My Name is Sarah
Wednesday, September 29, 2010
Tuesday, September 28, 2010
The first thing she saw walking into the buiding was the fountain. She was mesmerized by it. I was fascinated by the turtle statue, perfectly positioned so the water flowed over it and around it, while never getting the turtle wet. It reminded me of the two of us. Me and Sarah that is. I want her to experience all there is to life, yet in a way that she never gets wet. Protected in a way that she never has to suffer or feel pain. But I can't do that. Not really. These darn wisdom teeth prove it.
We entered the waiting room. It was full. With mostly teens and a parent. After all, the removal of wisdom teeth is like a rite of passage in the teenage years. I caught a glimpse of a few staring at us. They eye Sarah up and down and then look at me. After twenty one years, I'm just used to it. Except today. For some reason, I just wanted to yell out, "Stop staring." I'm sure it was because I was nervous. But what was I afraid of? Truthfully, that these teeth are so close to Sarah's airway. Sarah's very damaged airway. If I let myself, I could visualize all sorts of things going wrong. Horribly wrong. Instead, I concentrated on getting all the paper work completed.
Until I turned the sheet over and got to the medical information...
- heart disease - check
- asthma - check
- thyroid issues - check
- airway issues - check
- ever experienced trouble coming out of anthesia - check
- other issues we should be aware of - subglotic stenosis - check
The fear set back in. All of a sudden I felt hot. Burning hot. Then my heart started racing. "Oh c'mon Joyce, we are just talking teeth here," I said to myself. Then they called her name. She hopped up and followed the receptionist back into the treatment room. I quickly scanned the area. My urge was to run. Run fast. The other direction. The counter was cluttered. An oxygen tank was covered with thick plastic. It had not been used in sometime. The floor was not very clean. Old manuals lined a shelf. And then...next to my chair was an IV pump...with a used line and connector still attached. I was horrified.
My nervous state turned to an adrenaline rush. But before I could develop an action plan the doctor came in. He asked Sarah some questions. He put a glove on and examined her mouth. I started to feel panic. C'mon Joyce think. What can I say? I need to get her out of here. He started to ask me a question. I did not immediately hear him. He repeated the question. "Does she take medicine well?" "No. NO. " That's it. My escape clause. "No, she refuses to take medicine orally. She needs an IV line." And then I heard sweet music to my ears, "So sorry, we will not be able to complete this procedure here in the office. She will need to be in the hospital with a full team to support her." "Oh, I could not agree more," I readily replied.
The doctor left the room. Sarah leaned over to me and said she hated the taste of the exam glove in her mouth. I wanted to tell her I hated the taste of the entire experience.As we got on the elevator, I decided to push the button for the top floor. When we got to the bottom, Sarah decided she wanted to do it again. So we road that elevator like we were in an amusement park. Not much different than our life really. Up and down, up and down, up and down. The funny thing though, it's like the rush of a thrill ride. Your voice is hoarse. Your knees are shaking. Yet, you run back for more...
Monday, September 27, 2010
because I was cracking up when we were leaving the store. Do you see that? It is a limo pulling in to get gas at Get Go. Anyway, my mom drove me to CEVEC and went in with me. She told my teacher that she knows what has been going on. My teeth have been killing me. Remember my post a few days ago? I told my mom that when I walk into the freezer at Myers to get my supplies it makes my teeth hurt even more. My teacher did not know I had to go into the cooler once I got to the job site. So we decided I would not go there for a few weeks until my wisdom teeth are removed. Then we drove to the oral surgeons office.
Sunday, September 26, 2010
Then Friday came. Sarah's daily routine is this:
- 9:30 she wakes up
- 9:45 she gets herself dressed
- 10:30 we depart for the store
- 10:50 she counts the money drawer
- 11:00 she goes upstairs to John's office and he feeds her lunch
- 11:30 she comes back down to the store
- 11:45 TJ picks her up at the side door to transport her to her job training program
For some reason on Friday, she did not wake up as usual. I went in a few times and asked her if she was ok. I asked if her teeth hurt. She assured me she was fine. So off we went for the store. When it was time for lunch, TJ (John was away at a meeting - sure love having TJ working with us now) came into the store and said Sarah was laying on the futon and did not want to eat lunch. I ran upstairs to check on her and told her she could stay there for the day. She insisted on going to her job. I handed TJ an empty trash can before he left. You know, just in case.
