Faith's Mom's Blog

Most of my blog posts up to this point have been about Faith and our journey with her cerebral palsy and all the special needs that comes along with that diagnosis. There is another reason for this blog, though, and that is to bring awareness to congenital heart defects (CHD). It's also to give God glory for all He has done in my life since being born with double outlet right ventricle (DORV). With this condition, both of the main arteries of my heart were attached to my right ventricle. My left ventricle was and still is nonfunctioning.  Due to my defect, I needed open heart surgery at 6 months of age. I had another surgery at the age of 4 and then another, called the Fontan , in 1984 when I was 10. At the end of May in 1999, I had another open-heart surgery (which was hopefully my last!) At 25, I was really quite stunned to be going through another heart surgery. I knew I was sick and getting sicker, but I was disillusioned to think that some different meds would do the tri...

Even though Faith is still suffering with her cold and was up at 5:00 this morning, we were still bound and determined to get her to her last day of school.  And...   WE DID IT!!  There are so many special and wonderful that were brought into our lives during her kindergarten year. Her teacher, her instructional aide, the therapists who worked with her and her special needs coordinator/teacher. Not to mention the principal of the school, the receptionists, her music teacher and her classmates.  They, along with the rest of the staff at her school have played an important role not only in her education but her progression and maturity as well. We are so very thankful for these wonderful people who have helped Faith throughout the year. It was the perfect ending to a great school year when her classmates yelled after her, "Bye Faith! Love you!"

I've been wanting to get this post up since Friday night when Faith reached an exciting milestone. Unfortunately, however, Faith ended up getting sick. Besides being busy taking care of her, I have also been sleep-deprived as neither of us has slept well all weekend. This morning, I kept Faith home from school, and we are both exhausted. I decided to try and post this anyway. So, if it doesn't make sense, you'll know why! Friday was a busy day for us. I went with Faith to school so that we could meet her new instructional aide who will be working with her during summer school. We showed her Faith's feeding pump and how she would be connecting and disconnecting Faith's feeding tube to her Mic-Key button. We also showed her how to lift Faith and get her in and out of her chair properly. After being at the school for a couple of hours, I went home for lunch then went back to get her so that she could go bowling with all of the other kindergartners. Faith's team...

This morning, I had the privilege of going to school with Faith and reading a few stories to her class. One book I chose to read is called, "I Love You Stinky Face." (written by Lisa McCourt) This book is really a story about a mother's unconditional love for her child. The title of the book comes from the child asking the mother that if he was a smelly skunk and his name was "Stinky Face," would his mother still love him. She tells him she would put him in the bathtub, but if he still smelled she would tell him, "I love you Stinky Face." It's a cute story, but there is a story behind the story that I wanted to share with Faith's classroom. Faith and I share one of her favorite books with her kindergarten class.   After reading the book to them, I explained that a few years ago, one of Faith's friends and caretakers (Kimberly) took her to a place where they could make things out of clay. Faith decided she wanted to make a cup or a mug of...

Yesterday, I received one of the greatest Mother's Day gifts in all the six years I have been a mother. I enjoyed an afternoon at the spa! Now, this wasn't just an ordinary spa - it was a very special one in which my daughter was the one who was doing the pampering. You see, the spa was held in Faith's classroom and all the mommies (and a few grandmas) were able to enjoy their spa treatments all at the same time. When I first received my spa appointment, via Faith's folder, I had no idea what to expect. I just knew I couldn't miss it! But then as spa day approached, I received another appointment card informing me to have all polish removed from my toenails and to wear sandals. Now I was really curious - and a bit afraid as I did not want anyone touching my feet! On the morning of my spa appointment, I was sure to wash them really well and put lotion on them. I also shaved my legs for good measure. When I went to pick up Faith from school that morning, she was s...