ROCHESTER HILLS, MI – Christy Landefeld always said she would give her left arm for the chance at motherhood.
The Rochester Hills mom looks back on those declarations with disbelief; they are too full of irony. "I just thought that was supposed to be an expression, right? That's just a thing people say."
Instead, in a random, rare and perilous chain of medical events, Christy lost, during childbirth, her eyesight.
Emy Landefeld is almost 2 years old and her mom is legally blind. Both are described by father and husband Josh Landefeld as fighters.
"A lot of people can say those kinds of things and mean it—you say what you would give up for your kid," said Josh Landefeld, whose voice struggles to stay steady when he speaks about his wife and her journey. "But especially now, with Mother's Day ... there's always that reflection of what she did have to give up.
"I look at what she's had to go through, facing all of the challenges that every new mother faces, and then in addition to that she has had to adjust to being blind."
But despite this loss, Josh and Christy look at what they gained. And it's so much more.
There's Emy, of course, the joy of their lives.
But there's also a two-year journey of unforeseen challenges – a journey that forced the couple to see that the best things in life can be right in front of you, even if you cannot clearly see them.
The last thing she saw
Christy and Josh had been trying to have a baby for years. Their dreams of parenthood came true on their second try at in-vitro fertilization. They had been married for six years; Christy is an elementary school teacher, so the due date of the baby—June 13, 2010—was perfect: Christy would have the summer to bond with her newborn.
It was May 27 when everything Christy and Josh had ever assumed or been told about parenthood would be challenged. Christy had been on partial bedrest with preeclampsia, which is pregnancy-induced high blood pressure. That day, a Thursday, she wasn't feeling right and at first thought maybe she was going into labor. Then she started having sharp pains—pains in her chest; pains that made her struggle to catch her breath. "It felt like I was being stabbed with a knife over and over," she said.
Emergency room doctors determined Christy had pancreatitis, an inflammation of the pancreas. Alongside that she was having a placental abruption, meaning her baby's placenta had become detached from the uterus. Christy was going to need an emergency C-section.
In all of the events of that day, Christy remembers mostly the pain and the fear. She remembers her family being there for her and her husband being told he would have to wait outside while doctors tried to save Christy and their baby.
And she recalls this: looking up from the operating room bed at the anesthesiologist moments before she would be put to sleep.
"I don't know why but I told him to wait—that I was wearing my contacts. I remember hearing that you shouldn't wear contacts in surgery. It's silly, I know.
"He asked me, 'Are your contacts disposable?' and I told them they were. He asked if he could just throw them away and I told him, sure—that I could just have someone bring me my glasses when I woke up."
That was the last thing she remembers before she lost her eyesight and found motherhood.
Emeline Joy—"Emy"—was born at 11:27 that night. For 15 minutes she was critical, unresponsive from the trauma of the delivery. Meanwhile, Christy herself was in critical condition, still suffering the effects of the pancreatitis.
A doctor's assistant told Josh he might lose them both.
"There was a three-hour timespan that night that I thought I might be going home from that hospital alone," Josh said.
By morning, though, Emy began to grow stronger, but still was in neonatal intensive care. Christy stabilized, but still was weak and in pain as she underwent a procedure called plasmapheresis, in which the plasma was removed from her body, cleaned, and returned. That procedure was meant to help remedy her pancreatitis.
And then there was this: She couldn't see.
"I didn't know what was happening," she said. "I could see only shadows and shapes. My dad came into my room and I remember asking him, 'Why are you wearing a shroud?' He looked, to me, like he was draped in black."
A retinal specialist diagnosed Christy's vision loss as Purtscher retinopathy, a sudden loss of vision from a loss of blood flow to the retina. There are three common causes: high blood pressure, trauma (including traumatic childbirth) and pancreatitis.
Christy had all three.
Purtscher's is so rare, no studies or statistics exist to measure just how many people are affected by it. There is no treatment.
But amid the chaos and the pain and the doctors and the unfamiliar names of diseases, there was a mom and her baby girl.
The day after Emy was born, Josh pushed all day for his wife to be able to meet their daughter. That first meeting happened when Emy was about 18 hours old.
Christy remembers Josh bringing Emy to her; she remembers feeling her but not being able to see any of her features. "I could barely see the outline of her nose," she said. "But that's when I started to turn the corner—started to fight."
Christy would spend the next three months in and out of the hospital. Josh took Emy to work with him every day; he is executive director of the Macomb Family YMCA. When he came home at night he cared for both of them.
'I literally could not take care of her'
Being a first-time mom is overwhelming. But what happens when you are a new mom who is sick and learning to live with an unexpected disability?
Christy shakes her head now when asked about postpartum depression: for her it was an understatement.
"A lot of moms struggle with whether they will be able to take care of their babies," she said. "But I literally could not take care of her.
"I remember when she was 3 weeks old I was left alone with her for just a few minutes. She was sleeping and Josh went to the store to get one of my prescriptions filled. She woke up and started crying and I just flipped out. I couldn't help her. I couldn't pick her up."
It was five months, Christy said, before she really felt like she bonded with her daughter.
"That is a horrible feeling as a mother," she said. "I had wanted her forever. But to have a baby you wanted so much and to not be able to take care of her?"
Eventually they got into a routine. Christy learned to make a bottle that Josh had pre-measured for her. She fed Emy early in the morning and they fell asleep together in a rocker for two hours. Christy called those beginning months "survival" mode.
Her vision improved, little by little.
"I knew I had to be strong for her. I had to make sure she knew me. I wouldn't ever have wanted her to grow up and think she had a mom who had given up.
"That's what kept me going."
A teacher returns
In the fall of 2010 Christy was referred to the Michigan Center for the Blind to learn how to regain her life–and her career. She lived at the Kalamazoo school for eight weeks, taking the train home on weekends. She learned Braille, and other tools to help her cope. She started a blog.
Slowly, her vision improved to what it is now: about 20/400 in her left eye and about 20/80 in her right. She describes herself as "blindish" seeing the world through "smudged glasses," but the smudges are more like lines or stripes than spots.
In the fall of 2011, she returned to her fourth-grade classroom at . Christy uses a special TV to magnify her students' faces or their homework. She works part time, sharing the classroom with another teacher, because after four hours her eyes are exhausted.
To a visitor in the class, one of her students says, "Our lights are brighter than in other classrooms." Another adds, "We have to type our poetry in 18-point font." They are accepting of their teacher, and she, in turn, has a new appreciation of the struggles some of them have to read and to write.
"I know what it's like to be a beginning reader," Christy said. "A lot of times I find myself guessing at the ends of words, so now I can relate to them and help them through it."
A mom reflects
"I never thought of myself as the type of mom who would hover," said Christy, 32, a lifelong Rochester Hills girl and 1998 Adams High School graduate.
And she's really not the hovering type, deep down inside.
But when she and Emy are playing outside or going for a walk or doing most of the things a mom and a toddler do together, Christy is forced to hover. "I have to keep Emy within two arms' length or I can't see her," she said.
Christy worries that they'll go someplace and Emy's face won't be clean. Or that someday she'll get a splinter and she won't be able to see it well enough to get it out.
But she doesn't want her vision impairment to define her. Rather, she wants it to empower her to help others.
"As a teacher, I never have defined students by their disabilities or by their weaknesses," she said. "I don't want to be known as the blind mom. I want to be just a mom. I know now that that can be possible."
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