belongings with her in a black trash bag. It made me sad. I don't know for sure, but I don't think she was leaving with a family member.
The noon visit is almost always our best visit of the two. It makes a difference when we are the only ones in the small classroom that is where families are allowed to visit. When it is just the two of us, after we talk for a bit I read to him while he eats lunch. Then he curls into me as best as he can since we are sitting in plastic desk chairs. Some days he falls asleep. The new medication combined with the lack of sleep at night makes him tired. Some days he looks drugged, especially the first day the dose is increased. Before that his body was fast. He was up and down during my visit. The only thing keeping him in the room was my reading to him. He constantly moved in his chair, or paced, sometimes climbing on the desks until I made him get down. He wanted to be there though, and I knew that listening to my voice reading the story was keeping him connected to me in a way that just talking with him could not. Perhaps not having to respond removed some of the pressure on him.
After an hour I have to leave. Visiting time is over and I have to go back to work.
Since I don't have to get home in time for the afternoon school bus I can stay until almost 5pm. I've turned off the alarm on my phone that used to go off at 2:45pm as a reminder that I need to leave by 3pm. I stay as late as I can to make up for my time away at noon, and to try to catch up. It isn't unusual for me to bring work home with me to finish up after Noah's homework is done, or after the boys are in bed. Right now though I don't have the energy to work in the evening.
I get home in time for Rich to drop off Kiel and head to the hospital for his visit. Or, if I'm visiting I go directly to see Noah.
Whoever is at home feeds Kiel dinner. We have only had one real meal at home with Kiel in the last three weeks, and that was because a good friend came to watch Kiel so both Rich and I could visit Noah together. She also brought us dinner! I've learned you don't get casseroles when your child is just
It's 7pm by the time Rich and I are both home. Kiel has a lot more freedom right now since he can handle a less structured schedule than Noah can. We've moved his bedtime to 8pm instead of 7:30pm. We take turns putting him to bed. One of us snuggles with him until he is asleep. Sometimes when it is my turn Rich comes up soon after and goes to sleep himself. Most times when it is Rich putting him to bed he falls asleep with him.
Noah usually calls between 8 and 8:30pm. We both talk with him, and most nights he and Kiel talk too. Some nights, like tonight, the call is good. Other nights he cries wanting to come home. Some nights he doesn't sound completely connected to the world.
I spend most evenings by myself. Rich deals with the stress by going to bed early. I'm tired, but can't sleep. I watch TV, or check in on Facebook. Sometimes, like tonight, I try to write a blog post. I flit between activities. I don't have the emotional energy to fully concentrate on one thing, or to do anything but sit on the couch. The kitchen is dirty and I don't really care.
I force myself to bed around midnight. It's hard to see Noah's empty bedroom. I've never been a good sleeper and it is even harder to fall asleep now. If it's a good night I'm asleep before 2am. My stress shows up in my dreams.
The alarm goes off, far too early considering my lack of sleep. Then I do it all again.