A lot of times when I tell people that my daughter has cerebral palsy (CP), they respond with all sorts of reactions and usually seem to feel really bad about it. One person recently meant to be nice, but said she basically wouldn’t be able to get out of bed in the morning if that were her. We actually laughed about it because it’s so far from our reality. Society unfortunately sees disability as a tragedy or problem, and that you can’t live a good life. That is so far from the truth. My daughter has had a great life. It has been rough at times, and a lot of it is because society doesn’t get it. As a parent, what has been most difficult is the lack of support, especially as a single parent. It’s been the two of us against the world. The attitudes out there are suffocating. And we know from experience that community support is essential. That’s why it’s important that we promote accessible, affordable healthcare. There are community programs that are critical to living a quality life with opportunities. The reason my daughter has had a good life is not because it’s been easy, but because despite all the obstacles, she has been able to do what she wants and become the person that she is meant to be. We both appreciate all the work that people have done to create a more inclusive society, and we talk about this a lot. Of course there is still a long way to go and a lot of it will come from changes in perception and attitudes. Using a social model, we may challenge barriers, rather than focus on the individual as somehow less human. Every one of us needs different types of community supports, whether or not we are aware of what they are. We just haven’t typically expanded support to accommodate disability. We change buildings now, like doorways and ramps. But not all disabilities are physical and some of the newest changes have been in technology and content development. Society has typically served a very narrow segment of the population and that is part of the reason that society is comfortable with only a subset of certain diversity spectrums. We can open our minds to consider much more variety of human experience. Then maybe we won’t feel so bad when someone else’s life is different from ours.
There was a pause after a stream of kids got off the school bus in south Minneapolis, and then I saw Cole, who was 11 years old, moving intentionally down the bus steps, smiling and staring blankly, with his shock of blonde hair blowing in the crisp fall breeze. His empty-looking backpack was partway open, but there was nothing at risk of falling out. Without making eye contact, he made a bee-line for the front door, which was open, and barged into the kitchen. On the counter, he found string cheese and peanut butter crackers that I had made for him moments before. As if he hadn’t eaten all day, he scarfed them down and then asked, “Milk?” “Oh, sorry, Cole, I will get you a glass of milk.” “Milk!” he said, raising his voice. “One minute, Cole,” I reassured him, opening the refrigerator door and pulling out the carton of milk – then grabbed a glass from the clean dishwasher, even though it wasn’t dry. Before I finished pouring the glass of milk, he plunked himself in front of the television on his favorite chair, and found “The Simpsons.” Stomping his feet, he laughed and pointed, “Homer is silly!” We shared a chuckle. Then I asked, “Do you want your milk now?” “Yes!” he replied, taking the glass and drinking it down.
When the episode was done, I asked him if he wanted to do some stretching exercises and he agreed, picking up a toy truck he liked to play with. First we took off his leg braces, and he sat on the floor. Starting with his calf muscles, I held his left knee and pushed his foot toward him, then did his right side. In ten minutes, I stretched his calves, hamstrings, quadriceps, and hip flexors, to keep him limber because cerebral palsy causes muscle spasticity.
Cole was also autistic and intellectually disabled. He needed constant supervision and support because he was vulnerable and unsafe if left alone. Sometimes he got very anxious and overwhelmed, so he would hit and throw things. Once already, he had hit me in my pregnant belly when he wasn’t able to regulate his emotions. He didn’t want to feel like that, he couldn’t help it. I understood because I had anxiety and depression. We went to his local community center to play sports with other kids his age. They included him and treated him like a regular person. We enjoyed doing things together after school, and we had our routine.
After stretching, Cole liked to relax with video games. That was when I normally went to the bathroom to pump my breast milk for Imani, and put it into small plastic, labeled cups. It took me about ten minutes if I turned the machine on high, with both sides attached to suction cups that attached to milk bottles. Cole’s sister, Ricky, sat with him while I was gone, but I still hurried.
