But even if **

"As long as they’re healthy”

I love watching friends evolve into motherhood as they watch their expanding waistlines without much fret, but in anticipation of what is to come.

They’re buying all the latest gadgets and gear that babies on the 20’s need (can we say the 20s??), bombarding all the online forums and what is normal or not, abstaining from deli ham, caffeinated drinks, alcohol & whatever their latest recommendations are in an effort to birth the most perfect miniature version of “them.”

They’re dreaming about the baby’s hair & eye color and what he or she will excel in. Will she be artistic and creative like Mom or love football in the crisp fall air, all while serving up the best biscuits for Sunday breakfast this side of the Mason-Dixon, like Dad? Rooms are eventually painted and signs are hung. The ones reminding baby just how loved she is and how blessed her parents really are, that she is finally here.

A prayer answered perfectly.

Friends and family can’t help but to dig a little deeper as the clothes and midsection grow. Gender reveals are all the rage now. Cannons blowing out enough confetti to fill a stadium. These events are meticulously thought out and planned down to the exact item on each charcuterie board or… the color of smoke being forced out of something really large.

They come around, trying with every ounce in them to refrain from rubbing the new mama’s belly like a genie in a lamp but with anticipatory excitement must ask,

“What do you REALLY want?! A boy or girl??”

And mama, no doubt sweetly and very motherly already, proudly replies instantly,

“I don’t care. As long as they’re healthy.”

Ahhh such a good answer.

Mother-to-be is already beaming with pure contentment and delight. She’s got this whole motherhood thing wrapped up even before it has begun.

And she really means it, too. Which is both beautiful and yet to a mama like myself…. so very painful to hear. A cringe settles in our hearts each and every time we hear that dreaded statement, albeit meant with the very best intentions.

But what if?

What if your panel comes back highlighting a defect? What if your perfect miniature you is already brewing a medical whirlwind of congenital abnormalities, cognitive issues, renal agenesis, cerebral palsy, Down’s syndrome, or any of the other “defects” that 1 out of 33 babies in the United States are born with?

What if your lifelong adult dream is about to look a whole lot different than you could have ever envisioned?

Listen, I’ll tell you an ugly secret.

I said it, too.

And. I. Lied.

Guess what? No one could’ve possibly been more blown away that my perfect, born-a-few-days-before-my-birthday, red-headed boy could have some sort of genetic disorder that would cause a lifetime of attention.

“But even still….”    **

I had no idea, at age 26 that I, personally would need a lifetime of refinement. But it is more than well with my soul to be on the receiving end. Sounds insane right? Kind of like I’m lying.

But let me expound. I’ve learned how to be more compassionate, understanding, forgiving, & yet protective; protective of my family, our time, my energy, & yes, our feelings. I see EVERYTHING completely different than I did in my BC years. . BC, meaning “before Cystinosis.”

It is a continuous process of stretching, growing, being enlightened & persevering often coupled with lamenting, crying, and asking the dreaded “why?”

With rare diseases especially, folks don’t understand or know what’s transpiring behind the scenes and can be awfully quick to judge. But that’s honestly true with anyone’s life, now isn’t it? It only reinforces everything we’ve learned so far. Social media cannot fully be trusted.

At the end of the day, while I might wince when I hear that old worn out phrase of, “As long as they’re healthy…” I totally get it. I understand fully what that means and with what level of naivety it is said. It no longer makes my heart ache as deeply as it once did. I too, alongside the prospective parents hope and pray for their perfectly healthy child.

So today, if you’ve found yourself reading this and you too once whispered that phrase in your heart but find your family living a stark contrast…know that your cries are heard, your efforts are seen, and you are loved.

You will always come across well-meaning (or quite frankly otherwise) people proclaiming nonsense that isn’t…well-thought out. And honestly whose words are just plain ignorant and hurtful.

Don’t let that define your day, your long-lasting joy, or even that precise moment in time.

Let it REFINE you, redefine you, bring you to your own mindfulness, and at the very most… praise the One Who deserves it…

No matter what.

**Reference Daniel 3:18

“But even if He does not, let it be known to you, O king, that we are not going to serve your gods or worship the golden image that you have set up!””

‭‭Daniel‬ ‭3:18‬ ‭AMP‬‬