Mothering Special Needs
Contributing post: Lynn Markos
As the phone rang that afternoon, I was quite nervous about the news coming from the other end. It was a scheduled phone call from my genetasist. She was calling with the results of the amnio just a few days earlier. My head throbbed as the room spun out of control when she uttered the words “Mrs. Markos, it is a baby boy with Down Syndrome”. The fear of the unknown came over me as I began to cry uncontrollably. How can this be? I was the healthiest person I knew. Millions of questions ran through my head. How would I care for this child? Will he have physical issues that I might not be able to handle? How would society treat him? Who would care for him when I die? I kept thinking, how do I tell the other children? Oh dear God, how do I tell my husband?
I immediately called my daughter, who at the time was 20 years old and on her own. She could tell something was wrong as I was gasping for breath and finding the words to express the news. I finally found it possible to utter the words, “The baby has Down Syndrome”. There was a pause on the other end of the line. Then calmly, as if she was the mother and I was the child, she said “Oh Mom, what is the matter? We will love him anyway”.
From the mouth of babes. That was 2 1/2 years ago. Now I sit and look at my wonderful little bundle of unconditional love and realize he was not a curse, he was a much deserved blessing. I once had someone tell me she was sorry that I had a child with Down Syndrome. I told her I was sorry she did not. I have learned through the last few years that children with Down Syndrome are God’s way of being with us on this earth without us really knowing it is Him. I suppose the most surprising thing was how “normal” Cam was. He ate like a baby, slept like a baby and even pooped like a baby. He just had something a little extra special.
Now, let’s not sugar coat the challenges here. Cam has had his share of them, as have I. While he never has had the typical physical health issues that 50% of children born with Downs have, he has struggled with respiratory, ear and sinus issues. He has spent his share of time in the hospital with RSV and Pnuemonia. Worry and concern are a constant reminder when he gets a cold or sinus infection. He is most definately independent and his own person. I have found that most children with Down Syndrome know what they want and they won’t give up until they get it. The adjustment for our other children was surprisingly easy. Cam is the result of a second marriage. I had 3 from my former 20 year marriage and my husband had 2 from his former 13 year marriage. Cam became the glue that tied us all together. The common brother to both sides and we all adore him.
I reflect about how sweet tender mercies have occured that prepared me for Cam. Years before Cam was born, I had approached my first husband about having another child. He was quite certain that he did NOT want another child, as he was certain that it would be born with a handicap. He stated that I could handle it and he could not. He then proceeded that week to get a vacectomy without my permission to assure another child would not be possible for our family. I was devastated and within 5 short months we were separated and on our way to a divorce after 20 years of marriage. A few month into our separation, our 14 year old son was hit by a car. He was life flighted to Primary Children’s Hospital and I was told to call the family and prepare a funeral. I prayed ernestly as I drove to Salt Lake City for him to hold on until I could be there to say goodbye. To everyone’s surprise, Weston overcame his challenges and started a two year recovery of learning how to eat, bath, talk, walk, and all the milestones that a feeble toddler learning the challenges of childhood gets to learn. Weston was then diagnosed with a TBI – Traumatic Brain Injury and would forever be changed.
When Weston finally was able to communicate, he shared with me that he had not been at the hospital the month he was there in recovery. He began to tell me of an experience in which he walked and talked with God. He shared how he had to make a deal with God to return to earth. He was not sure what the deal was, but it must have been good enough for God because he was back. I got to learn how to navigate his needs both at home and at school. I got to learn how to lobby for his student rights with a 504 program and special accommodations to help him succeed at school. I learned how to adjust to the impulsivity and the persevering of thoughts. I also learned a lot of different ways to reason and compromise. And of all, I learned to be patient. It was baptism by fire, that is for sure. It was a time in my life that is vague but I remember the sweet lessons of faith and perseverance.
When Weston saw Cam for the first time he gently took him in his arms and examined him as if he knew him. He then looked up at me and said, “This was my deal with God, to be the big brother to this little guy”. The hair rose on the back of my neck as I realized all that had transpired from the moment my first husband decided to go against what he knew God wanted him to do. Everything from the beginning of the divorce, the accident, the struggles, the learning how to cope with a child with a disability all suddenly fell into place. I had been trained years before Cam’s arrival. I had been chosen to raise this little angel on earth and nothing was going to stop the Lord’s plan, not even a husband who chose to take the right of motherhood away from me.
So you see, as life hands me opportunities to stretch, I no longer question what it is all about. I know in my heart that all things happen for a reason. This life is about training and learning and being willing to accept and rise to the challenge of what we are blessed with. Some of us are blessed with cancer, some of us are blessed with wayward children, some of us are blessed with drug abuse and alcoholism. NO matter the blessing, the commonality of it all is that we are to learn and trust the process of who and what we already are. We are powerful beyond what we could ever possibly imagine. Perhaps the mysteries of life are not for us to question, but to embrace and step up and take on. After all, if I do not rise to the occaision of my opportunities to stretch, who will.
Weston now lives with me. He is 20 years old and has his own opportunities to stretch with his TBI. Motivation, focus, long term planning, imulsivity, quick to anger as well as unconditional love, acceptance and knowing who he is and what he is here to accomplish are all the wonderful opportunities we have to stretch beyond our comfort zone. Cam is thriving and forever teaching us of unconditional love and living in the moment. Communication with Cam only happens through sign language at the moment. That may change, but for now, we have the oppotunity to stretch and learn how to sign. Our other four children are healthy, strong and yes, have their own mysteries of life to stretch and learn.
I suppose what I know beyond and above all things is this….
God has a plan for each of us.
Motherhood is an honor.
I am so blessed that I have been chosen to have six beautiful children who are all individual in their own space.
I am especially blessed to have two of those children be as pure and loving as God himself.