Reminder about your invitation from Jeff Bettger
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My friend Dustin just had a baby girl and posted an amazing article about her, and his feeling about her having downs. Super encouraging to me right now. Thanks Dustin for being real and sharing your feelings with us. I’m happy for you guys and excited for your new edition. Praying for maintained health, and support for your family.
My daughter, Arden June DeKoekkoek, was born Saturday, June 11, at 5:49 am. She weighed 6 pounds, 9 ounces and was 21.5 inches long.
Arden has Down Syndrome.
Jenae and I knew early on in the pregnancy that there was an increased risk that Arden may have Down Syndrome. We walked in to our first ultrasound expecting the same outcome as we had with Lucca, a healthy and perfectly normal baby was on the way. Through many years of collecting data, the medical industry has been able to correlate certain markers that show up in ultrasounds with certain health issues. Some of the markers showed up in Jenae’s ultrasound and then again in proceeding blood tests and echocardiogram (a type of ultrasound specifically focused on the baby’s heart). By looking at the combination of all these markers, they gave us a statistical risk of 1/170 of Arden having Down Syndrome. This is just a statistic but how it can be interpreted is if 170 babies with the same markers as Arden were grouped together, one of them would have Down Syndrome
There is a procedure called amniocentesis that can be done to better diagnose whether or not the child has a chromosomal disorder but the procedure also significantly increases the risk for miscarriage and other complications. Since termination was never really and option for us, we elected to not go through any further testing.
So we waited month after month after month. Some weeks I wouldn’t even think about the fact that Arden may have Downs. Other weeks I thought about it every day. We told a few family members and some of our close friends. We knew that a lot of people were told the same thing we had been and had perfectly normal babies. Some of our friends even came out and said that they were told the same thing but had never said anything to anyone. None of their children had Down Syndrome. And 1/170 was a very small number. It’s less than 0.6%. I was certainly trying to mentally and emotionally prepare myself for the possibility, but the chances seemed low, very low, so I wasn’t exactly expecting it. The hardest part was not knowing. We just wanted to know. I wanted to pray, but wasn’t sure what to pray for. I didn’t feel right praying that she wouldn’t have Downs. If that’s what God had planned for our life, who was I to say, or ask, otherwise? But, then again, Moses changed God’s mind. I struggled with how I was supposed to feel, something I’m still struggling with as I’m writing this.
As the weeks and days until Jenae’s due date winded down, the thought of Arden having Downs Syndrome became more and more frequent. The final days before her due date I thought about it often, very often. Just like Lucca we decided to do Arden’s birth at home with our midwife. Once labor started the thought really didn’t go away. It was in the back of my mind the entire 7 hours or so of the labor.
Jenae did amazing through the entire labor. I don’t think I could go through so much pain without drugs but, for the second time, Jenae was able to. It was almost over and Arden was on her way out. I won’t go in to the details of childbirth but as she was coming out, I was looking. I was looking for a glimpse of her face, did she have the typical signs of Down Syndrome. When she came out she was faced away from me. I leaned to get a look. And I knew. I knew that Arden had Down Syndrome. So many different emotions and feelings went through my mind at that moment. So many that I couldn’t even tell someone what I was feeling. I don’t really know. Our midwife put Arden up on Jenae’s chest. Jenae looked at me. “Is everything okay?” she said. I didn’t say anything. Just smiled. You know the smile. The “no, everyting is not okay, but I’m going to smile anyway” smile. Jenae cried. So did I. Our midwife, Sally, didn’t have to say anything. She knew. We knew. She knew we knew. Arden had Down Syndrome.
The next couple of hours were a roller coaster of emotions. Shock. Acceptance. Disappointment. Guilt for feeling disappointed. The typical “why me, God?” thoughts that always come to mind when life throws you curveballs. You name it. Everything blended together, it’s hard to explain. I tried to keep my composure. At one point when Jenae was in the bathroom Sally pulled me aside and asked how I was doing. “Feeling a bit overwhelmed?” she asked. “Yeah,” I said as I nodded. That almost did it for me. I almost broke down right there, but I didn’t. It wasn’t long, though. The first moment I had alone, a quick shower, I broke down.
Even though Arden appeared very healthy and all her vital signs were good, our pediatrician recommended that we take her to a hospital to be observed due to the many health complications that can be associated with Down Syndrome. We opted to head down to Children’s Hospital. We were originally admitted in to the ER. Jenae and I along with Sally, our midwife, and her assistant squeezed in to a room in the ER with, at times, up to half a dozen doctors nurses. It was then, sitting in that cramped room, seeing my daughter on a table hooked up to a bunch of different wires, that what I was feeling started to clear up. Something changed at this point. Again, there was (and still is) a lot of different emotions going through my head so it’s hard to explain. Something changed. A feeling of “at peace” may be the best description.
For the next 30 some-odd hours Arden was observed, examined, poked and tested. The great news is that everything about her seems healthy. After one night at Children’s, tonight we were able to come home.
At this point I feel like I should have more to say. Like I should have figured something out. Figured out how I’m supposed to feel about life now as a father of a daughter with Down Syndrome. I haven’t really figured that out. Even trying to decide how we were going to announce her birth on Facebook was a struggle for me. We were certainly going to post a photo. Should I say something about the fact that she has Downs? When people see that she does what are they going to think? Will they even notice? When I introduce someone to my new daughter should I point it out? Will they? Which will be less awkward? Am I really that selfish that these are the things that I’m most concerned with? These are all things that have been and are going through my mind. And I know it’s just the beginning.
Here’s what I do know. I’m home, with my family, together. I have two amazing daughters that are incredible blessings. Lucca is asleep in her room. Jenae and I are sitting on the couch. Arden, my amazingly beautiful new daughter, is lying in between us, asleep as well and I’m happy.
