“The best moments of my life run together in a happy blur. I remember feeling elated as my dad gave the toast at my wedding, but I don’t remember the words he spoke.
I remember the intense love I felt for my first child when she was born but I don’t recall what I said as the nurse placed her in my arms. But when it comes to my worse moments, I remember every detail.
The worst moment of my life happened while sitting on a clinic bed covered in white crinkled paper. My husband Andy, called me just an hour before, ‘The doctor called…it’s not good. I’m on my way home.’ I dropped the phone and my heavy 22-week pregnant body fell to the floor. ‘Oh no, oh no, oh no.’ I stammered. It’s as if my mouth needed to repeat what my brain couldn’t believe was true. I had an abnormal ultrasound with my second child a week-and-a-half before. The doctor called to tell us the blood screen came back positive for a chromosomal difference and we needed to come to the office for the results. My ever-optimistic husband walked through the door with a look I had never seen on his face. I unbuttoned his constricting military uniform as he got sick over the toilet. We then sat on the bathroom floor and cried; I felt his hot tears roll down my chest.
Courtesy of Jillian Benfield
Andy helped me off the floor and we somehow made it to the doctor’s office. We sat on the paper-covered bed waiting for the results in silence. The doctor walked in and broke the sterile quiet, ‘It’s not good. Your son has a 99.9% chance of having Down syndrome. It’s normally at this point people want to talk about their options.’
‘Okay,’ I said, ‘What are the options?’
‘Option 1 is you terminate the pregnancy. We don’t do that here, but we have a clinic we can send you to.’
‘What’s option 2?’
‘Option 2 is you can continue your pregnancy with a high-risk doctor.’
‘Can you tell me what Down syndrome means for his life?’ I asked.
‘Oh… well, at worst he’ll never be able to feed himself and at best he’ll mop the floors of a fast-food restaurant one day,’ he said with a wave of his hand, dismissing any room for hope. ‘But don’t worry, you don’t have to be a hero. If you decide to continue the pregnancy you can have the baby here and we can keep him comfortable. But we don’t have to do anything drastic to save his life.’
In other words, we could let our son die. We walked out of the exam room where a heavy-eyed receptionist handed me a pamphlet for a Down syndrome support group an hour away. I didn’t want support, I wanted to disappear.
During this grief-filled period, the nights were mostly okay. I was thankful for pregnancy-induced fatigue. It was daylight I feared. The Southwestern sun rose over the mountains and shined too brightly on our reality. Only I didn’t realize I was in the dark about what our new reality could be. I didn’t know anyone with Down syndrome. I grew up in a small town where there was one special needs class at the back of the high school. I had taken the doctor’s word of what Down syndrome meant for our son. I was too grieved to look outside the small box he put our son’s life in. I remember one day passing our wedding portrait hanging on the wall of our new home and bursting into tears; I had no idea our story would become a sad one.
Then one day I wrote about it. I had people from all over the world reach out to me, one was a mom involved with the Down Syndrome Diagnosis Network. I joined their online pregnancy group and I couldn’t believe what I was seeing. I thought these women were spinning a tapestry of what our lives had become with manufactured positivity. But I stuck around and little by little, amongst virtual strangers, my grief turned to hope.
Courtesy of Jillian Benfield
I didn’t know about school inclusion and how kids with disabilities have the right to be educated in the general education classroom, I didn’t know there are hundreds of college programs for young adults with Down syndrome, I didn’t know adults with Down syndrome were living longer and more and more living independently. I didn’t know.
My doctor thought my son had a life not worth living so I grieved like a death had taken place. But Anderson has given me new life, he’s given me new purpose, he’s changed me through and through. My old definition of success used to be a narrow one. It was defined by fancy degrees and white picket fences. It’s why I clung to the stories of college grads with Down syndrome and married couples rocking an extra chromosome. And if I’m being honest I still want those things for him. But what I want my old doctor to know, what I want the world to know, is if he doesn’t get there, his story, our stories will not be sad ones. His value is not tied to his resume of worldly achievements. His life is worthy because he is loved and because he loves.
Courtesy of Jillian Benfield
Anderson is now 4-years-old. The biggest threat to Anderson is other people’s low expectations which is why our expectations of him are so high. We are pushing him with therapy and school inclusion and will continue to do so. But if he never makes the winning basket or stands on homecoming court like the kids in viral stories I will celebrate him. If he never makes it to college and earns a degree to hang on his office wall I will be proud of him. If he never masters the art of this language or never moves away from home I will relish in his life. Even if he mops the floors of a fast-food restaurant one day like the doctor said; if he works hard, if he is being his best self, if he is being a light to those around him, then it will be enough.
Even if. There is nothing on the end of that phrase that could make my son less valuable. I love him for all he is; I will love him for all he will become. Even if.”
Courtesy of Jillian Benfield
The Down Syndrome Diagnosis Network is a pro-information organization that advocates for up-to-date and unbiased Down syndrome diagnosis experiences where families quickly know they are not alone. DSDN also connects and supports over 8,000 families through their free online groups.
This story was submitted to Love What Matters by Jillian Benfield, a former television news anchor turned military wife and work-from-home mom of three. Her middle child rocks an extra chromosome, also known as Down syndrome. Follow Jillian’s writings through her website and Facebook page and Instagram here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
Please SHARE this story on Facebook to encourage others to live life to the fullest.
Read more beautiful stories about children with Down syndrome here:
‘We were literally one in a million. Identical twins with Down syndrome happens once out of every million pregnancies! We had been chosen for this task.’
‘How could this be? My ultrasound nurse told me the baby DID NOT have Down syndrome. The nurse looked at me and asked, ‘Are you going to keep her?’
1,205 Shares Tweet Email amniocentesis, disability, Down syndrome, down syndrome diagnosis network, downs, DSDN, extra chromosome, family, kids with disabilities, love, Love What Matters, mom, Mom Life, mother, motherhood, Parent, parenting, pregnancy, special needs ‘I said ‘I don’t want to live anymore, my kids deserve better than this, I should have never had them and dragged them down with me’ I wanted a lifeline. I wanted that chance of hope.’‘I found myself gasping for air. It did not matter how much I tried to breathe in, it felt as if nothing was going inside my lungs. A few days later I developed a bit of a cough. I could have died while on the mountain.’
Source: lovewhatmatters.com
