My niece, Michelle, Ava’s mother, called me yesterday. She wanted to ask me a few questions about Tom and his handicaps but this turned into a very long conversation. Ava is doing very well at 2lbs 13 oz. She doesn’t need any help in breathing, does very well at maintaining her body temperature and is beginning to learn to nipple feed. BUT Michelle said that just about every doctor and nurse that comes into Ava’s room will tell Michelle and Marcus how sorry they are about the all the bleeding in Ava’s brain. (scare of 1 to 4, 1 being the mildest, Ava is a strong 4) Michelle said the doctors and nurse are telling her they going to have to wait to see how Ava does, but Michelle is getting the feeling from the doctors and nurses that Ava is going to be handicapped. It was so hard for me to hear the shock, depression, guilt, anger, sadness, and anxiety in Michelle’s voice.
Michelle wanted to know when and how I knew how handicapped Tom was. That was the hardest part of the conversation. Tom now so obviously severely handicapped. But as a baby, I questioned doctors over and over as to why he was so far behind or never met any of the monthly milestones that babies are to meet. From the time Tom was about 5 months old until is was almost a year, I made one doctor’s appointment after another with any doctor that would see us. I got so sick of hearing “you new mothers worry to much.“ One doctor even told me to join a support group. I yelled back “a support group for what??? You won’t tell me what’s wrong with my child!!” This doctor left the room in tears. It was difficult trying to answer Michelle. I just reassured her that doctors don’t know everything. For me, life works out best if you take it one day at a time, and put one foot in front of the other. Just keep trying to move forward in life and don’t rush into any conclusions.
I'm praying for our Ava, for I don't want my niece to have to experience the stress of having a handicapped child. Trust me, it is one of the most stressful experiences a family can endure.