Guest Post, Author at Cedars Story

I have to share that I really didn’t know anything about Instagram until we had our Cedar. A meeting with the mother of an adult with Down Syndrome told me that I would find all kinds of amazing children on Instagram, ones that happened to have an extra chromosome like my Cedar. Roxanna was right, and my heart soared as I watched pictures and video clips scroll by giving me hope. One of my favorite accounts, in the beginning, was that of Flicks_on_fleek. I saw beauty in those sparkling eyes, I saw hope and I saw the tenacity of a determined little toddler. I recently reached out to Felicity’s dad to see if he was interested in sharing his thoughts from a father’s perspective, thank you Scott, thank you and your beautiful wife for sharing Felicity with the world.

We learned of our daughter’s Down Syndrome diagnosis at birth. The pregnancy was going just fine until the final doctor visit. My wife had not been feeling well that day so the doctor sent her to the hospital to get some tests done. That is when this roller coaster started. The doctor came into the room after looking at the ultrasound and said “you are not going home today, the baby has fluid around her lung and we have to induce labor now”. So labor was induced and as it was progressing our baby’s heart rate would decrease so the decision was made to do a c-section.

At 2:39AM August 7th our lives changed forever. We heard the first cries of our baby girl. We only got to look at her for a few brief seconds before the NICU doctor and nurses started prepping her to be transferred to the NICU, where she would spend the first twelve days of her life, and as they were doing that the doctor turns to me and says “she shows characteristics of Down Syndrome“. I looked at my wife in shock thinking what did he just say? So I asked him what he said and I heard the words again…Down Syndrome.

The fluid around her lung seemed like nothing now; that could be fixed. Down Syndrome is for the rest of her life. I went to the NICU with her while my wife finished up in surgery and was transported back to the room. As I looked at her through the plastic case she was in I thought to myself, “I don’t care if you have Down Syndrome, you’re my daughter and I am going to take care of you”. My wife took it a little harder than I did. She kept saying ‘I’m sorry” and I would just say there is nothing to be sorry for and she would ask, what are we going to do? I replied simply, we are going to raise our daughter.

A few days later the geneticist came to the hospital room to confirm the diagnosis or not, but we already knew the answer. It could not have gone any worse than it did. Her bedside manner was absent. She gave the confirmation and my wife began to cry and then she asks, “Why are you crying?”

Seriously?

You just confirmed a diagnosis in our daughter that cannot be fixed that will make her life more challenging than others and you ask why are you crying? It gets worse, she then proceeds to tell us that other kids love kids with Down Syndrome when they get to school; they’re like the mascot or the pet. I almost kicked out of the room after that statement. She just dehumanized my three day old daughter.

My initial fears were how would other people treat her. Mainly would she be picked on or bullied?

I also feared the unknowns that come with Down Syndrome; which areas will she struggle in? Will she be high functioning? What happens to her if something happens to us?

In the beginning, I worried about telling people. Now I say it proudly. It is a part of my life. I think having a child with Down Syndrome has made the relationship with my wife stronger. We need to lean on each other a little more because of all the ups and downs.

I now say it proudly. Down Syndrome is a part of my life. I think having a child with Down Syndrome has made the relationship with my wife stronger. We need to lean on each other a little more because of all the ups and downs.

My friends and family have been great from the start. They tell me she could not have been born to two better people. I am a registered nurse so I have knowledge of health issues and my wife is a social worker so she knew how to get Felicity into all of her therapies.

We got lucky in the fact that Felicity did not have any major health issues when she was born. She does not have any of the heart issues that can be associated with Down Syndrome. She has had to get tubes placed in her ears and tear duct surgery to correct a clogged tear duct, but that is the extent of it.

After the initial shock of getting the diagnosis, I was sad and angry and had a lot of why me? why us? questions.

At some point during that first week at the hospital I finally broke down in the shower and cried. I was not crying for me though. I was crying for her. I was sad and mad that she would have to have struggles and there was nothing I could do to change that. It probably took me a good six months before I fully embraced it and just saw her as my daughter, and not my daughter with Down Syndrome.

Related Post: Down Syndrome: Andrew’s Daddy

My wife and I take part in functions at our local Down Syndrome Association. Going there has been a great help for me. In the beginning, I did not want to go. I went one time and saw all the other children and I would just ask myself questions like, will Felicity be like this child? or that child? and it was a lot to handle at first. I learned not to compare her to other children; they all have their own ways of achieving their milestones and Felicity will just be Felicity. I think all parents should get involved with their local DSA if they can.

I learned quickly not to compare her to other children; they all have their own ways of achieving their milestones and Felicity will just be Felicity. I think all parents should get involved with their local DSA if they can.

Everybody has their own timeline for grieving and acceptance. I accepted it almost immediately. That does not mean that I liked it though, or didn’t want to change it. We had all these thoughts and feelings about this daughter we built up while still in the womb and then it was like a slap in the face when she was diagnosed; almost like we got cheated.

Felicity just turned two years old, and every day is a blessing. She has taught me a love I have never known and patience I never knew I had. She has PT, OT, Speech therapy, music therapy and developmental therapy. She has a busy schedule. She struggles most with speech right now and she does know some signs in sign language. I would not change her for anything. Life is great

She has taught me a love I have never known and patience I never knew I had. She has PT, OT, Speech therapy, music therapy and developmental therapy. She has a busy schedule. She struggles most with speech right now and she does know some signs in sign language. I would not change her for anything. Life is great

I would not change her for anything. Life is great