I guess I am one of the older moms contributing to this website – my daughter Amy, who has Down Syndrome is 20 years old. She is our youngest child; Josh is 25 and Zoe 23. Since we are obviously well past the ECD stage of Amy’s life I thought I would write a list of some of the things I have learnt so far on my journey with Amy.
- First and foremost, Amy is my deeply loved daughter – a precious member of our family with dreams, worries, joys, cares, and difficulties just like our other two children. Then, yes, she happens to have Down syndrome.
- Even though all my prenatal tests were normal, I knew deep in my soul, even before I got married that I would have a child with Down Syndrome. Not a child with cerebral palsy or spina bifida or autism – a child with Down Syndrome. My first reaction when the paediatrician voiced his concerns straight after her birth was, “So, I was right”. As a result, I know without a doubt that Amy is meant to be part of my journey and I part of hers. There is a much bigger picture than the one that I can see.
- Amy teaches me things every single day – she has an understanding of some of life’s issues that I envy and can only aspire to.
- I have seen that there are people who are capable of unthinking cruelty towards her, but far more often I have seen people who are capable of overwhelming kindness. Without a doubt people are kinder to Amy than they are cruel.
- I have learnt that people with Down syndrome are as unique and individual as the members of any other group of people. Generalisations are usually cliched and tend to deny the individuality of the human being who has the syndrome.
- The fact that Down Syndrome has easily identifiable physical features is both a blessing and a curse.
- I have learnt to believe in the power of expectations – When Amy was young I read about the “Einstein Syndrome” and since then I have always expected her to behave and to be able to do what her siblings and peers can do, until she proves me wrong. Then I will re-evaluate and accommodate. People live up to or down to your expectations – children with Down Syndrome are no different.
- All those unknowns that I stressed about while she was a baby have resolved themselves – yes, she has learnt to read and write (her cursive is neater than that of either of her siblings), yes, she learnt how to count, (she even learnt how to do long division and algebra), yes, she learnt to dress and wash and feed herself, but there are still unknowns. The only thing is that now the unknowns are true for millions of parents with children. Will she find someone to share her life with – to love and care for her as much as we do? Will she find a job that stimulates her and makes her feel worthwhile? Will her health become a problem? She is more alike than different.
- Sometimes it feels like Amy is my secret superpower – she gives me insights into the nature of other people that few other experiences do.
- I have learnt that most the life lessons I am learning because of having a daughter with Down syndrome are lessons learnt in joy – and for that, my gratitude is unlimited!
- I have learnt that without a doubt I am one of the lucky ones!