Heroic MeasuresPublished 9 years, 4 weeks past
This morning, I walked Rebecca and her best friend to kindergarten, all of us enjoying the crisp spring sunshine after the long, cold winter. The girls ran ahead of me to see if the playground had been re-flooded by last night’s rains (it hadn’t) and then balance-walked a low retaining wall. Once inside the school doors, I hugged and kissed Rebecca and told her to have a good day, collecting a hug and kiss and a “Love you, Daddy“ in return. I watched as she tromped down the hallway in her sparkly new Bella Ballerina shoes and pajamas (today is a special Pajama Day at school) and rounded the corner out of sight. And then I handed her principal a Do Not Resuscitate order.
She’s still so alive, so very vital, but we know that could change at any moment. We’ve lived through it once already, last August, when she went from playing on the beach to the literal brink of death in just three days.
We carry DNR cards with us, and have given the school a DNR form sealed into a manila envelope with our names and phone numbers written on the outside, because if she suddenly seizes, our overriding goal is to make her as comfortable as possible while she dies. The EMTs or hospice or we ourselves will give her medication to take away the pain and, if at all possible, the fear. As much as she needs.
Because we know what will happen if the tumor induces seizure and she’s forced back to life. We know that once it’s reached that stage, there are mere hours left, even if we permit life-prolonging measures. Heroic measures, they’re called. Hours, possibly days, spent in misery and pain and fear.
We can’t do that to her. If there were a reasonable chance of her suffering leading to a cure, yes. We did that last August, submitting her to multiple surgeries and the difficult recovery afterward, because there was reason to think that doing so would save her life.
Now we know better. We know that when the cancer overwhelms her, there is nothing that can stop it. We know that the best we can do is make what’s left of her life as normal and happy and full of love as possible, and minimize any horrors as it ends.
We’ve thought about pulling her from school entirely. That would ensure that if she does have a sudden seizure, she’ll do so with one of us. By sending her to school, we risk it happening when she’s not with us, and inflicting that experience on her schoolmates instead.
We send her to school because she loves it there, however much she may complain about having to get up in the morning and get dressed and put on a coat to walk to school. Try as she may to hide it, she loves to learn. She loves her teacher, her classmates, and her friends, and they love her in return. It would be selfish of us to take that away, despite the risks, despite the hours of separation. It would shift some of our burden onto her shoulders, force her to pay the cost of our sorrow and fear.
There are so few things we can do for her now, so very few things, but we can do this: we can give her her life, as whole and unbroken as we can manage, and an unspoken promise to fiercely guard it from even ourselves. We can give her this. Our last gift.
I have lived this part of your experience in my own life. Whenever the phone rings or one gets a text, it’s a jolt. I hope both you and your wife are finding some time to yourselves and some time to enjoy all your lives.
I think that’s the only gift any parent can give any child, but it seems holier in Rebecca’s case. Most parents get to indulge themselves before preparing for separation. I’d like to give her a hug so please pass one along. I really admire the way she’s living.
I know folks tell you how lucky Rebecca is to have her wonderful family and it’s true. My heart tells me, though, that it is her family who is so lucky to have her. Thank you for sharing. You let us know and feel a tiny, tiny bit of the preciousness of your Rebecca.
So much courage, all of you.
The last sentence of the first paragraph was like a knife in my heart. I cannot imagine how difficult it must have been for you to write it—and the rest of the post.
I sit here imagining her at school, eager for everything, and admire you so much for the profound sacrifice you are making on her behalf.
Your sharing has helped me more than you can know. You, Rebecca and her whole family are a huge blessing to us all. Praying for peace, healing and comfort!
You are all in our thoughts and prayers.
Not your “last gift” Eric… by a long shot. You’re doing well in all of this, ahead of many. Whoever’s helping you with things seems like they’re on the right track and probably a great support for you. Remember “sufficient unto the day is the evil thereof…” – one day at a time.
You have shown incredible strength in your journey with Rebecca. It is nice to hear of the good days and we are impressed with your strength through the not so good days.
― C. JoyBell C.
I am so very proud of you and Kat. The greatest gift that you give to Rebecca is your unbounded love and gentle support. All the rest that you do for her flows from that.
I love you!
You and your family remain among the finest, bravest parents I have the privilege of internet-knowing. Thank you for sharing this ongoing example of true compassion in action.
I’m sure that it doesn’t feel like it some days, but the grace and strength you guys are showing to all of us – and to your daughter – through this is beautiful. Heartbreaking because I can imagine your pain and your uncertainty, but beautiful because even through all of that, you do what you know is best for her. There’s nothing more selfless and painful a parent can do. She’s very lucky to have you guys and your strength for as long as she’s able to enjoy it.
Oh my god, I’ve come to bits of your site over time, one search or another, but this is the first time I’ve come to your front page and read about your daughter.
I’m so, so sorry. I have three young daughters myself, and I’m choking up as I write this. I can only wish the best for you all, and I’ll be thinking about you in the weeks and months to come. I never leave comments, but for whatever it’s worth, I had to write and express all my sympathy and support.
The dictionary defines a hero as “a person of distinguished courage or ability, admired for brave brave deeds and noble qualities”.
When you write your story, as you most assuredly will do, it should be entitled “Heroic Measures – a Love Story”. Not for the measures taken, or not taken, to save Becca’s life, but for the measures taken by Becca, Kat, a host of others, and you to give Becca life. She will, in whatever time she has, have lived more, experienced more, felt more love, than most do in a normal lifetime. Heroic deeds indeed!