I ran across this journal entry from a few months ago. It details my trip to Arkansas for one of Aubree's surgeries. You may want to read about Aubree's diagnosis first, just to get the background. (http://thelittlefigs.blogspot.com/2008/04/aubrees-diagnosis-excerpts-from-my.html)
I thought I would share it, even though it is kind of long...
Yesterday I took Aubree to the Hearing and Balance Center for a hearing test (normal) and to meet with the therapist there. This therapist did all kinds of balance and motor skill testing. She had seen Aubree about two or three years ago and remembered her. She also checked her eyes and vestibular. I find myself wanting to forget about the stuff we’ve gone through. Appointments like this one are few and far between now and I think I must suppress many of my emotions about our medical situation. During and after this appointment, I cried. It just evokes many memories and the reality of the situation. I think I cry mostly because I am grateful for our outcomes and humbled by the trials we’ve gone through.
The therapist kept saying how wonderful Aubree looked. Some of the problems that were still present a few years ago have resolved themself. She turned to me at the end of the appointment and told me that Aubree would not have rehabilitated so well if I hadn’t done the things I did for her. That was very nice to hear. The dance lessons, violin lessons, etc. helped her so much. She told Aubree that she was very lucky to have such a good mom. It really made my day. I know deep down, though, that Aubree is doing so well because of two other things. First of all, she is incredibly motivated. I told the therapist how she would come home from second grade absolutely determined to be able to jump rope like the other girls at recess. She would practice for hours, continually trying to get her feet to jump together over that rope. Sure enough, a few weeks later, she had learned how and could keep up with the other kids. It was like that when she wanted to learn to ride her bike. Because balance is such a major issue, we thought the day would never come that she could ride. Last spring she did it! Hours of practice, many falls and scraped elbows later, she learned how to balance that bike. The other reason she is doing so well is because of God’s tender mercy. I know it is the fasting and prayers in Aubree’s behalf that have helped us through all of this. I am grateful for the times that the Lord has prompted me to take her to a certain doctor, or to just sit back and relax and not think about trying to fix things. One of those tender experiences was in November 2005.
This was really a sacred experience for me --probably one of the most life-changing experiences ever. At this point, Aubree’s tumor had mostly shrunk. She was gaining most of her motor-skill function. The only major issue we were still dealing with was her head tilt. The worry with the tilt was how her body, namely her spine, would grow with her head constantly tilted. The doctors warned of asymmetry in her face because of it. I knew she was self-conscious about it and that it could cause a lot of neck pain in the future. She tilts because her brain tells her that it is straight. It is a vestibular, eye, and brain issue.
A whole year before that, I was inspired to change health insurance companies. At that time we had a company that covered everything at 100%. I felt that we should change to a company that covered things at 90%. I know it sounds crazy, but I felt like it was the right thing to do. I felt like that was our year to hit physical therapy hard and really get things fixed. The new company had more flexibility with PT visits, and there was an eye doctor on the plan that I really liked. Well, we switched plans. By October in the year, I was thinking, “What a dumb decision! We didn’t need extra therapy, and the eye doctor was not worth all we had paid out.” (MRI’s aren’t cheap, even at 10%!) I kept wondering why I felt inspired to switch to that insurance.
In October we were meeting with Aubree’s ophthalmologist. During our visit with him, I asked him if there was anything else we could do for the head tilt. (Aubree had four eyes surgeries up to this point, just to straighten her eye muscles.) He looked at me and said, “You have done everything you can for this little girl. It will probably never be fixed and you need to be okay with that.” I started to cry. My life for six years had been all about getting everything fixed and back to normal. I told him, “If this was your child, you would do everything you could, too.” He agreed. Then he sat back and told me how he knew of one doctor that specialized in ocular tilts. This man was Michael Brodsky and had a practice in Little Rock, Arkansas. He had written books and done tons of research on tilts. My doctor told me, however, that he didn’t think anything else could be done and was doubtful that Dr. Brodsky could even fix it. “It is a very complicated problem,” the doctors told me over and over. I took down his name and went home.
