Luke’s Story - Part 2

The months that followed were full of such emotional highs and lows, I didn’t think I would ever feel stable again. Our appointments were also rollercoasters, going from hearing extreme negativity and worst-case scenarios from doctors at one appointment, only to be followed with “good news” and best-case scenarios from different doctors at the next one. At 16 weeks we discovered that our baby was a boy and he was looking healthy, but because of the positive NIPT results, we had to stay with the high-risk doctors and be monitored frequently. So, the remaining 25 weeks of my pregnancy were filled with appointments, ultrasounds, and specialist visits. 

November 29th was Luke’s due date, and the day came and went with no baby. But because I was doing well and Luke was still growing strong, we were allowed to go past our due date in hopes that he would come on his own. 

On December 3rd, Luke decided to make his grand entrance, and after a very fast and furious two hours of labor, he was born! The NICU team at our regional hospital came in immediately to asses him and to try and give us an on the spot diagnosis, but he only had two of the “markers” they were looking for and so they said we would need to wait, even longer, to get the results of genetic bloodwork back. 6 weeks later, we finally got Luke’s results and confirmed that he does indeed have Trisomy 21. We’ll talk more about a diagnosis in another post, but this is still Luke’s story. 

At the time this is being written Luke is only 3.5 months old, but already I have seen countless ways that doctors and other professionals have stereotyped him and his future abilities just because of a diagnosis. From being told that he will never live alone or be intelligent, to later being told by a charge nurse at the hospital that she hopes we have another baby in the future who is “normal and healthy” - I see the ways that people devalue my son and his life just because of his genetic difference. This infuriates me, not just for my son, but for the lives of all individuals with Down syndrome, and out of that anger, frustration, and desire to do something, Shout Your Worth was born. 

Something HAS to change. We have to encourage one another to see past the diagnosis and the fear inducing words spoken to us by ignorant people, and those who are uneducated about the amazing lives that are being lived right now by people with Down Syndrome. We have to empower one another to see that we ARE capable of making change, and we have to come together to advocate and be the voice for our loved ones to show the world how truly valuable they are. 

This is all for you, Luke. I will never stop fighting for you. I will always Shout Your Worth.