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1 in 150,000

This is a personal blog of mine to help cope with raising a son with a rare and fatal genetic disorder.

Ryder Knight born 10.23.17

“1 in 150,000 chance,” is what the doctor told us when describing the rarity of my son's new diagnosis, Zellweger spectrum disorder. All we knew was that this disorder was caused by mutated genes, and has a very poor prognosis. Our world was shattered. Our hope was shattered. And we had a long, broken down road ahead of us. This is my blog as a mother to cope and express my true feelings.

Firstly, I want to say that this isn’t a happy blog. This isn’t an inspirational story to leave you feeling courageous after you’ve finished reading. This is a personal blog about real and raw emotions my family endures while caring for my sick 9-month-old son. This is my safe space to write about the good, the bad, and the ugly we face on a daily basis. This is a place for me to express myself without having to sugarcoat reality.

Ryder Augustus Knight. 10.23.17


The Beginning

When the test came out positive, I sobbed. It wasn't a joyous sob, it was a scared and confused sob. I was on birth control. How could this happen? This test had to have been wrong, right? I took a second one, positive again. A billion thoughts and questions spun around me. I felt dizzy and stumped to the ground. It took me all of five minutes to come up with a decision. I was going to keep this baby. But now the hard part, what was his father to be going to think? When I announced the pregnancy, my boyfriend handled it a lot better than I expected. He supported whatever decision I made and that was all the confirmation I needed. We both agreed that with the circumstance being that it was, There was a reason for this baby to come into this world. It was greater than us, and we believed God had a plan.

It's funny how strong a mother's intuition is. I knew Ryder was a boy since the beginning. I even referred to him as a boy before his gender was revealed. Once it was confirmed he was, in fact, a boy, his father and I started playing around with some ideas for his name. His father joked about naming him Ryder after the 80s show Night Rider since his last name was Knight. I fell in love with it.

Hopes and Dreams

Like every other parent to be, his father and I would talk and wonder about what our son was going to be like. Would he be sassy and appreciate the arts like his mother? Or would he be resourceful and independent like his father? Would be athletic? Intelligent? A rebel? What would he be like? Maybe he'd be all of the above. We agreed that no matter what, we wanted to raise our son to be respectful and to make wise decisions. But also to live life to the fullest, and always remain true to himself.

The Difficult Pregnancy and the Induction

My pregnancy was never easy, to say the least. I had morning sickness throughout the entire nine months. My heartburn was so bad it would make me sick to my stomach, and taking Tums became a ritual. I had cramps, I started to itch, I felt fatigued at all times. Anything a pregnant woman was at risk to get, I got. Luckily, I never had to be hospitalized. It was just bad enough to keep me miserable my entire pregnancy. I persevered though, once Ryder arrived it would all have been worth it. And the good thing was even though I was sick, Ryder showed all signs of a healthy baby. That was the only thing that mattered. It wasn't until I was 34 weeks when something started to seem unusual. Ryder's abdomen was growing a few weeks behind the rest of this body. My doctor didn't seem too concerned about it, but she decided to induce me the day I turned 38 weeks. She said the sooner he comes out, the sooner I can feed him and he can add the weight he needs to his belly. I agreed and we set the date for October 23rd, 2017.

The Pregnancy

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1 in 150,000
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