My breasts were tender as I turned off the suction and pulled the cups off. Every two hours, around the clock, pumping had to be done to produce enough milk and not dry up. This included getting up every two hours in the night to pump, so of course, I never slept. It took time to set up and finish, besides the actual pumping, and then it took a while to fall back to sleep – as exhausted as I was. Breast milk is recommended for babies, especially premature babies who are underweight and trying to catch up from the time they are born. Every day, I slept for about an hour at a time, worked all day, and was still recovering from child birth without a maternity leave. It was mere days until I returned to work, still stapled from a cesarean section, and trying not to tear the incision open as I did personal care assistant work for several people: Cole, Mark (a quadriplegic), Matilda (an elderly woman), and an elderly pair of sisters, Marie and Martha. This was where the benefit of youth made a difference, because for three months until my daughter came home, I slept a few hours a night – and then I continued to sleep a few hours a night. Looking back, I don’t know how I was able to function doing all that on my own as a 19-year old single mom with virtually no support system. I worked incredibly hard.
“Ricky, you can go in a minute, I’m just about done,” I yelled down the stairs, peeking out of the dirty bathroom that looked like it hadn’t been cleaned in months. Ricky didn’t say anything. She was quiet and seemed depressed, rarely smiling. It was hard to know what she was thinking, and she didn’t share. On my way back down the stairs, I was met by Cole’s mother, Beate, who practically cornered me. “Marriage is hard enough without a disabled child,” she hissed. Stunned, I had no time to react, just looked at her with big eyes that conveyed no understanding of what she meant. My heart started to race as I slowly distanced myself from her, returning to Cole, who was shrieking in the living room.
I met with Imani’s high school counselor today for some business related to her college applications. She said that she would not have known about a lot of her activities if I hadn’t told her because she is so humble. I told her that she doesn’t like to talk about herself. I do that for her, a little too well maybe. Then she said that I’ve been a remarkable role model for my daughter, accomplishing so many things as an independent woman. It kind of took me by surprise because I’m used to feeling like people think I’m inferior as a single mother. But she put a whole different spin on it. We should treat all single mothers this way. She didn’t try to tell me that she knows what it’s like, and make it about her. She just focused on our story, and honored us in a very dignified way.
Rabbit Tails from the Meadow
Meet the Rabbits from the Meadow
Once upon a time, there were five rabbit friends who all lived happily in a beautiful meadow with flowers, butterflies, and other creatures. They grew up together since they were born and played together each day. Their names were Clover, Midnight, Winter, Kota, and Sergio.
Clover had long, fluffy white fur, floppy ears, and hopped with a limp. She sometimes needed help climbing over big rocks and got tired faster than the other rabbits. The others never minded, and she helped them with other things. She especially loved to eat radishes. When she found a nice one to munch on, she enjoyed it one nibble at a time. She had a sister who looked like her who also liked radishes. So if one of them found a radish, they would share it.
Midnight had black, silky fur that glistened in the moonlight. He liked being up late at night under the stars. The daylight was too bright for his eyes and he felt more relaxed when the sun started to go down. He liked eating soft mushrooms best and liked to spend a lot of his time alone in his special spot. He didn’t like many changes and was happiest when everything stayed the same. He had a brother who was similar to him, but had brown fur. They liked to push small rocks into shapes by working side by side. Midnight was smart about astronomy and liked to show the others the patterns in the sky at night.
Winter had gray, flowing fur, and was missing one ear. She couldn’t hear out of the one ear that she had, so she showed what she wanted to say with her body. And she watched the others to understand what they were saying. They moved more expressively because she couldn’t hear their sounds. That way, she was included in the group when there was any communication. Winter was more outgoing than the others and a natural leader. When she had an idea, they usually listened to her.
