Sunday, June 13, 2010
A Dad Tells About His Daughter's Cerebral Palsy
Cross-posted at Mothering.com. Click over there to see photos of Mark Wada and his family.
My name is Mark Wada, and my wife and I have a daughter with cerebral palsy.
The girl in that beautiful picture wearing the white dress is my daughter Rachel. Only now she’s 19 years old.
I would like to give you a glimpse into our world.
While every child rearing experience comes with its own set of challenges, joys, crises and successes, raising a child with a major developmental disability presents many issues most families will never experience.
Rachel was born on October 2nd, 1990 to a 15-year-old from southern Washington, who came to the emergency room of the hospital in the Dalles complaining of stomach pains.
She was shocked to find out that the stomach problems were because she was having a baby that day.
“This can’t be happening,” she said. “I have to take a test tomorrow.”
My wife and I were at a conference in Monterey, California when we first heard about Rachel’s birth. Rachel’s birth mother was considering putting the baby up for adoption, and she and her mother would let us know the next day. We had put the word out that we were interested in adopting and had just started the process to do so but had not yet signed up with an adoption agency. My wife’s sister was the nurse for the doctor who handled the delivery. She put in the word for us, and the birth mother and her mother decided that they were okay with that. Robin and I were playing golf the next day, and the hospital paged us on the first tee to tell us that the birth mother had decided to go ahead with the adoption and Rachel would be ours if we wanted her.
We finished that round of golf—I got my first eagle ever that day—and flew home the next day.
Since the birth mother had had no prenatal care, no one knew her due date. The doctors believe Rachel was born about 5 weeks early. Rachel was our first child, and since the adoption had happened so unexpectedly before we had even signed up with an adoption agency, we had no time to prepare for taking care of a baby. I’ll confess that I felt so ill prepared for the adoption that at the San Francisco airport, I was looking to see if there was a good book on parenting.
We had no baby room, no baby clothes, no crib, no bassinette. We got back to Portland, Oregon, where we live, and spent one day getting some things together. Then we drove to the Dalles to bring Rachel home.
When we drove back to West Linn, I commented to my wife that I have more documents when I rent a car than when we brought Rachel home.
Diagnosed with Cerebral Palsy (CP)
Rachel was a very colicky baby. We survived on a few hours of sleep as we tried different techniques to get her to quiet down. Rachel was a difficult baby, and she would cry and fuss literally for hours. We tried every trick in the book to console her. I would find myself dripping wet with sweat trying to calm her down after hours of crying. I will never forget when Robin came in the bedroom at 4 a.m. one morning, dropped Rachel on the bed and said “if you don’t take this baby, I’m going to kill her.” I woke up right away and took over. Those were crazy years for us, because I was the managing partner of my law firm with a busy practice and I think I lived on about four hours of sleep for a year or so. We adopted our second daughter 10 months after Rachel was born, so it felt like we had twins. Robin and I both felt that as older parents, we were maybe better able to deal with a difficult baby than we would have been in our early 20’s. I was 37 when Rachel was born and Robin was 33. I think Rachel’s muscle spasticity greatly contributed to her difficulties as a baby.
Our first pediatrician was recommended by friends. He had a very busy and successful practice. But as we noticed things that caused us concern, the pediatrician examined Rachel and would give us a stock speech about how first-time parents worry about things that he would chalk up to normal differences in the rate of development of babies.
When Rachel was about six months old, Robin was fed up with the pediatrician and decided to have Rachel checked by a pediatric ophthalmologist.
She examined Rachel and said that she was blind and recommended an MRI.
When they showed the MRI to me, my wife says I went white. It showed that nearly 30 percent of Rachel’s brain had been damaged.
The most likely cause, they told us, was that the umbilical cord had gotten twisted when Rachel was a fetus, and the lack of oxygen to the brain caused this level of damage.
Doctors can tell you generally that damage to certain areas of the brain may affect speech, muscle control and other functions. Unfortunately, they can’t tell you much more than that.
Since the areas of brain damage and the extent of the damage will vary from child to child, there is no roadmap for parents to indicate what to expect. One physical therapist told me that Rachel’s body functions normally, it is just that the signals from the brain are totally messed up.
Rachel has what I understand to be a fairly high level of disability. In one of her schools, the principal told us she was the most disabled child they had ever had. Rachel is not completely blind. She can see things that are put close to her eyes and she likely has better peripheral vision. She can only say anywhere from 10 to 20 words, but it is clear that she understands more than she can verbalize. We communicate with her largely by asking yes or no questions. While Rachel has an augmentative communication device, she uses it only sporadically.
