Today on World Down Syndrome Day, we have an interview with a mother of a girl with Down syndrome, the child is 5 years old and has such a sensitive, intelligent, simple and generous mother.
This mom gives her time to tell us what it is like to be a mom of a girl so special and beautiful, with a personality that sweeps away, a smile that melts and a heart that conquers.
How did you find out and how far in the pregnancy were you when you knew your baby girl had down syndrome?
It was trough blood work, a genetic test was done that revelead a positive result of Trisonomy 21, down syndrome. This was very early in pregnancy in week 13.
Did someone recommend you not have it?
More than recommending, it was the repetitive question: Will you keep the baby? Are you going to continue with the pregnancy?
Many of these questions were during medical exams and people in the field. They do so because it is a legal option to terminate the pregnancy in these circumstances and feel obliged to offer it.
Statistics have shown that 8 out of 10 women with positive results decide to end the pregnancy. It is important that in this sense both parts, the medical field is better trained for this type of diagnosis, as well as expectant mothers receive more information.
How was your pregnancy?
Pregnancy itself is like any other, the same nausea, cravings and sensibilities.
With the last been said, it did come with more emotional pressures and uncertainties. Several testings and medical checkups and in more frequency were in place. In a way, they were overprotective, but the goal was to retrieve more information and provide the best possible care.
I did have my babyshower, maternity pictures and was so looking forward to meet my first-born.
Did you find support, empathy, solidarity in the community and other moms groups?
The most important thing was finding support and acceptance from my family. That was my starting point. Knowing that people that are close to us will always love us and will be there to help. Love and solidarity have really been a core element that fill us with strength.
I must say that I have also been very privileged to have mom groups who have become like family. The affection that we share is a very particular connection because we know our feelings, concerns sometimes without the need to talk about them. They are a great reference because we are here to support, advise and give us the necessary suggestions in each new stage of the way. Moms with older children give us advice to those of us who have little ones, and we pass on to new moms and so on.
I can also say that in the state where we live we have many benefits, there is a particular group called Massachusets Down Syndrome Congress that is dedicated to give support to people and families with down syndrome. They constantly seek to create greater opportunities and laws that benefit in education and health to this community.
How was the first look, the first time you had her in your arms?
I forgot everything, any fear and concern was vanished. The only thing I saw was my daughter, my beautiful daughter. A mother was born with Chiara and with her all the unconditional love. Nothing was more important than the connection and love of the moment.
What would you say to the community in general what it means to have a daughter with Down syndrome?
Above all, it is learning what Down Syndrome is. Every mother and family needs to receive the same «congratulations» when their baby is born. It is not something sad and there’s no need to a “I’m sorry». We are ordinary families, like everyone else just with other challenges and different timings.
Learning that differences enrich us as a world and society, that inclusion and empathy should be part of our way of being. Because we are more similar than different. People with syndrome have the same dreams that everyone else, they want to be happy, loved and accepted. My little girl now plays with the same things as any girl her age, enjoys school and friendships, loves princesses and wants to learn to be a ballerina.
What would you say to a family that is about to have a child with Down syndrome?
Having a son or daughter with down syndrome is a blessing. It is a different path to the one that sometimes was expected, but there are more beauties and joys than one can imagine. Small achievements become great satisfactions, one appreciates more the efforts than the results. Sometimes it is the children with down syndrome who teach us more to the parents than vice versa. They are affectionate without discrimination, they have the strength to overcome every challenge and obstacle, perseverance and determination are natural and so much more. Life is enriched much more because one values things from another perspective.
Dedicated to my best friend, who has a beautiful daughter, my niece Chiarita