This is Amber, Jennifer and me at a party my family surprised me with on my 50th birthday in February.
I can't sleep. I sit here at 1:30 a.m. I think so many thoughts of my oldest daughter Amber. Amber went to Heaven on July 24. It has been a long 11 weeks and a few days since her passing. It has been so hard yet I do find comfort that we will meet again one day!
Here's how it all began. Amber was born healthy with long beautiful dark hair on August 30, 1979. She was beautiful! She had such long hair! As an infant people would stop us and comment on her hair. She giggled all the time and was the love of our life along with Jennifer her younger sister.
Around the age of 8 I began to notice she walked a little different and something was not quite right. She had always struggled to jump rope like other kids her age. We took her to the doctor and were told she was fine. Time went on and I began to notice she began falling and her gait was not as good as it had been. Her little hands would tremor when she held a glass to drink. It was a mother's instinct that something was wrong. This was when she was 9 years old. After numerous tests and doctor's visits and months of waiting she was misdiagnosed several times. Finally by the age of 10 in 1989 after seeing neurologists at UAB in Birmingham we were told devastating news that she had a rare form of muscular dystrophy called Friedreich's Ataxia. It is a degenerative disease that she inherited from both me and my husband. As she grew older things began to worsen. She had surgery for scoliosis and a tendon release in both legs. By the age of 12 we had to purchase a wheelchair. Her falls were so frequent and she had terrible bruises from falling. I thought at the time purchasing a wheelchair would be the hardest thing I would have to do in my life. Oh I was wrong!
Amber adjusted to her "new life" and attended regular school, graduated and attended two years of college. She was such an inspiration to so many people. She always had a smile on her face! She loved life and of course she was spoiled rotten by me, her dad and her sister Jennifer. During her senior year of high school she was voted "Most Likely to be Remembered". She went on to a local community college and her conditioned slowly continued to worsen. Her balance was not as good and she became frustrated with not being able to use her hands as well. We all adjusted to whatever circumstances came our way. We prayed that one day there would be a cure. I often wondered why God gave us this "special child". I believe God chose us to be her parents because he knew she would be well taken care of by us.
During the time she was diagnosed my husband was laid off from his job and I went back to work. I worked my schedule to fit my daughter's needs. I always asked God to let me know the right time to quit my job and stay at home with Amber. After ten years I quit my job in 2000 to stay at home full time with Amber. Our youngest daughter, Jennifer had gone away to college and I knew the timing was right. Not financially, but in my heart I knew Amber needed me to be at home with her. I had NO regrets that I had made the right decision. She loved me being at home with her and I loved being at home with her. I took up quilting as a hobby and she often helped me make choices of fabrics I would use in a quilt. She cross-stitched and knitted before her hands became worse and I will treasure everything she ever made. Later we began to scrapbook together. She told me where to position each picture and how she wanted it placed. We had to do it her way! She was so creative!
In May of 2001 I had minor surgery that turned into a disaster. (That's another story) I spent a month in the hospital, three weeks in ICU and Amber was there for EVERY visit with her dad. I was a "miracle" to have survived with what had happened to me. The doctors did not give me much hope of living. But by God's grace he knew my family needed me, especially Amber and I survived!
Over the last few years Amber's heart, vision and hearing was slowly being affected by the muscular dystrophy. She was fitted for hearing aids and it was like a new world to her again. Her heart medications were changed last fall and everything appeared to be under control. She was being monitored regularly. We had begun a major renovation and addition to our home to better accommodate Amber's needs (a larger bedroom for her and a roll-in shower with a new shower chair she loved!) She only used it 7 months before she passed away suddenly.
She wasn't feeling the greatest the week she passed away but that was nothing abnormal for her. Her heart medications had side affects and she like all of us had bad days. Suddenly on the evening of July 23, she felt worse and she thought she had a urinary tract infection. Later that evening she was very pale and I could not get a blood pressure. We immediately rushed to the ER. Early the next morning around 1 a.m. she was found to be diabetic. We had no idea. I thought I kept check on everything! She was moved to ICU, monitored with an insulin drip and was doing great! She was going to be moved to a regular room, when suddenly her heart became worse, her oxygen levels were dropping and she had to be put on a ventilator.
We knew this was not good. Immediately I called my family to be with us. The doctors and nurses tried everything, but God was calling her home. She went to Heaven around 11 p.m. that night surrounded with her family and friends. At one time there were 40 people with us. It was so comforting to have friends and family with us.
I was in complete shock! One minute she was asking me when she could come home. She was bored (she probably wanted to get back on Facebook). She loved being at the computer. She had reconnected with old friends from high school on Facebook and had started farming on Facebook and suddenly she was no longer with us. She began reading Christian fiction books when I was hospitalized in 2000 and she spent many hours at the hospital reading. As I write this her book she had been reading is still bookmarked on the last page she read in her bedroom. She was looking forward to the "Big 30" birthday and had purchased her scrapbook and stickers so we could scrapbook together after the big 30th birthday party we were planning. (That will be another post.)
We knew Amber's life expectancy would be shortened and we tried to do everything she wanted to do. Our lives centered on her needs and everything she wanted. We were with her 24/7.
And then suddenly it was the worst thing imaginable! A parent should not have to bury their children. I often wondered how other parents survived losing a child. Now I know. We know she is walking the streets of gold in Heaven and she is an angel watching over us, but it is so hard walking by her bedroom and she is not there watching the Game Show Network, reading and burning her Yankee candles! She always had a yummy smelling candle burning in her room. Our hearts are broken and we will never be the same. God is good and Amber will meet us again one day. One thing I do know she is an Angel.
I will post later about Jennifer speaking at her funeral and what Amber's best friend did at the service.
And also what I am doing with those 30th Birthday items.
Thanks for reading. I hope Amber has touched your heart as she has ours and many others.