When I got home, I decided to look into Dr. Brodsky. It happened that he was on my insurance. (Yes, the one I happened to switch to.) That insurance also covered procedures out of state. I called Brodsky’s office and talked to his secretary. She said she thought he might be able to help Aubree, but she would need to see Dr. Brodsky. Here was my problem… by this point we had open enrollment and had switched back to our other insurance company. I only had the insurance that covered this doctor in Arkansas until the end of December. It was November. I asked the secretary if I could schedule surgery with him before the end of the year. She said his surgery schedule was already double-booked until the end of the year. I found out which days he did surgery (they were Mondays), scheduled an office visit with him for the Friday before, and booked an airline ticket to Little Rock, for me and Aubree.
I feel so lucky that certain people have been in my life at certain times. Kimberly is one of those people. Not only was she there with me when Aubree was in brain surgery back in 1999, but she was with me through the many years of rehabilitation. Her family fasted for Aubree every month for a whole year after the brain surgeries. She has a daughter the same age and can relate in so many ways with what we went through. When Kimberly heard that I was taking Aubree to Little Rock, she called and told me that she and Rachel were going with us. I really felt fine going alone, but what a comfort it gave me to have a friend along. My dad was nice enough to give us sky miles to fly for free. When I called Delta to book, they said there was a $100 charge since the flight was less than two weeks away. I explained what we were going out to do, and they waived the charge. Wow! My neighbor works for a hotel and gave us her discount to stay in a good hotel in Little Rock. In fact, the manager of the hotel was so nice and gave us the $25 per night room rate throughout our whole stay. We felt so blessed that this trip was not going to cost very much.
When we arrived in Little Rock and rented the car, I realized how grateful I was to have Kimberly. I am horrible with directions in an unfamiliar place. It was so nice to have someone there to help me. We had fun hanging out that weekend until they had to go.
Friday came and we went to Dr. Brodsky’s office. He checked Aubree and told us that he thought he could do a surgery to rotate her eyes so her head would try to compensate by being up straight. He felt that it would be fairly successful and would help. He told me that I could get on his surgery schedule for March and come back for the surgery. I told him of our insurance situation. I also said that I was hoping he could do the surgery on Monday. He told me he was already double-booked and that the hospital won’t give him extra surgery time because they were remodeling one of the hospital wings, and surgery space was limited. I looked him in the eyes and said, “Dr. Brodsky, there are many people back home praying for us, and I know it will work out.” He looked at me for a minute and said, “I’ll see what I can do.” That was good enough for me! I met with the secretary who said that no patients had canceled for Monday and it did not look good. I told her I would take my chances and be ready for surgery on Monday morning.
Kimberly had taken the girls out. I walked out of the hospital alone and sobbed. Heavenly Father was answering our prayers and I knew it!
Kimberly and Rachel had to leave on Saturday, so we sadly said our goodbyes. I cried once I got back to the rental and realized I would have to navigate this city all alone. It had been such a comfort to have them there. What great friends!
Sunday morning came. Aubree and I had found a ward a few miles away and decided to go to church. As I walked into the chapel, I had the most amazing peace come over me. We sat down and it felt so good to be “home.” I know that sounds weird, but it felt familiar and very comforting. I bore my testimony during testimony meeting and briefly explained why we were there and how Heavenly Father helps us through challenges. After the meeting, it was amazing how many people came up to us. We had someone offer an extra room in their home for us to stay. Someone else offered a car. The Kuchareks invited us to dinner and we accepted. We even had three or four other dinner invitations. The Relief Society President took down my cell phone number so she could check up on us after the surgery. I asked a few brethren if they would give Aubree a blessing after church, which they did. The thing I love about the church is you have instant friends when you’re away. It was amazing! We had dinner with the Kuchareks that night, and went back to the hotel.
