What happened when I was busy making other plans.

Posts tagged “family

A cupcake in a world of muffins

All the cliches about time are true. It marches on, it goes by so fast, it waits for no one. We know it, and yet, as parents we can still find ourselves flat-footed and emotionally unprepared when a big milestone arrives.

Today is one for me. E turns 13 today. My girl’s a teenager now, growing up in leaps and bounds and putting it all together, the world and her place in it. I see an amazing young woman emerging, the shadow of little kid fading away.

I’m proud of who she’s becoming. (Can I brag a little? It’s her birthday.) Oh, sure, I could highlight the obvious things — her talents, her intelligence, etc. I’m proud of her accomplishments, as any parent would be. And I’m quick to get weepy (and thus mortify her) at her all-county concert or her big ice skating show. This June, she’ll be doing her first skating solo! Cue the waterworks. And the photos.

But I’m most proud of how she is on the inside, the stuff that makes her “a cupcake in a world of muffins,” as Maddie, one of her favorite camp counselors, described her:

She’s tender-hearted. She’s kind and empathetic, a loyal friend and supportive peer. Last year at her recital, after a boy she’d never met before who was socially awkward and shy played his piano piece, she tapped him on the shoulder and offered an emphatic, “Great job!” She thinks to do those things. (She’s not always this way at home, truth be told. But this is how she is in the world, and it makes me happy to know and witness it.)

She cares . . . a lot  . . . about the world. From animals to preventing climate change, E has shown great interest in learning about the world her generation is inheriting and finding ways to make it better. This fall, when considering the option of getting solar for our new home, I asked for her input. I explained we’d need to make a choice, as we couldn’t afford both: Either get the panels now and delay her long-awaited dream vacation to Paris another year (or more), or forego the panels in favor of taking the trip. Without hesitation, she replied, “Get the panels!” (We did.)

She’s fun . . . and so funny. From her infectious, staccato laugh to her funky interpretive dancing to her off-the-cuff quips, her sharp sense of humor continues to grow in unexpected ways. And so far, self-consciousness hasn’t held her back. I hope this continues and her light isn’t dimmed by teen angst.  

She’s a fighter. I’ve written about this a lot already, but I am so grateful for how strong and brave she is. Turning 13 marks the age at which she’s spent literally half her life grappling with two serious medical conditions: first, ITP, a rare blood disorder, and now, Crohn’s disease. We’re hopeful she’s conquered the first, with the help of an amazing doctor and the latest treatments. Unfortunately, this victory was immediately followed (shortly after turning nine) with more troublesome news, that there was an incurable underlying condition entering center stage. Her tenacity and pluck have been pushed to the limits, but they’ve never wavered. I wish it never happened; that she never would have had to call on these strengths to get through dozens of hospital trips, visits to the ER, invasive procedures, pain, medications, steeling herself for test results, and having to comply with the poking and prodding of a host of doctors and nurses. But we’ve learned that while attitude isn’t the whole battle, it is a huge part of it; that you do still have a choice—you can succumb to despair, or you can try to get past it. She’s a silver linings kind of girl. She has fought hard to live fully, and not allow her physical issues to define her. And they don’t! She’s done that for herself. That’s all her.

My girl is fierce, in the best possible way. She challenges me to be my best self for her, and it hasn’t always been easy. But it’s always been worth it. So happy birthday to my cupcake, my teenager! You make me proud, every day. And I love you more than you could imagine.

 

 

 

 

 

 

Advertisements

One year later

20160109_141142One year ago tomorrow, my father passed away.

This was my first experience being on the front lines of death. I still recall the weekend of his passing with sadness, and horror. Surreal and all too real. No matter how much time you have—my dad was 83 and a half, to the day, when he died—it never feels like enough when you’re facing that last day.

People say after the first year, it gets easier. You’ve passed all the milestones, all the “firsts”—first Father’s Day, first birthdays (his, yours), first Thanksgiving, first Christmas. And maybe that’s true.

