What happened when I was busy making other plans.

Posts tagged “children

Goodbye, Nadine

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She was my “first born,” the first dog that was mine to raise. The timing was right–summer of 2001, we had just moved out of NYC the past February, to a small house with a nice yard in Rockland County. Getting her was an experiment–my then-husband was allergic, never had a dog but always longed for one. I looked up standard poodles because I always grew up with large dogs, and heard of their amiable dispositions. I wanted a girl dog because that was what I always had growing up at both houses: Greta, Rozzy, Brandy, and Corey. All girls. I hoped for a smaller dog because our house was tiny, and standards could grow to more than 80 pounds.

I researched and found her breeder, Jake–a Zen master in black standard poodles in Hyde Park. It seemed like fate; he had a new litter coming down from Canada in less than a month. A few were already claimed; but he thought there would be a “little girl” left for us.

I went ahead with the plan because Jake understood the allergy issue, and said he’d be willing to take her back if it didn’t work out. When I told my ex, he was nervous but excited.

She was the smallest of Jake’s bunch, but with a sweet, animated but not-too-feisty spirit. When we went up to meet her in late July, I brought a list of names with me. The first on the list was Nadine–a proper French girl name, I figured. She was a few feet away from us, curious. “Nadine,” I said. She came right to us. It was obvious she would be ours.

We went home that day hoping it would work out. And it did, better than we could have imagined.

Two years later, E came into the world. At first jealous, Nadine soon learned that having a sister was a great thing. She was protective and gentle, and proved to be an ideal dog around kids of all ages, even babies. They grew up together, Nadine was E’s big sister. When I made the decision to split with my ex, there was no question that Nadine would stay with us; we could not split up the girls.

She met B on our second date, and it was love at first sight. We joked it was the French thing (he’s 1/4 French Canadian), but seeing her take to him immediately was a sign for me. She was a people person type of dog, but there were some people she really didn’t like so much, and usually there was good reason. And the people she took to immediately, there was a good reason for that, too. I thought she was an excellent judge of character, overall.

She loved being active, and in her first 10 years, was a great personal trainer to me. We would enjoy jogging together on the rail trail near our old house and she joined B and me on many hikes before stamina became an issue for her. I loved seeing her run around our yard, frisbee in tow. Her favorite game was keep-away.

A wonderful, fun, funny dog, like many poodles, her personality seemed so human. Now in our blended family, she became a glue to help us come together. One thing we all had in common: We all loved Nadine. It was impossible not to. Sport for us would be doing our “Nadine impression,” trying to articulate all of the wacky things she was thinking. At first, it was French-accented, but then it morphed into more of Dr. Doofenshmirtz-sounding voice. She was ever-present and an integral part of our lives.

Last night I had a dream. It was just the two of us, and we were running. She was looking up at me, tail wagging, like it used to.

She was with us for thirteen and a half years, longer than I thought we would have her. But it still feels too short. I will always be thankful for my first born, the beautiful, funny, wonderful Nadine.

RIP, Nadine the Wonder Poodle. Sweet dog, we will love you always. Xo

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Stressing the Stress

I should be happy right now. E, diagnosed last June with Crohn’s Disease, is doing much better. She has had few bouts of stomach pain the last few months and we’ve been able to reduce her meds from seven to one. Her latest test results show she’s bounced back from her bad flare-up last year and the inflammation numbers are much lower. All good news. 

In many ways, I’m thankful for how attentively her pediatric GI has handled her case. They are thorough and scientific in their approach, and have looked at everything from inflammation numbers to liver toxicity to vitamin D levels, ensuring nothing is overlooked. In the past eight months, E has had a colonoscopy, endoscopy, CT scan, hand scan to determine her growth rate (because of the steroids she was given in her early treatment for ITP, and because she’s small, there was concern that her growth may have been stunted; luckily, it hasn’t), bone density hip scan (steroids can also cause osteoporosis; negative), MRI, sonogram (to determine if pancreatitis was developing from one of her meds; also negative), and numerous, sometimes weekly blood and poop tests. We have a clear sense from all of this of her progress, which has, by all accounts and test results, dramatically improved. The fact that she’s been amazingly resilient through all of this, too, has only increased my admiration for her. It gives me comfort knowing this resilience will carry her though other life challenges, and I’m grateful she’s got it in spades. 

