The News of His Diagnosis Isn’t News Anymore
“Hello Mom, the Karyotype results came back, Rodrigo has Translocation Down Syndrome.” My mind hit the reset button. It is real. Officially my son had DS. Why did I need the results of a genetic test to come back positive when I already knew? I have no clue. It felt like “the real thing.” No more suspicions, no more “he doesn’t have it” remarks.
Ironically some weight was lifted off my shoulders. Now I could openly have a conversation about my son having DS. Which didn’t happen for a while. I really wasn’t sure how to say or “announce” that my son had DS.
How Do I Tell Dad?
When the doctor gave me the results of the blood work, Dad was not with me. The baby and I were in the NICU because his Bilirubin level was very high and he needed phototherapy. So I called dad and told him I wanted him to come visit us at the hospital.
During the time it took him to drop off the girls to my moms, I was trying to figure out how I would tell him the “news.” I knew we both believed he had it but now we knew it was a fact. I coached myself to be strong because I did not want Dad thinking I was breaking down inside.
He made it, and proceeded to carry our baby. “So, the results came back.” I said. “Ok, so..” he started saying. He was looking straight at me when I just nodded yes. My God I tried so hard to hold the tears back but I couldn’t. I could not even open my mouth and he leaned over to hug me. Damn it! I had talked myself out of crying over and over and here I found myself balling again.
I continued to speak while crying and wiping my tears. His response was a true blessing, “ok, well so what, he is still our child.” I felt relief. “Now we just have to find out what we need to do for him.” This was new to us regardless of how much nursing school taught me. They definitely don’t teach you how to raise a child and not one with DS for sure.
Afterwards we continued to talk about what’s next and how we move forward in our life with our bundle of joy and his diagnosis.
How Do We Tell Our Parents?
He went on to talk to his parents over the phone and I did the same. Both of our parents were aware of the suspicions but did not know the “official” results. They were both very supportive and gave us words of encouragement. I also let my siblings know and I started to feel a bit better.
How Do I Tell A Friend?
Once we got discharged a really good friend of mine wanted to visit my new baby. I started thinking of ways to turn her down. I felt guilty for doing this. I wasn’t sure I wanted her to see him, I wasn’t sure how I would tell her that he had DS. Finally I just said, “yes come over!” I wanted to tell her myself. Her and I are very close and I knew she would not judge. Sure enough her reaction was as I expected, nonjudgmental and not rude.
How Do I Tell The World?
After that I started to feel the need to announce it to the world that he had DS. I wanted to be the one that laid the first rock down. I did not want someone making a rude remark if I posted a photo up. I also didn’t want people to “suspect” and avoid the topic.
As mentioned in previous blogs this subject is not easy to talk about. First, because people tend to avoid a topic when they are unsure about how the other person, in this case us, feels about it. Second, because society has portrayed DS to be a bad thing.
Anyway, I had posted a few photos on my Instagram but I had not officially announce his diagnosis. I ran into a poem in Pinterest that made me cry as I read it because of how beautiful it was. So I made a collage that included that poem with two photos of my little peanut. And I hit “post!” I was very nervous of the feedback I would receive but at the same time I felt even more relief.
Since my IG followers consisted of family and friends, the comments I received were comforting and supportive. I had spoken to my cousin, who is another best friend to me, to tell her that I would be needing lots of her help. That was another thing we would share, both moms of DS babies. Sure enough she was very willing and continues to be very supportive.
What seemed scary did not scare me anymore. I believed anyone that needed to know my son has DS knows. Those who don’t will find out on their own but that is not my priority anymore. I was scared to be judged and brought down by rude remarks and I was blessed to not have gone through either or.
I told everyone before they met my child so that there wasn’t an uncomfortable situation or avoidance of the subject. I can openly talk about him because the “news” of him having DS is not “news” anymore. This may seem odd to you but it made a huge difference to me. That helped me to cope better and also not shy around the idea.
How Do We Tell Our Daughters?
They still don’t know. We haven’t had a conversation with them where this needs to be addressed. Elyanna is 4 years old and Camilla is a little under 2 years old. When the time is right they will know. I will make it a priority to make sure they here it from us and understand what DS is.
All they see is their little baby brother whom they can kiss and cuddle. No
Taking It One Day At A Time
This continues to be a new experience and regardless of this situation I love my child. This might sound like a broken record but I do love him, an indescribable feeling. All I did and am doing is for him and for my family. We are a whole and we count on one another to get through the difficult road blocks we will face.