But for me, now, the world just seems emptier. And I’ve wondered if there’s something more than just plain grief playing on my psyche. I’m wondering if there’s something to birth order in this. As the younger, I’ve always taken comfort in having mentors, older family and friends who helped along the way. In high school, my senior year, I was excited as anyone about the future, the promise of college, driving, more independence. But it was bittersweet; I missed my brother, half a country away, and his friends—my friends, too. I felt a little out of sorts. And with my dad’s passing, and my grandparents before him, I’ve wondered, not that we youngest grieve more —I know it’s not a “more” thing. But I wonder if there’s just an added discomfort that we, the “babies” of our families, feel as we say goodbye to those who came before us?

On the anniversary of my dad’s death, I’m sad. But I’m learning to be at peace with it.

I hope he was right, and my doubts about the afterlife are just plain wrong. So Dad, I hope you’re up there, wherever there is, and you’re listening to Beethoven, Mozart, and Gilbert & Sullivan (and none of that rock n’ roll music you detested). And you’re sitting with Lincoln having a deep conversation. You’re on your way to a great friendship. I bet he was excited to meet you, his biggest fan! Rozzie and Corey are there, at your feet, and you’re petting them and sneaking them bacon (and maybe even donuts). And you’ve reunited with parents, your brother and sister-in-law, your niece, and the rest of your circle who preceded you. I hope you’re at peace. And that you are happy with where we all are now, from where you sit. And most of all, I hope you know that we loved you. And that I miss you.

Godspeed.

 

 


Baseball hurts, part deux (World Series version)

When you come to a fork in the road, take it. — Yogi Berra

Dear Dad,

It’s fall now. Peak leaf season, beautiful by me and I’m sure by your old house, too.

Tonight is Game 1 of the World Series and – guess what? – The Mets are in it! I know you’d be glued to your TV rooting for them; they really have a fantastic team this year. I wish you were still here so we could talk about their chances (I think they’re good!). I miss hearing the excitement in your froggy voice when you discussed the things you enjoyed the most.

Some other developments since you left us: First off, because I know you’d ask this first, E is doing really well. She looks and feels fantastic and is growing like crazy now – more than three inches in the last six months. We had a little blip late spring, but in her last round of tests her inflammation number was way down – to normal levels! So that’s been a huge relief and she’s having a great school year so far. Seventh grade is for real, but she’s even taking all the additional homework in stride (most of the time).

B and I finally got married. I know in the beginning you didn’t know what to make of him. It’s funny that, though you were gifted in your work, you helped so many people navigate their inner worlds and overcome their struggles, I think you never quite understood shyness. Didn’t know what to make of it, thought it was more than what it was, had to be some sort of underlying thing. I guess everyone has blind spots. Anyway, I think B was growing on you the last few years, as he tried to open up more and you tried a little harder to get to know him. So I think you would have been happy and had a good time that day; at least, I hope so.

Mostly things are moving forward in a positive way and I’m hopeful about a lot of things. But as we round the corner to the anniversary of your passing, I still find myself not quite believing you’re gone. Sometimes you show up in my dreams, in such an everyday way that it takes me a moment to get back to reality, that there is no more every day with you in it. And despite the problems we had, and the gulf that remained between us (smaller than what it once was, but still there), that feeling –- the knowledge that you’ll never be here again –- it still hits me like the hardest sucker punch. I’m sure in time it won’t hurt so much, but I’m not sure when that time will be.

So yeah, Dad, I thought you’d want to know that tonight’s the World Series. Lets Go Mets! I wish you were here to see this. But I hope they win and I’m imagining you cackling and cheering them on. The old man who was once a boy from Richmond Hill who loved the Brooklyn Dodgers. Who waved to Jackie Robinson and he waved back.

Love you, K

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Baseball hurts

baseball imageI tried writing this about a month ago, and didn’t save and it was lost for good. I was in the zone and it felt good but no! Betrayed by my techno-lameness and WordPress.

I’ll try again. Grief isn’t a new story, neither is death. We know they’re coming, we just don’t know when or how exactly. Since my father’s passing this past January, I have experienced the typical feelings: the gradual flow from shock to sadness to acceptance. I know anger is supposed to be in there somewhere, but I mostly skipped over that part, having spent most of my young life angry at him, for real and perceived slights. For not being seen for who I was, for being viewed as an ally on the wrong team. I forgave him years ago, in so many words. Now, with him gone, I am grateful I made that clear. That ultimately, anger is no match for love.

