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Wednesday, December 28, 2011

Phoenix Parents: Devoted parent of a terminally ill child, relentless in the search for a cure.

Last month I asked our readers for ideas for a new name to call parents of terminally ill children that are devoted to finding a treatment for them.

I came up with the idea after reading the blog my friend wrote for Parenting. com and a recent article in the NY Times titled “Dragon Mom”. The article is about a Mom who’s child has Tay-Sach’s an awful disease much like Sanfilippo. Tay-Sachs is passed to children in the same way as Sanfilippo i.e. it’s an autosomal recessive genetic disorder. Meaning each parent has to be a carrier for a mutated gene and each give a copy of the gene to their child. Like Sanfilippo there is no cure and it’s fatal. Even more horrific, Tay-Sachs children usually die by the age of 4.

Here is a section from the article, written by Dragon Mom, Emily Rapp:

"We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice. NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster. And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever. I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go."

If you take the time to read this insightful article, you will notice that Emily also makes a reference to a “Tiger Mom.” The reference comes from a stereotype of a strict Chinese mother that raises her child to be a successful adult. Relentlessly driving them in childhood to achieve. There is a new best seller book titled “Battle Hymn of the Tiger Mom.”

I took notice of these two terms after my friend Patty wrote a blog for
An excerpt from the blog:

"Before that morning, I’d known through mutual friends that little Jonah had a rare, fatal illness. But asking Jill more about it always seemed… uncomfortable. What, was I supposed to say, “Hi, I hear your son is going to die” to someone I hardly knew? But also, I’m not sure I wanted to know more. To be honest, I felt a vague sense of guilt whenever I saw them. I felt guilty that I had healthy children. Guilty that I’d never attended any of the fundraising events for Jonah that I’d seen Jill advertise around the neighborhood. Guilty that I knew this terrible fact about her child but pretended not to. That morning, though, Jill reminded me how much it means when parents help parents. It’s not just nice—it’s necessary. And it could mean that Jonah gets one more—or 80 more, god willing—years of health"

Patty’s honest comments brought me back to before Jonah's DX. Thinking back I know my feelings would have echoed Patty’s. I have to do something about that. My answer is a new term for parents like Jeremy and I. Unlike “Dragon Mom”, most parents of terminally ill children are not that scary. Jeremy and I make a point to not shove the doom and gloom of the disease down peoples throats, instead we preach hope. I want to inspire parents not scare them. We can do something about our children’s fate. If not for our children, but for the next generation.

Coincidentally enough it was Patty that came up with the perfect term/analogy for us.
Phoenix Parent (my definition): Is a parent who is capable of performing a medical miracle.

The phoenix is a mythical bird as big as a swan, with beautiful red gold plumage and a tail as long and as beautiful as a peacock's. In JK Rowling’s (Harry Potter) version of the phoenix, the phoenix is depicted as having magical powers; their tears can bring people back from the brink of death and their feathers can fight evil. If only I had a magical phoenix feather wand that I could wave at Jonah, slaying the evil disease.....

The phoenix makes his/her nest of spices, myrrh and frankincense. If your up on your bible stories, you will know that the three wise man brought gifts of: gold, myrrh and frankincense to Mary and Jesus. Myrrh has incredible healing powers soothing upper respiratory issues and cutting down mucus (Sanfilippo children often die of pneumonia, their bodies drown in mucus) Among other things, Myrrh can heal mouth wounds and repair damaged skin.

To harvest Myrrh from it’s tree, you must cut a slash into the tree bark, the sap leaks out in tear shaped beads. After it dries the beads are collected and used to treat infections.

The legend of the Phoenix says that the bird has internal life, yet after a point say 500 years the Phoenix will burst into flames, from it’s ashes will rise a new baby phoenix. It’s debated if the baby bird symbolizes an offspring or a resurrection. Either way it’s symbolic to our situation.

I find the mythology and symbolism of the Phoenix enduring; withstanding the test of time: tears, offspring, resurrection, cure, eternal life, patience, medicinal, medical miracle, hope, love, faith.

I also like that the phoenix is a bird, I often think if I only had wings I could fly. On the other hand the Phoenix has to have a lot of forever, waiting. I have no patience, If only I could sprout wings and fly into the future grab my miracle cure and bring it back to Jonah. I’d then burst into a ball of flames finally satisfied.

I have faith that in time we will have our cure, until then I work and I wait. Sometimes I cry, if only they were tears of myrrh. I hope all of you will help us spread our message, raise awareness and have faith that we will find a cure.

Later today or at your earliest convenience please open the email from Jonah’s Just Begun and follow the link. You can help us ensure a faster cure by supporting the ULTRA-act. After filling in the blanks on the stock letter provided for you just press send and it will go to you congressperson. Please pass the email along or re post it to FB, every little bit helps. The email will tell you what to do, it will be in your inbox tonight.