Kota had black and white short fur and big, black eyes. She was the sensitive one and was the first one to take care of the others if they were sad or hurt. She was kind and gentle, and looked after the group. She sometimes went into her secret place when she was overwhelmed. There were times when she was gone a long time and hardly ate. She stayed quietly in her secret place until she was ready to come back out. The others knew when she needed space and put flowers nearby to show her they cared. She took them back to her secret place to remind herself that they were with her, and it helped her to come back out sooner.
Sergio had brown, fluffy fur that bounced when he hopped. He was smart like the others, but didn’t learn some things as fast as they did. So when they were trying something new, the others explained it to Sergio in different ways, so he would understand. He had a lot of enthusiasm and loved learning, and tried very hard to keep up. But nobody was sorry that he couldn’t learn some things and that he went about life his own way. He could teach the others about what he saw, like how the birds made a nest in the spring and where they found the materials. He was very observant and noticed things that others missed.
The Birthday Party
It was Kota’s birthday the next day, and her friends wanted to make sure that it was a good day. She is the youngest of all the friends, so they loved taking care of her. Clover called Midnight, Winter, and Sergio over to where she was sitting under an apple tree.
“It’s only one day until Kota’s birthday,” Clover said. “I think we should plan a party.”
Winter started hopping around the group of friends, demonstrating making a birthday cake. And with a dramatic conclusion and a smile, she added five imaginary birthday candles to the top.
Sergio jumped up and down, excitedly, his brown, fluffy fur dancing with him. “We all should add our own decorations to the cake! I want to put an apple from this tree right in the middle. And we should invite the birds, too; they can sing a song for Kota.”
Midnight listened to his rabbit friends, and had an idea. “We could dress up with necklaces of our favorite flowers, and give a bouquet of flowers to Kota.”
Clover thanked the rabbits, “You all are wonderful friends to Kota, and this party will make her very happy at a time when she needs to feel better. So let’s start making the cake this afternoon.”
So all the rabbits started making the cake. Midnight had the best idea for how to construct the cake. So they wove a basket together to hold the cake, then added layers of delicious nuts and fruits that they found across the meadow. Clover found fruits and nuts close to the basket because it’s hard for her to hop very far. And the others found fruits and nuts that were farther away. Sergio put a bright red apple on the top and Winter added five cattails in a circle around it. Clover added a plum and Midnight added a peach.
Clover sat down to rest after the cake was made and the other rabbits hopped over to her and sat down next to her.
“Kota is going to love it!” Winter said with movements. The others nodded their heads in agreement. Midnight didn’t usually say anything with sounds either, even though he could. He had his own way of communicating his thoughts to the others. And they learned how to understand him.
Then they all went to their dens to sleep well for their big surprise the next day. And on their way, they dropped flowers near Kota’s secret place.
Kota had not noticed that the others had been busy all day because she was in her secret place. Sometimes, for no apparent reason, she needed to be in her secret place. Sometimes she was sad and wanted to be alone. Late in the night, because she couldn’t sleep, she went out to look at the stars. She was not far from her secret place when she smelled flowers. In the starlight, she saw purple, blue, and red flowers strewn across the grass, as if smiling at her. The love of her friends made her feel warm in her heart. She decided that she would come out in the morning and have breakfast with Sergio, Winter, Midnight, and Clover.
In the morning, very early, Sergio, Winter, Midnight, and Clover gathered flowers to wear as necklaces to the party. And they made a beautiful flower necklace and bouquet for Kota. Midnight showed everyone how to make it, and Sergio found the best flowers to use. Winter did a dance for the birds to show them that there was a party for Kota that afternoon and to ask them to sing for her. The birds all started chirping and flitting about at once. They were so excited that it was Kota’s birthday and loved to celebrate.
At breakfast time, everyone acted like it was a normal day. Clover made everything pretty. Midnight put out the bowls. Sergio brought water. And Winter carried a basket of hay. They all wondered if Kota would come to breakfast. Quietly, they had their hay and water. If Kota felt peaceful, she may join them. If it was too loud or busy, she would want to stay in her secret place longer.
