Dear beautiful Ruzan,
Do you know how deeply loved you are? You are a precious woman.
I imagine things are really unclear at the moment for you. You seem to have a lot of haters. I want you to know, that there are some who do not hate you. Many would like to sit with you and hear your side of things. No judgement, just listening ears. I would bring a box of tissues for us to share, if needed.
I feel immense sorrow over the decision you were faced with after nine months of protecting your son in the safety of your womb. Dreaming of how perfect, and beautiful he would be. A boy! Of course he would be perfect and beautiful, he was created by the combination of your DNA and the man you married. His little body was formed from your egg, filled with your genetic coding.
You endured all the joys and pains and ailments that come with pregnancy. You experienced hormone fluctuations, probably morning sickness, re-flux, strange food cravings, discomfort, swollen ankles, a protruding belly that made sleep uncomfortable, lower back pain. You probably also had expectations of looking over your child to count his toes, look at his eye and hair color. You may have anticipated bringing him to your breast to nourish him with the milk your body produced, just for him. Wondering what his first words would be, celebrating his first steps…
I suppose you were in shock, as all mothers would be, that what you had imagined and hoped for nine months, and after hours of labor and pain to deliver your child, he wasn’t what you expected. You just experienced hard labor, blood, sweat and tears and you were expecting a child to hold and love that everyone around you would accept.
Instead your body brought forth a son with extra chromosomes. This is not what you expected. The doctors and nurses were concerned. I bet there was less joy in those moments than you imagined.
I was not there in the delivery room with you. If I had been, I would have cried with you over your dream not coming true. You need to grieve, the loss of what you thought would be, and have time to accept what is.
I would have held your hand, if you wanted me to, as doctors explained to you, what they determined, in their professional opinion, what you should do. I imagine you were under a great deal of pressure. Doctors, professional doctors, were telling you what to do. Maybe your parents and other family members offered their opinion. I also imagine you may not know of many other children with disabilities and were under-informed. Oh, how I wish there were many voices letting you know other options. I wish your community embraced people with disabilities, had support systems in place. I wish that was your reality.
I imagine this because worldwide an astronomical amount of children born with disabilities are left to die, killed, or abandoned. In countries with ultrasounds and legal abortions, 93% are terminated before they finish developing. It seems your husband may have been the only one who was thinking differently. How hard that must have been on both of you. A possible single voice for his life and a multitude of professional and family voices against his life.
That must have been hard. Really hard.
I grew up in Fort Collins, Colorado, in the United States of America in the 1980’s. In a mostly white middle-class neighborhood. Everyone in my elementary school was pretty much the same. No one in my elementary had visible disabilities, not even a wheel chair.
Two blocks away from us a family had adopted two girls with Down syndrome. But we were instructed not to play with them. I was scared of them,because they were different, and was told not to play with them. I concluded in my ten-year old brain that they must be mean, or scary or harmful, since I wasn’t allowed to play with them. I thought I must be better than them, since I had to stay away from them. I formed an incorrect belief system at ten-years old. No one told me it was not correct. No one offered me a different perspective, until I became pregnant with my daughter in 2001.
Growing up, our family lived on the corner of a street. When I was a bit older than ten, the street perpendicular to ours had a house for sale. The people buying it wanted to turn it into a group home for adults with disabilities. My parents were vocally against this. Most of the parents of my friends were also against it. It seemed no one in our neighborhood wanted this house to be sold for “animal like people to live in.”
If all the grown up’s were against it, then surely, something must be wrong about it. Why would all the people who protect us, be against it, unless it was dangerous or scary? When the home was approved as a group home, we were told not to go near it.
I remember a man once ran out of the house naked. I was scared to death. He was mentally impaired and apparently liked to run naked. On a glorious occasion, he slipped past his caretakers and went to the “forbidden outside.” As a child, to me, this was disturbing.
Now, as an adult, with a child who has Down syndrome, who likes naked time, I chuckle at how free this man must have felt. After-all, the neighbors didn’t want him there and he was caged inside a house 24 hours a day. Run, Forest Run!
My mom worked for a while at the High School I attended. She was a para-professional and worked in the self-contained special education room. The students in her care were mostly kept in their room. We didn’t see them, except in the cafeteria. They existed in our school, but not as a part of our school, or student body. They were “them” not “us.” They had their own table in the cafeteria. We were scared of them, because they made strange noises, and drooling was uncontrollable for them. But not for us. So we wrongly concluded they had no manners. My mom would come home on occasion and complain about her job. She had to change diapers of teenagers, who didn’t have bowel control. She had to feed them. She didn’t think their parents should send them to school for “babysitting” if they “couldn’t even learn.” She told us her opinion, that those parents were just lazy and didn’t want to take care of their own kids, so they sent them to school. To me, she didn’t seem to have too much respect for parents of kids who were different.
