Before we share our experience of raising a daughter with Down syndrome, we would like to share a brief history of our lives. We were married on July 6, 1991. On August 20, 1992, God gave us a beautiful daughter, Melodie Michelle. However, her time with us was very short as she died of SIDS (Sudden Infant Death Syndrome) at the age of 13 weeks. Though it was a difficult time for us, God was faithful in comforting us and giving us peace.
Ten months later, God gave us our second daughter, Jessica Felicia. She was born with Down syndrome. The day she was born was a bitter/sweet day for us. The doctor informed us that she had Down syndrome right after her birth. We were devastated by the news – our first born, had been perfectly healthy and then taken to heaven; now God was allowing this other trial in our lives. It was again a time of mourning for us – mourning that our daughter would not be “normal” but tagged with “Down syndrome” all her life.
It helped to be surrounded by friends – however, a number of couples at our church were expecting around the same time as us, and it proved to be very hard and challenging over the next year as we watched their “healthy“ babies grow and do things way before Jessica could; her progress was much slower. However, over time, we learned to be thankful for each new thing she learned to do and celebrated each milestone! We came across an article shortly after Jessica was born that expressed it beautifully: they compared Down syndrome to a symphony but with a slower tempo pace. The notes are all there but played in “Andante” slightly slower BUT just as beautiful. We prayed for Jessica’s health and God answered our prayers.
She became a high functioning young girl. Every therapist that saw her eventually closed her file because she exceeded their expectations for her. When Jessica was two years old, we had our third child: a very healthy and active son, named Joshua. It was good for Jessica to have a sibling and for a number of years they spent a lot of time together. Joshua soon surpassed Jessica’s skills and abilities and would teach her new things (or get her into Trouble!!!)
However, somewhere along the line, we noticed that Joshua started to withdraw more and stopped hanging out with Jessica. He started having his own friends and would then put Jessica aside and ignore her, which was hurtful to her and hard for us to see. Jessica was a very happy and very loving child. We decided that it would be best to integrate her with other kids at school instead of sending her to a special needs school as we wanted her to be stimulated as much as possible.
This proved to be a challenge throughout her schooling, but especially in high school when kids at school would bully her. Other challenges were that she was often left out of party invitations amongst her classmates. At times, we had our hands full, as she was very Persistent/stubborn in her ways. We learned that this can be a good thing and a bad thing, so we had to learn to teach her to use it for good, but also to recognize the ways that are bad, so that she would understand the differences between right and wrong.
Our goal has always been to try to treat Jessica as ‘normal’ as possible, which meant giving her consequences for her good and bad behavior, etc. With God’s help she has become a very sensitive and caring person. About 5 years ago, she was awarded the “Lieutenant Governor Award” for service to the community. (The purpose of the Lieutenant Governor’s Medal is to recognize the involvement, determination and Constant striving of people who have or have had a positive influence in their community).
In October 2016, as a result of Jessica wanting to be involved in a missions trip, we came to India to volunteer at Pandita Ramabai Mukti Mission, a home for destitute women and children, for a period of two weeks. Jessica had such a huge impact on the orphans and widows. We felt called to come back for a longer period and are now serving for 10 months. One of the big decisions for us to make was when to tell her that she has Down syndrome. Because she was very high functioning, we wanted her to be aware of it and not hear it from other people (from a negative perspective, using words like “retarded”, “stupid”, etc.).
Now you will often hear Jessica express how happy she is about the fact that God gave her Down syndrome.
She sees it as a special gift and lives her life to the fullest, touching people’s lives wherever she goes, holding nothing back. She is an example to how we all should live our lives! Also, our definition of ‘normal’ has broadened; we now believe that there is no such thing as “normal” but everyone, in one way or another, is unique and we all have special needs in our own way. We just celebrated the World Down Syndrome Day– this is a time for us to celebrate Jessica’s uniqueness (and others like Jessica)!
We often hear her say with a big smile on her face, “I have an extra chromosome and I know how to use it!”
We are also involved in Special Olympics in Canada where Jessica is part of a Down Hill Skiing Club with a number of kids and young adults with different needs. Jessica has now been part of this club for 12 years. We have seen kids gain confidence through that initiative and it is a very special time for us as well as the athletes to get together and have some fun.
As we write this article, we realize again how our path has been very different from what we would have anticipated when we got married 27 years ago. However, we are so thankful God has been faithful and guided us at every turn. We have never felt alone in our day-to-day lives and cannot imagine our lives without our three children, one of whom is waiting for us in Heaven.
Great post!