Monday, October 17, 2011


The sentiments expressed in this article are not only true of parents of children with terminal diseases but also of those of us with children suffering from chronic diseases that prevent them from becoming all that other "typical" parents plan for their own children.  Great article.  Great Dragon Mom.  Great lesson for us all!



New York Times
OPINION
Notes From a Dragon Mom
Emily Rapp and her son, Ronan, who has Tay-Sachs disease.
Alexandra Huddleston for The New York Times
Emily Rapp and her son, Ronan, who has Tay-Sachs disease.
By EMILY RAPP
Published: October 16, 2011


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.

Tuesday, October 11, 2011


Borrowed from the blog "Special Needs Mom" (http://specialneedsmom.typepad.com).  Once again, she's nailed it!


To The Author of The Anonymous Note Left On My Car Window

Photo
I think I recognize you!  I do.. I used to live in your world of Black & White, everything in order- in it’s place- I  got a plan- got a schedule- a list of finished projects- checked -off checklist and all. How wonderful for you that your life is so structured , so dependable and predictable that you cling to that line dividing right and wrong, black and white, and that you feel compelled to comment when you think someone is coloring outside the lines.
 This time though, in your hurry to keep things neat and orderly.. you didn’t see the whole picture. I guess you didn’t see the accessible permit hanging from my car mirror, giving me permission to park close to the entrance. You didn’t see the wheelchair lift permanently installed into the back of my SUV, and you didn’t see me unload my nine year old daughter’s pink manual wheelchair that we use for “ quick “ trips. Maybe from your view you only saw my 11 -year old daughter and I, and not Zoe’s pink wheelchair.
  But forget all that, it could have only been my older daughter with me that day, parked in that same spot,and depending on her health at that moment- in your eyes, we would have appeared to be at fault- even though her doctor almost nags me, reminding me to use the medically authorized permit to conserve her energy when needed. Even though she has the same progressive metabolic disorder as her younger sister. She doesn’t have a wheelchair, but she has the same rights- all invisible to you from the perspective of your world.
 I recognize where you are from. I used to live there too. I used to have checked off lists, awards of accomplishments, perfect hair, great skin, sparkly eyes, a quick wit,  a clean car, a social life, a large social network, an organized calendar , vacation plans set in stone, and a no overdue library books . But then I became a Mom. A mom of a special needs child. A child with no lifelong guarantee, no definitive prognosis and no detailed treatment plans. We have good doctors, we have a good attitude and we have a good family life.
 My life is good, but not so easily structured. My skin not so healthy, my hair often flyaway, my eyes most often tired. I am up multiple times throughout the night, I rise at 5 and go full speed until 9 at night, still stymied and determined to do more each and every day.  I miss the friendships I used to have, the  once- so- easy to -achieve professional accomplishments- but I don’t miss that world you live in.
 I am a kinder woman who lives in a world that is no longer black and white. Sometimes gray is good, a salvation, a retreat from something that could be much worse. My priorities were reshuffled for me, and now I would never think to judge another.
 I am always in motion and I am grateful . Grateful for the touch of my child who needs my hands to steady her,  grateful for my child who craves my words to calm her, my child who needs my hugs to soothe her. I am even grateful, that I no longer live ...in that black and white world. 

Thursday, October 6, 2011

Life on the Rollercoaster!

I'm a bit of a procrastinator and I had procrastinated and procrastinated but finally buckled down and on Friday booked our flights to Ohio in December.   The only thing left to do is book a rental car.  We are almost ready to go.

On Monday Jeremy, the Lead Trainer at 4 Paws, called to tell us that the dog being trained for Dawsyn would not be eligible to be licensed as a Service Dog.  Although she was training very well and could all the things we needed her to do for Dawsyn, she has a skin sensitivity and  cannot wear a harness without scratching uncontrollably.  No harness = no service dog license!  Jeremy assured us that he could probably have another dog ready for us by next spring.

On Wednesday Dawsyn had an appointment with the neurologist (everything is great and we are weaning off another medication.  YAY!) and we asked his opinion about getting a dog that was NOT hypo-allergenic.  He didn't like the idea of her possibly have an allergic reaction but agreed that allergy shots would be an option.  I asked Jeremy if that was a possibility for December but he didn't think there would be one ready that would be a good fit with Dawsyn.

