Our daughter Mylie will be 12 at the end of this month. I wrote this almost 4 years ago. This is just an excerpt of a larger piece that I needed to write in order to process some pretty intense struggles that we were going through. At the time it was cathartic for me to relive and record the story of Mylie’s arrival and how our lives were “forever changed” the moment we met her, and then again when we received her Down syndrome diagnosis hours afterwards. It was cathartic for me to read it again now in order to share it here.
I am sharing this because October is Down Syndrome Awareness month. My main goal is to be open and transparent about how “normal” our lives are, but also how uniquely wonderful and challenging they are at the same time. Really, I am extremely proud to have a daughter who rocks some extra chromosomes and I am all about celebrating that for an entire month. So…here is the story of her beginning and if you have any questions…just ask.
Eight years ago, on October 23, 2002, I gave birth to a beautiful baby girl through the most amazing experience in my entire life. I had given birth once before, and it too was amazing and life changing, but this time was even more…special. Through a completely natural birth experience (in a hospital), we welcomed our second child. I was in heaven in the moments after Mylie’s birth and I basked in the exponentially increased love that our newly expanded family now contained. I felt incredible both physically and mentally, and I couldn’t imagine a more perfect or beautiful life. I had no idea that the bliss that I felt would soon come to a screeching halt, being replaced by fear and questions and anger and so much more.
It was 9 am the following morning when the pediatrician walked through the door to our hospital room. I was anxious for him to make his visit because that would then mean that we could get our baby girl back from the nursery. He had just visited with our newest bundle and I was certain he was there to confirm what we already knew: that Mylie was beautiful and perfect and already showing signs of brilliance. Only, that was not exactly how the report was delivered. He had us sit down and then led with the question: “Did you notice anything WRONG with your baby?” I think he followed with two swift punches to my gut because I remember feeling instantly sick and breathless and ready to kill him. “Ummm, NOOO!” was my response. “Well, after my initial exam I have reasons to suspect that your baby has Down syndrome,” he went on to proclaim. I honestly can’t remember any of the words that he mumbled after that, though I think there might have been some mention of genetic testing, blah-blah, possible heart issues, blah-blah, followed by a few more lightning swift punches to my gut. It was then that my husband’s sweet voice brought me back to consciousness. I heard him say that he had suspicions in the delivery room, but because none of the doctors or nurses said anything he assumed he was wrong. And besides, my mother kept going on and on about how much she looked just like me as a baby, so his fears were put to rest. Again my mind started swimming around in circles replaying all that had actually gone down in the delivery room, trying to recall the faces of the nurses and the things that were said after her birth, searching for some sort of earlier sign that this could possibly be truth. How could I not know? Was there something WRONG with my baby?? How could he ask such a thing? Even from those first few moments living with this new reality that our precious baby girl would face tremendous challenges in her lifetime- challenges that I myself had never had to face, I knew that there was nothing WRONG with her. In that moment, with those words spoken, I was forever changed.
Immediately I struggled with this new diagnosis and the enormity of what it meant. I struggled with what her little life would look like. I struggled with what our son’s life would look like. I struggled with what MY life would look like. I knew that it was all completely different from what I imagined and dreamed that it would be. I struggled with the “why?’s” and the “how?’s” and the “now what?’s”. I felt the need to figure all of “it” out before I could step foot out of the hospital. I needed to know what our new reality was. I needed to know if I was capable of meeting her needs. I needed reassurance. I also needed to be angry. I needed to be angry with God and that horrible doctor who delivered the news in such a cold and heartless way. (I did ban him from our lives and refused to ever see him again…really healthy, I know.) And I needed to cry…like I have never cried before…uncontrollably…loudly…painfully, until there was nothing left and I was fully exhausted. And I needed to be held. By my husband. And I needed to hold tightly to our little baby. I think I went through most of the stages of grief in a very condensed period of time in that hospital room that day.
We did manage to make it out of the hospital even though I didn’t have all the answers, and we brought our beautiful baby girl home. That is when the supernatural occurred. There were people there awaiting our homecoming with balloons and flowers and presents and a big stork sign in the yard. There were cameras flashing, hugs given, and heavy-hearted celebrating, all occurring in our driveway. I made my way towards the door of our home with my Mylie in my arms. As soon as I walked over the threshold it came: an overwhelming sense of peace and relief and the reassuring touch of a strong but gentle hand and the clear words “It will be okay.” I turned. There was no one there. In that moment, with those words spoken, I was forever changed.
My main focus for the next few weeks was nothing more than loving our babies- both of them. Even deeper healing and peace came from watching Mylie in the arms of her big brother, receiving kisses and snuggles. I learned from him in a way I never imagined. She was “our baby, Mi-wee” first and no diagnosis was going to take that from us. The time would come when we would need to know and do more, but right then…our only job was to love her fully (and to figure out how to master nursing). (We did both.) In that moment, seeing her through his eyes, I was forever changed.
The time to know and do more was upon us when Mylie was 3 months old. We were setting up appointments with a state-funded program to meet with early interventionists. Mylie was going to be undergoing her very first round of cognitive and physical evaluations. Leading up to these meetings, we began receiving advice that we didn’t quite understand. It went against all my natural instincts as a mother. I was being advised to “downplay” Mylie’s abilities, not to brag about what she had already accomplished. I was being told if I shared how well Mylie was doing, that they would limit the services that she would be allowed and if I really wanted her to meet her fullest potential she really needed ALL of the services (including physical therapy, occupational therapy, speech therapy, and an early intervention teacher). “But…but…you’re telling me that I have to essentially lie in order to get her what she needs?” I questioned. The response I was given was: “You need to be an advocate for your child, because you are the only one(s) with her best interests in mind.” In that moment, with those words spoken, I was forever changed.
So, three months into this uncharted adventure, I was armed with three very profound realities that I had no reason to bear before. One: The world was not necessarily going to perceive Mylie in the way that we did. Some were going to think that there is something WRONG with her and they might not recognize her value. Two: We were going to need an incredible dose of faith and trust in God to see us through the unforeseeable challenges that we would face, but ultimately…everything was going to be okay. Three: We were the only people who were going to have her best interests at heart and at times we might need to full-on fight, cheat, or lie for her. The first and last of these realities were perhaps the easiest for me to accept. I was already ready to conquer the world for her. To this day, I struggle with the second. I have a very hard time dropping my defenses over the first and the third to allow the second to occur.
I’ll amend the original again here. I went on to rant vaguely about our struggle at the time. It is easier for me to now say that I think I have somewhat of a handle on #2 above. We have survived enough BIG things now that have forced us to grow our faith and trust and we have seen the very real evidence of God’s amazing grace and provision and protection. I know that “it will be okay”, that I don’t have to be in total control, that there are indeed others who will love her and accept her and fight for her just as intensely as we will, and that she will make a huge impact on the world. She already has. Down syndrome has been a gift to our lives. We may not have realized this the moment we received the news, but we learned very quickly afterwards through the amazing love that is our daughter. I am grateful to be forever changed.
Thanks to my sister for the above photo several years ago. It’s still my favorite. 😉