I really didn’t know what to expect. I mean, sure, I was hopeful for some answers. I couldn’t help but think that if we could nail down what exactly was going on, then maybe we could better equip ourselves to help Mark. We’d know better what to do, who to seek out and how to approach all his unique needs. And this test was easy enough to perform. Just a quick swab of the inside of Mark’s cheeks and then simply wait.
But nothing—absolutely nothing—could have prepared me for the results.
Extensive genetic testing revealed a massive list of specific conditions, diseases and disorders that Mark had a genetic predisposition to—372 different conditions, to be exact.
Talk about having the wind absolutely knocked out of you.
First, the genetic counselor went into damage-control mode:
This doesn’t mean Mark will come down with all of these conditions.
He won’t necessarily have to deal with any of these until later on in life.
He’s doing remarkably well considering all that we know now.
But then she returned to the grave reality:
He will likely suffer from several—if not many—of these listed conditions, including conditions that aren’t even listed.
I’ll never forget what I asked her next. It was the exact same question I later asked Mark’s biochemical geneticist, too:
“When can we breath a sigh of relief?”
I wanted to know when we could cross some of these conditions off the list and simply not worry about them.
When would we be able to whittle this massive list down to a more manageable amount (if there is such a thing)?
Would we ever be able to not live in fear of something catastrophic popping up unannounced?
I’ll never forget both their responses. They were the exact same: Never.
That was 3 years ago.
As anticipated, things continue to pop up constantly. And it’s always very rare issues, too. It’s always conditions that have no simple answer or symptoms that Mark’s many doctors simply have no experience with. Still, I often feel like the wind is completely knocked out of me. Every day, there’s at least a handful of times that something about, related to or with Mark catches me off guard. But in the midst of it all, I’ve had to learn not to fear.
I’ll be frank. My initial reaction was to be swallowed up by it.
How do I care for Mark if the doctors don’t even know how?
How do I (joyfully) parent a child whom I know is most likely doomed to suffer so terribly?
How to do I keep going knowing my very best will never be enough?
These questions—and many others—still continue to creep in. That’s why I said I had to learn not to fear. But, thankfully, as with anything else, practice has helped me make progress. It all came down to a choice.
I could focus on what I feared: the reality and gravity of Mark’s future and the part I could play in it (including the lack thereof).
Or I could focus on what I knew: God is in control of everything (Isaiah 45:7, Job 42:2, Proverbs 16:4).
When we choose to dwell on our fears, we’re ultimately placing them higher on our priority list than God Himself. But if our thoughts and our hearts are where they should be to begin with—completely focused on God and His truth—then our fears get pushed aside and crowded out by the freedom that comes from giving back everything that was never ours to begin with. Fear can often be boiled down to a lack of control, control that was and never is ours to begin with.
But I’m human. We’re all human. And to say this process is hard is a vast understatement.
I know. I had a list of 372 autosomal recessive conditions staring me in the face. And the reality of each and every one of the items on this massive list were only feeding my fear. But, thankfully, I had another reality also. I had a Book that could feed my trust, too.
What if Noah had looked at the reality of his surroundings instead of listening to God? He wouldn’t have build the ark that saved him.
What if Lot’s wife had listened to the angel’s warning, God’s message: “Escape for your life. Do not look back or stop anywhere in the valley. Escape to the hills, lest you be swept away” (Genesis 19:17 ESV)? Then, she wouldn’t have turned into a pillar of salt (Genesis 19:26).
Our fears are valleys, too. And we can very much become swept away by them. But no matter what our circumstances are (or ever will be), escaping our fears is always in our control because we can choose to focus on God—and His track record—instead. In short, we can choose to follow Noah’s example and learn from the woeful mistake Lot’s wife made.
And so I’ve learned to put that spreadsheet away, love and care for Mark the very best I can and focus on God as intentionally and as fully as I am able.
I’ll never be able to forget what likely lies in store for Mark.
I’ll never be able to help prevent any of it.
But I can escape the fear of it because I also know something else: I’m never alone. The One who is in control of it all is also with me.
Grace to Grow On: Joshua 1:9
Name it. Identify your fear. Be as specific as possible. Don’t let it masquerade as something it’s not. Letting it lurk around in the peripheral of your thoughts gives it the opportunity to fester and grow. This enables its power over you to grow, too.
Ask yourself what’s stronger: your fear or your trust in God? Then, purpose to act—and train your thoughts—accordingly.
We’ve already been given a spirit not of fear, but of self-control (2 Timothy 1:7). Choose to act on the latter to put the prior where it belongs!