What happened when I was busy making other plans.

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Surviving the Recovery

We are hard-wired for the happy ending. Maybe this is just human nature, American culture, or maybe it’s Disney’s fault. But I can’t offer you a happy ending right now; I can tell you we’re in a happier in-between space.

That’s the snapshot of our lives right now. There are more smiles and more laughter. The abject horror of our day-to-day reality has given way to stiller waters. But there is also trepidation of what’s next; the uncertainty is a challenge unto itself. The biggest unknown of all, of course, is whether E will continue on her upward climb; whether this will end in full recovery, continue to require ongoing management, or will regress to instability. The in-between space is hard to navigate and even harder to explain in three sentences or less, which is what the average person hopes to hear when they ask how she’s doing. But it’s trickier than elevator pitch timing would allow.

One of my oldest friends has had a much more difficult health crisis with her son, who just completed treatment for leukemia. I remember when we last spoke several months ago she told me that his treatments would end in September. Trying to be supportive, I offered, “I bet you’ll be so relieved.” No, mostly she feared that she would fall apart when his treatments were completed. Though his prognosis is very promising–a very high percentage achieve full recovery–come September they would enter the five-year wait-and-see phase before they could say for sure that he was cured.

Sometimes when you emerge from a crisis, it’s scary to look back or forward. As for us, we are doing lots better. E still needs her weekly shot and a pill every night that helps the shot work better. She is off the heavy-duty blood product, gamma globulins (IVIG) and the nasty steroids. (That, in and of itself, is cause for celebration.) Our once-weekly visits to the hospital are now monthly; the weeks in-between, an at-home nurse administers her medication. Her numbers have been high enough that there are no more restrictions on her activities, so she has been able to get back to karate, dance, physical education and outdoor recess at school. In many ways, she seems like every other kid.  

But not exactly. I still need to check her for signs of bleeding every couple of days. She needs to take it easy when she gets a cold or a virus so her levels don’t take a nosedive. I still worry every day that she will wake up and tell me she feels something in her mouth. This is our reality.

We are both make-the-best-of-it people. But there is an emotional hangover to this kind of trauma. Physically she’s so much better. Emotionally, she’s improved quite a bit, too. The bouts of steroid-induced irrationality have given way to a much calmer child. But all those months of supreme bravery have taken their toll: She still grapples with mercurial ups and downs, is prone to tantrums and has trouble regulating her emotions.  It’s as if her psyche has reached its quota. So we are rebuilding, but just like her illness, her emotional health will take time to fully heal.

I am hopeful that I will be able to report a happy ending . . . we’re just not quite there yet. When I look back to where we were, several times having witnessed near-death bleeding, it’s a nightmare that won’t go away. At those moments, the voice inside my head would say, “She will be OK. This is bottom. It’s uphill from here.” It took a few bottoms before we finally started clawing our way up. But I believed, in my heart, that we would get through it. And we’ll get through this, too.

Divorcing for the Kids’ Sake

One of my earlier blogs, “A Marriage Not Worth Saving: Signs That It’s More Than a Passing Pissed-Offedness” dealt with some of the litmus tests I used to determine that my marriage was, in fact, definitely not worth saving. A comment from a friend, though, led to a further discussion that I’d like to chime in on: When is it better for the kids for parents to stay together? And when it is better for the kids for parents to call it quits?

I am by no means an advocate for divorce. My parents split up when I was four and I swore I wouldn’t put my children through what my brother and I experienced. It was the 1970s and back then, the whole “amicable split” concept was pretty much unheard of, at least in suburban New Jersey. To our parents’ generation, divorce was sport; extra points for whoever best mirrored “War of the Roses” (and lived to tell about it). Forget about the whole ‘don’t put the kids in the middle of it’ idea that we espouse today. We were de facto hockey pucks.

My mom used to tell me that she left my father in no small part for us, that we would have been much worse off had they stayed together. Many times I tried to envision that scenario, but couldn’t fathom it–largely because I couldn’t even remember them together. So I never understood what she meant, and in some ways, thought that she was simply justifying her decision to assuage her guilt. Maybe in part she was, but that doesn’t mean she wasn’t right.

