The simplest of phrases or statements are some of the most elaborate because the rationale behind them is extensive. My best “YES” is no different. My rationale in choosing Down Syndrome is extensive, elaborate, and beautiful. Because Down Syndrome is beautiful and it always has been. But, I had to seek this truth out and look within myself. Sometimes seeking the truth and self-reflection is far more fearsome than the decisions we make because knowledge implores us to examine and change ourselves for the better. However, change and how it betters ourselves is only as valuable as the knowledge we seek therefore, the knowledge we seek must be well-rounded. Meaning, we must be able to examine within ourselves not only the positive things about ourselves that we like, but things that once were positive but now have become negative, in light of this well-rounded knowledge. Grappling with how you feel after this change is heart-retching because not only does it transform us but we have to sort out our guilt for how we thought or acted in the past.
Before I had my son who has Down Syndrome, I would like to say that I knew and understood what unconditional love is. I would have described it as love for yourself and your children no matter what they do or who they become.
When my son with Down Syndrome was born, a new world to what unconditional love opened up to me. One that on some level, I must have known existed. One that I think I had, but had not really sat down to ponder or verbally acknowledge it aloud. Through my son, I had such an enormous amount of unconditional love for him, like I did for my other children. However, there was something else there too. An indescribable love for him and the lives of others whom he touched. A love for other children who are just like him, a child with Down Syndrome. Then a love for people of all ages with Down Syndrome. Then a love for children with disabilities. Then a love for people with disabilities. I learned unconditional love is a love for community and society as a whole.
For you see, we can live through life classifying people on a spectrum or in a group, and say you are a person with condition A or a person with condition B. However, the truth of the matter is that these persons with conditions cannot be placed in a box to define who and what they can achieve. Often people will have condition A and B with a little C, but A is more pronounced than B and C, so we will just say this person predominantly embodies condition A . However complex, the truth is that there not exists a condition where a person fits neatly into one box. Had I not had my child with Down Syndrome, I don’t think I could have truly experienced what having love for a community and society as a whole is. I have learned a lot through loving him.
Reflecting back on my experience of finding out that my child has Down Syndrome, it was one of the hardest things I went through. For you see, at the time I had three children who depended on me greatly. One of my children had challenging behaviours because he found learning to be difficult. It was and is a battle that I deal with to this day. I went through a lot of pain with the fuel of love that only a mother has, to ensure that my child received the care and acceptance that everyone deserves.
When I found out my fourth child has Down Syndrome, I had many rushing thoughts and I was scared. I was scared because I had the needs of my prior children to consider in addition to my own. I went through many emotions: fear of the unknown, anger as to why this “happened” to my child, and sadness because unlike my other children, this baby would not experience the joy of having their own babies. Everything that I had dreamed of for my other children would not be possible for this child. He could have some of the dreams but not all of it.
If there ever was a situation to be had where you meet your values and ethics head-on, this was it. I had to examine the values and ethics that I practice. Which ones are most important to me? Why are they important? Are they valid rational reasons? Just like theory is to practice, hypothesizing how you would react and what you would do in a situation where your child is diagnosed with Down Syndrome is completely different compared with what you actually do in reality.
Prior to having children and being a Nurse, I had worked with children who had a variety of special needs. So, I had some familiarity of what to expect. But in this situation, I had fear. Fear that my child with Down Syndrome would be more behaviorally difficult to manage. Fear that I would not be able to provide everything that they need emotionally and physically. Fear of people I knew and did not know, treating me or my child poorly or alienating me or pitying me.
I had anger. Is there a God? Why would God remove functioning characteristics from my child? Why did my child had to suffer?
I had sadness. My baby can’t have babies of their own. They won’t experience raising their own family. My baby will suffer. My baby will have a difficult life.
These thoughts ruminate in the minds of anyone that receives any prenatal diagnosis that isn’t “typically developing” or “developing as expected”. To have these thoughts are normal in this kind of situation. To have these thoughts are human. Feeling guilty about having these thoughts are also to be expected.
