With love, from Mama:
She went by many names: Piper the powerful, Pretty P, Pip Pip, Pipes, Princess Piper, Sissy, and Little Dove. Her life on this Earth was extraordinary. From the moment of her birth, she rose to the occasion of living. She was vivid.
The only thing that could dull her vibrancy was DIPG, so she left for a place illness could not touch her beautiful brain – a place cancer does not exist. After all, heaven is the only place she could go where she could ever be loved more. In her almost 5 years, she inspired untold numbers of people with her singular and irreplaceable nature.
I will miss so many things. Her wild laughter, her confidence, her curious mind, the way she loved us – telling us countless times a day. How she inspired Harlow. I will miss our impromptu songs with made-up lyrics, her way of starting sentences with “I have a great idea…” and ending them with “wasn’t that a great idea…”, or “let’s pretend” followed by “just say yes Mama.” I love how she said words like “grabity”, “soupcase” “complainments” and “wallypop”. Her appetite for everything, especially food, was insatiable.
If I could share some wisdom we’ve gained through her illness it might simply be “don’t take life for granted”, but sometimes that seems like human nature. So instead, I’ll ask that when you start taking life for granted, remember Piper. Her bravery, her smile, her strength and her joy. Let her story correct your compass. Let her remind you to be grateful. Let her remind you of your own power to make an impact for others.
I want to share recent memory, one I will remember as a turning point of sorts. It was a warm afternoon in early September, and Piper and I were playing outside. She had lost the ability to walk independently only weeks before. She insisted I let her walk in the grass. Walk withoutholding her. She had done so well in her walker the previous two days that she believed she was getting stronger.
I knew I couldn’t talk her out of it, so I stood behind her and let go briefly. She attempted one step, but stopped short, and fell almost face first with her arm taking the brunt of the impact. I was cautious, expecting her to fall, and I still wasn’t ready. I wasn’t prepared for how quickly her body gave.
Immediately I scooped her up and held her in my arms. She was in tears. She said she was mad. We sat and talked a minute.
She asked me why she couldn’t walk anymore.
I said it was the ouchy in her head that caused the trouble.
She said, “when can we take the ouchy out?”
I explained that it didn’t work that way, but that I wished it did.
She said, “when will I walk again? I used to be able to walk.”
I said I didn’t know, but that she was so strong, and that we were proud of how hard she was trying.
She said, “when am I done with my cancer?”
I said I didn’t know, but that we were trying our best to make her feel better. I assured her that none of it was her fault.
She said, “how did the ouchy get in my head?”
I said nobody knew yet, not even her doctors, but we were trying our best to help. That it was why we asked her to take the little white pills each week, and the little green pills before that.
She said, “why don’t they know?”
I explained that doctors haven’t been able to do enough experiments with ouchies like hers, but they hoped to understand soon.
She sat quietly in my arms like she was trying to add it all up. I asked the next question.
I said, what is the most frustrating thing: not being able to walk, or not being able to use your right hand, or your left eye not working like it used to, or having to try so hard to talk and eat?
She thought a minute then said, “the most frustrating part is not knowing why the ouchy is in my head… I want my doctors to know.”
Can you imagine? Please try. I know you can.
My life’s greatest privilege is being Piper’s mother. A mother’s love is unbreakable, and in this case, full circle. I held her first, I held her last.
I think of our stay in the hospice facility just weeks ago. I watched her sleep. The room was so still. I stared at a picture of a flower garden on the wall. It reminded me of the stock art on the walls of the labor and delivery room the day Piper was born. Only then I was excited-nervous. That day I was sad-nervous. I saw the bright owl print cooler bag I bought to keep Pip’s baby bottles cold when we were out and about. But inside now were her liquid narcotics. My eyes wandered to the blue and white striped bag slumped on the floor. It was a baby shower gift I received with joy… a lovely diaper bag for my impending motherhood. It was now filled with haphazardly packed toiletries, only this was no hotel. Outside her room a group of sweet women sang, as I imagine they often do for those who find themselves there. They sang “love transcends all time. It is the voice inside the heart that never stops singing.”