Now I get it. Yes, I ended my marriage because of me–I was terribly unhappy, not in love and our relationship was neither sustainable nor healthy. It swallowed me up; I became a shell of who I used to be. But I also did it for my daughter. Somewhere along my path, it became clear that staying together would be one of the worst things I could do for her.

I have tremendous respect and admiration for couples who have problems but find ways to work it out because the love is still there, under the rubble somewhere. But in my view, couples who stay together solely for the kids’ sake–without the love, respect and trust that marriage is supposed to be built on–are doing those same kids’ a huge disservice.

Why? Enter Connie, a woman I worked with over a decade ago. Wickedly funny and smart, with an inability to mince words, she was then in her late thirties, married with one child and expecting her second. Connie told me that the most important way she could be a good mother was to put her relationship with her husband first. That seemed strange to me at the time–still in my twenties, I hadn’t wrapped my head around the whole ‘having a husband’ thing, much less a family. Whoa! But her words stuck with me, and I see the truth in them now.

Then there were a number of friends I’ve known over the years–more than a focus group, less than a quantitative study–whose parents stayed together despite the fact that they were miserable. In some cases, they were biding their time until the kids were out of the house; in others, they just stayed put, inert and unhappy, until death did them part. Uniformly, these children knew of their parents’ unhappiness–sometimes at very young ages–and fervently wished they had split up instead of staying together and spreading their tension and hostility around like a disease.

Then there was the grandmother of one of E’s friends who left her husband, but only after her three children were grown. (Her daughter, a friend of mine, belongs to the aforementioned group.) Now close to 70, she is living the life she imagined–traveling, spending time with friends, and being a devoted mother and grandmother. She practically hi-fived me when I told her of my separation, and said so many times she wished she had left her ex when her kids were young instead of waiting.

Then there was my mom. Remarried now, she was a single mom for all of my childhood. And no, life wasn’t perfect, but she wasn’t unhappy. She had a solid network of friends, loved to travel, had varied interests, built her own business and on most days, seemed to relish her role as mom. She was strong.

From all of this, I realized that if leaving the marriage meant E would have a more vibrant and happier mother (and hopefully eventually a happier father), wouldn’t that be better for her in the end? And, in the best of all possible worlds, if I could model for her what being in a healthy, loving relationship looked like–wouldn’t that be a good thing?  But even if that didn’t happen, if I were happier, wouldn’t I be a better mother? It seemed to me that all of that would be better than what our “intact” reality had been.

Of course, at some point in their lives all children of divorce dream of having their parents back together. I do not mean to belittle this. It’s real, and it breaks my heart to think of E’s heartbreak. It’s been two and a  half years, and I know she still struggles with this loss. But my hope–and strong belief–is that eventually, this heartbreak will give way to a deeper understanding of love. I hope she will learn from this to choose someone who will be a partner to her, who will respect and honor her for who she is, and she will have the capacity to reciprocate. And mostly, I hope that she will never, ever settle.

 

Staring Down the Fear

“Squeeze my hand if you’re scared,” E tells me. It is 5am and we are huddled together in bed, braving a violent  thunderstorm. Terrified since lightning struck our home a few years before, I was trying to give comfort to her, my seven-year-old little dynamo. But she called me on it.  She knew: I was probably more scared than she was.

One day I will learn whether she felt my fear about her illness much the same way, whether she saw through the brave face and semi-calm demeanor. It was a Saturday night, one year ago exactly–December 5, 2009–that E was diagnosed with ITP, a rare blood disorder in which her body’s antibodies kill off its platelets. Two days shy of Pearl Harbor Day, this was our own version of a day ‘that will live in infamy’ . . . the day that changed everything.

That morning, she woke up again with a bloody nose. This happened the night before, but it wasn’t excessive, not witnessing any other symptoms, I chalked it up to the dry heat. But on this morning, there was some dried blood on her pillow and her legs had several bruises with tiny pink dots surrounding them. And the sore on her lip–I assumed it was a chapped lip aggravated by biting, which she often did–seemed to have mushroomed overnight. No temperature, though, and she swore she felt just fine. She was aching to get to her karate testing that day to get her yellow belt. I agreed, but told her we would need to go to the doctor immediately afterward.