Ruzan, I think I could sit with you in your pain and fear.
All I had come to believe, before my daughter was born, was that people with disabilities, including Down syndrome, were to be avoided, were “less than human” and scary. Not many of them were visible, included, seen. Parents of children with disabilities were lazy and couldn’t parent, and their kids ended up isolated from other kids their age, in classrooms, or institutions with caregivers, some of whom, despised their jobs. (This is the opinion I formed, based on my experiences. I cannot speak for my mom, or others, if this was their real opinion. This was my interpretation.)
Imagine how I reacted, at 20 weeks pregnant, when an ultra sound revealed that I was going to be “that parent” with “that child”. My husband and I were told we had options, including aborting our daughter. Some professionals thought that was a good choice. The woman performing the ultrasound, stunned us, in the moments of getting the news, that she had chosen to abort her child that had Down syndrome. In my less than humble opinion, that is not the way to speak to parents finding out news of this size.
Ruzan, I think I can relate to the fear and pressure you have been under. And I want to say, I hear you. I am so sorry for the pain, pressure and decisions you have been forced to bear.
Because of my daughter, my husband and I and a small group of dedicated folks, founded an organization. Originally is was named after our daughter, now it is named Made Known
As I, and other passion filled people, have traveled to India, Haiti, and Sierra Leone, countries with underdeveloped hospitals and support systems, we see that there are few options and far less support for mom’s, parents and families in our situations. I have never visited your country and I do not know your culture or your personal or religious beliefs. So, I cannot comment.
I have held children that have been brutally harmed, cut, beat and with bodies bearing scars, because others (incorrectly) thought that by this type of torture, the child would be released from a disability or curses. I have seen orphanages full of “discarded children.” My heart breaks for the women, who given a better support system, better information, could have tapped into their motherly nurture that says, MY KID MAY BE DIFFERENT BUT I CAN LOVE HIM AND KEEP HIM, BUT I NEED HELP, I CAN’T DO IT ALONE.
Ruzan, I do believe you may want to love your son, and possibly do. But I think the voice of fear is much louder. I believe that you trust the doctors and professionals. What they say, may be contrary to what your heart as a mom longs for. Maybe, you did what you did based on the facts in front of you. I argue that the facts, may be false. But, that is my opinion.
I think you have faced unimaginable pressure. Globally, the world has not included disabled, handicapped, special needs people, as people. The odds are against us as mothers who have been given a child that is different. I am so sorry for the place you found yourself after delivering your child into a world that wants to reject him. I am so sorry for the hard decision you had to make.
Globally, people with disabilities have been rejected, aborted, abandoned, left to die alone, hidden in the backs of homes because of shame, only loved in secret, mutilated, institutionalized, marginalized and basically been incorrectly labeled “Worth Less.”
There are small bands of folks trying to change that dynamic. We are trying to have people with disabilities MADE KNOWN in their families, communities, villages, and countries. There are many, but not nearly enough, compassionate filled organizations teaching moms, and families how to care for their children. If their community doesn’t offer care, or programs, or schooling, there are small organizations advocating to do that, one mom, child and family at a time. Sadly, the work being done has not reached the level that shouts to the world, dignity, respect, and love.
Ruzan, you are a powerful woman. You made a choice, from the information you were given. You also let your husband, Samuel, go to raise your son. That must have been so terribly hard. But, love wins! Your son will have life, and his father will raise him for you. Leo, whose name means “Lion” will know he is loved, he is valued. The name Leo was borne by five Armenian kings and I imagine little Leo will be kingly, too. He will spread so much unconditional love and purity to those around him, that his life will show the mysteries of God and God’s image to all who get to know him. Your ex-husband, his name is Samuel, his name means; “God has heard” or “Name of God.”
You chose a great name for your son. You are a precious, beloved woman, and child of God. God loves you deeply, He even knows your pain and wants to comfort you. I don’t know you, but I can say, I too, love you, the human soul of you, encased in a body of flesh. An imperfect woman, like me who knows hardship, being misunderstood, and placed in difficult circumstances.
To Samuel, go change the world for Leo! Let his life Speak LOUDLY, if even in the quiet seclusion of your home, neighborhood, doctors offices, and schools. May Leo be MADE KNOWN for who he is. I bet you didn’t think this story would go viral. But it has, and I believe, God has Heard, and that lion cub you are raising, will show you, those around you, and those of us that follow social media, how to ROAR!
Love and respect,
A broken but beloved-wife, mother, friend, believer, writer, and advocate.