I think of Piper’s birth as the pain I was willing and honored to bear to bring her to into this world, the price all mothers must pay. Comforting her as she died was never something I could foresee, yet it was just as much my duty, my honor. Through the anguish of that experience, I realized it was a price I would pay again and again if given the chance.
Please join us in seeking answers to Piper’s questions.
Because nothing will change unless we change it. And even at four years old, Piper knew this. Our last great adventure together was a trip to Chicago, and as we neared the security check point, I told her we needed to throw away her disposable princess cup. She was indignant, you might even say pissed. She demanded an explanation. I said those were the rules if we wanted to get on the airplane. I’ll never forget… she looked up at me from her wheelchair and said, “well, then I’m going to change the rules.” And I know she will.
We are forever changed by Piper’s life and fight with DIPG. What we ask that you allow yourself to be forever changed too. Each of us can help carry her mighty legacy.
As Piper did, may you see that the time to live is now. May you always find the beauty and silliness.
And may you always be left wanting more.
* * *
With love, from Daddy:
I’ve imagined myself rising up to this podium hundreds of times. I’ve imagined myself standing up tall, composing myself, and letting my voice fill this sanctuary with words of honor until everyone rose in applause to celebrate Piper. I feel like my entire life has led me to this moment. The tens of thousands of pages I’ve written in my legal practice. All of the courtroom appearances, all of the arguments, and all of the trials. All of the dinner toasts, all of the whispers to my girls, and all of the love letters have led me right here. To prepare me to use only words to describe something indescribable. To have only pages to covey what can only be felt.
If I stumble, please forgive me. And should you ever need forgiveness, you shall have it from me.
In truth, I started writing the story of Piper’s life when she was born. Silently gathering the moments that left me breathless and safeguarding them in my mind. Over the last 16 months, I’ve written this eulogy in my head dozens of times. Adding things here, removing them there, and starting over, and then over again. And I’ve struggled. Because the raw materials are too vast, and the subject too wondrous. What I’ve come to realize is that there are no words that would ever be good enough. And there is no way of honoring Piper that would let everyone know how much I love her, how much I admire her, and how proud I am to be her father.
So I’m going to tell you three things. I’m going to tell you something miraculous, I’m going to tell you a secret, and I’m going to tell you something amazing. And through these three things, I hope you get a glimpse of what I got to see. And I hope they change your life forever, as they have changed mine.
It’s difficult to say what a miracle really is. Even Webster himself doesn’t have the answer. On one hand, the dictionary defines a miracle as “an extraordinary event manifesting divine intervention in human affairs.” On the other, it says a miracle is “an extremely outstanding or unusual event, thing, or accomplishment.”
I don’t know which is right, or if either of them is, but throughout Piper’s cancer journey, I begged and prayed for the miracle of her healing. I prayed that she would be the exception to the statistics, and that somehow, because she was Piper, because she was too special not to exist, that she would be different. I never got that miracle. And as easy as it is to be angry (and I was angry), or to turn my back on the mysteries of the things I cannot reconcile with reason or justice, I can tell you that I witnessed a different kind of miracle.
Shortly after Piper was diagnosed, she had to have back-to-back surgeries on her brain and chest. She was in the operating room for hours, and when we got back to our hospital room we fell asleep in the bed. I remember waking up–it was probably one or two in morning–and I stared down at Piper. I remember noticing how deeply and peacefully she was sleeping. And as I looked at her, I saw that her skin was still orange with iodine where they had operated, and her hair was greasy and caked with blood, and I saw the sutures on her head and chest staring back at me like claws, and I started to think about what she had just been through, and what she still would, and I just started to cry. I remember feeling more despair in that moment than I have ever felt in my life.
And I don’t know why, or how, but right then—RIGHT THEN—Piper whispered, “I love you forever.” She didn’t open her eyes. She didn’t wake up. But she spoke those words, and I remember feeling like no matter what happened, we would get through it.
