I have never felt more useless as a father than when I got Oliver’s diagnosis. Being confronted with the reality of the possibility that I may have to bury my son was earth shattering. On top of that the dichotomy of his happy demeanor with the severity of the diagnosis didn’t line up for me. 

Yes he had some health complications, but he was happy and playful. These two things made no sense for me, one plus one was not equaling two. How could this beautiful little boy be in stage one kidney failure. He doesn’t even know how to walk and talk yet. Why are we talking about hormone therapy and possible kidney transplants?

All the things that my boy may not ever be able to do started running through my head. He may not get to stay out late with his friends in Highschool, have a prom, find the love of his life, or hold his own baby. But, then Oliver would pull my face to his chest and pat me on the head. It was as if he was trying to tell me it would be okay. 

If it wasn’t for Oliver’s smile and my lovely wife’s steadfast determination to give Oliver the best life he could have I probably wouldn’t have been able to get past that initial shock. This was not a problem that I could fix with a set of tools, it didn’t come with an instruction book. I was outside my depth and felt powerless. 

Everyday my wife is taking Oliver to an appointment or on the phone with a doctor. She has near single handedly done the work of a small team of medical professionals managing his care. I was and am still in awe of watching this amazing woman take on the world for her son. And she didn’t wait for permission to do so. She figured out early on what she needed to do and didn’t let anyone stand in her way. 

It took me a little bit longer though to find my spot. And to be honest I’m still terrified that I am not doing as much as I could. Don’t get me wrong I still do all the typical dad stuff. Putting together toys and beds, hanging stuff on the walls, and putting the stroller away. I’ve found that the place I help the most in Oliver’s journey is being the calm in the storm. 

Sometimes that means staying up late watching Big Bang Theory with him because he took a late nap after a long session of physical therapy. Or being the sounding board for my wife when she is stressed out by a doctor. Or singing to him after he wakes up from anesthesia because he is afraid and just wants to be held. 

Lowe Syndrome may have changed the rules of the game. I may not get the chance to teach Oliver how to ride a bike. But I will be his rock for as long as he needs me. And at the end of the day that’s what being a father means.