So I should be happy. But as her caregiver and the one who makes the decisions, I’m finding myself at a crossroads between what the doctors now want—another colonoscopy–and what my intuition says is best for E right now.

Medically speaking, I have no right to question these doctors. When I vented to her hematologist, Dr. B (who is like a god to me, he got her off steroids and, eventually, got her ITP into remission) about all the tests she’s been given, he gushed at how thorough her GI doctor was, what a good job she’d done managing E’s Crohn’s to get her to this point. He thought E looked “better than I’ve ever seen her” and told us to come back in six months, the longest stretch we’ve gone so far between visits. From a case management perspective, the docs are doing their job, and doing it well. 

But E is not a case. She’s a nine-year old kid who just wants to be healthy and go to school, play with her friends, sing, draw, ice skate, maybe even go to sleep-away camp this summer. She’s been scoped and poked and prodded and asked to drink disgusting, foreign fluids until she threw up. She’s been scanned up and down and sideways, and put into a large, loud, claustrophobic machine and told not to move for an hour (she did better than most adults, the technician said). She’s been needled and she’s pooped into plastic containers. And she’s handled it all with grace, charming every medical professional along the way with her can-do attitude and appreciation for their help. 

But now, the prospect of another scope is stopping me cold. 

A month ago, her GI doctor brought this up, just minutes after introducing me to their in-house nutritionist, explaining, “We like to treat The Whole Child.” 

The irony was not lost on me. Here’s the thing, docs: The Whole Child is not a case. She’s a child who needs a break from these tests, to start to feel normal again. She’s a child who has two autoimmune disorders. They know remarkably little about the triggers for these types of diseases, but they do know that stress is a factor. They just don’t fully know how much of a factor it is. My guess is, it’s a leading cause.

And the scope last year—the 30 hours of prep, and then the after effects that brought us to the ER the next night to make sure there weren’t complications—was the most stressful of all of it. The doctor says this one won’t be as bad, because she’s not in the middle of a flare-up. The doctor says after this one, she won’t need another for 2-3 years. But given that they seem to love testing, what if she has another flare-up between now and then? Can I be assured that they won’t ask for another scope then? And more importantly, what does the Whole Child want? 

Will I just go along with it out of blind trust that doctors know more than I do—a bias grilled into me by my father, a doctor, and the memory of my grandfather, also a doctor? After all, I’m just her mom. I didn’t go to medical school. Or will I say no, the prospect of more stress would be deleterious to her condition, a.k.a., not worth the additional data they’d glean from it?

I need to call the doctor to talk it over. But instead, for the past few weeks I’ve found myself sitting on the fence stressing her stress—and mine—and avoiding the conversation. 

Today I will make the call. 

 

 

 

 

 

 

 

 

    

 


Time Is a Funny Thing

Today is one of those anniversaries you never forget. On December 5, 2009, one month after my 40th birthday, my daughter E was diagnosed with ITP.

To say our lives have not since been the same would not be overstatement. Still not “recovered,” E is so much better than she was when the ER doctor at Vassar Bros. confirmed his “worst-case scenario” diagnosis, her platelet count at an alarmingly low 3,000 (normal is 150,000 to 400,000) and we were rushed via ambulance down to Westchester Medical that snowy evening to receive her first of many emergency infusions.

We’re in a far better place now. E, now nearly nine, for the most part feels and looks fantastic these days. We are optimistic that she will continue to improve and yeah, maybe even beat this thing–or at least live with it on her own terms.

But it’s the anniversary of a very important day in our lives, and so I must reflect. It’s what I do. Writers write. I write about her illness in part for me–yes, it’s supremely cathartic–but also as a way to get some honest thought out there about what it would be like to go through something like this. As I’ve mentioned before, I do not offer advice. I offer candor, a look inside this world. I hope in writing about our struggles, our story is empathetic–to anyone who has or will have to go through anything similar. That is my intent. Sometimes when you put your innermost thoughts out there, it can ameliorate the shame or embarrassment and enable others to express what’s inside them, or at least find peace. I offer these thoughts to anyone who wonders what it would be like if one day, you woke up and suddenly your child was sick. Very sick. Hopefully that day will never, ever happen to you–but if it does, I know you’ll get through it. So I write to offer hope, too. Hope is a beautiful thing–like love, I’ve learned first-hand that we can’t really live without it.