Remembering this moment has brought me comfort over the last 16 months, but it has also brought me insight. As we go through our lives, it’s easy to lose focus on what truly matters. Our jobs can be demanding, there are always more tasks to do, and something is always pulling at our attention.
Before Piper was diagnosed, and even thereafter, I struggled with these same things. But Piper said those words to me, “I love you forever,” because that’s what I said to her. If I can offer only one piece of parenting advice, it’s this: children learn only by example. Every day before she went to bed, I would say “I love you forever.” Her mama did too. It took two seconds. It was easy. And oftentimes I thought it was lost on her. But it was also the most important thing I did every day. Because when the time came for Piper to face difficult things, and when the time came for her to pass on, she knew that she was loved.
And knowing that someone loves you can provide all the comfort you need in this life. I know it does, because when I needed it, in that dark moment at the hospital, she gave it back to me.
I also promised that I would tell you a secret. And it’s not nearly so profound as the miracle, so don’t get your hopes up.
I’ve often thought that honesty is the highest form of moral development. It’s easy to tell white lies, or to hide things about ourselves, or to paint over our transgressions. Owning up to our mistakes, and seeking atonement, is often the most difficult thing our psyches are asked to do. Some adults never learn to be honest with themselves or others.
Piper didn’t have this problem. She was brutally honest. She didn’t like that my apparel lacked glitter. She didn’t like my car. She told me Chef Boyardee raviolis were better than my homecooked meals. (And Piper, if you can hear me, you were wrong about that last one. Flat wrong. But I know you weren’t lying, because you loved that garbage).
There’s one memory that sticks out about all others. Before Piper was diagnosed, she slept in her own room. But after that, she slept with us every night. And one night, more than a year into her battle, she had this look on her face like she just cut her sister’s hair off, or burned down the playhouse, and she leaned in close to Carrina and whispered, “When I used to sleep in my room, sometimes I would wake up at night and brush my teeth again.” And she said it like it was bad thing! Carrina just laughed and thanked her for her honesty. But I kept my mouth shut. Because had she asked me, I would have to have confessed that sometimes I NEVER brush my teeth, and that I ALWAYS lie to the dentist when he asks me how much I floss. I guess we can all learn something from our children.
I also told you I would tell you something amazing. And I will. Someone who has stood in my same shoes once said that watching your child fight cancer schools you in brokenness. And I’ve thought about that a lot. There isbrokenness in watching a child like Piper fight so hard and suffer so much. Your patience is broken. Your security is broken. Your dreams are broken. It can feel like everything is broken, and that you yourself might break.
But that is where my agreement ends.
When Piper was diagnosed, she was three years old and weighed just 25 pounds. Despite this, she endured 2 surgeries, 7 MRI’s, and 40 radiation sessions. She took a cocktail of powerful chemotherapy drugs, went under general anesthesia 60 times, and had to go to the hospital more than 100 times. She did all of these things while slowly losing her abilities to walk, talk, and use her dominant hand. And eventually, she lost her abilities to eat on her own, drink on her own, go to the bathroom on her own, and even hold her own head up.
And if you think that her ability to do all these difficult things while losing so much is the amazing thing I want to tell you about, it’s not. What’s amazing is that she did all of these things while still managing to smile every day of her life. Piper smiled at us until three hours before she died. It was one of the last things she chose to do on this Earth. She lost every function of her body, and suffered through unimaginable horrors, while still managing to find the beauty of living each day that was given to her. Her example can teach every one of us that there is ALWAYS a silver lining.
When everything around you feels broken, and when you are devoured by tears, if you look hard enough you will find something inside you that cannot be broken. It’s already there. It can never be taken away. And if you just hold on to it, there is nothing you can’t do.
Whatever good you think needs doing, do it. Whatever wrong you think needs fixing, fix it. Whatever obstacles stand in your way, crumble them like the dust they’re made of.
And should you ever doubt whether you have what it takes to keep going when everything around you is falling apart, think of my little girl, and let your voice ROAR. Then put a smile on your face, until everyone sees, and everyone knows, that you cannot be broken.