The level of muscle spasticity varies with kids with CP. In Rachel’s case, she has spastic quadriplegia, which means that she has very tight muscles affecting her legs and arms. We dress her, shower her and transfer her to and from her bed and other equipment. We built a handicap accessible house about 16 years ago that has a lift system to get her to and from the bed. We still try to get Rachel to eat solid food, even though she hardly chews any of it. This means that we have to cut it up in very small pieces, and feeding her can take up to an hour for each meal.
Rachel is in a manual wheelchair full time. We did try her out in an electric wheelchair a couple of times, but putting a nearly blind child behind the controls of an electric wheelchair … did not turn out to be a good idea.
As you might imagine, Rachel has a myriad of medical issues. She has had 12 surgeries, ranging from some fairly simple ones to more difficult ones. Her spasticity probably played a part in her scoliosis that caused her vertebrae to be curved to almost 90 degrees. She had scoliosis surgery to straighten her vertebrae and put in two metal rods to keep them straight. Her hip was being pulled out of the socket, so she had a major surgery in which a bone was grafted to the socket to keep the hip from going all of the way out of the socket. Rachel was one of the first kids in Oregon to get a baclofen pump (about the size of a hockey puck) put in her stomach to pump a muscle relaxant into her spine. We have to get that pump filled with baclofen every couple of months and replace the pump every four to five years. Before getting the baclofen pump, she would be up in the middle of the night quite often with muscle spasms in her legs. She also has seizures and has taken seizure medication most of her life.
Rachel is more than her diagnosis
Let me tell you about Rachel as a person. She is a beautiful young lady, with a spirit that draws people to her. She has finished high school and is attending a post-high school program in Wilsonville three days a week for three years.
She does not like to just sit around the house and watch TV or movies or listen to music, although those are favorite activities of hers. She wants to go out to lunch, go shopping at the mall or go to the movies or a concert.
When she doesn’t get what she wants, she has a bad habit of screaming. My nickname for her is “beautiful screamer.” This can happen when she leaves the shopping mall (because she doesn’t want to go) or if she doesn’t like the movie that she’s watching. She also sometimes screams when she is really happy, so when she gets out of the shower and we put her on her bed, she will often scream out of what seems to be pure joy for a minute or two. Fortunately our neighbors have not called DHS when they hear this coming out of our house.
I think her screaming has been helpful to her, as many kids with CP are prone to respiratory problems. Sometimes the screaming is a blessing, although not when we want to leave the mall.
She is a loving child, and it is an unconditional love. She is Daddy’s girl around our house. For many years, when I would get home from work, she would scream “Daddy, Daddy, Daddy!” and would practically jump out of her wheelchair until I would give her a hug. She would then laugh with a very infectious laugh and smash my face against hers. I think she has more different laughs than anyone else I know. And her hugs, I call them “smash face hugs” and one day I swear she is going to break my cheekbones.
At those moments, I tell her that I am the luckiest father in the world.
I think about how much she has had to endure and yet she is always able to greet me with a smile that lights up a room. No child should have to go through what Rachel has and will go through, but she faces each day with grace, a good attitude and patience (except when she screams, of course).
But the real unsung hero in all of this is my wife, Robin. I could not have asked for a better life partner for this undertaking. Robin is a Rachel believer and advocate. She is the primary caregiver for Rachel who stays by her side night and day when she is in the hospital.
What about the future?
There are many challenges that lie ahead for us. Will we be taking care of Rachel for the rest of our lives until we cannot physically do it anymore? While that is not a good option for Rachel or for us, I can tell you that we will have mixed feelings when she moves out, because there will be a huge void in our lives when Rachel no longer lives with us.
I wonder how will she spend her days, since it seems unlikely that she will ever be able to work. How do you give her opportunities to have a full and fulfilling life and what does that mean for her?
My family is fortunate, even blessed, that we have some resources to do things for our daughter and plan for her future. But even with those resources, you need help. You need an organization like United Cerebral Palsy (UCP) to help you and guide you through the process, because the choices are not clear ones and there are times when we are plowing new ground.
UCP has referred us to doctors and therapists and helped us understand Rachel’s condition. We’ve looked to UCP for assistance with estate planning issues and with dealing with challenges in the schools. Someone from UCP met with a group of us to talk about living situations for our kids. Given the level of Rachel’s medical and caregiver needs, a nursing home with elderly residents may be one option, but UCP is helping us explore more palatable options.
Raising a daughter with a major disability has opened my eyes. At times when I’m pushing Rachel’s wheelchair, I see the looks in people’s eyes, as though I have ET in the chair. I have seen people at their best and their worst. We have a long way to go in this country to look beyond what we see on the surface. I have learned so much about diversity issues because of Rachel. Take anyone you know, put him or her in a wheelchair, and that person would instantly be viewed by many in this world as less competent, less intelligent and more difficult to hire, train and employ. That needs to change.
As my wife would say, people like Rachel are not disabled people, they are people with a disability.
Thank you for reading this post and letting me share my daughter’s story with you.