I can't believe I have been here so infrequently this year. Despite my lacking of posting I have wanted to be here ... but ... to be honest there are a great deal of buts and I really can't go into all of them. I will say that I think I needed a break from talking (I know - hard to believe) ... from telling our story (it becomes overwhelming at times). For once I needed silence. I needed a chance to regroup and start again. I needed to just be in the moment for a change - not three steps ahead.
I think it has worked.
I find myself more willing to talk lately. I need the silence less - but I still need it. I still need a few minutes each day where I can just sit quietly. I have learned to just be in the moment without giving up planning for the really big stuff. I don't have to plan every minute of every day any more. I guess I am learning how to let go while holding on to what is important.
Being here is important. It makes sense. It is a place for me to balance the need to talk and the need for silence. It just took me awhile to get back here.
The next two days are crazy busy, but that's O.K. we have done crazy busy before. Wednesday is the day I am struggling with. We had Nick's well child visit a few weeks ago. We moved Nick a little early to Dr. Fischelberg, the male pediatrician in the practice. One of the issues we wanted to address with him is Nick's weight. We have held his weight steady for the past year, he has improved his eating habits over the last two years (he no longer eats fried foods of any kind on a regular basis; he has started to eat more fruits and vegetables and snacking is at a minimum); he exercises regularly and still he struggles with his weight. But what we have noticed through all of this is that Nick's weight is only concentrated from his face to his abdomen. His legs and his arms are thin. The pediatrician noticed this odd distribution as well.
So on Wednesday we go to see an Endocrinologist at Children's. It makes sense to go to the Endocrinologist - I have wanted to make the appointment for awhile but just kept putting it off. It's not just Nick's weight distribution that is problematic he has other issues as well. He has never been able to regulate his temperature. We used to joke that Nick could only sweat through his feet. We were hiking last Sunday and the temperature maybe hit 60 by the time we got to the park. Nick needed an ice pack to bring down the overheating he was experiencing. No one else had any problems. He was in shorts and a t-shirt and still needed an ice pack - something isn't right.
I know what the doctors will be ruling out and it scares me ... it scares me to the point where I feel like I can't deal with one more thing. I know that fear, I have lived with it for years now, it ebbs and flows and then explodes for things like brain surgery. But I have always been able to control it ... more or less. I don't feel like I can control it right now.
I used to be able to do medical research for days on end if I needed to. I can't. I can get maybe 30 minutes in before I am sick to my stomach and want to throw up. I can't find a way to push back the fear right now. Maybe that is what happens after you get through a traumatic experience like brain surgery with a child. The monsters aren't just possibilities hovering somewhere in the back of your mind. You know they are real, you know they exist and you know that your child could be next.
I hate being afraid. I hate not being strong all the time. I hate the urge I have to just sit down and cry and I hate that I can't give into that urge.
I need to prepare for this appointment. I have two days left and I am no where near ready to tell our story all over again. I am not ready to make sure yet another doctor "gets it" before he makes a decision about our little boy. But by 9:30 Wednesday morning I will be ready to talk again and to listen and to do what needs to be done. Maybe this nagging feeling in my gut will be wrong. Maybe it won't be what the pediatrician wants us to rule out. Maybe I will be able to write on Wednesday afternoon that I was just overreacting. Maybe ... and here's to maybe.