I believe in order to get answers to your questions, it is best to retrieve responses from the best resources available demonstrated by the highest quality of evidence. I met with many health professionals because I wanted to hear what I had read directly from “the horse’s mouth”. I learned that individuals with Down Syndrome often need more stimulation because they are quite content to sit in one spot, watching the world around them. I also learned, I entered a world of risks and was presented with an array of percentages, that could sometimes resemble the risks and odds in gambling. I realized after many conversations of numbers and risks that I needed to take a step back from the medical perspective and seek out a variety of perspectives.
I needed to seek out the lived experiences of others who had children with Down Syndrome. My questions could be best answered by parents who already have “walked in my shoes”. Most of the answers to my questions were not readily available at my clinic and ultrasound appointments. Questions such as what is life like for someone with Down Syndrome is best answered by a person who lives with someone who has Down Syndrome, not by someone who has read about it. You have to seek out this information, not only the one that is laid out in front of you. This information is largely subjective and could be viewed as the health professional influencing your decision. The tragedy of this, is not giving information about the lived experiences of others in regards to Down Syndrome unintentionally may influence the decision of someone to say NO when they may have otherwise have said YES, had they had more information.
Once I sought out information from parents who have a child with Down Syndrome, I learned that I am more than capable to have such a child.
I learned that I have much strength in me to care for another child with challenges.
I learned I cannot live my life in fear of what other people think of me. I have my own truth and I have to live it.
I learned that conception is a random occurrence where there are prescribed instructions but that they do not always follow a particular sequence. Thus, God did not single me out to have a child with Down Syndrome anymore than God did not single me out to have three healthy pregnancies prior and to never have experienced the grief and sadness of a miscarriage. Special children are not born to special parents. Special children are born to parents who see themselves as capable of doing so. It may come as a surprise to some that there are many capable parents waiting to adopt a child with Down Syndrome. I know, because it was a surprise to me when I was told by a pediatric physician.
I learned that people do not suffer from Down Syndrome anymore than I may suffer from having fine hair.
I learned that people with Down Syndrome have lived to and beyond 60 years of age and live quite independent lives. The notion that my child would suffer as having to live dependently was countered by many living examples of independent individuals with Down Syndrome.
I learned Down Syndrome is not life-threatening. In many ways, I’d come to know Down Syndrome as life-enhancing.
I learned that if my sole reason for not having this child is because they themselves cannot have children or could not do some things exactly like my other children or would do the same things as my other children but on a delayed timeline; then my reason to not proceed was not valid. There are countless individuals who choose not to have children or do certain things differently, and they do not suffer daily because of it.
The more I learned from everyone, the more I refined my values and ethics and was able to set them apart from others simply because I was more knowledgeable.
What are my values and ethics? I did not discuss them because they are mine, not yours. They are mine to keep and mine to share with whoever asks me, should I decide to. Your choice is not rooted in my choice. My choosing Down Syndrome is rooted in facts and grounded by my beliefs. Most importantly, beliefs I practiced and acted on. It is a choice I welcomed irrespective of the outcome of being positive or negative. I made a choice where I knew I could like the rest of my life without regret. I replaced my fear with inquisitiveness, my anger with faith, and my sadness with acceptance. Choosing to have any child really is a leap of faith no matter if your child has any perceived complications or not. No one can predict the future. A healthy child born may not have a bright future and may live a miserable, sad, and lonely life despite having very caring and loving parents. A child may be born with a disability and may have a bright future full of love, happiness, and connect positively with many people. (A truth and reality I have learned and witnessed working as a Nurse).
My son with Down Syndrome was and is the best YES, I ever made.
For there to be more YES’ made in this world, we need more people to interact and communicate with members of their community who are disabled, physically and cognitively. This is how value, kindness, and empathy is built. This is how inclusion is created and built. Inclusion matters.
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