In honor of Judah’s impending 3 month birthday, I thought it only fitting to talk about the 3 copies of his 21st chromosome. Typically, a person is born with 2 copies of 23 chromosomes or a grand total of 46. In Down Syndrome there is an extra copy of the 21st chromosome resulting in 47 total. Sounds like extra love to me? On a side note: this is also the reason that World Down Syndrome Day is celebrated on March 21st or 3.21. Did you hear that family and friends? We were just given ANOTHER day to celebrate, how exciting!!! Now, I am new to this journey, but as I understand it, this splitting of the chromosomes is for the most part completely random. For some reason, the incidence of Down Syndrome does increase with maternal age , however 80% of children born with Down Syndrome are born to women UNDER the age of 35. There is a way to check for Down Syndrome prenatally and…. here’s a shocking statistic for you, 90% of couples that find out their baby will have DS, abort their baby.
Divine intervention ensured Bobby and I did not ever have to make this decision. Through a combination of lack of insurance, switching doctors and impeccable timing, we were unable to have the testing done. I would like to think that because this baby was made from love, we would’ve chosen the genetic counseling, but by the grace of God, we will never know for sure.
So, a woman recently, wrote an article on Yahoo parenting called: “Why I Terminated My Pregnancy After Learning My Baby Had Down Syndrome,” I know this because in 3 short months I have been connected with numerous, beautiful people on the same pilgrimage as myself . Most of them I follow on Instagram and I get the privilege of watching their amazing families in action. They mentioned the article, its misconceptions, and how we should band together in solidarity using #lifewithachildwithdownsyndrome to show what life is really like with these cherubs. As a woman that loves to fight for a cause, I immediately knew I was going to be in. I was going to jump in with both feet and then even stomp around a little bit……..but first, I had to read the article. It stung. It hurt because this was my little angel she was saying would be in a constant “toddler-like” mindset. It also scared the crap out of me because I very well could’ve been this woman. Therefore, I choose not to judge; rather to educate. Some of the comments made me feel even worse. People without correct Down Syndrome information agreed wholeheartedly with the author. They truly believe that Down Syndrome individuals “cost millions of dollars” or “never will be adopted.” I just found out yesterday; there are people lined up to adopt babies with Down Syndrome. Judah’s pediatrician calls it a “heart-warming” disability and Bobby’s co-worker, who has a daughter with DS, “the Cadillac of disabilities.” I would like to add, there were positive comments in the article. They were made by people who have a relationship to someone with Down Syndrome and they all took the high road. Good for you.
The woman said that she was terminating her pregnancy because as a mother “she wanted to do what was best for her child.” WHAT? I need a freaking umbrella to shield me from the shit storm of misinformation. Where to even start addressing these delusions?
First of all,I’m going to start with some super cool facts. 99% of individuals with Down Syndrome are happy with their lives, 97% like who they are and 96% like how they look. The rate of divorce is lower in families with a child that has DS, 79% of families say they have a more positive outlook on life because of Down Syndrome, 97% of siblings have pride in their brother or sister with DS and 88% of these same siblings felt they were a better person because of it. Also, people with Down Syndrome, go to college, get married, live on their own, drive cars. My mom met a guy who rides a motorcycle and there is a girl with Down Syndrome in his motorcycle “gang.” I LOVE that girl!!!
Next, I’m going with my personal experience….. If someone told you that you had to go through a week of: gut wrenching, debilitating, nightmare and shame filled, pain… for a lifetime of heart swelling, mystical, “can’t wrap your arms around it” big, kind of love… would you do it? Well, THIS is what I wish I could explain to the author of the article. Sure, it was painful, it was an indescribable hurt…and you know what? I’m not even sure why? It was a million reasons. It was that my dreams of what would be were shattered….pretty much a planner’s worst nightmare. It was that I was afraid. I was afraid people would be disappointed in me, in Judah, in being around our family. It was that I was embarrassed. I was embarrassed to tell everyone, to be pitied, to be worried about. It was that I was concerned. I was concerned that Calvin’s life would suffer, that our life would have to be dedicated to the disability, that I would never be able to love Judah enough. Mostly it was disbelief. Those who know me, know I had real anxiety for nine months about having a child with Down Syndrome… and it actually happened.
3 short months of living with 3 copies of the 21st chromosome and my life is more gloriously different than I could have ever imagined. Some of Calvin’s recent tributes to his brother: “mom, he’s so cute,” “mom, Judah is my best friend,” “mom, that’s my brother he’s my Valentine,” and TODAY …”mom, he’s beautiful.” I can’t even type this without crying from pride!!! Some other perks…all of my relationships are richer. All of these people who have come together to support and encourage me have enriched my life beyond anything I could ever imagine. You think you love your family and friends? Wait until they storm your door just to reassure you how amazingly beautiful your baby is! I still can’t even wrap my head around the support. And lastly, I can say I’m a better mama for it. When Judah was fighting for his life at just 20 days old. One day after his original due date…all our Down Syndrome fears went out the window as we prayed for his survival. I saw that protective lioness in me. I really started to fiercely guard my baby cubs during that ordeal. I will always fight and root for baby Judah. His slower, but sweeter, milestones will all be a dazzling victory that I undoubtedly will weep about. So, I must argue with the author of the article. The best thing a mother can do is to have a child that shows them the true meaning of unconditional love. I thank God every day for ridding me of the ignorance and fear I once had and for replacing it with such a gratifying gift. Happy 3 months Judah Michael. We really are #theluckyfew.
Some Instagram hashtags to check out: #nothingdownaboutit #downrightperfect #theluckyfew #designergenes #downsyndromecutie #t21 #itsonlyanextrachromosome #lifewithachildwithdownsyndrome