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Gabe's Birth Diagnosis of Down syndrome


For those who are unfamiliar with an at birth diagnosis of Down syndrome, I will tell you briefly about the experience. Simply put, it is a life altering experience. Gabe’s birth redefined me fundamentally as a person, changed my entire perspective on life, and provided me a clear purpose on why I am here. I will be forever in debt to my little man, he has made me a better man in every imaginable way and I hope that I can make him proud, because Gabe makes me proud to be a father every day.  A word of advice for soon to be fathers, stop what you are doing and pack a bag to bring to the hospital. Seriously, go do this right now! We were at the hospital a couple days, we had talked about packing a bag, it was one of those things we “meant” to do, but never got around to doing. Then one night Kristie wakes me up and says, “I think my water broke” and off to the hospital we went. I was excited, nervous, and a little scared all at the same time! Gabe was born late on February 21st after 22 hours of labor for Mom. After everything was done, Kristie and I went to bed about 3 am and the next day, we welcomed friends who came to visit us and meet Gabe.  At this point we had no idea he had Down syndrome (though Kristie said it was her first thought when he came out, but she was too afraid to ask).  The entire day went by, visitors came and went, nurses and doctors came and went, we went to sleep, and then just before 7 AM on February 23rd, about 32 hours after Gabe's birth, we were suddenly woken up as a doctor we'd never met stormed into our room. The doctor didn't introduce himself, and quickly began talking and said something along the lines of, “I don’t know if you are familiar with Down syndrome, but it is possible that your son has it but we won’t know for a few days.” This was such strange news to me, Gabe had an Apgar’s score of 9 and is so beautiful and perfect. (For first time fathers, Apgar score is a method to quickly summarize the health of a newborn, more info here). Gabe was a little puffy, but I didn’t think he had Down syndrome. (I look back at the pictures now and I clearly see my beautiful little baby Gabe, who has Down syndrome). The doctor then continues to ramble on for another minute or two, with little or no bedside manner, and walked out. WTF. I don’t remember much else of the conversation, I know Kristie does because over a year later we brought Gabe to the clinic and he was the doctor on duty. She told him how difficult the experience had been for us because of the abrupt method in which he provided life changing news to first time parents. After we leave the hospital we are told that it will be 7-10 days before we know for sure if Gabe has Down syndrome. It was a difficult time because we were so happy to finally meet Gabe and bring him home. At the same time we were scrambling to learn everything we could about Down syndrome. After searching online, which was a terrible idea, we quickly learned about the multitude of health concerns associated with Down syndrome. A friend introduced us to a family who had a daughter with Down syndrome. We had dinner at their house the night before we got the official blood work back confirming his diagnosis. This is how I truly started to learn about Down syndrome, by talking to people. Learning about how Down syndrome had impacted their lives and the highs and lows they were experiencing. I went back and tried reading the books, and honestly, I found them depressing and I couldn’t read them. They all seemed focused on all of the things Gabe wasn’t going to do and how delayed he was going to be. It wasn’t that I couldn’t accept this, Gabe is going to be Gabe and I will always love him no matter what. This idea of setting expectations for him from what I read in a book seemed insane to me. Also, I felt that none of the books discussed the first few conversations you are going to have with friends, family, and neighbors about Down syndrome as new parents. These conversations will change overtime, but this is a place to start for first time parents. It will probably go something like this. Friend says, “Hey congratulations, how’s it going with your little one?” You’ll reply with, “Ok, he/she has Down syndrome.” Friend says awkwardly, “I’m sorry.” From what I remember this was a typical first-time conversation. Let’s break down the conversation a little bit and see how we can improve it. The first part, what someone says is standard and we can’t do much about it. (Also, “I’m sorry” is not an acceptable response to give someone, but that is another topic). What I want to focus on is the important fact that it is our responses that we can control. Response one, “Great! Keeping Mom and Dad up at night, but that’s what newborns do right?” This is an acceptable approach. I don’t like small talk, and I felt like most of the time people were asking because they felt they had to and it's polite. It is a response for those friends, neighbors, and coworkers who you don’t often associate with or if you are just not ready/wanting to talk. Response two, “Great! Things are going to be a little different than Mom and I had imagined, Gabe was born with Down syndrome and we are excited for our new adventure.” This is the type of response you give when someone asks about your family. First, always state something clearly positive, use words like great, excellent, or amazing! Lead off with these one word answers to start the conversation. Remember, you just had an amazingly beautiful baby! But Alex, what if I don’t feel this way? DO IT ANYWAY! It is your duty as a father to  be the foundation for your family. Every time someone asks you about your family, you reply with something positive, and then provide more positive details. Your family is your greatest achievement in life, nothing is more important than them and it is your responsibility to tell the world how amazing they are and how fortunate you are to have them. We still have tons of books about raising a child with Down syndrome, maybe someday I will read them. Maybe when they start sending a positive message about life, I’ll read them. I need the world to know how amazing Gabe is and how he has made the lives of our family better. Gabe has given me an entirely new perspective on life and I want to share it with you. We all want the world be a happier place. Gabe sees the world with astonishment and wonder. Gabe continuously shows joy and a genuine love for life that I strive to imitate. I hope reading this brings joy and happiness to your life and we are just getting started on the positive impact Gabe is going to have on the rest of the world.

We started selling t-shirts for Down syndrome awareness. You can check them out here and remember to check back weekly for new posts!