♪♪ I love you, I love you. It's you
♪♪ I adore. And every new day,
♪♪ I love you some more.
I do.
Do you want to read a story with me?
Sometimes she’s like, “OK,
that’s cool you can hold me.” And then at other times she’s like “no, no, no,
give me my space.”
And then she’ll just have those moments where she opens her eyes
and she looks at you, and she sees you,
and even if she can’t smile or laugh anymore, you know that she’s in there,
and it’s everything. Adelaide is diagnosed with infantile
spasms. A really innocuous
word for a really intense and horrible form of pediatric epilepsy.
Sort of out of nowhere in May of
2016, I was contacted about auditioning for Hamilton.
As my daughter is being diagnosed with epilepsy, I am also
going to be Alexander Hamilton in the biggest musical that has ever been written.
We moved halfway across the
country to Chicago. In hindsight, it was the
best thing that could have happened to us.
It wasn’t until we found Dr. Marcuccilli at Rush that we
found like we had a medical home.
I said, “You’ve come to the right place.”
A pediatric epileptologist is not only to be able to control the seizures as best I can
but more importantly to ensure that these
children can achieve the maximum quality of life.
He looks at Adelaide, and he takes her hand and he says,
“We have a lot of work to do, little lady.”
And I almost just burst into tears, because finally I felt like we
had a doctor who got it, and here was a doctor who was going to
fight with us and for us and for her,
and that meant more to me than
any prescription or order for a test
just to know that we’d found a fighter.
He would always talk about the medicine but he would talk about,
more importantly, there’s a child there and our daughter is there
somewhere and he’s going to dig in there and try to find her.
I told Dr. Marcuccilli one time, I said “Hey man,
I do appreciate how
the special relationship we have and I know it’s 'cause
like I’m Hamilton, you know I get it,” and then I talked to some of the other patients
and they were like “Oh, that’s how he is with us, too.” I said,
“OK, that’s cool. No, no, I get it.”
The social worker at Rush found out that I was taking care of Adelaide
on my own. She went out of her way to make
sure that we were getting the help in our home that we needed because she realized
that Adelaide was going to receive the best care if everyone in our home
was healthy as well.
Hamilton’s important. I’m honored and humbled to have been given the opportunity
to say these words and be this person on stage.
The other thing that I am honored to do is to be Miguel
as Hamilton and say, “Let’s talk about epilepsy.
Let’s talk about the needs of amazing places like Rush."
My job requires me to cry. I’m almost at a thousand
performances now. In those moments where sadness takes over,
I actually think of my daughter and how hard she fights
and I think of my son
and how hard he loves her, and I think of my wife
and I think of — see it works really well
and I think of our family, and those are the thoughts that sort of
keep me moving and keep me going and keep me from
falling apart.
♪♪ I love you, I love you, I love you, I do.
♪♪ I love you, I love you, I love you, it's true.
♪♪ I love you, I love you, it's you I adore.
♪♪ And every new day, I love you some more.