Once at the testing, another clue emerged. My little firecracker, so intent on getting to yellow, was positively phoning it in. She had zero energy, was barely able to complete any of the moves. I turned to B, my boyfriend (more on B later) and said, “Look at her. I’m worried.” He agreed. This wasn’t like her at all.

At the after-care facility later that afternoon, the doctor couldn’t tell me what it was, but told me I needed to get to the closest hospital’s ER for blood work immediately. I asked him what the worst-case scenario was. He said, “meningitis.”  Gulp.

We left quickly. The snow that had started to fall earlier was starting to stick; visibility was poor. I am still unsure, given my sky-high anxiety and the poor road conditions, how I got us to the ER–a good 15 minutes away–safely. It was one of those out-of-body experiences where you just autopilot it, I guess.

The ER at Vassar was quick and professional. They got us in right away. Once the doctor came in, I asked them the same question about worst-case scenarios. This time, the reply was, “ITP.” It took four nurses to hold E down for the blood test. (We later joked that she got her yellow belt that morning and got to use it that evening.) Forty-five minutes later, with a platelet count of 3,000 (normal range is 150,000 to 400,000), the doctor confirmed that she did, in fact, have ITP and required immediate attention. An ambulance was on its way to take us down to Westchester Medical, where they had the specialists and a bed ready for E to receive treatment.

That was last December. Since then, we’ve logged in dozens of trips to the ER and overnights at the hospital, nail-biting moments awaiting results. On our second trip back–a little over a week after we were released–she was given a bone marrow test to make sure it wasn’t leukemia. But the doctor–a star but not a procedure guy–failed to give me the beeper to alert me when she was done, so what should have been a 15-minute wait went nearly an hour as they tried to locate me (umm . . . I was in the waiting room.) I was terrified that something happened to her, but when they finally did find me, the news was good: There was no evidence of cancer. It was definitely ITP.

We celebrated several of the major holidays–New Years, her birthday–in the hospital. As the months went by and our trips became more commonplace, I learned who to trust and who needed to be managed. Above-and-beyond nurses helped us as we endured more than one apathetic resident and waited for the doctor’s daily rounds to hear our fate. Were we getting out that afternoon? Or one more night? What next?

By early spring, it became clear that hers was a particularly bad case and needed more specialized care than the doctors at Westchester could give her. We defected to the top ITP doctor in New York City, a specialist who had experience using the latest treatments out of the biotech industry. The promise of better managing E’s condition and getting her off the steroids/IVIG bandwagon and avoiding a splenectomy, which one particularly hard-core doctor was advocating. But a spleen is not a vestigial organ, so the promise of this new treatment–called N Plate–offered new hope. I was game.

We struggled through the spring and half of the summer until the new treatment finally started working. I had to give up work for months to be there for her, a big sacrifice both professionally and financially. (My mom stepped in to help financially. Otherwise I honestly don’t know what we would have done.) In the spring, I was diagnosed with depression. Reluctantly, I went on medication for three and a half months, enduring the side effects to get me out of the fog and get clear-headed again.

No matter what, I made sure that every day, we found something to laugh about together. If I couldn’t fix her physically, I could use all my mommy muscle to keep her spirits up. On the good days, I planned play dates and activities so she always had something to look forward to. It wasn’t hard: We have been blessed to have such a strong and loving network of friends and family who made themselves available to us and went out of their way to help out. Hillary was right: It really does take a village. Sometimes you don’t know it, though, until you need all the villagers.

If there is a silver lining to having a child with a life-threatening illness, the biggest comfort has been that this has been a shared journey. As parents, we all want our children to know that we are there for them, physically, emotionally, spiritually. Children take comfort in the knowledge that we would do anything for them if the need presented itself. ITP allowed me to demonstrate to E that I would put my life aside to take care of her. She knows I have her back.

As I write, we are not out of the woods yet, but our lives have vastly improved. She is stable enough that our once-weekly hospital visits are now monthly; the at-home nurse administers E’s shot in the intermittent weeks. Getting our time back has meant a return to a mostly normal life for both of us–school and activities for her, freelance work (and the job of getting more freelance work) for me.

