This blog is all about my oldest son. He was born with a Lypomyelomeningocele. It is easier just to tell people that he had a form of Spina Bifida. If you would like to know more about my son's birth story you can see it here. We have been through so much over the years with surgeries, trial and error procedures, embarrasing accidents and more. The physical evidence of my son's birth defect has been dificult, but not anywhere near as dificult as the emotional evidence of it all.
The reason that I call my son a chameleon is because he doesn't look like other victims of Spina Bifida. Most of these children are in wheelchairs, wear helments on their head and/or have some other physical ailment that immediatley lets all who see them know that these children live a very difficult life that most of us could never understand. When people see my son they see a boy just like every other boy his age. Some people never see the brace on his leg and those that do, are amazed that he would even need it. My son blends in with his environment every day of his life.
What they don't see is this. Every morning he wakes up 30min. early so that he can go through his bathroom routine. In this routine he begins by removing a soaking wet pull up that is a must for bedtime, then he puts on a rubber glove so that he can do digital stimulation (which really means that he is putting a finger in his rectum to open the muscles that release the bowel.) After he does this intrusive procedure he follows that with a suppository. He then has to try and push as much out as he can for twenty minutes. He then takes a liquid medication and does a self catheter to empty his bladder. The rest of his morning mimicks that of his younger brother with the normal getting dressed, eating breakfast, and brushing his teeth before running out the door to catch the school bus. While at school, an aid from the office comes to his classroom every 2 1/2 hours to take him to the restroom so that he can again do the self-catheter to empty his bladder. We are still trying to figure out the perfect amount of time between catheters and trying to help him understand the consequences of trying to get away with not doing it at all, which is having an accident in front of his friends, kidney infections that could lead to kidney failure and a few other things that he doesn't really grasp the severity of. As he grows and gets older we will always be adjusting all of his procedures. The doctors tell us that with every growth spurt (especially around puberty, which we aproaching faster than I would like,) that we have to worry about needing another surgery on the base of his spinal cord.
There is a limited amount of adults (outside of family) that know exactly what he goes through every day and his peers only see the physical evidence. My son does his best to explain away the questions that the other kids ask, but being a kid himself he doesn't really understand it all either. There have been several moments in his life when he ask us "Why can't I be normal like other kids?" The only answer I know to give him is that the other kids are not as "normal" as he thinks. I try to reassure him that everyone has something about them that makes them different from everyone else. I do my best not to cry in front of my son, but there have been times that the emotion of it all has become too much.
We have always insisted that other people not show our son pitty or treat him differently than other children. We want for him to gain confidence that he can live a "normal" life. On the other hand, we have needed at times to find other people that have walked in our shoes and understand the emotional conflicts that we go through. This has been a real struggle for us. So the intent of this blog is to journal our emotions (the joys and the difficulties,) and to document hospital and doctors visits.
You can also find me at http://reesie2u.blogspot.com where I blog about my three beautiful miracles (My children) and our day to day lives.
