Admiration

Last month I read a story in the news that made me nauseous. I literally rubbed my eyes when I first read the headline because I was so tired that I thought I must have read it incorrectly. I wish I had.

A Washington couple was awarded 50 million dollars in a wrongful birth lawsuit. The husband was a carrier of a rare genetic defect and they'd sought prenatal testing to see if their baby was affected. Tests said he wasn't. He was born and it turns out that he was. They sued the hospital and the lab because they would've aborted their son had they known.

Their son. The little boy who is now 5 years old. The little boy who they're essentially declaring is a thorn in their sides. The little boy that they wish hadn't lived. The little boy whose existence just won them $50M.

How could a panel of jurists award anything to a couple who was suing over their son's existence? If you want to know what's wrong with the world, it's this right here. My hope and prayer is that little Oliver is never capable of understanding what his parents have done.

This story made me feel incredibly hopeless. It has literally been on my mind every single day since I heard. It created in me a feeling of near despair at the state of the hearts of the human race. We've come a long way and I don't mean that as a compliment.

Sure, we're currently so advanced that we can genetically test the unborn so that their fate rests in our filthy hands. But guess what? That's not our call. It has never been our call. Advances in the fields of genetics and technology should be used to bless and extend compassion, not to selectively destroy. Say what you want about this couple and their current state of suffering, but what they've done is sick and hurtful. There's no way around that.

Sometimes I feel like I'm constantly bombarded with stories like this one; stories of the selfish and of those who lack compassion, stories laced with evil and rampant with people attempting to take on the role of our Supreme Creator. But in the middle of all of that chaos and despair, I see stories of hope and love and compassion. I see stories of goodness and selflessness.

I had a phone conversation with my little sister two nights ago that expelled that doom and left me sitting in my chair smiling and feeling hopeful. I hope this won't embarrass her, but we need to hear the stories of hope that offset everything else.

My sister and her husband had their third child, a little girl named Kate, in February. Kate is a lot like Oliver in many ways. She was born with genetic abnormalities and Hirschsprung disease (which is essentially a congenital intestinal disease that has caused a lot of problems for Kate physically). Her genetic testing also came back inconclusive. Their databases don't include another person with the same abnormalities that she has. No one is a match. There's no name for her disability. She's forging her own, new path.

Wendy and David didn't know there was anything wrong with Kate until she was born either. Kate's life has been full of surprises and challenges. Their sweet baby girl has had moments of peace and comfort, but has spent an enormous amount of her time here on Earth struggling and suffering. She's had good days, but has spent unnatural amounts of time in the hospital undergoing surgery after surgery and battling infection. She's there right now.

The difference here is that Kate's story inspires hope. Her parents genuinely and selflessly love her. If her parents had known about her condition, she'd still be here fighting the same fight that she's fighting now. She would have still been granted her life. She would have still had the opportunity to meet her challenges head on, just like the rest of us.

And she's not less deserving of that chance than we are. If anything, her situation makes her more deserving. The soul of a spiritual giant lives inside that body that doesn't ever do exactly what she needs it to do. How brave of her to come here anyway.

Wendy was sitting in a Ronald McDonald House room when she called me. She was trying to get some rest while David stayed with Kate. She called me expressing some of the uneasiness of a mother who doesn't know the fate of her own child. She called with the exhaustion that comes from watching your child suffer for weeks at a time, knowing there's nothing you can do to alleviate that suffering. She called with the assurance of a woman who knows that her baby is in God's hands. She called with the faith that no matter what happened to Kate, everything would be just as it should be.

I thought about that news story. I thought about the stark difference between that couple and this one. I thought about David and Wendy, who consider Kate a blessing, not in spite of her disability, but because of it. I thought of the countless hours of service they've been able to give that little girl . . . hours of service that they're grateful for, not bitter about.

So Wendy and David, I just wanted to say thank you. Thank you for being the kind of people who are capable of recognizing your own blessings. Thank you for giving Kate the best chance she could have at a wonderful life. Thank you for fighting for her and with her. Thank you for loving your baby the way God chose to send her to you. Thank you for being the reason that a tiny, little girl in her circumstances will feel joy and love. Your examples have changed our family. We're all immensely proud of the parents that you are. Thank you for being the kind of people who are worthy of admiration.

And Kate, thanks for coming. Thank you for giving this family the opportunity to love and serve you and yours. Thank you for being powerful enough to withstand the nightmare that you've been battling to be here with us. We are forever grateful.

4 thoughts on “Admiration

  1. MamaEl

    I agree and disagree with you. Those beautiful babies who come to this earth and struggle with genetic disorders are an amazing blessing for those who have the privilege of loving them. They teach parents about purpose, devotion, strength and down right courage. My baby laughed within 24 hours of open heart surgery. He is amazing.

    However I think without a greater understanding of life and god's plan their are many, especially a father who has suffered from disease, that could want to protect a child from the disorder in the best way they know. For some people this protection comes in the form of abortion.

    Though I am morally opposed to abortion, I believe there are some who see it as an a unselfish act in such cases. We would be the first to advocate against it as there are many families hoping to adopt that are willing, or even wanting to be placed with a special needs child.

    If they truly believed they were saving their child from a lifetime of pain and suffering I can see why the jury ruled as it did. I disagree with their choice. I hope every dime goes to therapists, treatments and research for a cure. But we will never hear that side of the story because that doesn't sale papers.

    God bless your Kate, god bless Oliver and god bless our son. May we ever strive to be the pure spirits that they are.

    Reply
    1. Post author

      I totally understand what you're saying about those who don't understand God's plan thinking they're doing the good and merciful thing (although the dad didn't have the disorder, he was just a carrier and could pass it to his children). However, I don't think it excuses it.

      And whatever mistake was made in regards to prenatal genetic testing doesn't soften their argument . . . we're suing you because we would have aborted our son had we known. If their son's existence is so awful for them, they could have given him up to someone just like you who would've loved him to pieces and wouldn't think they got the short end of the stick, instead of using him as leverage in a multi-million dollar lawsuit. It's plain sad, in my opinion.

      I'm just grateful that there are wonderful people like you and my sister who are champions for these sweet children. Thank you for that:)

      Reply
  2. As the oldest sister of a woman born with multiple disabilities, in a day before any diagnosis was possible, I can't imagine my life without my sweet sister, Marilyn. For 54 years, our mother showed us what mothers are all about. Marilyn came home at 6 weeks of age to die, and returned to our Father 4 days after her 54th birthday. We would not be who we are without her example of never complaining, just moving forward. We miss her so much, but would not ask her to return to a lifetime of pain and problems. I saw the same article you saw, and you so eloquently spoke the words I couldn't. Thanks so much. Love your family.

    Reply

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