Choosing Love
It wasn't a complete shock to Becky Orton when her baby boy, Benjamin, was born with serious problems.
"During my pregnancy I told many people, including my OB/GYN--all three of them--that it felt like he was seizing inside of me. They all told me at different times that a lot of women describe movements that way and that nothing was wrong. It didn't feel like the normal baby movements. I should know, right? After all, this was my fourth pregnancy. So deep inside it wasn't a true surprise when I realized that there was something really wrong with my baby," she says.
Ben's official diagnoses include severe microcephaly (small brain), secondary lissencephaly (smooth brain), seizure disorder, cortical vision impairment, hypothyroidism, and chondodysplasia punctata (bone stippling disease).
Like many of us, Becky is learning to live with the cycles of grief and optimism that are typical when raising a disabled child.
She says, "For a long time I felt invincible with Ben. I could always handle whatever was handed to me. For example, when he got the g-tube at a month old or the bilateral hernia repairs at two months." Her son has frequent respiratory infections that require monthly stays in the pediatric intensive care unit.
"The hardest part has been the repeated hospital stays with Ben because my other children are seven, six and almost four. They miss me so much and don't understand everything about the situation."
"I always stay with Ben and I go through a withdrawal when we come home because up there I am focused only on Ben and no one else. Then when we come home it's like I'm thrown back into life--four kids, house to clean, meals to cook, husband to take care of, etc. It can be very overwhelming at times."
"So now I realize that having a disabled child means that inevitably you will go through cycles of really good times and there will be times where life can be hard."
Even in the most difficult times, Becky embraces a spirit of thanks. She's quick to give credit to her husband, Steven, for the wonderful way he is with their son, and for being the first one to say, "I don't care what kind of problems he has, I just want him to come home," when Ben was just a newborn.
She also appreciates her mother and sisters for caring for her other children when she's in the hospital with Ben and her husband is working, and is grateful for his co-workers who have offered their sick time to him so that he can be with them whenever possible.
Members of her church who, she says, are always available to pick up the pieces by making dinners or helping with her other three children, widen her circle of support. The love that's shown her does not go unnoticed.
"In a nutshell," she explains, "everywhere I look there are people willing and begging to help in any way. It's truly amazing and overwhelming at times."
Becky knew the moment that Ben was born that she'd be able to care for him as a baby. What she wasn't so sure about was meeting the needs of a severely disabled child.
"The doctor's told us he wouldn't live very long--months maybe, and although I was heartbroken I was also relieved that I wouldn't have to have him into his teenage or adult years," she admits. "Now that he's reached his ninth month I have learned that I love him more and more everyday and I pray to God that he will let him stay for as long as he possibly can. I want to take care of him, I want to see him grow."
Faith in God and love for Ben get her through the tough times. "It's amazing that our Heavenly Father knows exactly what we can handle. I never thought I would be able to handle something like this and I have learned that I can, and I can love doing it too."
She goes on about what pulls her through, "My love for Ben and feeling the unconditional love from him in return. No matter how tough things get, all I have to do is sit and hold my little angel boy and feel his love permeate my body; it's like no other feeling I have ever experienced."
Becky accepts both the joy and the pain that disability brings. She says, "My life is very rewarding. If I had a chance to go back in time and choose another path I wouldn't. I would not change this experience that I have had for anything in the world."
Written by Carolyn Murray