This morning I started the process of cancelling our airline tickets.  I quickly discovered that our insurance was not going to cover this particular set of circumstances and that we were going to lose close to $1,000 in penalties and the remaining $1,500 would not be refunded but would be a credit with Delta airlines to be used within the next 12 months.  I wanted to cry!

I took a couple of hours, focused on something else and waited for Jeremy to return my phone call.  I got lots of work done today staying busy and trying not to think about losing a whole schwack of money!!  Jeremy and I managed to miss each other a number of times throughout the day but finally connected this evening.  We talked more about options and it really looked like we were going to have to cut our losses and hope for something in the spring.  He said that he was so disappointed because he felt this dog would have been such a good match for Dawsyn except for the sensory issue.  He told me that she would be placed as an in-home companion.  I asked some questions about her abilities and learned that she has a great nose on her for sniffing out seizures, is good at tracking, is well-trained in behavior disruption and is very loving.  The only thing she can't do is wear a harness and therefore, cannot go to the mall or the grocery store or into a restaurant.   I got to thinking that really, the things she CAN do are much more important to us than the things she CAN'T do.  Jeremy suggested that Ben and I talk about it and get back to him.

It didn't take us very long to make a decision.  We will be flying to Ohio as planned and will be bringing home a lovely in-home companion that is trained as well as the best service dog!  Jeremy was great about talking us through our decision but he still wouldn't spill the beans about which dog was coming home with us!  ALWAYS with the secrets!!  He did give us a few hints and narrowed it down considerably.  We know that our new dog is a female golden doodle whose name starts with "L".  We know that one of the two beauties below is coming home with us on December 17.

          L
            Labelle                                              Lilith

I think either of them will be worth the new grey hairs this week has caused me to grow!!

Tuesday, October 4, 2011

December Dissapointment

We received a call from Jeremy, the head trainer at 4 Paws for Ability, yesterday with some very disappointing news.  They had a whole litter of Golden Doodles in the final stages of training and we new that one of them would be Dawsyn's.  They were all gorgeous, smart dogs and we were excited to have one of them come live with us.  


As it happens, this particular litter has a quirk.  They all have skin/sensory issues and cannot tolerate the harness  or other skin "annoyances".  This means, that after all this training, they cannot be placed as service dogs.  Having previously been through a ten-day training program with Jeremy, we have full confidence that if this problem could have been trained out of these dogs, he is the man to do it.  He can't.  What a great disappointment for us and for the training team!  


Because Dawsyn needs a hypo-allergenic dog, this means another wait until they have another poodle cross suitable.  Possibly April.  


We are reeling from the news and wondering why, exactly, we have had such a run of bad dog luck.  Milkyway wasn't even two years old and had only been with us for 50 weeks when he died of cancer and now a WHOLE LITTER of dogs that would have been suitable cannot be placed.  We can't help but wonder if we are just not meant to have a service dog.  Please pray that we will have clear guidance over the next days as we have to make a decision about what to do.  


Also, we have already booked our flights for December so pray that we can cancel them without penalty.

NT vs SN (stolen from a friend)

Neuro-Typical (NT)  moms volunteer in the classroom to help out.
Special needs moms volunteer so they can take notes on whether the school program is appropriate for their child.

... NT moms look forward to an "empty nest."
Special needs moms wonder who will take care of their kids after they're gone.

NT moms read their children stories.
Special needs moms read their children social stories.

NT moms try to cope and accept their child's imperfections.
Special needs moms whose children are labeled imperfect or defective, nurture them to the full beautiful gifts from God that they are.

NT dads wrestle with their boys for play.
Special needs dads worry their child won't recognize when wrestling would be inappropriate and instead must teach them, "Keep your hands to yourself."

NT moms are asked to chaperone for field trips.
Special needs moms are required to be there just so their child can go on the field trip.

NT moms take their child's developmental milestones for granted.
Special needs moms realize what a miracle the human body is to be able to do what it does after spending hundreds of hours teaching our kids to roll over, crawl, walk, eat, play, etc.

NT moms cringe when their daughter misses a step or gets confused during a ballet recital.
Special needs moms cry special tears as their child painstakingly holds up one foot while leaning on a chair and says, “Look, mommy, I’m doing ballet.”