Despite having to use crutches and restricting her activities because of a condition that makes her bones very fragile, Ivy Waweru doesn’t consider herself disabled. She talks to us about wanting the rest of the world to think of her the same way.
“When I was in first year at Kenyatta University, I met a boy. He was a fourth-year student, so you can guess how big a deal it was for me. We started seeing each other. When I was in second year, the deal got bigger; I got pregnant. I wasn’t afraid, or worried. I was just curious.
Pregnancy had always fascinated me, especially how my body would adjust to it. I had been looking forward to pregnancy. Well, maybe not that early. The boy told me to tell my mother and then move in with him. I didn’t move in with him and I didn’t tell my mother.
She found out for herself soon enough. You know I am short and when you look at me, I can tell exactly what part of my body you are looking at. And this one particular day, I was in our house and I could tell she was looking at my stomach.”
Ivy Cecelia Waweru has these little flashes of brilliant one-liners. Like when she demonstrates how she can tell which part of her you are looking at. Not self-deprecating humor, just simple straightforward intelligent observations.
When asked where her village is, she answers; Dagoretti Corner. Why? She was born and raised there. And she is not just funny, she is actually very brilliant, and spirited and has probably lived a life most ladies her age can’t begin to imagine.
Whereas her boy-meets-girl story appears very familiar, her life is anything but ordinary. She has been on the surgeon’s operating table 10 times in her life, excluding the time she had to lie on it for the C-section procedure as she delivered her son.
She has spent sections of her life, sometimes an entire year, on crutches. She walks around with metal plates in her legs to support her femur, was in and out of class in high school on so many occasions for medical reasons yet somehow still scored an A-.
And while most of her age mates are probably wondering which new night club they should be going to next, she is raising a two-and-a-half-year-old son, holds down a sales and marketing job at African PA magazine and has for the past more than half a year run a foundation she flatteringly named after herself. All these achievements at the age of 23.
At birth, her parents (Hellen Kimani and John Waweru – dad has since passed. Mum re-married) thought she was asthmatic. The asthma was treated. Two years later, she was admitted for chest pains.
Upon check-up, the doctors discovered that it was something else entirely, she had a condition known as Osteogensis Imperfecta (OI), commonly known as imperfect bones. That discovery led to her first trip to the operating table.
“I have fragile bones. A genetic condition. Both my parents were carriers. My bones can break very easily. This means very little physical activity. It means I have to watch my weight constantly and the major one, it means that I have to walk around with metal plates in my limbs for support, otherwise, crutches. I am lucky because I do not have the severe form of OI. If I did, I wouldn’t be able to walk and would probably have scoliosis – an S-curved spine,” she explains.
Ivy is jovial and active despite what most people would consider an unfortunate situation. The only physically visible symptom of the condition is her below-average height and the crutches – when she has to walk with them. The rest, she deals with privately and resolutely.
Ivy does not look at herself as disabled. True she had to stay home with her mother as her two sisters went out for physically exerting activities as a child, true her friend Nelly Gitau would spread her bed when she was too weak in form three after surgeries, and true she can only wash two or three clothes in a session; she believes that she is equal and can and should live her life as anybody else.
This she believed as she grew up and still believes to date although her pregnancy and life after have taught her that not everyone thinks so.
“To me, my pregnancy was normal. To others, probably not. My first doctor’s appointment was the first incident. The doctor checked me and concluded that since I had weak bones and plates in my thighs, I couldn’t carry the full weight of the pregnancy to term. In his words, I was high-risk. A second doctor decided that I was strong enough to go full term, just that he wouldn’t allow me to deliver naturally, it could be dangerous, hence the C-Section delivery,” she says.
The second incident came from one of her close friends. When Ivy told her she was pregnant, her friend was miffed. “Even you?!” The friend shrieked (Ivy says it sounds worse when put in Kiswahili).
She explains; “It is as if to be disabled means you should be asexual. From my friend’s reaction, it was clear she thought I did something that I was not supposed to do. From my interactions with other disabled women, I have come to learn that many normal people think that matters of sexual health, sexuality and fertility among disabled women is not normal. Nothing could be farther from the truth.”
Then came the reaction from her relatives. Her mother, and two sisters Maureen and Amy Waweru all closed in, got extremely protective. They demanded answers from the boyfriend, wanted to know how serious he was with her.
They advised her against moving in with him — although this made sense even to her since she can’t do most of the required household work, leave alone being pregnant while doing them. Ivy and the man parted ways six months after her son was born, although she thinks she would have made (and will one day make) a good wife, just as she is crushing the single motherhood thing.
Leeroy Mutua, the son, was born on June 11, 2014. With him came other challenges. She was told that he’d grow too heavy for her to carry at two-and-a-half years. That has not happened yet.
She worries about what she will tell her son next year when he joins school and the other kids tell him that his mother is not like their ‘normal’ mothers. She knows that other disabled women go through much worse scenarios.
“Take the example of a woman who can’t walk and has to be wheeled around. If she is expectant and has gone to see a gynaecologist, she has to be lifted from the wheelchair onto the doctor’s table/bed. That woman will probably be feeling like she won’t make a good mum even though the baby is not even born yet. And she knows that when the time comes, her limitations will not allow her to run around with her baby like other mothers do. But here is the truth; those women make as good a mother as any woman.”
Currently, Ivy works from Westlands, Nairobi, as a sales and marketing representative. She finished her undergraduate degree studies in April 2016, from Kenyatta University’s School of Economics. When she is not with her son, whom she raises with the help of her house manager, and when she is not at work, she is engaged in one activity or the other with the Ivy Waweru Foundation, an organization whose name alone makes her ask if she is too self-absorbed.
Then she jokingly explains that she wants to grow it into such a big institution so as to shield her son and possible future kids from having to explain to the world all the time why their mother is different.
On serious note, she says the idea to form the foundation came to her during her pregnancy and in her first few months as a mum.
She softly explains: “I was somewhat alone. No one was coming in to ask me exactly how I was doing. People were around me all the time, but not really with me. I lost weight (while pregnant) so much that I weighed 38.5 Kgs. I didn’t get out often, I fell into depression to a point where I started self-diagnosing and toyed with the idea of seeking therapy.”
Those around her fussed about her in the name of helping, others questioned if she was in a good shape to carry and deliver the baby — though not to her face. Her boyfriend was also under constant pressure from friends and relatives. Add all those to the fact that she was concerned about the baby.
“Thereafter, I noticed that most street women are disabled and have babies. Later, after a bit of research, I found out that most disabled women are raising their children alone. And that most people do not understand them: Ivy Waweru Foundation is the platform through which I intend to help disabled women feel comfortable in their own skin. I want to steer them towards accepting themselves and make understand that it is okay to discuss their conditions with their significant others,” Ivy says. She skirts around discussing her condition with her boyfriend for as long as she can.
Ivy may be young, but she surely doesn’t have the experiences of a young person. She is punching way above her weight.