You’ve got to take it one day at a time.
That’s how my wife and I approach the challenges of parenthood. You see, when my son Ezra was diagnosed with spina bifida (SB) myelomeningocele and hydrocephalus at 23 weeks, the doctors and specialists told us that there would be a very good chance that Ezra wouldn’t have much (if any) function below the waist. No leg movement, ergo no walking. Bathroom function was most likely out of the equation as well.
The day Ezra was born, he had to undergo a spinal repair to close the lesion in his back. This was in no way a “fix,” but more a necessity, and we ended up living at the children’s hospital several weeks post-birth. He’s going to need a second surgery to relieve the excess fluid collecting in the ventricles of his brain (a surgery we were hoping he’d be able to get away without), and while it’s risky (every surgery is risky and this is brain surgery) — we’re told that babies are resilient. That probably won’t be our last stay in a hospital either. SB babies are prone to urinary tract infections, so we’ve been back living in the hospital a few times since his birth.
But let me tell you, at 5 months old, Ezra is doing great and defying the odds. This boy can kick and move his ankles. Of course this doesn’t mean he’ll walk; he may need braces, or a wheelchair, or both. Time will tell. He can poop. Believe me, he can poop. And he can pee a bit, but we have to catheterize him every three hours to make sure his bladder gets emptied.
Yes it’s tough and exhausting (and scary the first few times), but when we think about what could have been, well — it’s really not that bad. Also, we know of too many other situations far worse than our own. We’re trying to raise three children so this is hardly the time for a pity party.
Back to the peeing thing, I actually wrote a song about it. Well, about catheterization. I’m a TV, film, and theater actor/singer/dancer/song writer. One night, I was cathing Ezra and I didn’t have any expressed milk to give him to calm him down. So I started singing to him, which is a normal occurrence. A little bit of Nat King Cole, some Michael Jackson, Temptations, Ella Fitzgerald, Louis Armstrong — you know, the normal baby stuff.
But nothing was working, so I just started singing what I was thinking. Like a real-life musical — with babies! I couldn’t get the darned thing out of my head, so I kept working on it. A few days later, it was a full-on song and Ezra and I decided to record it, as any performer would do.
It’s hard being a performer and a father, trying to be there for your family when sometimes work calls you away. I’m pretty much a stay-at-home-dad unless I’m teaching, auditioning, gigging, or on set or tour. It sounds like a lot, but really, there’s a lot of time to be at home with the kids while my wife is at work on that 9-5 grind. So while I’m usually at home, when I’m not, it’s hard.
I remember one time I was beginning rehearsals for the Riverdance 20th Anniversary Tour and on the first day, I got a call from my wife. She told me that she had to call an ambulance and Ezra was in the hospital. That was a true test for my wife and I. How would we make my career work? I wanted to come home but my wife wouldn’t let me — because she’s amazing. We have such a great support system in our family that she was well taken care of and I was able to compartmentalize and focus on the show.
Though we’ve had our struggles, I must say that Ezra’s journey has been incredible. We’ve been blessed with such an amazing little boy, filled with so much light, love, and magic. All three of my children are wonderful, and I love being a father. I have many titles but “Dad” is the one I’m most proud of. It was difficult to come to terms with the fact that my son may not be able to tap dance with me. But, I keep telling myself, Stevie Wonder is blind and look at what he can do. So Ez and I play the piano. We write music.
I don’t know what miracles his future holds, and I don’t know what marvelous things he’ll accomplish. But I do know that I’m not going to let a little thing like “not walking” stop me from teaching him everything I know, and being the best dad I can possibly be.