Today driving to work I felt so tired and a bit defeated. Not for any real reason, just so many things going on. I was alone in my van and just started crying. I can't explain why, I just feel worn out by so many things right now. Friday night I was at stat care for my wrist. I fell a few weeks ago and it has been getting worse ever since. They gave me a silly brace that I could do nothing in, so off it came. On Saturday, I twisted my wrist and heard and felt this awful snap. Then it started feeling better. It is still swore but better. Then Tim hurt his back. He is having a rough time with it. So as I pulled in to work, I wiped off the tears and just told myself to get over it. Little did I know this day would just throw some more craziness my way.
Brooke's new collar
I got a call after lunch from Dr. B. He received the report from the urologist and he wanted to schedule surgery. He told me he unfortunately did not have this week open. Umm...good!? But he had the 30th, 31st and April 7th. I commented this was so soon. Then he reminded me we have been waiting for this surgery for 2 years. I called the medical secretary and left her message requesting the 7th. Two weeks away! My stomach is full of knots and I keep thinking I just can't do this again. I know this surgery is less invasive than brain surgery, but it is still surgery and my baby girl.
I leave work and am trying to wrap my mind around what I need to accomplish in 2 weeks. I get a phone call from the PT from the school district. If you work with the school district, I am sorry ahead of time. I am trying to be gracious about this, but it really has me frustrated. They denied Brooke for PT because she is in a normal range. But her NS says she needs PT on her neck. When I first went to them, I just asked if they could show me techniques to help Brooke. They told me they could not help. So after we came back from NY I called them again. The PT said that they only provided care to enhance a school child's learning. She then told me that even a private PT would probably not see Brooke on a long term basis. They would just give me exercises. That is what I wanted all along. Now, I have to find a private PT and pay for it. We do not have the resources for this. I just do not understand why the school PT can not see her for a few times and give me the exercises. This is another place where Chiari stinks! People are just not educated on it and think PT and OT do not help. And yet I read all the time that they do help. Brooke struggles with so many sensory issues and was also told no for OT. So here I am trying to be a PT and an OT for her. And I am sure after spinal surgery even new things will come up.
Chan wanted his pic taken too!
I pick the kids up and we head over to pick up Brooke's collar. Of course she is excited until she sees the thing. She knows what they look like because her friend wears one. But she started crying and screaming the thing is choking her. Sensory issues here, she will not even wear turtlenecks because she thinks they are choking her. God Bless the people at Hanger because they were very patient with her. They left for a little while to adjust the collar. Brooke was sobbing saying "I just want to go home!" over and over. I kept telling her she was the bravest girl and that Dr B knew she could do this. I sat there listening to her and thinking of the upcoming surgery. This poor girl has had a rough year! When they came back in, Brooke put on her Brave Face. She put on the collar. We left and she was even excited to wear it in the car. When we came home, we bedazzled that collar with stickers. She wore it all evening, even when she did not need to.
Tonight, I explained to her and Aidan about the surgery. Brooke just said, "Will it be as long as my last surgery?" I told her no, and then said but you were asleep, how do you know it was long? "I just do mommy, I remember." When I think I do not have the strength to keep it together, I just think about her! Brooke is my inspiration! Ah, who needs peace and relaxation. I will get plenty of that in heaven!