The next morning Aubree could not eat anything because she had to fast for the surgery. No one was quite sure how she was going to fit into the surgery schedule, but she had to be ready. We showed up to the hospital in the afternoon. We had a miracle happen -- another doctor with the same first name as our doctor, put his name on the schedule accidentally, and my doctor got his surgery time. Poor Aubree got so hungry. She just patiently waited in her hospital gown.
When I left for Arkansas, our family was trying to finish up reading the Book of Mormon for President Hinckley’s challenge. When I went to grab some scriptures, I felt impressed to take one of the soft cover Book of Mormons that the missionaries give away. We used that for our scripture reading. Leaving for the hospital, I put it in our bag so we could read if we had time. Once we checked in, we were introduced to a family that had a son with the same kind of brain tumor as Aubree. He was about the age she was when she was diagnosed. He was at the hospital having the same surgery Aubree was, to fix the tilt. We were both thrilled to find each other and talk about our situations. I told them how well Aubree was doing now and to not give up. When I went back into our room, I felt impressed to write my testimony in the Book of Mormon and give it to them. I highlighted my favorite scripture in Mosiah 24:14-15.
“And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions. And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.”
We gave it to the family and continued to wait for Aubree’s surgery. She finally went in for surgery at 7:30 p.m. (she was REALLY hungry by this time). The anesthesiologist offered Aubree a sedative to help her relax before the surgery, but Aubree refused. She said, “Mom, I promise I’ll be good.” When it was time to take her to the end of the hall and hand her off to the doctors, she was so calm and so sweet. She gave me a big hug and said, “I love you, Mom,” as she held back her tears and tried to be brave. It about killed me to watch her walk away.
Her surgery seemed successful and we stayed at the hospital that night. Aubree’s eyes were very sore, but our flight was scheduled for that afternoon. We returned to Dr. Brodsky’s office for our last check up and he tried to convince us to stay another day. Knowing the cost involved with changing our airline tickets, hotel, and rental car, I declined and felt like we needed the support at home.
I took Aubree back to the hotel while I packed up and showered. We got our stuff into the car and drove off, trying to remember which direction the airport was. The airport was in the middle of nowhere and when I was about ready to get on the freeway, I had the impression to pull into the gas station and fill up the car. Now, this sounds so dumb, but keep in mind that there was no other place to fill up by the airport and I was not used to renting cars and had forgotten to fill the tank. I would’ve been paying a huge fee if I had returned without a full tank. Truly, this gas station thought came into my head from nowhere and I know it was just another blessing from above.
As I was driving to the airport, I was really stressing about how to return the rental, check our luggage, and get Aubree into a wheelchair and push her around. I pulled up to the curb and asked an airport person for help. They let me immediately check my luggage there while Aubree waited in the car. Then they sent someone with a wheelchair to meet me at the car rental place. It was such a blessing to have that help!
We made it home and Aubree recovered. The surgery didn’t work as well as we had hoped, as she still has a bit of a tilt. I feel like this trip was mostly for me, though. I think it was God’s way of helping me to know that I did everything I could for my daughter and I could finally put it to rest and go on with my life. Luckily I was able to learn this with relatively little expense. Our 10 percent of the surgery costs, rental car, hotel, etc. cost us $800. What a deal!
That weekend was a life-changing event for me. I learned more about myself and my relationship with Heavenly Father than I have through any other time. I was so proud of the way I navigated a strange city, fought for my daughter’s medical care, and handled everything. I came home from that trip a different person. The day I returned from Arkansas, I gave myself permission to be free of worry and guilt. I had done everything I could to make Aubree’s medical condition as good as it could be and I am now at peace. I don’t constantly worry about what I should be trying to do for her and I have accepted where we are and what will come. I know that there is a God who watches out for us. We may not like the things we deal with in life, but there is no doubt that he has a plan and that we must grow and learn from our challenges. I am grateful for the way that God can speak to us through the Holy Ghost and that we can receive inspiration. I know that the Gospel of Jesus Christ is true and is on the earth again. I am grateful to have it in my life.