“Your blood work came back abnormal. These levels indicate your child may have Down Syndrome, so we are going to send you for a higher level ultrasound and we may need further testing like an amniocentesis ….”
The fog rolled in and the genetic counselor’s words sounded more like the teacher in Charlie Brown. I sat there, stunned, mouth agape, thinking, “I’m only 20 years old. I don’t even know how to be a parent, much less the parent of a child with Down Syndrome. How am I going to do this? What do I do? I’m not cut out for this. I can’t do this.” I’m brought back to the sound of the genetic counselor’s voice as she’s explaining my “options.” Wait, what? Adoption? Abortion? This is MY baby we’re talking about. I’m not just going to get rid of her. And in that moment I knew, Down Syndrome or not, I was going to tackle this head on. My daughter was born without any complications and without Down Syndrome.
Fast forward almost 5 years later and in walks the neonatologist and she slowly starts to explain “Your son has some interesting characteristics like a flat nasal bridge, thin philtrum, webbed fingers, and a significant heart murmur. On their own, these things aren’t usually anything to worry about, but when they present at the same time they indicate some type of syndrome….” And cue the teacher from Charlie Brown. I’m speechless, what is happening? I’m vaguely listening to the doctor and as she tells me he is going to have to be transported to another hospital for further testing I feel the tears rolling down my cheek. I see my significant other jaw clenched, tears welling over. Our whole world rocked, in an instant. As she leaves the room we look to each other and start the “What are we going to do?” talks and wonder how we’re going to explain this to everyone. “I don’t even want to say anything about this on Facebook” he says. We have no clue what is going on, terrified that our son is being transported away from us all while I’m still stuck in a hospital bed. 14 hours post c-section I was walking around my room and 36 hours later I was discharged.
Over the years, our journey has taught me that I possess more strength than I ever thought possible. If you had told me 4 years ago, after that neonatologist left, that one day I’d be sharing my story and helping others on the journey I probably would have laughed in your face. Me? Me, who didn’t want to share anything with my friends or family on Facebook would be blogging, giving presentations, and helping others? Yea, right. Except, that’s exactly what happened.
Somewhere along the way I found the courage to tell our story and from that has come the most amazing opportunities, friendships, and healing. I have now become a mom who can walk with others on the journey and help them see hope even in the most hopeless situations; help them find the strength they didn’t even know they possessed. I don’t pretend to be superwoman and I don’t want anyone to think that of me either. I’m not superwoman. I’m just a mom. A mom whose love for her child would move Heaven and Earth before giving up. Just like any other mom.
A few weeks ago, I witnessed the other side of the coin. I have accompanied families to appointments before, but not a single one jolted me back to that hospital room when the neonatologist flipped our world upside down like this one. I attended a genetics appointment with a family to take notes and help them figure out the next steps after receiving the diagnosis. Only, I wasn’t fully prepared for what happened next. As the doctor delivered a diagnosis I was unfamiliar with, I opened up Google on my phone and began researching then and there. Then, like a ton of bricks in an article –
This disease is always fatal. Most patients die before the age of 10.
The words blur together as I try to continue reading. I’m frantically searching for “success stories.” No, this can’t be right. I’m finding support groups, blogs, Facebook groups, calling in the troops – this family is going to need incredible support. Then, as quickly as it came, I’m brought back to the room and focused on the doctor’s words. He hasn’t told the parents yet. He’s trying to break the news easily and when he finally gets to it, they break down. Here come the tears, the cries of “How are we going to do this?” “This isn’t fair.” “I can’t do this.” “I don’t know what I’m going to do.” The doctor proceeds to explain more about the disease. The parents are frozen. I step in with some questions. I’m frantically taking notes. When the doctor leaves the room, the parents are visibly shaken. I give mom a hug and tell her that she’s not going to have to go through this alone. I share in their grief. I tell her that she is going to have the strength to do this. I tell them to go home, take it all in, cry, scream, break stuff, grieve in their own way and when they are ready we can tackle this, together.
A few days later I check in with the family and send them my notes from our visit. I let mom know that I’m ready and willing to help as soon as she’s ready. By the next week, the family has started a Go Fund Me and Facebook page. Mom has made contact with a doctor in Chicago for further diagnostic testing and to begin participation in a clinical trial. I am in awe of this woman and this family. This mom who didn’t think she could do this has already moved mountains in a short amount of time. I am reminded that strength comes when we least expect it and often when we ourselves don’t think we even have the strength to keep breathing.
The love a parent has for a child is the ultimate source of strength. It is the love for my child that kept me going when I thought my daughter had Down Syndrome, when I refused to stay in the hospital for the required 72-hours post c-section after my son was transported, when the geneticist finally delivered his diagnosis to us 2 years later, and it is the love for a child that I have seen move mountains for this family. If you are a new parent hearing a difficult diagnosis for the first time or a seasoned parent entering unknown territory, just breathe. You WILL find the strength and everything is going to be okay.