Saturday, October 22, 2011
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.
Saturday, May 28, 2011
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.
Sunday, May 8, 2011
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.
Tuesday, May 3, 2011
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Monday, April 25, 2011
Sunday, April 24, 2011
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Saturday, April 23, 2011
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Friday, April 22, 2011
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/
Tuesday, April 19, 2011
Thursday, April 14, 2011
Wednesday, April 13, 2011
Tuesday, April 12, 2011
Friday, April 8, 2011
Wednesday, April 6, 2011
Monday, March 28, 2011
I just wanted to take a moment to say thank you for all your support. I haven't been able to respond to phone calls ect but your text messages, emails, cookies, dinners, dog walking, and gifts for us and Sully have really keep us going. There really is no good answer when people ask 'how are you coping' but I know that looking back on the past few months, each time someone sends some encouragement, the love just pushes us forward. Last night home to cookies a friend dropped by and in the morning I opened my mail on the way to the hospital and our friends from Canada had sent us a beautiful card and the most special keepsake necklace. The pendent is little footprints and Sully's initials sjr. I love it, best gift ever. Thanks Em and Andrew. To everyone has asked if there is 'anything you can do'-- yes, there is: please still be there when we resurface from our crisis because I miss you!! The photo of Sully is him showing off a new blanket from cousin Andrea. The nurses all knew the blanket must be from "overseas" because it was so trendy! xox Tara
Saturday, March 26, 2011
We met with the doctor on Tuesday and he confirmed that Sully's symptoms late last week were a result of him not coping with the weaning of nitric oxide (gas delivered through ventilator). The doctor also told us that the PICU team consulted with colleagues worldwide and everyone is pessimistic about Sullivan's ability to survive his pulmonary hypertension. So, sorry not to update the blog this week, but it has just been very painful.
Neil and I have consented to a 2 month trial of oral medications (vasodilators) to try and get Sully off the nitric (and eventually off the ventilator). We also consented to a tracheotomy to allow more comfortable ventilation. It sounds hideous, but after healing from the trach surgery, it is much more comfortable and the kindest thing we can do for him. If the hypertension actually does start reversing, it will still be 4-6 months on a ventilator, and Sully would have to survive the cold and flu season. The doctor was very clear that Sully would not survive the common cold and unfortunately the PICU is full of kids struggling with colds in the winter.
Sully isn't gaining that much weight (he is still only 3.82kgs) but is managing to tolerate all his feeds of 25ml per hour, so the dieticians suggested adding polyjoule (sugar) to the breastmilk to add calories. We have tried formula twice before and Sully just threw it up, so we are hoping polyjoule is easier for him to digest. And hopefully he grows blood vessels with the extra calories, not just hair and nails!
Sully is a tough nut.
Friday, March 18, 2011
Wednesday, March 16, 2011
Monday, March 14, 2011
Wednesday, March 9, 2011
Sullivan's hypertension was so bad that this duct needed to remain open or he would have gone into heart failure. Essentially the doctors were saving him by allowing him to use his fetal system until the pressure in his lungs reduced.
Two days ago (and based on an echocardiograph) Sully's doctors decided he was ready to grow up and took him off a drug that was helping to keep this duct open.
He had another echo yesterday and so far so good, the duct is still open a bit but his heart is working as it should and no signs of heart strain.
This is all very good! And I am reading him Peter Pan. We cuddle every afternoon for at least two hours until my extremities go numb and my bladder starts failing me.
Thursday, March 3, 2011
Monday, February 28, 2011
Thursday, February 24, 2011
Wednesday, February 16, 2011
Monday, February 14, 2011
Thursday, February 10, 2011
Wednesday, February 9, 2011
Expressing is weird, especially at first, the midwives helped me "hand express" first to bring the milk in (literally, I was so tried I let them touch my boobs). They used a syringe to catch the first bit and eventually I was ready for the pump. I was really worried about whether I would be able to produce milk with all the stress, but it is going well so far. I think the most important thing I have done is stick with it, I almost gave up one day because Sully was having such a hard time. I was exhausted, stressed, and missed a whole day just because everything was so full on. It was Neil who really encouraged me and also one of the midwives on the ward. She simply said, you don't have to do it--it is something you should do only if you want to.
Most adults wouldn't survive what Sul is going through right now. Our surgeon says that babies are more resilient than adults. Sully has a tube down one nostril going to his stomach, the ventilator down the other nostril, an IV in one hand, one foot and in both inner thighs...he has just a bit of lung but still tries to breath over the ventilator when he can and has had major surgery to rearrange his guts...now he is fighting a blood infection and pneumonia. I can feel how strong he is when I sit beside him and hold his hand.
Dig deep little one...
Monday, February 7, 2011
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Sunday, February 6, 2011
Friday, February 4, 2011
Thursday, February 3, 2011
Wednesday, February 2, 2011
The past couple of days have been rough for me and Sully. He has had some difficulties with the ventilator - bit complicated for me to try and explain but one issue was he was trying to breathe on his own and got upset and hyperventilated which caused a bunch of problems. At the same time, the ventilator was not calibrating properly and well, it was just a couple of days of up and downs. When Sullivan gets stressed his pulmonary hypertension (too much pressure in his lungs) gets worse and his blood desaturates (gets less oxygen) which is bad. And when Sully's is stressed, I am stressed. Today has been a much better day so far, he tolerated getting turned on his belly and the doctors are weaning him off some drugs including sedation so he will wake up a bit more. He needs to be more awake to cough, cry (without sound because of ventilator), and wiggle to move fluid out of his lungs (amongst other benefits). It is hard for me to see him cry and not be able cuddle him. During the last two days I have started to come to terms with what it really means to have a really sick bub and that as a parent there is not way ever of taking away a child's pain...no magic wands! Anyway, Sully's is a little soldier that's for sure. I bought him some new hats and decorated his room to lift my spirits.
Sully had his first poop 3 days after surgery (Monday) so we had the green light to go ahead and try a feed - 2 mls of breastmilk every 4hrs. Sully tolerated this very well we are very excited that his guts are working in their new position! I have been expressing milk every 3hrs during the day and 4 hourly in the night. I owe a entire post to expressing milk so I will leave the details for now. If we are at the hospital for the feeds, Neil and I are given the task of pushing the syringe of liquid gold through Sully's feeding tube, which goes through his nose into his stomach. The nurse checked that it was absorbed by putting a syring back on the tube 2hrs after the feed and pulling up to see if any was left in his belly. Sounds gross but thought someone out there may be wondering.