Hi, my name is Kristie Hammar. I am the very lucky mother to my son, Johan, who has Down Syndrome. He and I along with his father and younger brother moved to Walla Walla from Tucson, AZ in June 2025. He also has two older brothers and an older sister who live outside of WA. Sixteen years ago, when I was pregnant, we found out that there was a possibility of Johan having Down Syndrome. However, without the definite diagnosis of an amniocentesis, we chose to wait until he was born. On the day he was born, I was induced because he was showing signs of distress.
The delivery followed normal patterns and after a relatively short period of time, my beautiful baby was born crying and I let out a big sigh of relief. My relief was short lived because as he was being cleaned off and checked out, a nurse practitioner yelled across the room that Johan has the stigma of Down Syndrome. That was how we found out. I remember feeling as if the air had been sucked out of the room and time had slowed down. My husband and I both had feelings about his future and ours at the time that we know now were irrational, but in the moment we felt them deeply. My mind was so full of what if questions and worry about how the world would look at him and us. I didn’t want anyone to feel sorry for him or for us, but I was scared to take him out of the four walls of the hospital to the real world.
I remember crying with my pediatrician at the time about all of these concerns and I was lucky to have her support him and me. Less than 24 hours after his birth, I noticed that his hands and feet were purple, but not his trunk. After notifying the nurse, he was swept away to the NICU for further testing. Our three young children had not even been able to meet him yet and so we scurried to have them get over the hospital to meet him before he went into the isolation of the NICU. He was diagnosed with a PDA, which is related to the heart, but is not something that can only happen to babies with Down Syndrome. The result was four weeks in the NICU until this healed and he could gain and maintain his weight.
Those were difficult times as I was managing the family with my other three children and trying to be there for feeding times between 9am-9pm everyday. Most days I barely made it, but the joy of seeing my new baby made it worth it. He healed naturally from the PDA and gained and maintained enough weight so that on Thanksgiving Day of that year, we brought him home. As I had time to reflect on my experience, I became frustrated about his birth. After he was born, the nurse practitioner didn’t give us the news about him in a respectful way and I felt like it took away the joy that we felt from his birth. We started worrying and stopped being in the moment.
Much of the concern about his extra chromosome was superseded shortly after he moved into the NICU. It became less about the extra chromosome and more about the fact that he was a baby, my baby, and I learned to let go of some of the worry. It wasn’t completely gone, but I was learning to be present in the moment. That is what I have had to learn repeatedly with him. There is always a doctor's appointment or a service to get for him, but being in the moment with him is incredible.
I learned to focus on his achievements because these took him much longer than it did for my other kids and I learned to celebrate them more. It doesn’t mean that I don’t struggle with some of those milestones that he won’t make (like driving a car), but I wouldn’t trade any of who he is for those milestones. Johan is now a 15 year old boy who is a freshman at Wa-Hi. He enjoys a good laugh and getting you to laugh along with him. There is not a dance song that he will not dance to or sing along to. He loves to cook, help out with chores and hang out with his younger brother. We have made sure that he participates in sports and has been lucky enough to be able to play volleyball, basketball, soccer, track-and-field on school teams along with non-competitive leagues. He loves people and has yet to meet a stranger.
This is Johan's world and we are all spectators watching him become something incredible. I am so grateful that I am able to be called his mom.
