A Nuanced Diagnosis

July 7, 2016

“I got a phone call from the Neurologist on Monday that Pat’s* genetic work up came back and we now have a likely cause for his autism: he’s an XXY. He’s intersex. This explains so much, and I am both relieved and terrified for what his future might be like if even our family or members of our church were to find out. And the way I cope with things is just by throwing it out there, but I don’t feel like I have the right to do that in this case, which is sad, because right now the world loves him, and he loves the world, and I don’t ever want there to come a day when his cousins or his minister or a kid at school tells him he’s an abomination because of who he is, and who he is is one of the most precious people made in God’s image that I have ever met.

 …I’ve heard so many off-color comments from close family and Christians that it’s made me sick to my stomach. As a Christian it’s off-putting, but I’ve grown up with it and I understand the mentality to an extent. If I were on the fence, or if I’d not believed in God before, I am relatively sure the Christians would have soured my view of Christianity enough in the past few weeks that I would keep far, far away, and would, in fact, actively work to protect Pat from Christianity and the church in general.”

During the height of the Great Bathroom War of 2016, I received this heartbreaking message from a friend. Her son had recently been diagnosed with a genetic condition (google “Klinefelter Syndrome”) that confirmed his DNA was part female.

She told me what this meant for his future (specifically that those suffering from Klinefelter’s are often unable to reproduce) and about all of the unknowns that lurk in the shadows. (A big question is whether or not his XY or XX will be more dominant. That is, there are honest questions as to whether he will identify more as a male or female.)  She stated that she simply couldn’t go public with this newfound knowledge. One quick glance at my social media feed proved why. How could a grieving mother, still processing this diagnosis herself, ever present this delicate information when strong opinions about gender identity were being shouted with such hostility?

It’s taken me two months to write this blog. That’s not because I didn’t want to, but because I really wanted to do it right and I needed to think through how I wanted to approach such a sensitive subject. I have no desire to insert myself into the aforementioned war, but I do want to advocate for my friend and her son. I want to be there for her and to help her grieve well by processing her son’s diagnosis in light of our hope in the Gospel.

When dealing with such a nuanced diagnosis that presents in shades of gray, it’s important to remember that we are called to be quick to listen, slow to speak and slow to anger (James 1:19). I’m not sure when we decided that in Facebook world it was ok for us to change this order around, but I can assure you it’s done everyone, my friend included, a whole lot of harm. With each hateful comment, Christians are branding themselves as unapproachable and that has got to stop. How can we present truth if people are afraid of our reactions when we hear about their troubles?

And so, I want to publish my response to my friend in hopes that it will encourage other Christians to be more cautious and more gracious when they present their answers to a listening world.  After all, you never know when a lonely, grieving mom will be sitting on the receiving end.

Dear Becky*,

Thank you for your honesty amidst such a tough diagnosis. I know you’re grieving and hurting today. I know many things have been lost with this diagnosis – normalcy, the ability to talk openly about your son, the possibility of grandchildren, etc. I wish that I could look into your eyes as I affirm your son’s worth and dignity. No diagnosis will ever, ever diminish his God-given worth.

I hate that you’ve unexpectedly found yourself near the gender battle line that has caused such tension. I hate even more that you feel like the world is standing ready to condemn your son for a diagnosis that is beyond his control.  Even though your situation is different from those that are being publicly debated, I can easily understand why you see the hateful, hostile comments as a direct threat to your son. It must be such a lonely and dark place to stand in.

But please let me come stand with you. And let me reassure you of this truth found in Psalm 119:13-16:

13 For you formed my inward parts;
    you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
    my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.

Sweet friend, this passage is just as true for your son as it is for mine, as it is for every human being. The extra chromosome in Pat’s DNA was not merely a random genetic mutation, nor was it a surprise to the One who created and fashioned him to be exactly the person he is today.

On the nights when you’re wrestling through this diagnosis and your honest questions turn to condemning guilt, remember the words of Jesus in John 9:

And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

Remember this passage and hold fast to its truth, as you hear the judgmental screams coming from the crowd. This diagnosis is not your fault; it is His purpose. It is not a loss; it is to display the mighty works of God.

And for the days when Pat struggles with his own diagnosis and the hardships it brings, remind him that there are many others who’ve struggled as well. In fact, tell him that Christians are promised trials and suffering in this life.

7 So to keep me from becoming conceited because of the surpassing greatness of the revelations, a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. 8 Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.” 2 Corinthians 12:7-10

As the days come and unanswered questions become answered, I hope you’ll be able to rest in light of this Truth, which can be summed up as this: Your son was perfectly knitted together by a sovereign God and you can trust that his diagnosis will be used to reveal to others God’s glory. Personally, I can attest that such is the case.

That’s not to say there won’t be tear-soaked days ahead. But dear one, God will give you the grace you need to make it through the days that lie ahead. He is faithful. He is good. And he is near to the brokenhearted. The hurt this diagnosis brings is not a surprise to Him.

Because you and I are not strangers to adversity, we know what it’s like to long for eternity when all will be made right.  You’ve endured more than many your age and this diagnosis is just one more reminder of the brokenness that exists around us. But, and oh this is a good one, some of the greatest graces are found deep within friendships like ours, of which I pray you have many, many more.  So hand in hand, let’s walk these bumpy roads together, ignoring the scoffers and rejoicing in our Hope.

*To protect her privacy, and because of her awesome sense of humor, the mother has requested to be referred to as “Becky with the good hair” and her son as “What’s that? That’s Pat.” 

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  • Reply Susan Carroll July 7, 2016 at 11:40 am

    So beautiful and perfect! Thank you for responding to this exactly the way most of us feel. Praying eyes are opened because of your heartfelt words!

  • Reply Natalie Kaufman July 7, 2016 at 9:28 pm

    You’re awesome Lindsay! I love your words and how you encourage others with truth. So proud of your friend. I know many other will be encouraged by this message. You are such a great servant of our Lord Jesus. I aspire to be more like you one day!

  • Reply Mollie Sheppard July 7, 2016 at 11:08 pm

    We all need a Lindsay in our lives. Thank you for your heart, sweet friend.

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