Giving Thanks
"The appropriate response to a gift is gratitude," says Rachel Trindle."Even when the gift is something you would have never chosen for yourself." Her son, Daniel, was affected by TTTS--twin to twin transfusion syndrome--while she was pregnant. It ultimately caused brain damage, spastic quad cerebral palsy, cortical visual impairment and microcephaly. His twin brother, Andrew, is developing normally.
"There are people who believe that it would have been better if Daniel was never born--either that we should have aborted him, or that we should have let nature take it's course and not had the surgery (during pregnancy surgery was performed to correct the TTTS)," she explains. "There is no question that Daniel's life is very limited, we as his family will deal with a lot of pain and it's never going to be easy."
Rachel recognizes that the disabilities Daniel was born with affect only his body, and that his spirit--his soul, is intact. "There is amazing joy in accepting Daniel, loving him and appreciating who he is. I tell my children that God thought Daniel was so special, and his life so valuable that he kept him from dying several times. Anyone who is that special to God is a very important person to us."
"On the deepest level, both John and I have found that our relationship with God has been the most essential help," she says. "There is a real annoying platitude that suggests 'God only gives special babies to the special parents.' Tied to that is the line about 'God never gives you more than you can handle.' I disagree--strongly. First, nobody is special enough to be Daniel's mom or dad. Second, even if that twisted idea were true, I would not be that special parent. Honestly, my two typical sons are frequently more than I can handle, forget throwing twins, and one of them with complex issues into the mix."
Rachel believes instead that we're all given many things that we can't handle, but when we turn to God for help, we find the strength we need. "There's an idea that the families of kids with disabilities are suffering saints and that these children are a grim burden. Some think that either we did something to deserve brain damaged children, or we're so saintly that we don't mind their disabilities. In reality, we most certainly aren't perfect, but having a child like Daniel is not punishment. Daily life is not relentless suffering. Despite all his special needs, Daniel is a joyful, precious, very lovable person. I wish more people realized how much fun Daniel is. It's a pleasure being his mom."
Daniel is one of four boys. He is an identical twin to Andrew, and little brother to James and Tim. "He's everyone's favorite brother," she says. "He's always happy to see them, always laughs at their antics and he never gets into their stuff." Add to that the cool equipment and fun therapies (like swimming), and Daniel is pretty popular.
The boys find creative ways to include Daniel in their play. "Last week they chased around the house and at each lap they had to tickle Daniel and blow on his neck--he loved it," she says. "We've propped him securely in a laundry basket and let them push him around in his 'race car'--our boys all love speed."
Even though the pre-natal surgery was successful, Daniel suffered several strokes that damaged parts of his brain. He's fed through a g-tube in his stomach, has a hip brace, handsplints and ankle foot orthotics (braces). He is in a wheelchair and has difficulty seeing due to his brain damage. His muscle tone is high, so he needs medication to help control the spasticity. There is quite a contrast between his life and his twin brother's.
"For me, each of Andrews milestones is bittersweet," Rachel says. "Two of the hardest things recently have involved developing speech and the wheelchair. Andrew is talking well now, and while I truly enjoy and revel in his words, it's incredibly painful too, as I don't think Daniel will ever have speech."
It also hurt to see Andrew in the wheelchair his brother will use. "Andrew mastered the propelling and steering within 15 minutes. For Daniel, all movement is hard. He may never be self-propelled. I found myself actually angry with Andrew, thinking this is so unjust--even using a wheelchair is fun and easy for you. It was a passing emotion, but one that crops up every now and then."
Each boy is coming to terms with Daniel's disability. His twin is sometimes jealous of the extra time he gets, or angry when Daniel is in pain or undergoing unpleasant treatments. Most of the time, though, he just enjoys being close to him.
Recently, James asked his mother why they don't pray for his brother to be healed and have "strong walking legs and talk in words." He lay on the floor sobbing one evening demanding, "what's life without words? God could still make Daniel better. You shouldn't give up on him!" Not many mothers find themselves dealing with this type of grief with a kindergartner, but Rachel and her husband have always been honest with their sons about the fact that Daniel will never be "normal".
Rachel assured him that the most important things in life can be communicated without words, and that while she doesn't believe that God will heal Daniel, she's never giving up on him.
"Now our faith goes to believing that God will give us the strength to care for Daniel." she told him. "And even more important, that Daniel's life will be beautiful and honoring to God."
Rachel and her husband have learned what so many of us have found to be true when raising our Daniels.
"Intelligence is not the greatest gift," she says. "Having a child who will likely never have a measurable IQ has forced us to reevaluate what's of paramount importance. We still value and nurture achievement and scholarship in our children, but not with the same intensity we might have -- and we are the richer for that."
Written by Carolyn Murray