So when he left us on January 11, 83.5 years to the day on this earth, my grief ran the typical course. And I thought it fitting, all of this happening in January. I have always despised the winter, the season of death. The season to get through for the payoff of the other three. Add to that the fact that nearly everyone close to me who has died has departed in the cold, wintry months—my grandfather, grandmother, my friend Sandy on that dreaded flight—it seemed fitting and altogether apropos.

My plan was, like a bear, I’d hibernate emotionally for a few months of acute grief. I’d allow myself those moments to wallow, to feel it fully, to let it wash over me in private and hopefully not too many public moments. I got better at taking tissues with me, as the train ride to work often led to reflection, which led to waterworks. I took solace in the ice floes on the river and that, even though winter is a part of nature, it is in many ways nature shutting down. It all made sense, to my planner’s mind.

Then, I would start afresh in spring. The season of life, of renewal. That made sense, too. Now’s the time to move on. It’s the most optimistic season, the one so full of hope. So much to look forward to — hiking, swimming, the grass growing, the flowers, animals and people coming out of hiding to enjoy the fresh, warm days. This is not a season for grief. It’s a celebration of life!

So I had it all planned out. And timed. And then . . . pitchers and catchers. Spring training. Opening day. Baseball.

My dad’s favorite sport. So many Sundays, the three of us, my brother, Dad and I going to a local field. We switched off, but to my memory, I was perpetually an outfielder, daydreaming until it was my turn at bat. So many Mets games, mostly lost. So many afternoons, Ralph Kiner, Tim McCarvey the backdrop in our living room.

I think of “Field of Dreams” and how I saw it in college and cried. And called him that night to tell him he had to see it. It felt like our story, a story of missed connections, of intentions never realized.

I loved baseball, because of him. And now I can’t bear the thought of a baseball season without him there, rooting them on. And I’m learning that you can’t tie up grief in a tidy, little bow. It has a life of its own, and won’t confine itself to your least favorite season. Grief comes when it wants to, and you better let it happen.

For the first time in my life, baseball hurts.


Goodbye, Nadine

Nadine032014-07-06 19.37.06

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


The Tenacious Miss E

Eleven years ago today, she came into my life and it’s never been the same. 

E, you’ve taught me so much. I am so grateful for you, every day. Your courage, humor, warmth and indomitable spirit inspire me to be better. You fight so hard to live your life fully, as if nothing ever happened to you–no parents divorcing, no chronic illnesses, no pain to contend with. And you succeed! So brilliantly. 

Look at you. A young lady now. You’re everything I hoped for and more in a daughter: kind, effervescent, smart, clever. Beautiful inside and out. And so funny. You make everyone laugh. You have many talents, but you’re not boastful about any of them, because you don’t see yourself as better than anyone else. Many years ago, I told you the lesson about how to have a friend, you have to be a friend. You got it immediately. You are such a loyal, loving friend. It makes me proud to hear you with your friends, how encouraging you are. How you listen to them. You care so much about the world and you want to make it better with your whole self. I love what you said recently to me: “Mom, when I grow up, I want to make a million dollars, so I can turn the whole town solar.” You care deeply about the earth and animals and what’s going to happen to all of us. I love that so much about you. And your sense of fairness–you never want to be treated any differently, no special favors, despite all you’ve gone through. 

And most of all, I love that you’re such a fighter. Nothing will stop you from living a full life, because you’re so, so strong. My brave girl. You make me want to be stronger, to be what I need to be for you. I love you, my tenacious Miss E. Happy birthday. ImageImage


The Fog Is Lifting

Early January is a notoriously depressing time of year. There’s the post-holiday mood dip; the lack of warmth and sunlight; and the get-back-to-work frenzy, none of which spell joy for many of us. I, for one, hate winter. Always have. This time of year, I have to remind myself I live in a Northern town for the other three seasons, all of which can be spectacular. I don’t partake in many winter sports, except occasionally ice skating, mostly because of my iceberg feet. They won’t fully warm up until June, which I am eagerly anticipating. 

