Any gripe or complaint in life has to be dropped kicked to the curb when compared to what I think is the THE SINGLE HARDEST thing a human could go through: being the parent of a seriously ill child. I was friends of friends with a nice couple Zen and Lenore. I met Lenore when she was pregnant with her son. Her fiance Zen was taking my headshots. She already knew he was going to be named Hunter. Vivien was about one, and we had mommy talks. I later heard through our mutual friend that they had had their son and gotten married.
Then when Hunter was 16 months I got an email for a fundraiser. Hunter had been diagnosed with Leukemia. I was dumbstruck. His parents are this cool, hip couple. Attractive, kind, living a very normal life. I know there is no profile for people dealing with tragedy, but I was stunned to hear they were going through this. I went to the fundraiser. I think like a lot of people I didn’t know what to say, how I would act… what can you say to a mother whose child lies in a hospital seriously ill? Other than I will pray for him, affirm for him, see him whole, vibrant, healthy. The only constructive thing I could think to do was bring them food.
I visited Lenore and Zen and Hunter at LA Children’s Hospital a few times either bringing food from Campanile or homemade. There is no good food at that hospital, and they are too devoted to their son to leave him to go anywhere good. I was shocked at how they had to live. Bad enough to go through the agony of seeing your precious, beautiful boy full of cords, wires, poked and prodded, but most of the time they only had half a room. They were all living in half a room. One would sleep on the bed with Hunter, the other would be on the chair bed. They had their possessions piled high. DVDs, computer, change of clothes. And separated by only a curtain, another family was going through their own hell. Lenore and family were there for 5 months. (A friend who was helping with fundraising for the hospital said, “Well, I’ve heard the families can give each other comfort.” I said, “That’s BS; would you want to share your life crammed in half a room with complete strangers?”)
Yet, they were so positive and so gracious. They said they were humbled and felt lucky because there was a chance their son would be all right, but they had seen kids there who were so ill or disfigured they wouldn’t. I was so touched by their courage.
And then joy, they got out. Hunter was better. He would still need to see the doctor monthly, but his signs were good. Yeah. His family had had it with LA at this point and quite rightly thought a healthier lifestyle for all of them was in order. So, they moved to Oregon.
One day Lenore was in town, and we met for lunch. It was great to see her out of a hospital. They loved where they lived, and even going to Portland once a month for checkups was ok as they liked the hospital more than in LA. They were paying down their medical debt to a manageable level. I was so relieved. Maybe life is like a movie with a happy ending.
But some movies have sequels that shouldn’t be made. And I got a notice about another fundraiser. Hunter’s cancer had returned. No, it can’t be I thought, how can they go through this again? Then there was a quest to find a bone marrow donor for him, made more complicated by the fact that Hunter is of mixed race, so it’s harder to find. Then he did have the transplant. Things were going well. More life in the hospital, then out of this hospital. Back and forth. Many visits to the ER when his fever spikes. Recently, on her FB page Lenore said all was good.
And now, his fever has returned. I am stymied by what this little boy has had to go through. By the courage of he and his parents. Lenore wrote an essay called Teardrops and Smiles on his website recently, and I asked her if I could share it here. She said yes.
It is so unfair. I don’t have the words. But these are hers.
wow. thank you for posting this.
i’ll stop whining about our coughs, runny noses and ear infections RIGHT NOW.
i weep for hunter and his family…
say a prayer for him!
Thanks for posting this story, Daphne. I just found out that if you go to “every monday matters”, that you can leave a message there for beautiful Hunter, and his family.
God watch over them, and keep them.