Thankful

Welcome back to my blog. I say that to me as well as to you, since I have been neglecting the poor thing. I hope that this is the resumption of a healthy relationship.

In any case, I want to take a different tack for World Prematurity Day today. So often we talk about the problems of premature birth, and struggles in the NICU, the need for more research and better medicines, and the fight to keep fragile babies alive. Today, however, I want to talk about what happens when the tiny preemie makes it and manages to grow and thrive.

Sometimes we get so caught up in making it through the day-to-day that we forget about the big picture. The Kid was sick both the week before his Bar Mitzvah and the week after. By some miracle, he was mostly healthy for the weekend.

My wife and I were going crazy trying to lasso all of the myriad details into submission, and we still were not done by the morning of the Bar Mitzvah. We worked through the night before the Bar Mitzvah, neglecting to take the time to write the speeches that we’d give to The Kid during the service. My wife was able to write something quickly that morning before the service, but I was so busy wrangling parents and friends for the walkthrough that I didn’t really think much about mine.

When the point in the service came for us to deliver our speeches before giving him his new talit, I had to make it up on the spot. Thankfully, I often do some of my best work in those situations, and this was one of those. Here (transcribed from the video) is what I said to my wonderful preemie at his Bar Mitzvah:

When we lost your brother, we were completely lost. We did not see brightness ahead of us. And then six years later, we were gifted with a miracle. And you have been a miracle your entire life, whether it be your singing and dancing around the house, your writing songs, your strength of will, your strength of character. To know what’s right — and what’s right for you — and not letting anybody shake you from knowing what you want to do and what you feel is right are strengths that anybody can admire, because you are one of the most amazing people that I have ever met.

And I am so proud of you. I am so proud that you are my son, and if I never do anything else in my life than give the world you, I’ve left the world a better place. I love you.

He is an amazing young man, and he has an amazing sense of what is right.

His Bar Mitzvah project was to raise money for the March of Dimes by writing a song for the occasion and giving a CD with that song and three others to anyone who donated at least $5 to his fundraising campaign. I’m extremely proud to say that he’s raised over $1,000 in this initiative, with more still coming in.

He did an awesome job with the music, but asked for some assistance with lyrics. I helped out late one night when struck with inspiration, as I was with the Bar Mitzvah speech a couple of weeks later. Together, we made some tweaks to the wording to help it fit more closely to his vision for the song, so I credit both of us with the lyrics. It is so awesome to hear him play and sing this. The CD also includes an instrumental version of the song, a four-hand sonatina that he wrote, and two other pieces that he’s written as part of a musical that he’s working on.

Today, I’ll leave you with the lyrics and the thoughts that I am so thankful and grateful that this miracle has become part of my life and my wife’s life, and that the March of Dimes was able to develop treatment, therapies, and medical regimens that kept him alive. Enjoy:

Never

(words by M. Goldhaber, J. Goldhaber; music by J. Goldhaber)

I’m a living miracle,
I nearly wasn’t here.
Like my brother Ben before me,
I was born too soon, I fear.
Preemie fears have always been
We’d never make it through.
“Never” is a word that frightens
Preemie parents too.

“Never” gonna breathe
“Never” gonna see
“Never” gonna make it
“Never” gonna be
“Never” gonna grow
“Never” gonna live
Never will forget
And I’m gonna help to give

He was born at 22 weeks,
I was born at 28.
I’m here to tell our tale, though
That it’s not just due to fate.
Many years ago, my chances
Wouldn’t have been worth two cents
But the March of Dimes was working
And that’s made the difference.

“Never” gonna breathe
“Never” gonna see
“Never” gonna make it
“Never” gonna be
“Never” gonna grow
“Never” gonna live
Never will forget
And I’m gonna help to give

While preemies still have it tough
And it often takes a lot
To keep us going in the face
Of the issues that we’ve got.
The March of Dimes has led the fight
To help give us a chance
And now I’m writing music
And I can sing and dance.

<instrumental chorus>

So I bring my songs to you
To help the March of Dimes.
Let’s give more kids a fighting chance
To live productive lives.
Let’s change the preemie focus
And turn the words around
Instead of “never” being tough
Let’s give it a new sound!

Never giving up!
Never lose a beat!
Never let it stop us!
Never cry defeat!
Nothing’s gonna stop me!
My mission here is key:
Help the March of Dimes
Help others just like me!

Never giving up!
Never lose a beat!
Never let it stop us!
Never cry defeat!

But since they’re here,
You’re hearing this song.

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