If you have known me for pretty much any length of time, you have also heard about or met my sister, Rebekah. I get asked about her all the time and I am always happy to answer. People are naturally curious and what to know, and instead of being uncomfortable or awkward, I would rather be an open book. So, if you didn't know that about me, now you do! I am an open book, if asked a direct question I will always answer it honestly. Always. I may not give all the details, or all of the thoughts in my head, but my answer will always be the truth you can count on that.
Rebekah is my older sister. She was born with profound disabilities. While our mom was pregnant with her doctors could tell that there was something wrong with her and that she was very sick but they didn't know exactly what the issue was. They could tell that her lungs were not developing and that she wasn't growing within the normal ranges. They were also certain that she was a boy...
Our mom's water broke and she went into premature labor very early. Doctors encouraged my parents to preform an abortion because they were certain that Rebekah would not survive. That she would not be born breathing. So instead of prolonging the inevitable, they suggested that an abortion was appropriate. Our parents believed that it was God's decision if Rebekah should live or die and refused the procedure. So our mom went on bedrest despite the fact that she had two small children at home and a slim to none chance of saving her baby's life. Rebekah held on until she was over 4 lbs but was still born 4 weeks early. When she was born breathing doctors said she wouldn't last 24 hours, then after 24 hours they said a week, then after a week they said a month, after a month a year, after a year they were certain that she wouldn't make it to adulthood.
It is a miracle that Rebekah is still here today. She has muscular dystrophy, epilepsy, profound mental retardation, a lung disease, and she is deaf. In the last 5 years she has also been diagnosed with OCD, Pica, and obstructive bowel syndrome. As I'm sure you can imagine, she has a very complicated medical history!
When she was born, she stayed at Children's Hospital until she was three. For three years doctors and nurses took care of her around the clock. She was on a ventilator and had a feeding tube when she finally came home and some of those nurses came with her to care for her in our home. When Rebekah was 7 years old she was finally able to breathe and eat on her own, once she had more freedom from not being attached to breathing machines and feeding tubes she learned to walk on her own! I was too young to remember, but I am sure it was an exciting time in our house. She had defeated all odds and was getting way more out of life that anyone ever expected. Not only that, but there was so much more freedom to get out of the house and do things as a family.
Now Rebekah is 34, she can feed herself food with a fork or a spoon. She can walk with an unsteady gait, dress herself, and get herself water from the sink. Years ago her cognition was tested at about a 20 month old level, but I feel that she has been on a slow and steady decline over the last 10 years. She doesn't do as many activities, and she is not communicating like she used to. She uses one sign for drink, but I don't always think she is asking for a drink when she signs it. She doesn't play with toys or puzzles anymore like she used to and she is more often in a state of blank stares. She spends her days at St. Madeline Sophie Center. They pick her up at our house at 6:40am and bring her home at 3:30pm. She seems to enjoy visiting there daily, although we really aren't sure what she does there.
Rebekah's biggest challenge at the moment is that she has developed pica so she will pick up random objects off the ground and swallow them. We have to be extra diligent to keep her in areas where she is safe. It is a challenge that we don't take lightly.
Rebekah has lived with us for two years now. We are happy to have her and I think she is happy to live with us. When prompted with this week's challenge of children's laughter I assumed that I would grab a picture of my kiddos giggling. But then Rebekah came home from her program one day laughing her head off (which isn't very typical for her anymore) so I grabbed my camera and sat her on her bed to get some special pictures of her cracking up. She is a child at heart, so I felt that this was still on topic with the prompt. It isn't often that she laughs this way anymore, so I am happy I was able to capture these expressions.
It would literally take a novel to fully describe Rebekah's life and ailments. If you have ever wondered something about her let me know! I'm always happy to educate people on what it looks like to do life with a sibling with a disability.