Lessons From a Little Girl with Down Syndrome
1)Enjoy the moment
For a long time we were in and out of hospital with our little girl. She also went through a lot of pain with many blood tests, drain dressings, nasogastric tubes being put down and then all the treatments for her blood clot. It was also a painful time for us emotionally never knowing how long we would be in hospital or out of hospital etc. But I watched Lydia. She would cry when she was in pain. But the minute it was over, she was happy. She never knew when pain would come next, but didn't live in fear of pain. She enjoyed the moment.
One day in hospital the nurses had to do painful things to Lydia. And yet when it was over, she was smiling at them. They commented, "She is so forgiving!"
3)Don't feel sorry for yourself.
Lydia has been through more than the rest of us put together. She is the only one of us who has had a million blood tests or who has been in hospital as a baby (other than being born). She is the only one who has had a major surgery. She is the only one who has had a rescue helicopter ride, ambulance rides and life flight rides. But guess what? She is the happiest one in our house! She makes us smile and laugh every day.
4)Don't nurse anger.
One of the times we took Lydia home from hospital, she had a blood clot I had to treat twice a day. Even when Lydia was in a deep sleep, she would cry out in pain. Giving her the injection stung. Since we were at home, I had to give it to her. I hated that, and yet because I wanted it to heal, I had to do it. What mum likes to hurt their baby? Lydia didn't understand that she needed it, and she had every right to be angry at me. But she never showed any anger towards me. Through her I learned not to be angry at God, who allows pain for a purpose.
5)Patience and Perseverance pays off
I have never had to work so hard to get my child to a milestone as I have Lydia. She was tubefed for a year and it got to where I thought she would never get her tube out. But by trying over and over and over again, we eventually got there. She had to practice sitting up for a few months before she finally learned how to do it by herself.
6)People with disabilities are nothing to be afraid of.
I used to be scared of people with disabilities or with Down Syndrome. I didn't really know any personally growing up. I used to find them scary because I never knew what they might do. I remember a lady at the park with a mental disability--she tried to take my coke off me because she loved coke! But now since Lydia has joined our family I am afraid no longer. Instead I am fascinated!
7)Sometimes its good we don't always have a choice.
I would never have chosen to have a child with Down Syndrome. I wasn't even afraid of it, because I never expected it. I would never had chosen to have a child that needed a lot of hospital care. And yet, I'm glad that it wasn't my choice. I would have missed out on so much if we hadn't had Lydia. I would never choose all the hardships that have come, but I also wouldn't swap it because it has been so good for us. It has changed us for good, it has strengthened our trust in God and... Lydia is priceless!