‘I was unexpectedly pregnant at 40.  ‘I’ll never have fun again. I’ll be caring for a child with so many medical needs.’: Mom births baby with Down Syndrome, ‘She is our adventure, not a burden’

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“I unexpectedly found myself pregnant at 40. Although my husband and I were both shocked, we were excited about this late addition to our family. I had been informed more accurate prenatal testing was available for this pregnancy and I decided to have a simple blood test which would look for different genetic conditions. One day after a night shift (I am a labor and delivery nurse), I was finally taking a nap while my kids were running around like crazy after school. My phone rang and although I usually never answer the phone when I am sleeping, I saw it was the doctor’s office and decided to pick up. It was my doctor on the other end. He told me, ‘Your testing came back positive for Trisomy 21. I’m sorry.’ Even though I’m a nurse, I couldn’t remember which trisomy it was, so I had to ask him to clarify. Then he said, ‘It’s Down syndrome.’ My heart sank.

I held back the tears as he continued to tell me about the course of the pregnancy and the options I had. One of those options was to meet with a genetic counselor. He offered more testing to confirm the preliminary blood test. In my heart I already knew it was correct. I just knew it was true and declined to have further testing. When the phone call ended, I started crying…and I mean ugly crying. I was almost screaming because I was so angry, sad, worried and mad all at once. I thought, ‘How on earth could God do this to me?’ I wasn’t one of those amazing women who could handle a special needs child. I was barely taking care of the three I already had and the problems they caused. I could hardly take on the medical needs of a child with Down syndrome.

For some reason I really wasn’t concerned with the mental differences we would experience. I knew children with Down syndrome frequently had heart problems which required surgery and I knew how serious it could be. I would think to myself, ‘I will never be able to have fun again because I will be taking care of a child with so many medical needs. My poor children will be neglected and I will forget about them. My life will revolve around the needs of this one child. We will never be able to go on vacation or have fun as a family. We will be stuck inside all the time.’ I thought our family life was over.

As my husband and I prepared ourselves for this new life, I had an idea. ‘Why don’t we go on a really great family vacation  while I’m not very far along in the pregnancy and at least have fun one last time?’ We have lived in Utah for so many years and have never been to Zion National Park or taken the kids to Mesa Verde National Park (where we had visited on our honeymoon). We decided to go and visit these places and have our ‘last’ family vacation.

Off we went for spring break to go hike and see the beauty these places had to offer. We had a blast exploring and seeing new things and getting a taste for the outdoors. We hiked the Narrows in freezing cold water but had an amazing time as we soaked up all these fun experiences. One morning, we were having breakfast in the hotel preparing for another fun day of adventure, when another family caught my eye. They were eating breakfast and one of the children was in a wheelchair. I observed as they ate and acted like any other family. In my mind, they were probably preparing for the same day of adventure as we were and they had a child in a wheelchair. The more I observed them, the more I kept thinking if they could get out and have fun with a child in a wheelchair, then we could just as well with a child with Down syndrome. Why wouldn’t we be able to do the same thing? Something in me stirred and I became determined to not let this diagnosis destroy our life. We had reached a point of accepting it, moving on as a family and preparing for this child.

At 36 weeks of pregnancy, I noticed one morning the baby hadn’t been moving. I did all the things I knew I needed to do to make the baby move. I ate something, I drank something, I lay down on my side and paid attention to the movements, but I didn’t feel anything. I called the nurse at the doctor’s office and she told me to come in. I drove so fast. She hooked me up to the monitors and asking about fetal heart tracings. I really know fetal heart tracings. It’s my job and I had been looking at them and interpreting them for 14 years at that time. And I knew immediately my baby was in trouble. She was in distress.

I rushed to the hospital where I was prepared for an emergency cesarean section. I don’t know how my husband made it to the hospital in time but he did. My poor youngest son sat there looking scared as all these people were doing things to prepare me for surgery. My coworkers later told me when they saw my doctor and one of his partners running down the hall for the c-section, they knew it was bad.

The minute I saw her sweet little head with red hair, I fell in love. I could only see the top of her head but I could see her red hair. Once in the recovery room, I was able to hold her for a brief moment and I saw she was a beautiful baby girl. Yes, I could see her features which indicated she had Down syndrome, but she was beautiful. I am glad I was prepared and already knew what to expect. It made the moment of holding my precious girl for the first time  just like I had with all my other children. I loved her and she was mine. I didn’t care about Down syndrome. I just loved her and was grateful to hold her in my arms.

Courtesy of Melody Buck Forsyth
Courtesy of Melody Buck Forsyth
Courtesy of Melody Buck Forsyth

The next few months were a period of adjustment as we had to visit several specialists and learn about her diagnosis. Ruby had a feeding tube and oxygen and it was hard. It was a lot of work. My other children fell in love with her completely and were a huge help. My husband was great support and even though he wasn’t a nurse, he did an amazing job dealing with all the medical equipment. When Ruby was cleared by her cardiologist to remove the oxygen for periods at a time, we decided to try hiking as a family. We bought the cheapest pack we could and headed off to Yellowstone National Park. For the first hike, my husband carried her and you could just see Ruby smiling and having a good time.

Courtesy of Melody Buck Forsyth

For the next hike, I told my husband I wanted to try carrying her. He loaded her on my back and something magical happened. It was the most amazing feeling in the world. I loved carrying her and talking to her and feeling her pull my ponytail. I couldn’t see her face but I could just feel she was happy. I decided at that moment I wanted to hike with her as much as possible. I would show her the world, and I wouldn’t let her diagnosis stop her from seeing the amazing beauty the world has to offer. We decided, as a family, to hike all the national parks together and help Ruby accomplish this amazing goal. We didn’t want a diagnosis to limit her and wanted to show others it doesn’t have to limit them, either.

Sure, it isn’t easy. Traveling with four children is a challenge. Ruby has a lot of equipment we have to pack. She has a specialized diet because she can’t swallow properly so we always have to be prepared with food and drink she can tolerate. She gets grumpy, just like any other child. The weather doesn’t always cooperate. But every hike is worth it. Now that we have visited 26 national parks and 25 national monuments, we see these experiences have helped her develop and strengthen her body. She comes alive on the trail. She loves to explore, run, jump and climb just like her siblings. She eats and sleeps in her pack. She loves her place in the pack. Her diagnosis doesn’t stop her from exploring.

Courtesy of Melody Buck Forsyth
Courtesy of Melody Buck Forsyth
Courtesy of Melody Buck Forsyth

One day on the trail, I was hiking uphill with my kids and it was taking  a long time. It was very steep and another hiker stopped me and said, ‘That’s quite the burden you are carrying.’ I knew he was referring to carrying a heavy child uphill. But I stopped to think about what he said. Most people think having a child with Down syndrome IS a burden. They view it as hard and not at all desirable. I don’t feel this way. It’s one of the reasons why I love to carry her. I want to show the world she is not a burden to me. I will gladly carry her through life. And although I was scared in the beginning, I learned having a child with Down syndrome has made our family complete. She is not a burden. We are more united. We have more love. We have more compassion. We are stronger for having Ruby in our family. I had no idea I would learn so much about myself as a woman and a mother. She is teaching me every day. Every day she makes me smile. She is our adventure.”

Courtesy of Melody Buck Forsyth
Courtesy of Melody Buck Forsyth
Courtesy of Melody Buck Forsyth
Courtesy of Melody Buck Forsyth

This story was submitted to Love What Matters by Melody Buck Forsyth from Salt Lake City, Utah. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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