This is an excerpt from a facebook note I wrote the day after Braden was born, the day after our lives changed forever.
This was my 3rd pregnancy and 3rd little boy. I LOVE being pregnant. The 9 months of pregnancy, ultrasounds, and checkups were smooth and healthy, much like my previous two. I woke up during the night on September 6th with strong contractions. I labored at home until morning when our babysitter arrived to stay with our older two boys. My husband, Eric, and I headed to the hospital. I had spent the day before at the beach, so I was nice and tan, and I even had my nails done! (Can you tell this was my 3rd?! :)) I was 5cm when I arrived at the hospital, about 10:30am. They got me checked in and I received my epidural. HAPPY! My mom, mother-in-law, sister-in-law, and a friend, who would be videoing, all arrived soon after. I was so comfortable and ready to meet our new sweet boy! My doctor, whom I absolutely adore, was in and out to check on me. The nurses were having me flip from side to side because Braden’s heart rate kept dipping (we later found out it was because his cord was wrapped around his neck) Soon it was time to push. Yes, my favorite part! I know, I’m weird! Like my two previous labors, I only pushed about 2-3 times and we met our precious baby! He immediately went on my chest, and Eric was able to cut Braden’s cord. He was here, Braden Matthew, named after my brother. There were tears, hugs, kisses, and pictures of course! My doctor had left the room, but it wasn’t really noticed because we were relishing in the joy of our beautiful new baby!
By this time, the nurses were cleaning Braden up and getting his weight and measurements. The door opened, it was my sweet doctor, and the look on her face immediately told me there was something wrong. “Oh my word, I must need a hysterectomy. I must be bleeding. What’s wrong with me?” My mind was spinning. It was like slow motion as she walked to my bedside. She grabbed my hand and said, “There’s a high possibility that
Braden has Down Syndrome.” WHAT?!?! The room began to spin. Time stood still. It was as if I was in a dream. “Was this real?” I kept thinking. My tears flowed so hard I could barely talk. “What do you mean? I don’t understand. How is this happening? Why is this happening? I did something wrong. It must be my fault!” Dr. Dyal immediately told me I did nothing wrong, it was not my fault, and that we would love Braden so much! Eric held me as we sobbed together. For a while I felt like I couldn’t even look at Braden. Maybe this diagnosis would go away if I didn’t acknowledge it. But I couldn’t do that for long. I loved him with all my heart. I was his mom, and he needed me. I cradled him in my arms, tears streaming down my face, and deep down I knew we would be okay, even though I couldn’t process all of it at that moment.
Our pediatrician soon arrived (Dr Dyal made a call to him immediately after Braden was born. This is why she left the room) and ordered testing for Braden’s organs that are most commonly affected by DS. He had an echocardiogram on his heart in our room, and he was taken to radiology for an ultrasound on his kidneys and bladder. He was also having trouble transitioning to the world and had several cyanotic episodes (turned blue due to lack of oxygen) NICU teams were in and out to check on him, and he had to stay hooked up to the oxygen monitor. There was a lot of fear wondering if he was going to be okay. Because of the testing and a very busy baby unit, by 8:00 pm, we were still in the labor room. Our two older boys and other family had come to see us , and our nurses were kind enough to let them come back. There were many mixed emotions seeing our family for the first time, but it was pure joy watching Jace and Brantley meet Braden. They loved him with full hearts, and didn’t want to stop holding or kissing him. I was able to relax and take this moment all in!
Eric, Braden, and I finally got to our mother/baby room around midnight. This had been the longest day of our lives. We were still waiting on the results of Braden’s tests, and we knew we wouldn’t be able to sleep until we heard from our pediatrician. About that time, our phone rang, it was our pediatrician. He had the tests rushed, called in some favors, and had the results back already. Everything was negative! Praise the Lord! What a blessing! Braden’s organs were completely healthy!
The next morning, Eric had to run home for some things. As he pulled into our driveway, he heard a song on the radio for the first time, and one we have never heard since. It was called “Never Once’’ by Matt Redman. The chorus says, “Never once did we ever walk along, never once did you leave us on our own. You are faithful, God, you are faithful”. To us, this was a message from God telling us that He was there with us, He knew what we were going through, and He was never going to leave. The peace and strength that surrounded us form that day on was a comfort and place of refuge.
The next 2 months were extremely emotional, and there were several days when I thought that there was no way I could do this. But my firm foundation in the Lord, family, friends, and our church encouraged us all the way. They rallied around us, prayed for us, supported us, cooked for us, and cried with us. Each day got better and better for me. (Read the poem below that I received shortly after Braden was born.) Braden’s dedication at church on December 8th was a turning point for me and my outlook on Braden’s life. It was the day when I honestly thanked God for giving Braden to us, just the way he was, without needing any changes. After I poured out my heart to our congregation, our family moved to the middle of the aisle so our church family could surround us and lay hands on Braden. They prayed for us, Braden, our family, and our journey ahead. It was so powerful and a day I will never forget!
Braden is now 1! He is so cute and always happy! Looking back now on all these experiences we’ve had, we can see how God was preparing us before Braden was even born. He equipped us with all the skills, patience and understanding we will need to meet Braden’s needs. Even though September 6th changed me forever, I no longer view it as a sad day because that is the day my perfect baby boy was given to me. He is a gift and teaches me new things every day. There are still hard times, sometimes it’s an hour, sometimes it’s a day, but the good times majorly outweigh the hard times. Our family is closer because of Braden, and I now know that we CAN do this! I know as he grows, many people will view him as broken or disabled, but we want to raise Braden with confidence, knowing he was created by a Creator that doesn’t make mistakes. Braden will know he can do anything he sets his mind to. Most of all, we want him to know he is unconditionally loved by his mommy, daddy, and brothers.
Our local DS support group is called the Manasota BUDS (Bringing Up Down Syndrome). To learn more about what they do, to volunteer, or to give financial support visit manasotabuds.org
My favorite poem:
Welcome To Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.- c1987 by Emily Perl Kingsley. All rights reserved