by Tomi Jones

When Haley was born I didn’t realize how much life was going to change. First she wasn’t given a chance to even live through the night. We started calling everyone to have them pray for her. She started doing better and better. She went through some test in the hospital which revealed she had a rare syndrome called Wolfe- Hirschhorn syndrome. Haley was missing a piece of the #4 chromosome. We knew she was facing some surgery because of her cleft lip and palate. Little did we know she would need several more as she got older. She has had several eye surgeries and 5 sets of tubes in her ears. She has a feeding tube which required several surgeries because of complications. Watching her come through surgery and taking care of her after the surgery is very hard on her and us. She is such a strong little girl. Having family support and wonderful friends has helped so much.

Unless you experience having a handicapped child it’s really hard to explain how everyday is a milestone and a challenge.  Haley really works hard in her therapy and every goal she meets, she is highly praised for it. Most recent is drinking from a juice box. You just wouldn’t believe how happy we were about something so simple to a lot of people.

I went through a lot of emotions when Haley was born. Why her, why us, anger, pity and sadness. I believe now that we were chosen to take care of one of God’s little angels. She has brought me closer to God and my faith is so much stronger now. I also believe she has helped a lot of people look at life a little different. Be more thankful for the little things. I would hope people would look at their children and know they are blessed to have healthy kids. As I feel blessed God sent her to us.

Our family and friends have supported us and love her so much. Life has changed a lot. I can’t just run and do things like I use to, cause she comes first now.

But you know a lot of times I would rather be home singing and dancing to country music with her than doing anything else in the world. Her smile and laugh are so precious to me. My time with her is everything. She is my whole heart.

Tomi Jones
Haley’s Mom :-)