By the Way

The following post may seem a little odd to some of you. Please read the whole thing before you begin to judge me or my family, try putting yourself and your family in our shoes. If you have questions, comments, or anything else please leave a comment or email me. Trust me, I/we have heard all the questions and comments before even the negative ones.

EVERYONE who came into David's room yesterday comedcontractedmented on how it must be really hard for us to have a child/brother like David. I really get tired of hearing that, but it is. Here are a few things to remember.

1. For my parents and other adult family members the hard part was in February 1982. David was 8 months old and just small for his age. His brain functioned well and the only problem was a heart defect. After the surgery to correct to the heart defect he had a bleed and lost blood to his brain, causing the brain damage that he has. THIS was the hard part...knowing that this child would never walk, talk, and play. Brain damage doesn't heal-he will be like this forever.

2. For me and my other brother Matt David has always been handicapped. I was 2 when David was born. I don't remember much. I remember when he had his heart surgery and that I got to stay with my grandma a lot. That's all I remember. Matt was born when David was 2. So for us David has always been this way. I remember when I found out that not every family had a brother like David, I was shocked. Up to that point in life we had always been around other families that did have a kid like David. So it has been normal for Matt and me to have a handicapped brother.

3. We are not brave, strong, saints, or anything else that people think we are for caring for David at home. We are normal people who have a child with special needs. We love him and therefore we do all we can to meet his needs and to do it as best we can. This is our only option, we want David at home.

4. David is not lucky to have lived through his heart surgery. Obviously this sounds a little crazy to some people. I realize that most people are lucky to live through heart surgery. David is not one of them-he has severe brain damage thanks to his heart surgeries and has been suffering for 22 years. David's brain works on about the same level as a 6 week old baby. He can't communicate except through crying and occasionally a smile. He wears diapers. He is dependent for ALL of his care: Feedings, changing clothes, baths, medications (all 11 of them), and even moving. David has a feeding tube to eat, he cannot have food in his mouth because sometimes it ends up in his lungs. He has a wheel chair and sleeps in a hospital bed. His muscles are so contracted because of the brain damage that he has very limited range of motion of his arms and legs. That, my friends, is not luck.

5. David also has major heart and lung disease. Asthma and weak diaphram muscles are to blame for his lungs. He is on oxygen frequently. The doctors think that his heart problems are related to issues his surgerythat's (DUH). He is on many heart and lung medications.

6. Watching David suffer is never easy, but it has become a DAILY routine in our lives. This is why our family has decided that if David stops breathing or his heart stops, that's it. No CPR, no tubes, no more machines. All of those things would just prolong his life, and for what? More suffering? We believe that this is the best thing that could happen for him; it would be the end of his suffering and the beginning of his live with Jesus.

YES, OF COURSE WE ARE TIRED and yes we do get a break every now and then. We have a home health care nurse most week days and sometimes David goes to a care center while we go out of town or just need a few days to relax.