In my mind’s endless dance between realist and optimist, I take solace in the fact that the days are getting longer, that in a little more than two months’ time, the first signs of spring will emerge. I try to get outdoors and take nice walks with my dog, Nadine, when it’s not too frigid out. She has always preferred this time of year; with her furry, black coat, she bakes in the summer sun. My “Winter 2014” Spotify list alternates between sad and upbeat tunes; the sad to immerse in the winter vibe, the joyful to snap me out of it. These tricks work only so well to keep the melancholy at bay, but they’re better than sticking my head under the flannel sheets until someone wakes me up to tell me I made it, it’s April. (Not that I could do that, anyway. But sometimes I’d like to.)

Always this time of year we think about the year that was. For many of us, 2013 was a hard one. For me, too. I lost an old friend, quite suddenly, in June. He was 45. Aside from the grief of this loss and feeling for his family and closest friends, it was yet another reminder that none of us has a guaranteed shelf life. His mass card sits by my computer now; his spirit—loyal, funny, always cheering his friends on—a reminder to believe in myself, because that’s what he would say to me right now, if he could.   

Work progressed on my impending divorce—now nearly six years in the making. Lawyer 2.0 got things moving and convinced the judge to rule in my favor. It took three hand-wringing court dates to get there, and too much paperwork, but I got what I wanted: custody and child support. But it is still not final, we still need final judicial review/approval. I’m told that will happen by the end of January.

E’s pain reemerged, and her second colonoscopy revealed the continuing presence of widespread inflammation. A major change in treatment was needed, and we were able to take action immediately without changing any of her summer plans. This worked, but only until September, when the pain returned with a vengeance, just in time for the start of school. She lost nine pounds and missed the whole first week, only to return anxious that she would not catch up. (Of course, she did. Kudos to E and to her teacher, who was able to calm E’s nerves and get her into the mix immediately.) To stem the tide, a 20-day, low-dose course of the dreaded Prednisone was added—my last resort. Meanwhile, the doctors rejiggered her treatment plan. By December, E was much improved physically and emotionally. The trial and error of the last few months had paid off.

As I look back to 2013, there was pain. There was frustration. And worry. And sadness. But there was also progress.

I miss my friend, and am sad we didn’t get to see each other these last few years. But I will not forget him, and I’m choosing to use his memory to inspire me to be the best me I can be: empathetic, kind, capable, fun.  

I am nearly divorced now. It is a matter of weeks. Now I can focus on my future with B. We hope to be married soon.

E is getting better. There’s a chance that this new course of treatment will keep her in remission for many months, perhaps even years. I toe the line between hopefulness and realism, while continuing to educate myself on what else can be done to keep her healthy. And fundraising for a cure. I dream that within her lifetime, and maybe even in the next decade, Crohn’s disease will be curable. It could happen. 

It’s January. A time of year I truly despise. But after a hard year of challenge, change and progress, the fog is lifting. Icy toes, polar vortexes, dirty snow—they’re not bringing me down. I’m looking forward. Maybe all my dreams won’t happen in 2014, but we’re getting closer.  

 Image

 

      

 

 

 

 

 

 

 

   


Being Piglet

It’s been awhile since I’ve hit the blog, and not because there wasn’t much to say. This summer’s been chock full of drama and reflection and some disappointments.

In early June, I learned of an old friend’s sudden passing—way too soon and heartbreaking for anyone who was lucky enough to know him. I think of his family often: his wife, and the way they would huddle close in conversation. She was his true north, he, her biggest cheerleader. And his kids: I didn’t get to know them, but I have no doubt that he was an amazing dad, infusing their days with empathy, laughter and his infectious joy for being alive.

His spirit is another reminder of how I aspire to be, reminding me of one of my most-often-used parenting mantras. Since she was little, and even before she got sick, I would tell E to try to “be Piglet.” Funny, in a way, because her favorite stuffed animal—the one who has joined us for every hospital visit and is by her side every night—is Eeyore, whom I’ve always loved and, in fact, this Eeyore used to be mine. There’s something so irresistible about that sad-sack donkey. Her hand-me-down Eeyore is pretty threadbare now, and I long ago lost his detachable tail (bad Mommy), but he’s still holding up pretty well considering. I think it’s all the love.

Why Piglet? He’s little, but he doesn’t let that stop him. He’s feisty, he’s capable, and he’s got a big heart. He loves his friends, and he works hard at things. Sometimes, he doesn’t always know his limitations. Sometimes he frets. Sometimes he makes mistakes. But overall, it’s his attitude that makes him the one to emulate, especially in the more trying times.

