Monday, October 17, 2011Tonight's picture was taken in October of 2004 at Mattie's first preschool. I attended Mattie's school Halloween party and contrary to what the director of the school kept telling me, Mattie could clearly sit still and could cooperate by sitting in a circle. This picture is rather ironic, if you could hear the feedback I was getting from the director at the time. Mattie and I both loved the character, Winnie the Pooh. However, that wasn't the reason Mattie chose this costume. He selected it because it wasn't complicated, scratchy, or cumbersome. To him it felt just like clothing, so he picked this costume for practical purposes. Despite the reason for his selection, he was one cute pooh.
Quote of the day: Every man dies, not every man really lives. ~ William Wallace
As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)
For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.
Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries
Last night, I received a NY Times article entitled, "Notes from a Dragon Mom" that was sent to me from a colleague of Peter's. Lauren wanted me to know that this article was very meaningful to her and it made her reflect on Peter and I. She wanted me to know that she views us as Dragon Parents.
Lauren is a Mattie Miracle supporter, so I knew the title Dragon Parent had to be complimentary. The title alone intrigued me and I immediately wanted to know what a dragon parent actually was. The sad part about this classification and realization is being a dragon parent is not something I ever wished to become or wanted to sign up for.
I attached the article below, so you can read it for yourself. I think it is a must read because it reveals the true importance of parenting, connecting and nurturing a child. Which is to be human, loving, and present in the here and now, NOT living in the future.
The article discusses two types of parents, the tiger parent and the dragon parent. The tiger parent I believe describes most parents of healthy and typically developing children. I admit to being a tiger parent at one time, before cancer came into our lives. Tiger parents are concerned about their child's level of education, physical development, and learning skills that will enable one to lead a stable, productive, and happy future. A dragon parent is quite the opposite of a tiger parent. A dragon parent is most likely the by-product of caring for a terminally ill child. The dragon parent is described as being "fierce, loyal, and loving as hell."
Unlike parenting a healthy child, caring for a child with a terminal illness is quite different. As the article states, "We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office." Raising a child with a terminal illness gives one "a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare."
I did not know the labels at the time, but while Mattie was battling cancer, I saw myself transform from a tiger to a dragon parent. When we were battling cancer, the goal was to provide Mattie a future. In fact, once his treatment was over (remember only after six WEEKS off of treatment did we learn Mattie's cancer was terminal) I was very focused on getting Mattie rehabilitated so he could walk, use his arms, and be able to go back to school. I was working on re-establishing normalcy and tried desperately to be future oriented. It was during that six week period I returned to being a tiger parent again. But it was a short lived visit, because once Mattie became terminal, I returned to my dragon status and I remain living life as this mythical animal.
During Mattie's intense battle with cancer, which entailed three major surgeries and 9 months of intensive chemotherapy, I lost my tiger status and became a dragon. When you are fighting to maintain your basic human needs, the only perspective that works is a present focus. The future isn't important and when you can't figure out whether you will eat, shower, pay your bills, or be able to sleep, then I assure you what tomorrow holds is NOT important. When in crisis, I think we all learn to live differently. We become very attuned to the present and while caring for Mattie, it did not matter if he was learning to read, if he was going to be a good athlete, if he could play the piano, if he got a good grade, and so forth. What mattered were his basic needs.... was he eating, was he able to go to the bathroom, and did he feel loved and secure.
Factoring out the terminal illness component of being a dragon parent, I believe being a dragon parent is actually very freeing and is the ultimate form of parenting. It is living in the moment and enjoying your child in that moment. It is not about pressuring your child, forcing him to succeed, and setting unreasonable expectations for him/her. I realize my lens is skewed due to cancer, and most parents will never be faced with having to raise a child who has a terminal illness (thankfully!), but in a way, I wish all of you had the opportunity to be a dragon parent for at least a day. I have a feeling, you would appreciate the moment and your children more, because being wrapped up with societal expectations and pressures can weigh you down.
In a way, what Mattie's cancer did for me was it removed all expectations. I did not have to worry about school, I did not have to worry about play dates, I did not have to worry about whether I cooked or cleaned, or even went to work. All I focused upon was Mattie, the daily cancer battle, and making him happy. Certainly that is an amazing stress in and of itself, don't get me wrong, but when you can solely concentrate on trying to live and love each other, it is a dynamic I never really quite experienced while being a tiger parent.
Though I am no longer a parent, I do think this article gives you a feeling for how our cancer experience may have altered our thinking. We are no longer the same people we were back in 2008. Lauren commented to me that she felt the author was positive and not bitter. My response to her was I agreed, but I also think this mother is in the throws of caring for a terminally ill child. She can't expend the energy right now on grief, sadness, depression, and bitterness. Unfortunately I suspect these emotions will inevitably hit her once she loses her son. She may always remain present focused, as I find I am even today, two years after Mattie died, but the numbness, the feelings of hope, and being positive are not sustainable. Especially after surviving the loss of a child. I appreciated her article very much, and I unfortunately understand and know all too well where her journey is heading.
So I end tonight's posting with the moral lesson from "Notes From a Dragon Mom" which is to live for today and appreciate your children NOW, not for what they will be or will do TOMORROW.
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NOTES FROM A DRAGON MOM
Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.
Santa Fe, N.M.
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him. I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.
How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.
Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.
We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.
Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.
All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.
But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.
But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.
Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. 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.
But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.
A link to the article:
http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1&src=tp&smid=fb-share
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