We are revving up for chemo again. I could not sleep, so I have been up since Chris left for work at 4am. I went to bed last night upset and nervous, and it hasn't gone away. We have to wait for the call that a bed is ready, so I am going to try to fill the day with errands to occupy my brain. Unfortunately, I can't do much until the sun comes up.
It is a struggle to stay optimistic sometimes. I try so hard to stay in the present, not worry about what may lie ahead, but the darkness creeps in sometimes. We focus on how well she is doing now, but there are subtle reminders that her progress is still slow.
I don't know if it is a universal thing, but I find that modern parenting in very milestone-focused. We are constantly looking for what physical or developmental milestones our children are hitting, and use it as bragging rights among other parents when they are even slightly ahead of the curve. The October baby message board that I am a member of is overwhelmingly full of moms boasting about their child's latest progress, so eager for their babies to be done with babyhood faster than their neighbors. There are countless calenders and schedules for when babies should hit each mark, week-by-week points that we feel we should match. I have seen this as a teacher, too, as people push their kids to be more physically, emotionally or intellectually advanced than others, and don't understand why other kids can't do what theirs can. This puts a huge amount of pressure on those whose kids don't fit the same schedule.
When your baby isn't following the charts, it is hard. I catch myself feeling disappointed that she is not doing things that other even younger babies are doing. I feel defensive, that I have to explain why she isn't "on track". I watch her every day, looking for signs that she is changing or growing; it can be too much to process. I stopped reading the "Your Baby This Week" lists, since they just don't apply to her. Her progress is awesome for her, and she continues to recover and improve, but there is no chart for "What Your Baby With Brain Cancer Should Do This Week". Even that would vary wildly.
At every appointment, we talk about her development, what new "tricks" she is learning and how she is adapting to her own needs. In the next few weeks, we hope to start regular physical therapy that will help to strengthen and loosen her muscles from weeks of laying in hospital beds. I remind myself to be patient, that we can't do everything in a day. She will do it at her own pace, when it is right for her.