Soon, Kota came slowly toward the others and sat down for breakfast. She had the flowers they had left near her secret place and put them in the middle of the circle. Then she went to each rabbit and gave a hug – except Midnight, who doesn’t like hugs, so she held up a flower and thanked him.
After breakfast, they played in the meadow with the butterflies. There were white, orange, and pink ones – big and small, with different patterns. They danced and ran until they were tired and needed to rest. Clover stretched out under a raspberry bush. Midnight nestled into long, soft grass. Sergio curled up between long, red tulips. Winter lay in the curve of the base of the trunk of an oak tree. And Kota curled around the stem of a tall sunflower.
They awoke when they heard birds singing. The blue birds sang their song, then the swallows, finches, robins, warblers, and lastly, the chickadees. The rabbit friends began to stir and stretch. The birds flew down as if to greet them and came together as one flock that started to move toward the gathering place of the meadow. So the rabbit friends followed them.
When they arrived, there were the cake, flower necklaces, and bouquet for Kota. Before Kota could say anything, her friends sang Happy Birthday to her, “Happy Birthday to you, Happy Birthday to you, Happy Birthday, dear Kota, Happy Birthday to you. You are now five years old, you are now five years old, you are now five years old, Happy Birthday to you!”
Kota’s eyes filled with happy tears that rolled down her black and white fur, and splashed onto the ground. This was one of the best moments of her life. She could not imagine feeling more loved than this. She had the best friends she could imagine and they remembered her birthday. She blew at the cattails and they burst open with white fluff that floated through the air like magic.
The rabbit friends feasted on the cake together and told stories about their friendships with each other into the evening, forgetting about dinner or chores. And when the sun set, they went to the middle of the meadow and watched it cast radiant colors across the sky. There were never happier rabbits in all the meadows of the land.
It takes a strong woman to raise one. And it takes a village of strong women to support each other to raise strong women. The best way to show our strength as women is to empower each other — plain and simple. Our daughters will learn from our examples — our sons, too. We speak loudest through our actions, especially how we treat each other. The more we support each other, the more supportive we all become. And this collective good will is returned to us, in kind. So, women, BE GOOD TO EACH OTHER!! No excuses for anything but love and kindness. Namaste!! 🙂
My daughter after her first major reconstructive orthopedic surgery on both legs to correct issues related to cerebral palsy.
My daughter was a teeny-tiny baby, to say the least. She was born 14 weeks early, weighing two pounds, six ounces. Her early prognosis was very concerning — understatement of the year! With many medical challenges related to prematurity, I had no idea what to expect for her future. I guess one could argue that nobody knows their futures. For each of us, uncertainty is a part of life. But it smacks you in the face when you know the odds are stacked against you. Anyway, I chose to have faith, and then acted on it. I set out to do everything I could to give my daughter a fighting chance, and a great life. Some of her outcomes are connected to things I did, and quality medical care, but a lot of it has also been pure chance. We have only so much power to control our circumstances. We have some! But there is a lot we can’t change. I have found that it’s healthy to do everything you can, and then surrender the rest. Easier said than done, but worth the effort. For example, I couldn’t ensure that my daughter would eventually walk. But I COULD take her to specialists who could advise us on strategies to help increase her chances of walking. I couldn’t predict how well my daughter could read, or if she would even be able to. But I COULD put her in an appropriate preschool and provide a rich environment — reading to her, taking her to museums, introducing her to growth experiences. You see what I mean? I wouldn’t call it realistic, or optimistic. I would just call it managing expectations. I’m a dreamer who analyzes odds according to my own judgment. That means that I imagine the possibilities, aim high, maximize my internal and external resources, and then accept that the resulting outcomes will be on a range, or spectrum. I don’t worry too much about what other people say. Sure, I take it into account, like I do any input. But I process it with a lot of other information to form my own hypotheses. The benefits of a scientific mind are applicable to life, not just a lab. 😉
Recovering well and enjoying an outing to a friend’s farm.
Always at home with her animal friends.