Receiving the news…
We did not find out that Pierce had Down syndrome until he was born. I had a relatively easy pregnancy, besides the 17 weeks of getting sick at the beginning. We have two daughters and honestly thought we were about to have our third daughter. At 20 weeks, we found out we were having a boy. We were excited and shocked. The rest of the pregnancy went by smoothly. When he was born, the umbilical cord was wrapped around his neck. He was having trouble keeping his oxygen levels up, so I didn’t get to hold him right away.
When he was placed in my arms, I looked at him and made the comment that he looked just like our second daughter, Jovi. I looked up and I really thought they were going to tell me he wasn’t going to make it, because my doctor and nurses were standing around my bed with terribly sad faces. I didn’t understand because he was in my arms and breathing fine, with the help of the little oxygen mask laying in front of his face. The NICU nurse looked at me and said that they think he has Down syndrome.
A million things flew through my mind as they continued to talk, like “I don’t see it at all. I wish I would have gotten the genetic testing done and found out earlier.” Also, things as crazy as, “I wish I could put him back in my tummy” and ”What will my family pictures look like?” All unimportant, but my brain was just overwhelmed. My heart felt like it had stopped.
We found out for certain that Pierce had Down syndrome four days later, on our oldest daughter’s birthday. I was devastated, and I cried. Even with all the tears, I always loved Pierce. I just wanted to get him home and start living a life as a family of five.
On our last day in the hospital with him, I sat there staring at this little miracle man who was just perfect. I wrote this long story about my husband and me from our beginning to that moment on Facebook. I didn’t want people “wondering” about Pierce. It was therapeutic for me to get it out there and express my feelings to everyone we know. Pierce did have Down syndrome, but he was already beating the odds.
I was ecstatic to take him home. My daughters could not wait to have him home either and the love they had for him was overwhelming.
Pierce still amazes us. His sisters can’t get enough of him, and they love him unconditionally.
He sleeps 10 hours a night and takes two great naps every day. He nurses like a champ and loves his rice cereal! He is working hard on his head control and has already mastered trunk control.
Going back to when I initially thought I wished I had known before he was born, I am so glad I didn’t. I would have spent half of my pregnancy worrying, being sad, and possibly detaching. Having him in my arms when I found out, was the best thing for me. It was difficult at first, but then I realized this is our path. I am so excited to see how amazing all of our lives will be because of Pierce. He reminds me daily that you cannot have preconceived ideas of who your children are going to be. They will decide that, and they will surprise you every moment.
Why I Celebrate Down Syndrome…
For me it is important to spread Down syndrome awareness so when parents receive this news, it is not devastating, but brings a joyful, peaceful feeling to them. I wish everyone could get a glimpse of what life is like with a child who has Down syndrome. They would see the laughter, happiness, and understand that it is not a bad thing…just different then they originally thought.
I love seeing families with a child or children with Down syndrome and imagining what my Pierce will be like at that stage. At the same time, I am enjoying his baby stage as much as I can, as I am aware of how fast it goes by. I like to help the world understand something like 80% of children born with Down syndrome, mothers are ages 18-34. I was unaware of that fact, and I couldn’t believe at 32, I had a child with Down syndrome. It is not just something that happens when you get “old.”
All around awareness needs to be had by all. I think anyone who has known someone with Down syndrome will tell you what a joy they were to have in their life. We are just at the beginning of our journey, but Pierce has already brought us so much joy and touched so many lives.
How I Make a Difference…
I have had to look to others who have children or a child with Down syndrome for support for my family and Pierce. I am looking forward to my family becoming more involved with the DSAGSL. We are participating in the Step Up For Down Syndrome Walk in June, and we attended the New Family Brunch at the end of March.
I think the best help we can give to people with Down syndrome is support and faith in them. They need to have high expectations for themselves, just as any person does. I have the same dreams and hopes for Pierce as I do with my other children…for them to grow up and be happy!
I will expect him to follow the same rules and expectations we hold in our home…be kind and loving to each other! I will not let him give up, and already I know I have pushed him harder than I did with my girls at this age.
About my Pierce…
Pierce is a very happy baby! He is only four months old, but loves to smile! His smile brightens my days! One of my favorite things he does is his “dance.” He wiggles his bottom while he is laying on his back and his legs go back and forth. It is adorable.
If I Had One Thing to Share…
People with Down syndrome are more alike than different from people without Down syndrome. I think it can be scary because many people do not know enough about Down Syndrome. The people and families I have met in the past four months who have a loved one with Down syndrome, say that their lives are better because of them. It is a very small world, and people will come out of the wood work to tell you their stories and connections to Down syndrome. I still have moments where I worry, but I immediately try not to spend time on what is to come. Nothing can tell you the future. You have to live each day in the moment (easier said than done) and that goes for all people in your life.
Pierce has reminded me that I don’t know what is to come with any of my children. I have to enjoy the moment we are in and live for it. I cannot worry about what my children will do or be later in life. I love my little man and am glad that God chose me to be his mother!