I went back into the store with a pit in my stomach. Something was just off. Something just did not feel right. The crazy thing is, I have been feeling this way since the beginning of this school year. I continue to question why we are sending her to this program when she has a place of employment. Her very own store. You may remember my post from last spring when I found out that this program was recommending that she go to the AAC (adult activities center) upon her aging out at the end of this year. I saw that as being so limiting. I was angry. Mostly because this was the first I had heard this. Her previous teachers seemed more optimistic. But Sarah wants to walk across the stage for graduation in June. So that is the goal. Our eyes are on that prize.
TJ returned to the office and said Sarah was fine by the time he dropped her off. I felt somewhat relieved. Until a few hours later when I started calling Sarah's cell phone at the time she should be home, and she was not answering. My momma antennae was going haywire. I was just about to ask TJ to go home and check on her, when she finally answered. "Gosh mom, I was eating my snack," I heard in her disgusted voice. "I'm fine mom." "Ok Sarah, see you later. This time I really did breathe a sigh of relief. I went back to working on a sample I am making, in between customers.
When I arrived home, an envelope was waiting for me on the counter...
Saturday, September 25, 2010
Thursday, September 23, 2010
Tuesday, September 21, 2010
haaa...look at this. It is a picture of my teeth. I have to take it with me when I go to meet a different dentist. He has to take my wisdom teeth out. My dad told me that should mean a big pay out from the tooth fairy. Yes!!!!!!!!!
My mom scanned the x-ray so you can see it better. Do you see that little backwards R. Follow that directly to the first wisdom tooth. It is going sideways into my other tooth. That is the one that is killing me. Now if you look really close you can see I only have a half a wisdom tooth on that side up top and no wisdom tooth up top on the other side. Weird.
Monday, September 20, 2010
This has always been one of my favorite photos of Sarah and me. I have been keeping the photo album that looks back twenty years, beside my desk. I try not to look too far ahead of the date we are currently at, so as to capture the memory for that date, as it comes to me. When I turned the page this weekend and saw this photo, I felt a flood of emotions. Oh how I wish we could have frozen that day. Sarah was becoming a healthier baby. She was happy. I was content. Just a momma and her baby. Savoring in the moment of sweet innocence. Oh how I love that little girl.
Wednesday, September 15, 2010
When we got there, my mom called him on his cell phone. He said he could see us, but we couldn't see him. And then he said to look up. Do you see him? All the way at the top of the stadium with the umbrella. For some reason, I thought that was so funny. So I started to laugh.
Sunday, September 12, 2010
Today, I would like you to meet Sister Webb and Sister Park. Only one of them is from Utah. The other one is from Texas. Can you guess which one? They have been sending lots of their friends from the Church to our store. Everyone is so nice. OH and one of those friends just had a baby. Congratulations Holly and family on your new baby girl!!! We are going to try to visit the Church one Sunday. Today, I was not feeling so good though.
My mom read a great post the other day from another one of our blogging friends, Heather. It told her a lot about being Mormon. She said it is good to learn about other faiths.
Saturday, September 11, 2010
We practiced where to place my hands. And then I started to cut.
Wednesday, September 8, 2010
Sunday, September 5, 2010
It had been quite a summer. Multiple trips to the hospital to adjust oxygen settings, to resize the trach cannula, and to inflate and dry out tiny damaged lungs. From that early morning in May when Sarah's permanent trach had been placed, she continued to baffle the doctors. Her outward appearance often looked good, yet blood draws, monitoring machines and nurse vitals suggested otherwise. It was at times discouraging and mentally draining to continue to advocate on her behalf.
We learned quickly that ambulance rides to the nearest emergency room were often met with over zealous residents who wished to perform procedures that were most certain to jeopardize the progress that had been made and maybe even her life itself. Articulating our position was at times not easy. So we started transporting her in the car when emergency struck. At least we knew if we could get to the Cleveland Clinic there would be doctors who knew of her complicated medical history.
I had used every last minute of my earned vacation time on these hospital junkets. So as September arrived, I was so looking forward to the long Labor Day weekend.
We all woke up a bit later than usual. Sarah was doing much better and that felt good. After several months, we were finally getting into a groove. John was staying home with the kids, while I went off to work each morning. It was a new role for both of us and we needed time to figure out how it was to work. There had been a few tense nights for sure. We were no doubt dealing with a difficult set of circumstances and plagued by a few people who were not particularly supportive of the situation. Yet, we were managing.
Thursday, September 2, 2010
Sarah's first Daryl Drive block party...