Robin Webb Manzella.
Born in California in 1961. Died from complications on April 24, 2000 receiving double lung transplants.
Diagnosed with Cystic Fibrosis at 11 years old in 1972.
The sweetest person I have ever met in my entire life.
I recall once you told me something that haunts me to this day. You went to a CF camp for kids as a youngster to have the opportunity to be around others struggling with the same debilitating condition all in various stages of agony.
And each and every one of those kids shouldered that pain for the duration of their lives.
We didn’t talk about Cystic Fibrosis much at all. Instead we talked about everything else you could imagine. You loved shocking me with how wild you used to be which still is hard for me to fathom.
The haunting aspect was when you told me all of the friendships you had made at the CF Kids Camp. And then I asked, “That’s pretty cool. Do you keep in touch with any of them?”
“Oh, so many of them! Yes, I used to keep up. I would write them and they would write me back.”
“Used to? Not anymore?”
“Yeah. It’s only me and one other camper still alive.”
Well, damn.
It’s been 26 long years since the world suffered you leaving us. It feels like yesterday.
I was just an idiot kid at 22 years old then. Now, I am just an idiot adult, but still I understood enough about people even then to know that you were special in ways I would not really become aware of just yet.
I think that’s always what drew me to you in the first place. There was something so disarming about you, but in such a quiet and intensely powerful way. I don’t even know how we started talking to be honest. I just quickly understood you would shape my life with every conversation for the very rest of it. And today cements that very thought as I guess I am the living proof.
I just wish you were instead.
You were one of the two strongest people I had ever met back then.
And no one has come close to either of you since.
That’s both astounding and depressing when I really think about that.
I am not writing this for me, I don’t think. It’s just maddening to think you are gone, but you will never be forgotten in the hearts that matter. So I have to do something with this, and so I write.
I recall so vividly the conversations we had, the countless hospital visits Bryan and I would venture out on a weekend night and go see you first. I don’t know how you did those hospital stays all alone like that. I didn’t then and after doing so many of them myself in my own life since, that alone is pretty remarkable. The six month clockwork hospitalization to clean your lungs. The steroids. The pain and the side effects.
You were 4‘11 and maybe 95 pounds, and me well over 300 at the time yet you floored me pretty regularly. Still do.
You taught me how to survive living in chronic pain.
You don’t complain. You don’t think of what if or how unfair it is.
You wake up grateful for what you have accomplished and fight like hell to make more than seems possible out of whatever that day unkindly delivers you.
Doctors told you that you would not live to see 30 years old.
Doctors told you that you cannot get pregnant and have a child.
Doctors told you that once you were pregnant that delivery would cost you your life.
And on and on and on..
Still, you told me that didn’t matter to you. You wanted to be a mom. No one or thing or disease was going to stop you.
Spoiler alert. Nothing stopped her.
You had Joanna and what a wonderful challenge life would become, but you were always so happy you did it. You loved her in ways my words cannot hope to convey. Lot of conversations about that. About friends who left you. Tired of your sickness.
Then you asked me to go with you to the hospital to see the transplant doctors at Ochsner.
Of course. Duh.
That was a hard day, which I was not expecting at all. They were so fucking brutally honest it terrified the fuck out of both of us. I don’t even want to go into it, but it wasn’t good.
It was so late in her life the surgery alone with double lung transplants would be invasive and devastating to her body. Survival was the goal. Just survival.
As I wheeled her to the elevator I asked her why she waited so long as the doctor made it clear she had waited a long time. I didn’t understand that. Robin confided in me that she could have maybe or even maybe should have tried for a transplant more seriously sooner.
That was a choice she made with deliberation.
Why?
I made a promise to myself I would not abandon my baby girl. I would see her 18th birthday so she would have a mom at least through high school. Well, damn.
I understood. Immediately.
There was always the risk if she tried for the transplant sooner, with the death rate so insanely high with CF patients then and her age and the toll her body had already endured with everything she did in life she didn’t want to risk that.
I could feel the fear she had, it was overwhelming.
Just not personal fear. Fear for her family. Fear for her daughter.
We had a lot of life-lasting conversations that day and many others. You were my favorite confidant to this day, and I miss you deeply with everything that I am. And you have molded me to be so much more than I what I was.. you gave me an incredible blueprint for navigating my life of chronic pain, surgeries and complications, family duty, loyalty,integrity, and how to treat people regardless of how you are feeling.
The greatest lesson I learned from you was that life is just about fear. And when you let fear dictate your actions, well, you have lost the point of living life. The only fear we should ever carry is not taking the risk we clearly see if there to be taken. The risk of living the life we want for ourselves.
Robin, you risked it all every single day over 39 years of life for what you wanted. You risked everything for your family. And you accomplished it.
That’s what lives in me every single day. Your strength. Your resolve. Your desire to stare down everyone telling you it’s a disaster and you showing up with a hard hat on ready to go another day. Another round.
I have so many more stories about you. Another day perhaps when these tears feel willing to share them. You are gone, but you are not forgotten.
If there’s something in your life you want then go for it. If there’s someone you love then show it. If there’s something you fear then face it. If there’s someone you miss then tell them.
I miss you every day of my life, Robin.
I will never forget you.
And I love you.
Rest In Peace.
Always,
Brian Milici
Anyone know how to post photos on here? Wanted to post Robin. It worked on my Facebook easy enough. Thanks in advance for those not accustomed to photo bombing entries lol.. <3
Hope everyone is doing well! It’s a lovely day outside. And my life only brightens with each passing day of freedom. I’m beyond blessed and the key part is being aware of it as we are never where we imagine ourselves being at any point really. Love and live purely and truly in every moment you can with everyone and everything you encounter and life can only be momentarily painful yet eternally beautiful.
May you always find your smile!
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