Moving Past the Down Syndrome Diagnosis


newbornLike most people, I have a Facebook page; however, I don’t really post often. Most of my posts are about Down syndrome awareness and acceptance. A good friend of mine refers to these posts as my “Public Service Announcements” or my PSAs. When Camden was born, I wasn’t on Facebook. Around the time he turned one, I rejoined sharing with old friends and distant family pictures of our family. Surprisingly, that was a hard decision to make. 

That first year, I was still living in the diagnosis we received when he was only a few days old: the diagnosis our son had Down syndrome. I remember being worried and anticipating the questions, the “I’m sorry’s,” and the pity I thought I’d receive about my precious baby boy. I made the decision to share him with the world, to show the world all he is capable of, to educate others about Down syndrome. This was to help others, but also to help myself. As I spoke more about Camden, the more he became Camden — and not Camden with Down syndrome. To be honest, although Cam was almost one as I returned to Facebook, I was still struggling with those words the doctor quickly said: “Your son has Down syndrome.”

Some Facts

Trisomy 21, also referred to as Down syndrome, is the most common chromosomal abnormality. A person with Down syndrome has three copies of the 21st chromosome. This can be a whole copy, or part of it. This little “extra” genetic material can lead to cognitive delays and a variety of health issues. It is important to note that just as with the general population, the cognitive ability of individuals with Down syndrome can vary greatly.

It is the same with health issues that can arise. My son was born full term. He had no medical issues related to Down syndrome. He will be five in November, and to date he has been admitted to the hospital three times. There was RSV at nine weeks, ear tubes around two years old, and tonsils/adenoids removal just last summer. We also have some friends who were born with heart defects, gastrointestinal complications, and sadly we have lost some friends to cancer. Those with Down syndrome have a higher incidence of some forms of cancer in comparison to those without Down syndrome.

From Rough to Not-So-Rough

Well, after almost five years I can honestly say I don’t think about Down syndrome every day. Nearly five years in, Cam is just Cam most of the time. Down syndrome does not define the child he is or the man that he will be. I have finally reached that point where Down syndrome is not all encompassing — compared to that day we received his diagnosis. Not nearly as much compared to the days, weeks, and months that followed those words.  

Those days, weeks, and months were ROUGH. They were rough, and that’s okay. The moments we have with our son now can sometimes still be rough (after all, he is a four-year-old middle child), but they are not nearly as rough as they were. My thoughts are not always about Down syndrome, and that too is okay. It was okay to grieve; it is still okay to worry. Even more, it is okay to not be consumed and to let my child just be a child.  

I say this not just for parents of a child with Down syndrome. This message is also for parents who have a child with a learning disability or a physical disability. This is for any parent who knows what an IEP or 504 is, for the parent who knows way too many acronyms such as ECI, MHMR, CLASS, or LRE. It gets better; it gets easier. I do not really know when it happened, but it happened. I went from late nights on Google doing research to late nights on Pinterest selecting pins for any DIY project. (Okay, many of my late nights are spent on Amazon shopping for same-day shipping items.)

To All Parents

For those parents who have no idea what any of those terms above are, this message is also for you. Talk to your children, help them to understand that in reality we are all more alike than we are different. If you are reading this and you hear someone use the R-word, tell him or her it’s not cool. If you are reading this and you hear someone use the word “special” in a derogatory way, please tell him or her it’s offensive. Let this be your PSA as well: My son is not the Down syndrome kid. He is the cutest little four year old you will meet — who happens to have Down syndrome. See the person, not the diagnosis. Imagine if we all did this all the time.  

The Fort Worth Moms Blog hosts 20 Neighbor Groups via Facebook, including the Moms of Special Needs Tarrant County. These groups are free to join and offer online and offline opportunities to build relationships and gain resources from other moms in the area.


  1. Thank you for sharing! I am also a mom of a child with Down Syndrome and I wish people would see my daughter the way I do…as a person and not a person with a disability. Love this article.


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