Living with Down Syndrome – A Journey Through My Day

Every day is different for everybody, especially those with trisomy-21 or Down syndrome. This makes the whole popular theme of “A day in the life of…” in TV shows, blogs, and magazines quite sketchy. I would go further to critique this popular theme but the fact that it ultimately shows us how similar our lives make it a goldmine of education and inspiration. 

A day in the life of someone with Down syndrome would be typical other than the hurdles that come with the condition. There are many experts in science and medicine that describe the chromosomal disorder in detail but very few care to unpack the details for the general public outside the hospital. The facial features; the heart conditions; the milestone delays are facts; but more often than not, there is more to my vocabulary than chromosomes, karyotype, and genetics. Let’s go in that direction today. 

An interesting fact about Down syndrome is that not everyone follows the trend the doctors foretell. Many of us have a beautiful flat forehead with a flat nasal bridge, some have ears a bit lower than everyone else’s, and you might notice a lazy eye (ptosis) which many people find attractive but surprisingly, some of us have none of those facial features. That being said, courtesy and appreciation of different forms of beauty from society would go a long way to dispel any discrimination from members of the public based on facial appearance. Congenital heart conditions are another challenge many of us face. This sends many of us to heart surgery at a tender age. Sometimes it’s a hole in the heart called a PDA (patent ductus arteriosus) or another one called a TOF (tetralogy of Fallot) but that’s just a drop in the ocean of our lives  

It’s Never That Dull 

However, it’s not doom and gloom with Down syndrome. Many people living with the condition tend to enjoy the music of almost every genre. We aren’t shy about dancing at home and in public and I think many people should drop their guard a little and enjoy the rhythm of life. People count delayed milestones as a challenge but that is just a matter of perspective. I took longer to sit, crawl, walk and talk. I take a bit longer to grasp in class and my social skills take time but I savor each moment in each step. I enjoy my time with family and friends because no one is in a hurry when we’re together and everyone’s around. Every year I get a chance to visit my doctor who runs a few tests on me. I normally get an echocardiogram exam for my heart; I then get a thyroid function test and a normal blood exam to see if everything is okay. Occasionally, I have to visit an ENT and an ophthalmologist to ensure my eyesight and hearing are okay. 

We Are One With You 

 We currently live in a fastpaced world with little time to spare. I think members of the community living with Down syndrome should be given a chance to contribute to society at their own pace with support in all areas they need so that we as people can all slow down and get time for empathy, humanity, and acceptance. Before getting into theories and hearsay of the scientific basis of Down syndrome, genetics, and pregnancy outcomes, it’s important to realize that actual people are living with Down syndrome. These people have the condition and it makes up a big part of our lives but I believe there’s more to each of our lives than the conditions we have. I hope we can all take the challenge, learn more, and get involved in the business of people living with special needs.

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