Having a Child With Down Syndrome
My beautiful daughter Kelsi turns 3 this week and I can hardly believe it. I am overwhelmed with my love for her and the daily joy that she provides to our family. Kelsi’s Corner is a gift to her as a thank you for transforming me into a better mother and a better human being. She is the light of my life- a light at the end of a dark tunnel that I never thought I’d see. This is a story of my transformation from despair to life and hope. The truth is Kelsi has Down syndrome and I wouldn’t take it away. But the other truth is that I didn’t start out feeling this way. In fact the emotions I just described are almost opposite of the way I felt days, weeks and even months after receiving the diagnosis. The truth hurts and sometimes so much that it’s hard to say aloud, especially when it goes it against everything you “thought “ you believed in. So here is my truth.
During my 20 week ultrasound, when I found out I was having another girl, I was delighted! When I then found she had a heart defect I was distraught. When I found out she had Down syndrome I was devastated. I am pro-life, or at least that’s what I’d told myself for the last 30 years. All life is valuable. Trust in God. Everything happens for a reason. All such inspiring truths until you are personally facing struggles you had never imagined. When I heard the words Down syndrome I immediately thought my life is over. I will have an adult child in my home until I die. I will never go on vacations again. My first-born daughter will be stuck caring for her forever infantile sister. And those are only a few of the hopeless thoughts that went through my head. My heart hurt more than it ever had. I was in shock, it scared me, and it was more than I could handle. I couldn’t talk to anyone, I couldn’t go to work, I just cried and tried to figure out how to wrap my head, my arms, and my heart around my situation. Here I was in a position where I believed I knew exactly what I was supposed to do and I did not want to do it. I did not want to have a baby with Down syndrome. This in itself altered me forever. To be faced with a decision that shakes the core of who you think you are has a monumental impact on the person you become- whichever road you choose to take. As you already know I chose to sustain the pregnancy but my agony did not end there. Over the next few months of my pregnancy I lived in fear and disgust. Disgust with myself for the way I felt about my baby girl that was growing inside of me. The excitement, joy, and anticipation I felt with my first child was replaced by fear, anxiety, and sorrow. There is a lot in the middle as the transition from despair to happiness did not occur overnight. I had to educate myself, break down my own mental stereotypes, and consider the fact that I really knew nothing about this “awful” diagnosis I had been given. Looking back I realize now my feelings weren’t wrong but I also realize they were formed due to my ignorance on Down syndrome and the stereotypes imparted onto me by society.
In the 3 short years that Kelsi’s been here, I’ve learned the truth- what is my new truth. Down syndrome is a part of Kelsi but it doesn’t define Kelsi. Kelsi is fun, determined, charming and stubborn- a typical toddler in most ways. She loves Elmo, following her older sister around, and is a daredevil when it comes to new challenges. I always hoped my second child would be more loving, as my first is not the most affectionate child. I laugh now at how God works in mysterious ways as Kelsi showers our family and friends with hugs and flirts with strangers when we are in public. At only 3 years old she strives for independence and I am fully confident she will leave the home just like my older daughter. She’s been to Colorado, Niagara Falls, Seabrook, Disney World, Washington DC, and on a few other vacations. Not bad for only 3! The truth is I was wrong. Not wrong in my emotions but ignorant in my perception of what Down syndrome is. Emily Perl Kingley’s poem describes it best for me. It may not be Italy where you had always planned to go but Holland is beautiful as well!
For those of you women who are pregnant and currently trying to decide if you should terminate your pregnancy, stop and take a moment. If you landed here then I’m assuming you feel as lost as I did. Before you travel down the path most traveled and join the 90+% of women who choose to terminate, please educate yourself on the realities of Down syndrome and don’t just believe the common misconceptions. Most importantly, please educate yourself not from a doctor’s medical point of view but from a mother’s point of view. Regardless of your decision, every child deserves to have someone in their corner even in the bleakest of circumstances. I’m an open book and I’m here to help woman facing this diagnosis. Post, email me, or call me. But before you make the decision to take the road the majority of women choose to take, at least consider taking the road less traveled.
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