More specifically, there was a Winnie the Pooh story I often read to E when she was little. Piglet was inviting all of his friends over for tea and special cupcakes. He had a new recipe and was very excited to bake for them. But he made some sort of mistake in the mixing, so instead the cupcakes became one massive, doughy pile. When he saw it, he was at first distraught. But then he took a deep breath, regrouped and said, “I’ll just call this my ‘Make-the-Best-of-It Cake’!” So he decorated it. Soon his friends came over, they had a great time and complimented him on his baking achievement.

Be Piglet. Make the Best of It. That’s what I always tell E to try to do. Life is not always perfect, and sometimes it’s hard. Hers has had many challenges, for sure. But we have no other choice than to make the best of it. So when we got disappointing news at the end of June—the endoscopy/colonoscopy still showed widespread inflammation, meaning her Crohn’s was still active—we dealt with it. It was not good news. She needed to change medications immediately, but we worked with her doctor to schedule the infusions around sleep away camp, which E had been anticipating for months. She still has pain, which is not optimal. But it’s not debilitating (a four or five on the 1-to-10 scale), lasts about a minute or two where it used to last much longer, and has lessened to 1-2 episodes a day. Overall, she’s having a surprisingly good summer, considering how it started.

E really is making the best of it. I’m proud of her. Now I’m trying to remind myself that I need to be Piglet, too.


Image

Be Brave

Be Brave

“Before I knew you, I thought brave was not being afraid. You’ve taught me that bravery is being terrified and doing it anyway.” — Laurell K. Hamilton, Blood Noir

That’s it. Exactly. Since E was diagnosed with Crohn’s Disease last June, the near-constant din of worry and fear has stayed with me at varying volumes and intensity. Right now, it is my music.

Last week, E’s doctor informed me that E’s latest test results revealed lower-than-optimal drug levels. I was told to be on alert for any renewed symptoms and to report them immediately, at which time the doctor would likely add a medication. Despite my frequent inquiries about how she’s feeling, E didn’t let on that the pain has returned. Until Monday night, when she spilled the beans that she’s been in pain off and on for the past week, and increasingly so.

“Why didn’t you tell me until now?” I asked (calmly, because I am well aware of the contagion of moods, and the last thing I want to do is to raise her anxiety level).
“I wanted to make sure that’s what it was,” E said (as in, not just a passing thing).

I get it. (Though I wish she’d told me sooner. We’ll have that conversation another day, when she’s well enough to hear it.) She doesn’t want to take more drugs. I don’t blame her. I’ve been pushing the doctors to get her off whatever we could as soon as we could, and it’s worked pretty well since the summer, where her flare necessitated multiple meds and, as a last resort, a four-week course of steroids. Her admission must have felt like a failure; like we’re taking backwards steps. Are we too late to stop it from a return to last spring’s debilitating symptoms? Or will she start feeling better soon? In my research and conversations about Crohn’s, the stories run the gamut. There is no one typical path. So we don’t know which road we’ll be on, which makes uncertainty our reality.

Uncertainty is hard for everyone, especially a planner like me. But when you just don’t know what your tomorrow is, it reminds you to celebrate today. Today, E is home. It’s not a great day–she’s not feeling well, nauseated and exhausted. But here’s the flip side: I get to spend the day with her. I get to be the one who tells her it will be alright. More than anyone, she trusts me with her care. And I will not let her down.

E inspires me with her innate bravery, her fierce determination to live her life fully and be like every other kid. But I need to be brave, too (these bracelets–called Bravelets*–remind me to be strong for her). I’m here to shoulder the brunt of the worry so that she doesn’t have to.

“It’s not the size of the dog in the fight, it’s the size of the fight in the dog.” — Mark Twain

*Bravelets are wonderful bracelets where $10 goes toward the associated cause per bracelet. They all bear the “Be Brave” motto and come in different colors depending on the disease/disorder/cause. (For the ones I wear, the $10 goes to the CCFA, the Crohn’s and Colitis Foundation.) There are bravelets for cancer, autism, heart disease, and many other diseases and disorders. http://www.bravelets.com


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.