Sully's Bench

If there ever comes a day when we can't be together, hold me in your heart, I'll stay there forever - Winne the Pooh

I am a Dragon Mom

Notes from a Dragon Mom by Emily Rapp
October 15, 2011
NY Times Online

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.

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.

The Healing Power of Baby Photos

Heartfelt is a voluntary organisation of professional photographers who photograph sick children, these children are either terminally ill, critically ill, extremely premature or stillborn. It is a privilege to photograph these children and their families providing precious memories for them to keep. Heartfelt is dedicated to providing this gift to families in a caring, compassionate and heartfelt manner.

It is an unfunded group and relies on the goodwill of photographers and suppliers who donate goods.

Helen Roberts took photographs of little Sully, she is a wonderful person and talented photographer. The photos we have of Sully and of us as family are very special to us. Thanks Helen.

Ross, of Tara

That is what the hospital writes on baby's name bands until they are named. I hold Sully's in my pocket. I can't write about the last afternoon of Sully's life today because I need more time to describe it as beautifully as we experienced it. We had professional photographs taken again so maybe just showing the pictures will be better. By Friday, May 6 Neil and I decided it was time to let Sully go. Someday I will write more about that too. Sincerest thanks to the all the staff caring for Sully but especially, his primary consultant Peter, surgeon Cathy, his primary nurses Billie, Olivia, Mary and Guy, and Honorah who was Sully's nurse on Friday. As we said goodbye to Honorah we told her how well she had done and she admitted it was the first time she had done it. I was really surprised, she seemed so comfortable with Sully dying and with our grief.

I have been so scared for months that Sully would die, and my biggest fear always was that he would die without me there. My second biggest fear was that I would be afraid. But I wasn't. I am sad, but not destroyed. I love being Sully's Mom, he will always be my 'of' and I will always be his place.

Belated update

Sorry I haven't updated my blog for a while Sully hasn't been feeling well for the last week and it has been extra stressful and exhausting. He is having some airway screening tests today and a CT scan of his lungs. He likely has a urinary tract infection which has been making him feel unwell but the major issue is that he is having trouble maintaining his oxygen saturations when awake and is having "life threatening episodes" several times a day. To help these episodes the doctors have adjusted his ventilator settings to CPAP; Sully is essentially breathing against continuous pressure and controls the rate and volume all by himself (this is actually a step forward). Also his feeding tube may not be in the right place so he is currently getting an x ray...he has mostly been sedated the last few days in order to keep him stable.

Sent from my iPhone

Good day

Back on track today, had a 4hr nap this afternoon...and was still up at 10:30 pm when we left the hospital but content...he loves his monkey blanket it's really cute.

Sullivan Rallies

After sleeping the day away, slowing recovering from his hypertensive crisis, Sully woke up happy and alert. He played hard (lots of smiling, kicking and arm waving) then fell asleep again for the night. Neil and I slept in the parent room just in case. Yesterday took 10 years off my life. Who knows what today brings...

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Backstep

Unfortunately Sully has taken a turn for the worse and has been sedated the last couple of days. The sedation helps his blood vessels in his lungs relax so he can breath easier. He is being tested for infection and started on a course of steroids to bring down the inflammation in his lungs. Neil and I won't be venturing very far from his side this weekend.

Sent from my iPhone

Cyclists raise money for CDH Australia

Neil has recently donated his time to coach some introductory cyclocross clinics. Participants donated a gold coin to CDH Australia. $300 was raised and donated in honour of Sullivan who is still very much fighting for his life. Thanks everyone and good luck in the first race today. For more information about the cyclocross series visit http://cx.pacc.org.au/

Monkey

Thanks for the monkey and clothes Auntie Hannie. I had my vaccines today and was very brave. My speech pathologist also visited me and gently played with my mouth with her finger. I liked it a lot. I now have a tube that puts food into my intestine instead of my stomach because I was swallowing heaps of air and not digesting my food very well. I feel much better and like dancing and singing with my Mum and Dad; they move my arms and legs for me and I laugh.

First Bath

Soothing Sullivan

He had some wind and was kicking his legs and crying so I asked his nurse if I could pick him up. After a few minutes he passed out. Sully is freakishly strong for a bed ridden sicky. I told him he could kick all he liked but I was still stronger. I loved being able to pick him up when he was upset; it is the first time I was able to do that. Sullivan has some trouble with swallowing too much air and vomiting or having painful wind pains. Poor baby, he gets so upset and turns white or dusky because he can't get enough oxygen.

The Hungry Caterpiller

Sully loves this book so much he silently squeals when I read it.

Growing brains and lungs

Sully is feeling well today and had a good echo - the best one so far. He needs to grow more blood vessels in his lungs...and more brain cells. His head circumference is quite small so less sleep and more play is required! Brain growth pushes out your skull...and if you don't use it you lose it. Fortunately I am sure he has inherited lots of brain from Dad and can afford a bit of loss...no one really needs to remember every single thing they read, hear or see.

Happy Birthday Daddy

I had a tube change this morning and have been sleeping and sleeping. I have been having some trouble maintaining my oxygen saturations but hopefully my new tube will help the air get into my lungs better. I am listening to nice music and Mummy is patting my belly. Love Sullivan

Mini Neil

Mini Neil is awake from surgery feeling out his new set up. Little monkey disconnects himself every 2 secs but seems much more comfortable already. I think he has my eyes??

Trachy in!

Sully was a star in surgery. He needs to be flat on his back with no cuddling for a week but then he will be like a new little man.

Day before surgery

waiting

as good as it gets