Friday, June 6, 2014

June Hope Chest-Hope Adapts by Valicia Leary

When Matt & I got married, our dreams were to buy a home, start a family, and live a happy life…..all common things.  
Our first daughter was born on November 27, 2000 six weeks early. We were blessed that even though Elizabeth was premature, she seemed healthy and came home after 7 days in the hospital. She stole my heart immediately and I hoped to be a great mom to my baby girl.
As time went on, Elizabeth began missing milestones, but we were assured she would catch up, she was just premature. I couldn’t wait to celebrate all of her “firsts”. The first smile, first time she rolled over, sat up, and so on. 
At 14 months, she wasn’t catching up as predicted and was diagnosed with Cerebral Palsy due to lack of oxygen shortly before, during, or right after childbirth.
 I kept hoping she would begin to do the things other children were doing. I joined a mommy group for stay-at-home moms which was sometimes a blessing and sometimes heartbreaking. I met some wonderful women who were supportive. 
However, I also saw children Elizabeth’s age doing things she couldn’t do. I remember one Christmas at our group’s party when we shared what we wanted for Christmas. All I wanted was for Elizabeth to start crawling; even though children her age were walking……she was a little over a year old. On December 30th, she began to crawl, a great late Christmas gift! 
Our second daughter was born on August 30, 2002. She truly came out of the womb running! It was quite a difference in their development. I was amazed when she did things so much earlier than Elizabeth. 
Elizabeth took her first steps alone (without holding on to anything) on June 1, 2003 at 2 ½ years of age. Emma wasn’t far behind. Elizabeth began to walk with a walker when she was about 3. She was making progress and I thought that one day she would walk independently. She became quite good with the walker and graduated to crutches. At home, she could walk holding on to the walls or take a few steps on her own between furniture. I began to hope that she would walk on her own. She began Kindergarten using crutches, played baseball, and took ballet & tap classes with her sister. I loved seeing her on stage with her little pink crutches. My hopes were for her to do everything her sister could do. 

At the end of second grade, Elizabeth was on a field trip and the floor was wet and she fell hard. She didn’t hurt herself physically, but she hurt her confidence. Previously when she’d fall, we’d tell her to get up and she did. This time was different. It seemed like walking was not getting easier for her, but a little harder. 
People with cerebral palsy have issues with muscle spasticity and her muscles were not keeping up with the growth of her legs. They were getting tighter, so she was walking in a crouched position which was putting pressure on her knees and hips, causing her pain. It was very hard for me to see her regress. It was a painful decision, but for her safety, we decided she would begin using a wheelchair in school or for long distances.  She was able to use one donated to the clinic where she goes for therapy, and where I work. Almost a year later, we ordered a wheelchair for her.
 My hopes for her were changing. I realized that maybe I needed to stop hoping for her to walk independently, but instead hope for her to have as much independence as possible.  She continued to walk at home with her crutches and short distances, but was struggling more & more. 
At one of her appointments at Shriner’s Hospital in January of 2012, Elizabeth’s doctor told me that he felt she needed to have surgery on her right hip. It never formed correctly and was probably causing the pain she felt when she walked. He thought if we didn’t correct it, she may eventually struggle to walk too much, and then she may not walk at all. My husband and I decided she should have the surgery and Elizabeth agreed. We felt this was the only option to keep her as mobile as possible.
 In July, Elizabeth had a pelvic and femoral osteotomy. They cut the top of her femur and pelvic bone then used pins to put her hip into place where it should be. It was the longest day of my life waiting for her surgery to be finished. Everything went well and we were able to come home the next week. For the next 5 weeks, she wore a brace from her chest down her right leg to keep her hip in place. She slept in our family room because we couldn’t get her up the steps to her bed room. She wasn’t allowed to bear weight on her leg for a few months. 
On November 2, 2012 Elizabeth took her first steps again in physical therapy…..something I had hoped for since her surgery.
We hope both our daughters have the same opportunities and get to experience the same things. Sometimes I’m afraid Emma is missing out on things because places are not handicapped accessible or not easy for Elizabeth to do because she is in a wheelchair. We are careful to plan trips around both of their interests and places we can access with Elizabeth’s wheelchair. 

As I cleaned Elizabeth’s wheelchair for the middle school dance this year, I kept thinking how thankful I am that Elizabeth and Emma can experience the same opportunities in life. Instead of getting what I originally hoped for, I got so much more. Elizabeth has taught me about determination, hope, and faith. 

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