Written by: Kristen Millar
Ellis was throwing curve balls from the womb. It was an eventful pregnancy but what was even more eventful was receiving a diagnosis of Down Syndrome at birth. Not even tests could detect his extra-ness. I guess you could say that he has always been stealthy.
I won’t lie to you and say that I accepted his diagnosis immediately. I feel that it is a complete disservice to new and expectant parents as well as the community as a whole to lie to you in fear of how you will receive me. I cried so hard that I ran dry and it didn’t just last a couple of days. A mixture of self-diagnosed situational and postpartum depression dominated the first few months with my beautiful baby boy. I could write a whole book about this experience (and maybe one day I will) but I will save you the time and simply state that I have no regrets. I felt it and left it. The pain evolved into magic and I am truthfully a much better person because of my son. With that said, there are very real challenges for Extra Lucky parents and E’s medical complexities dominate my thoughts at times.
We had a tough Fall/Winter season. Like many other children, E was hit with a plethora of respiratory viruses. Every single one resulted in pneumonia and landed us in the hospital. Four hospitalizations between the end of October and February to be exact but who is counting, right? The most recent stay resulted in E being sedated and intubated in the Pediatric Intensive Care Unit (PICU). We were there for a messy and very non-linear 97 days. Post-virus his heart failure peaked and further ignited my advocacy to have his “large” VSD repaired. Thankfully, the teams at SickKids Hospital (Toronto, Canada) listened and allowed me to participate in his care. I do recognize that unfortunately, this is not everyone’s experience. Finally, after two years of feeling unheard by his community cardiologist, the team at SickKids grew to learn E’s “subtle until he is over the cliff” style and they confirmed my initial suspicion that he was in heart failure and likely had been for some time. Six months post VSD repair E is thriving. He is speaking more, he no longer has bags under his eyes, he is gaining weight, he’s had no further hospitalizations (so far), he no longer requires oxygen while he sleeps and I am so proud to say that he took his first steps last week at three years old.
What did this teach me? It taught me to always trust my Mom gut. It taught me to keep pushing when the advocacy gets hard. It taught me that even warriors have their limits. It taught me to not only appreciate my four-year-old daughter but greatly respect her, as I watched her navigate 97 days without her Mommy with a level of grace unmastered by many adults I know. It taught me to appreciate life and health more than anything because the very hard truth is that not everyone walks out of those hospital doors with their baby. It taught me that wonderful people still exist and can somehow manage to support you even in the hardest, darkest moments of their lives. I will end this by requesting that you give others grace if they are a little absent this season whether they are trying to avoid potential illnesses in fear of exposing the more susceptible, grieving loss, or simply processing life events. Wishing you all the most wonderful, healthy, understanding, and supportive Holiday.
Thank you, Kristen, for sharing your story with our community.
For more like this, check out our book Dear Mama: Stories of an Extra Lucky Life.