The highs and lows and where we're at now.
I wish I could say that since summer break Ambria has just kept improving and things are looking wonderful. But unfortunately that is not the case.
There was a time that our hopes were soaring high. After all the physical pain and the emotional heartache, one day it all started to go away. It was July 13th - four and a half months from that horrible night of the region dance. Many doctor's visits, different treatments, dietary adjustments, supplements and medications later - Ambria woke up one morning and sent me a message. She asked me to come into the bedroom where she had been sleeping. I rushed in to see what was wrong. She looked at me with a sort of puzzled expression and said, "My headache is gone." I heard what she said, but that didn't keep me from asking, "What?"
"My headache is gone," she repeated. I didn't know what to think. I wrapped my arms around her and just held her in relief and shock. "I wanted to tell you first, but I have to call Justin now!" (Best friend and the person who has been her rock and her biggest cheerleader through all of this. More on him next time).
It was a great day. Her joy was short lived, as her headache returned within an hour or so, but I told her to sleep, and the next time she woke up it was gone again! This pattern continued, and her stretches of time with no pain kept growing, and the painful time periods kept shrinking. She was waking up every day without a headache, and we were able to start really managing the triggers as well. She started being able to get her pain to go down or even away with food. And if she ate during a car ride, most of the time it kept her pain from getting too intense. We had to keep lots of snacks on hand, and she slept a LOT (Anywhere from 11-13 hours a night, and off and on during the day). It was a sometimes tiring way to live, but it was helping and that was all that mattered. She was still unable to do any physical activities without her migraine rushing right back, but she was able to enjoy days without constant, debilitating pain. We thought this was the home stretch, and that soon she would be completely better.
School started and she was still going strong. Her class went on their first camp out of the year and she was able to go, to participate, and to stay the whole time! It meant so much after the crappy way her school year before had ended. But as time went on, the early mornings, the car rides back and forth, the focus on school work all day every day and the lack of opportunities to nap throughout the day started to take their toll. She started missing her early morning Seminary class that she loved so much. Then she started missing school in the mornings because she was just in too much pain to make it to school that early. Then she started missing whole days. We're gradually sliding back to where we were at this time last year. And it sucks. The worst of all of it is seeing her discouragement and sadness return.
Things she's had to give up due to this condition: Soccer, activities with friends, riding the bus for fieldwork at school, participating in fieldwork, attending school regularly with all her peers, her music lessons, her early morning seminary class (we pulled her out and she now has a home-study teacher come to our home and help her), riding in the car with friends or family (I drive her whenever she needs to go somewhere, because I know every little thing that will hurt her head, and am able to make it less painful than other drivers who aren't used to her condition), regular church attendance, sports of all kinds, her active, involved lifestyle. All of these are casualties to the constant pain that has taken over her life for this past year.
As a mother, I can't think of any worse torture than watching your child suffer. Watching her be in physical pain pierces my heart and it literally hurts. Watching her emotional suffering? Her loneliness, discouragement and sadness? THAT tramples my soul. The helplessness I feel is at times absolutely crushing. She is not the girl she was a year ago. Before this pain, she was active, outgoing, fearless, funny and full of confidence and life. Now she is sad, isolated, often times insecure, and the laughter that used to fill her days comes around much less frequently. Now her days are often filled with tears. Sometimes I don't know how she bears it all, and I feel that watching her go through this is more than I can bear myself. I just want to fix her. I want my girl back. And I want her to have her life back.
What her life used to look like:
What it looks like now:
After a short (15 minute) car ride. She couldn't even get out of the car.
After the 25 minute drive to piano lessons
Most of the time when she's not trying to go to school or church.
As I mentioned previously, I know there are families struggling with far greater trials than what we are facing, and I feel guilty for bearing our burden so poorly. But knowing that honestly doesn't make it any easier to watch my beautiful girl struggle.
We aren't giving up, and will continue to pray, and to search out and try new things until we find something that will work and help her get better.
The Boy Who Loved The Girl With The Headache
The Boy Who Loved The Girl With The Headache