There is a club that has exclusive membership. To join you must pay a dues, and they are costly. The club welcomes new members with open arms, and they try to help each other with what membership means. You probably know someone who belongs in the club, but you might not realize they are members. Members usually don’t talk about it, because they don’t want you to feel bad about their affiliation. What club is this you ask? The parents who had to bury their children club.
My wife and I became members on February 27, 2005 with the passing of our daughter Angela Faith at the age of three. We had worried that the day would come for much of her life. We were first time parents when we were told the day before Angela was born that our daughter had a severe brain abnormality seen in the ultrasound. When Angela’s brain should have migrated early in fetal growth to her head, something had happened and most, if not all of her brain had not made it. That night, in the hospital we had to come to grips that when our child was born she might be stillborn due to not enough brain to make her heart beat or breath. It was a time of prayer and love. Friends from around the globe were getting in contact with us, lending us all the support they could. The next afternoon Angela was born by c-section, and she cried just like any other baby. We waited to see what would happen next.
We found out that Angela was born with holoprosencephaly and hydrocephalus. Those terms meant not only did she not have a lot of brain matter, but that she had extra fluid pushing at what was there. It must have been like living with the worst pressure migraine all the time. We were told she might not be able to see or hear. We were given an option of leaving her at the hospital since the doctor gave her not much chance of living the week based on what they could see in her skull. We couldn’t believe that. Of course we would take her home, and we did. We did have hospice care become part of our lives since we knew the end could come at any time.
Our Angela was a fighter though. We began living day by day, in the moment. That can be difficult with a special needs baby. That first year was the toughest I have ever lived. There were strains on our lives that tore at my wife’s and my relationship. There were times I had to put a screaming Angela in her room and walk away, not knowing what else to do to sooth her, but knowing I was at my wit’s end.
Through it all there was a lot of good. We watched our daughter begin to thrive and grow. She could definitely hear and she had such a great laugh. One of my favorite things to do was throw her in the air and then catch her. She would squeal in delight being able to fly, even if just for a moment. We began to notice she could see, and after finding an optometrist who believed us, we were able to get her glasses and open the world to her. She learned beginning sign language. She learned to speak some words out loud. We began to see our miracle child not as a fragile baby, but a little girl who wanted to explore her world the best she could. She graduated from hospice and moved into palliative care. We stopped worrying if she would stop breathing one night, and began to wonder how we were going to make our house more handicapped accessible. We even thought we might be up to having a second child.
Angela had to have a surgery to help with the tendons in her legs. She was slowly pulling her hips out of their sockets, so she needed to have the ligaments released to stop this from happening. We came home with her in two casts. Angela was irritable, but doing fine. A couple of days later she came down with a fever. She had trouble keeping things down. She became less active, not wanting to eat. We had gone down this road before, but got through it with making sure she had fluids she needed and Tylenol to help keep the fever down. I stayed up with her the night before to make sure that happened. By the next evening I had to take a nap. I figured I would take another overnight shift, but then I was called downstairs. Angela was not responding. She was barely breathing. We called for an ambulance. The paramedics were at the house in just a few minutes. While they worked on her, Angela stopped breathing. They did the best they could, but it was the end.
Angela had picked up a virus that was floating around the hospital when she had her surgery. Most people could shake it off as a bad cold. Angela had a compromised immune system normally, but with the surgery it was just too much for my little angel.
The grief is always there, haunting me and my wife. Even now, nine year latter it can sneak up on me in the shower, talking to a friend, or just driving to work. I am a better person because of Angela, but I will always feel incomplete as well.
I am part of an exclusive club, who never wants to add to our membership, but greets each new member with understanding, hugs, and a shoulder to cry on.
Angela will always be our first born, our miracle, our angel.