Our youngest is close to three years old now. He has trisomy 21. It has been and still is very difficult for me to conceptualise and talk about trisomy 21 without pathologising it or focusing on what people with the condition cannot do. I do not intend and do not have time to wallow in self-pity or the pity of others. I am writing this to try to unpick my own feelings, and I am putting it on my website in the hope that others may gain something from it.
We are extremely fortunate to have a strong support network in both an institutional and a personal capacity, and also extremely fortunate that our youngest was born without any major physiological issues. He has a small hole in his heart, but it is not big enough to warrant any procedures at present. Our situation in general is relatively mild compared to many of the stories I hear about other parents of children with trisomy 21. Simply put, some of the hardest things for us at the moment are firstly taking care of three young children who all want attention, and secondly dealing with a toddler who is able to communicate basic needs to some degree but cannot (and will not be able to for some time) express the highly idiosyncratic demands that children at this level of development tend to have. There will be many tougher challenges ahead, I’m sure, but one of the main things that I learned when browsing through books about Down Syndrome (I found Down Syndrome: An Introduction for Parents and Carers by Cliff Cunningham particularly enlightening, though any similar book would probably show similar insights) was that it’s best to take things one day at a time.
Speaking of time, development in all aspects takes a lot longer compared to children without trisomy 21. There are rough developmental milestones for children with trisomy 21 but the rate of development still varies quite a lot between individuals, and so it doesn’t really help me personally to focus too much on this kind of timeline. With “typical” development, it is easier to put up with the “terrible twos” because there is a rough end-point that you can expect to come somewhere around three years of age, but we cannot predict when this end-point may be in the case of our youngest. I try to focus on his current stage of development and what he is able to do, as opposed to his actual age in years, though this was very difficult to do a few years ago. It is less difficult for me now simply because he is able to do more things than before, even just a few months prior—seeing him walking around and communicating through hand signs and speech has been incredibly encouraging in particular. It is wonderful to watch his ongoing progress.
Trying to take one day at a time doesn’t stop me from thinking about the future. It is easy to say that a person’s worth is not and should not be defined by the amount of labour that can be extracted from them, but that doesn’t assuage my concerns about whether our youngest will be able to do any work, or rather my worries about how independent he might be when reaching adulthood, and how he will continue to live after that. People with trisomy 21 tend to age more rapidly, have early-onset dementia, and die at a relatively early age on average—about 50 to 60. People often say that children passing away before parents is something that “should not happen,” but without any constructive way to avoid this possibility (probably about even odds, I’d guess), my hope is that my partner and I will be able to support him throughout his life without needing to shoulder the burden of care onto our other children. I want to try to keep as fit as I can so that I can continue to give our youngest the help that he needs. Easier said than done, of course.
I don’t really have any kind of conclusion to make here. This is just the beginning of our youngest’s life. I’m sure I will have more to write later.
By mojilove on 2026-04-06