Words. Thoughts.

From a PCD Mom

Someone once asked me if I would have wanted to know about my son's diagnosis before he was born. My honest answer is "absolutely and definitely not."

If we had known, we would have been able to prepare financially. Save extra money for the medications, the doctor's appointments, the "infomercial products" purchased with the thought that "Hey! This might help...", the NICU bills, the surgeries, and the other miscellaneous medical bills.

If we had known, we would have been able to prepare emotionally. I would have been able to prepare for the post-partum depression and anxiety that would knock me down like a sledgehammer and the unknowns of being a medical mama that would pin me down for months and years after he was born. I would have, without hesitation, accepted the help that was offered. Searched for a therapist. If I had known...

But if I had known, I would have spent my pregnancy with him in a state of elevated worry...researching things that ultimately wouldn't give me the security I craved. I would have worried about his quality of life. Could he go to school? How long will he live? Is there a cure? Will he be happy? Instead, I spent my pregnancy with him savoring his kicks, dreaming about his face, and picking out his clothes.

So...what would I have wanted to know?

I would have wanted to know that most days, I won't remember that my son has PCD. Yes, he will do breathing treatments twice a day and put on a vibrating vest. We will go through a bottle of saline mist each week and use the Nose Frida daily. But most days, that will fade into the background of this little boy's life. Those things that were the heaviest burden in the beginning will become part of our day. In the most mundane way.

I would have wanted to know that despite the throat cultures, the lab draws, the ENT, the pulmonologist, the courses of antibiotics, the surgeries and procedures, the handwashing, the nose wiping...he will run. And jump. And climb on EVERYTHING. He will sing and learn things so bafflingly fast that you will wonder how you'll ever keep up with him...

He will greet your neighbors with exuberance, and you'll catch a smile under their hats as they walk by your gate. He will love Spanish and painting and Triceratops and blueberry muffins.

I would have wanted to know that PCD sucks. It's a heavy burden that his parents will carry, and he will one day have to carry himself...although never alone. PCD will always be a part of his life. But I will only know the full extent of his resilience, strength, and joy in contrast to the deep darkness of his chronic illness.