Life-changing events like this, for me, are experienced through three lenses: snapshots (the imagery of vivid moments), time (sometimes slow motion, sometimes fast forwarded, sometimes out of sequence, a la  “Pulp Fiction.” Often not linear, because hey, that’s just how I roll) and deep breaths–the moments you step back, close your eyes and try to absorb the salient lessons all of this reality should be offering you.

At two years in, here are some of the visual memories I have of our first few weeks:

1) This day two years ago. E woke up with blood on her pillow. That happened the night before, but not as much of it, and I chalked it up to the dry heat. (We had just started running the heat in the house full force, which had resulted in prior bloody noses. Though not like this.) On this Saturday morning, however, with a flash of horror I noticed unusual tiny pink dots covering both of her shins, along with a series of bruises. I brought B, my now-fiance, over to look at her legs: “What’s that?” I asked him. (He’s very knowledgeable about most things and it takes a lot to freak him out.) He didn’t know, but agreed it was strange and she needed to go to the doctor. The rest of the day was a blur of increasingly horrific details–the karate testing where my little dynamo could barely manage a front kick; the weekend after-hours clinic where the doctor had no idea what she had, but told us to get a blood test at the nearest hospital; the drive to the local ER through the first snowfall of the season, the longest 15 minutes of my life; the four nurses it took to hold E down to take her blood, the horror of her shrieking; the confirmed diagnosis; the hour-long ambulance ride down to Westchester Medical’s Maria Fareri Children’s Hospital, just E and me, the way it would be for so many of our hospital trips; the two days it took to get her levels back up, only to drop again a week later.

2) My solo train ride home. Not prepared for an overnight hospital stay, and needing to get back to take care of the dog and get showered/changed, etc., the next morning my ex took a turn for a few hours as I returned home by train to get a quick break and drive back with the car for my second overnight stay. (His stays at the hospital were far, far fewer than mine, which was partly my choice and partly his desire not to be there. Enough said.) On the platform in Tarrytown, more than 24 hours before my first wave of fear that something was wrong with my daughter, for the first time I allowed myself to cry. Not sob. Cry. Primal, from the gut, unrelenting waves of sorrow. Finally by myself, not needing to be the strong one for E, I let it out–the whole ride back.

3) Eight days later, our return trip back to the hospital. Having now read up on ITP, my hope was that this would go away as quickly as it had come, as it did with many children E’s age. But less than 10 days later, her levels had dropped precipitously and we were back at Westchester for another overnight stay. Little did I know that this would be our pattern for the next six months. The doctor sat me down, informed me that he wanted a bone marrow test, “To rule out anything more serious.” “You mean, you’re checking for leukemia, right?” I asked. “That’s right,” he said. The next morning, she was wheeled down for the test. I was with her, watched as they finally were able to calm her enough to put her out. The nurse–a pretty Russian of about 29–made the mistake of telling her they were going to give her something to put her into a “nice sleep.” E didn’t like that idea at all, made me promise they wouldn’t. When she was finally calmed down and the medicine was administered, I watched her stop mid-sentence, her eyes rolling back. Then I was quickly ushered out of the room to wait. “It won’t be long,” the doctor said–“15 minutes.” Nearly an hour went by–not a process guy, this doctor didn’t get me the buzzer so they couldn’t find me, even though I remained in the waiting room the whole time–and finally I was called in to the recovery room. “It’s ITP, no sign of anything else” the doctor said as he breezed by us. When E awakened, she was mad at me for not keeping my promise and allowing them to put her out.

These are just some of the early scenes we’ve shared these past two years. And while I don’t know what’s coming next, I’ve gone from “not jinxing it” to upholding a decidedly hopeful outlook.  She is doing great. And no matter how difficult it’s been, we’ve been together on her road back to good health, determined to find our way back to the lives we once had.

Today, I am grateful. My heart swells with joy as I watch her on the ice skating rink Monday nights–something she never could have done two years ago. Though we can’t say this is fully behind us, where we are is a wonderful place to be. It’s great to appreciate what you have, a lesson I only fully learned from this experience.

 

E being wheeled to the ambulance to Westchester Medical: December 5, 2009

“Even more important than the warmth and affection we receive, is the warmth and affection we give. It is by giving warmth and affection, by having a genuine sense of concern for others, in other words through compassion, that we gain the conditions for genuine happiness. More important than being loved, therefore, is to love.”–Dalai Lama