Tuesday, March 11, 2014

"Life is Never Without Hope" - Accepting differences

Today I watched a phenomenal episode of "Call the Midwife." A woman gives birth to her third child, a son, and soon after birth it is determined the baby has spina bifida, and has to be taken to the hospital to have surgery. The story continues showing Nurse Lee, the midwife, helping this family learn to cope with a child that will be different, that will never walk, or live to an old age. In the beginning, this mother can't even hold her baby. Nurse Lee comes every day, helping her with daily tasks. She then goes on an errand with another nurse to a home for special needs children that have been abandoned, or given away at birth because the parents could not care for them, or didn't want to care for them. You see many children with all kinds of challenges walking the hallways.

She then returns to the home of the grieving mother, and finally gets her to go outside for a walk with the baby, only to have a nasty neighbor say rude things and cause her to retreat back into the house. When Nurse Lee checks on her later, the mother says it wasn't the neighbor who upset her. And then she says something that hit me to my very core: "If I hold him, I think I might die with a sadness." She then asks why the doctors bothered to save her baby, if he will need so much care and won't live to an old age. And Nurse Lee responds, "Life is never without hope."

In the end (SPOILER ALERT!) this lovely mother does hold her child, does see him for who he really is, and loves him, unconditionally. But only after going to that very same home of special needs children, where her husband "pretends" that they need to take their baby there right away because it's the best place for him. So they begin packing the baby's things, and suddenly this mother looks down at her baby, and picks him up, and says they will not take him anywhere. She sees the hope in her child. Her husband knows she will be okay.

This episode made me think about all the many things that can happen when a baby is born, things that can go wrong, things that can cause a baby to have a lifelong disability, and how that can drastically change the experience of motherhood. This poor mother only wanted to have a healthy baby, and suddenly that was taken from her. Suddenly she has a baby that might not live past his teen years, who will suffer extreme challenges in his life. The joy, temporarily, is taken away, and replaced with sadness, so deep that it can cause one to feel near death. As one of my good friends wisely said, "You mourn the loss of your child." It is true, you mourn what could have been, you mourn for the future that might be taken away.

I know exactly how this mother feels. I have felt this same thing, three different times. With Julianna, there were times, in her early years, that even thinking about her challenges made me feel like I would die with a sadness. With Blake, whom I will talk more about soon, his infancy worried me to no end with his mastocytocis--I was constantly on alert, watching for signs of anaphylactic shock every time he flushed. And with Nathan, there were very small moments, in the early hours of his life, when I didn't have all the answers, where the sadness came over me. This is part of the process, the grieving process when you discover your child has a disability or health problem. The sadness, very similar to losing a child, is enveloping and suffocating. But, with time, that sadness goes away, and gives way to hope, hope in the future, hope in the present.

To any of you in this grieving process, I want to say to you, it doesn't last forever. You will be able to move on, to find the hope, to cope with what you have been given. With each one of my kids, receiving each diagnosis was hard, excruciating. And every time I would look at my children, I would see them as what they have been diagnosed with. It's all I could think about, for a long time, the diagnosis that made them different. I worried what others would think. I avoided certain situations. But then something miraculous happened. I suddenly saw my children, JUST my children, and not the diagnosis anymore. I saw them for who they were, right now, not what they might be, or could have been. I remember the exact moment I felt this, for each of my children, and it is the most liberating feeling.

I know it may seem like I talk a lot about what makes them different, which I think is still important to do, because making others aware of the differences can bring acceptance and understanding. But my hope is that others will see my children the way I do--as children of God, created in His image. I have hope in my children. And I hope you all have hope in your children as well. Right now you might just see the diagnosis, but that will change. Soon you will just see the child, and that diagnosis, though still there, becomes who they are, becomes part of your normal life--it doesn't make them different anymore. I'm not saying it will always be easy, because I still have challenges with my children. But I have accepted their differences. I have grieved and mourned. And now I am trying to spread hope, and make a difference in the lives of other families with special needs children. "Life is Never Without Hope."

1 comment:

  1. Beautifully said, my sweet Kera. As parents we never know what challenges we will face with our children. Some challenges are presented at birth, others may come later. But, as Mother's we love, and never give up hope. Nothing compares to a Mothers love. Julianna, Blake, and Nathan are blessed to have such a special Mommy. I love you so much! Mom