What do you do when you are pregnant and find out your baby has Down syndrome or that he or she may be born with another disability? What do you say to people who see you are pregnant and congratulate you and talk about how excited you must be – when actually you are still coming to terms with being told your baby will not be what you expected? I think every parent does and should handle this in his or her own way; here is how I came to accept and embrace the fact that our son had Down syndrome.
The morning I found out our baby was going to have Down syndrome, my husband came home immediately from work. When he arrived, I was at the front door with my coat on saying, “We are going out”. I thought to myself if I am in public, I won’t cry. Although very sad, my strategy worked and I did not cry (yet). We went to our favorite local and familiar café. There we sat, speaking very little to one another – just eating our comfort foods. He gave me warm smiles and occasional winks, with his familiar reassuring look telling me everything was going to be okay. But was it going to be okay? I was not sure.
The next day, I went for a walk and passed a young woman with Down syndrome. She was smiling, walking alone, carrying her shopping and talking to herself. She looked happy, independent and safe in our small community. But there and then - I cried – did I ever cry. Was this the future for my child, and if so was this a bad thing?
As a parent, you want your children to grow up, be healthy, and live strong, happy and independent lives. The little knowledge I had of Down syndrome suggested this was not going to be the reality for my son. As I continued my walk and gathered my emotions, I concluded that I must find a way to have those same hopes and dreams for my unborn son that I had for his older brothers – but with the best understanding possible of what Down syndrome will mean for him and our family. I did not try to fool myself in thinking this would be easy, but I knew I needed to find the strength to come to that place of acceptance.
The hospital put me in touch with another parent who was happy to speak with parents who had just received a diagnosis. I was nervous about calling her, as I questioned my ability to speak with another mother without becoming overly emotional. I felt raw and vulnerable, but I knew I would find it helpful and I made the call. She was immediately warm and friendly, and invited me to her home to meet her son and hear her story. When I walked in her front door I was greeted by her generous smile, and one of the most beautiful little boys I have ever seen. She beamed with pride over his many accomplishments in his first two years, but was honest with me about the emotional roller coaster she and her partner had been on and the challenges they had faced. It was an emotional visit, but I left her home feeling uplifted and inspired.
I then turned to books and the Internet to help me understand more about Down syndrome. Some sites were helpful, while others were not. I learned quickly which ones to avoid, and the ones that kept drawing me back. I found reading books and blogs written by other parents of children with Down syndrome most valuable. They helped me to see that despite some inevitable challenges, and some possible health concerns, raising a child with Down syndrome could also be enriching and life changing.
As I came to accept my new reality, I needed people to know our child had Down syndrome. I did not want people to see him when he was born and wonder if there was something ‘different’ about him. I told family and friends immediately, all of whom were very supportive. When people asked how things were going with the pregnancy, I told them. One person was quick to tell me that “they sometimes get it wrong” and the baby may be just fine. I assured her my baby did in fact have Down syndrome and this was okay. Some people were shocked by how candid I was, but most had only positive things to say about my raw honesty.
Every parent needs to figure this one out for themselves. Learning your baby is not going to be what you expected hurts. You grieve what you think you have lost or what might have been. You are fearful of what the future holds for your child and your family. You worry about their health, you worry other children will bully them; you worry if they will ever be able to live independently – this list could go on. In my case, I experienced all those worries and I still do – but through reading books and blogs, speaking to other parents, becoming friends with other parents, joining the Down syndrome community, and leaning on my family and friends, I have come to peace with it.
I came to embrace the fact that our son would have Down syndrome and prepared myself for how this would change my world in so many new and wonderful ways.
Jennifer Crowson blogs regularly for DSRF.