The Leah and Brandon Blog: October 2011

Hannah and Brian

This past weekend one of Brandon's favorite aides got married to her true love. Hannah and Brian married in Buda in front of their many friends and family. As we watched the celebration this past weekend it did make me think of all the great people that have helped Brandon in his life. He really has been truly blessed with caring, gifted people in his life. But I was also reminded this weekend that Brandon has had a big impact on those same caring people in their own lives and I have really enjoyed seeing them all grow into the fabulous adults they have become. Hannah is a speech therapist working with kids like Brandon in Houston. She really worked with Brandon as a student at UT on his communication device and his speech as she learned all about speech pathology at UT. But she also was unafraid of Brandon, treated him like a little brother, shared with him many adventures that he loved and of course supported his love of the Beatles. Hannah and Brandon made a Christmas video which one day I will post. It will show you how they were so close and how much he loves her. Brandon was a little jealous of Brian but you cant not love Brian because you can tell he really loves Hannah.  By the time we left their wedding, Brandon has very happy for both of them. Hannah's whole family was there. So was Ashley, Re'Lynn and Laura. All of them at one point also cared for Brandon during their time as students at UT. They became our family and sometimes I felt like their mom while they were away from their own families. Re'Lynn is now a teacher and I always knew she would be a great teacher. She is fun, sweet, caring, patient and loves kids. She now has two kids of her own. Ashley works in business and now has a baby named "Hannah". She was a frequent visitor while Brandon was at Scottish Rite and her husband Jeff has been added to the the extended Brandon family. Ashley also treated Brandon like part of the family and took him everywhere. Laura who was going to be a nurse told me after the wedding that because of Brandon she decided to become a physical therapist. Of course Brandon loved seeing all of them in his own way, but it was also really great to see all these great people who have been such a big influence on Brandon's life grow up into the great adults I knew they would be.

When Brandon started having nurses and aides help care for him I had no idea what to expect. Brandon was a little over 1. After an evaluation with his case manager we began to have nurses come to the house to care for him. I had no idea how ill Brandon really was until I realized that he was receiving 24 hour care several days a week. At the most critical time in Brandon's life we had 12 nurses coming and going each week. It was very hard to have no privacy, to receive all that great advice from each person coming in the house and to sleep knowing that someone is up all night watching your child in your house. But after a few years I finally adjusted to the routine. The great thing about having the great care Brandon had, is that the nurses watching him early on were on top of his illnesses, told me when to call the doctor or when we needed to call 911 and probably he is alive today because they were there. Before Brandon had nurses one night he had a 20 minutes seizure before I realized it was a seizure, Brandon apparently stopped breathing on a regular basis at night and I was not aware of all of his medical conditions until we had night nursing. It really is amazing that he made it through the care I gave him prior to the care he received with the nurses.

But the bad news about having such great care is that Brandon expected someone to tend to his every need all night long and it was very difficult transitioning from nursing hours to attendant hours. When Brandon was 7 we moved from the MDCP program for kids who are medically fragile to the CLASS program. The CLASS program works more on attendant hours rather than nursing hours. At 7 Brandon had finally stopped relying on machines for most of his care and the nursing services were manageable. I decided that it was time to try attendants. It was very hard because I had to do the evening hours myself. This meant I had very little sleep each night. Brandon was so trained for 7 years that someone would care for all of his needs at night that it took several years to retrain his night habits and to not be scared without the care.  I slept on Brandon's floor in his room for almost 1 year trying to get him to sleep in his own room. Still today Brandon will still sneak into my bed in the middle of the night, usually after he has a seizure or he has choked.

Brandon and I loved all the nurses that cared for him and we see many of them when we have many medical appointments and hospital stays throughout the years. But Brandon and I have also loved the many attendants that have been part of his life. Our first attendant Clarissa worked endless hours with Brandon on saying each syllable and sound, pretended that Brandon was the weatherman when Brandon was interested in the weather and worked with him on his communication device. She also worked with Brandon to help him learn to eat. She now works as a speech therapist for a school district. Ashley G worked with Brandon on his school work and eating. She is now a social worker and has a son. She also became a part of the family. Will listened endlessly with Brandon to music and never tired on Brandon's music obsession. Brandon had many UT students work with him while he was home schooled and tirelessly worked on his communication device, math, reading, and science. Kristin worked with Brandon on homework when he started back to school and started him in special Olympics. She helped Brandon during both foot surgeries and recovery and came with us to Dallas during his hospital stay. Brandon became part of her family on many occasions. Ross has been Brandon's aide for the last few years and they share his love of music. Ross has been working with Brandon while Brandon worked at jobs in the summers and all those guy things I cant do with Brandon. Brandon loves Ross speaking Spanish to him and Ross loves practicing Spanish on Brandon for one of his classes. Jeff also works with Brandon and has also been his aide at school. He knows Brandon well and challenges him to show everyone how smart Brandon really is. I could go on and on but I cant cover everyone and everything here.

Almost all of the aides tell me that Brandon and him/her have a special bond. I always see that but I think the special bond is really Brandon letting them into his world. Because Brandon really won't give you any attention until he knows that you deserve that attention in his book. Once you meet his tests, then that special bond happens. Not everyone meets the test, but if you are lucky enough to meet that test, then I do believe Brandon will have a lifetime impact on those who have.   Everyone who has worked with him learns the very special gift that many people never learn in their lifetime about what is really important in life. It is in his favorite Beatles song. "All you need is love" and love and family is what Brandon is all about, with some Beatles along the way. So thanks to all you special people who have helped Brandon over the years. You know who you are.