My biggest hope is that someday soon they will tell us she has fully recovered. And while we’re not there yet, today didn’t just mark E’s one-year anniversary with ITP. It was also the day she got her orange belt. And did so with gusto.

NOTES ON HER ILLNESS: In children under 10, ITP most often happens soon after recovering from a virus. She had H1N1 two weeks before, and we believe this was the trigger that began our most terrifying journey. For most children in this age group–80 percent–ITP goes away on its own within six months. E unfortunately has fallen into the 20 percent category of children who have chronic ITP, which means it may or may not go away, or it may go into remission only to return to her later in life (in particular, for girls with ITP menstruation and pregnancy can trigger a recurrence.) Every ITP case is different; there is no set pattern. Time will tell.

What I would say to the 25-year-old me

Some people are smart about things like life and love. I can think of several friends, for example, who got together with their partners in their twenties; in love as young newlyweds, they seem even more so now. These couples have managed to grow closer over the years as they faced life’s joys and sufferings together. Others aren’t so fortunate. Of the less lucky ones, a number of us get it wrong at the starting gate. I fall into that category–a self-reforming loser in love.

I have spent far too much energy metaphorically kicking myself for the time I spent in a damaging relationship (Momentary digression: If I could have literally done it, I would have. But try kicking yourself. Sadly, it can’t really be done.) If I’ve learned anything over the past two years, however, it’s that energy is finite; it’s not worth spending it all going down emotional rabbit holes. When I go to that dark place, where I see that time as the “lost years,” it only takes a quick look around to be reminded that without my past, I wouldn’t be here now.  Most pointedly, I wouldn’t have my beautiful daughter.

Truth be told, sometimes I do indulge in a trip down that rabbit hole. Once there, I am filled with a  yearning to go back in time and shake some sense into that young woman about to make some ill-fated choices. If I could, here’s what I would say to the 25-year-old, less-craggly-but-dumber me:

 1) Don’t let the “shoulds” rule your life. Should be married before 30, should have kids before 35, should be in a serious relationship by 25. Shoulds were my undoing. Conversely, one of my college friends did the opposite. She seemed to let her life unfold and see where it took her without a set agenda. As she entered her thirties, several of us wondered when she would find someone. We worried she waited too long. But we were wrong. I’m happy to say that a few years ago, she married a longtime friend who became the love of her life. Leading with your heart, living your life fully and being true to yourself should trump any and all societal “shoulds.” She’s proof.

2) Put “sweet” on the top of your list. Wow, some women get this right off and some just . . .don’t, especially not young women. Why do so many otherwise-smart women choose not-nice jerks? I had a few chances in my early twenties to be with men who treated me beautifully and each time, I blew it. How did I equate arrogance and aloofness with desirability? Too many James Dean movies? Sean Penn movies? I was nearly 40 before I learned that sweet needs to be right up there with smart and funny as one of the top attributes to look for in a partner. 

3) Avoid the big talkers. Showing trumps telling. Go for a guy who shows you he cares in dozens of little ways every day. I’m not suggesting you seek out a mute. He should also be able to tell you how much he loves you–but telling without showing amounts to a whole lot of bull–and resentment. No one wants to feel like she’s been played.        

4) If you feel like Gumby when you’re with him, he’s not right for you. Of course, it’s good to sometimes be flexible. But if you feel like you need to be double-jointed to bend as much as he wants you to, something is amiss. Step back and view yourself from the balcony: Are you a different version of you when you’re with him than you are with your closest friends? Do you feel like you can’t fully relax when you’re together? You should be able to exhale when you’re together, not after he’s walked out the door.

A marriage not worth saving: Signs that it’s more than a passing pissed-offedness

I ended my nine-year marriage–swiftly and decisively, when the events mentioned earlier led to the brilliant if long overdue aha! moment that, Gadzooks, there was no “we” to us.

Now, when you make the decision to split, especially if there is a child involved (in this case, one daughter, five at the time), it’s kind of big deal telling people about it. But almost uniformly, I was shocked and gratified by all of the support and understanding that came my way. Part of what was so shocking was how obvious the problems in our marriage were to friends and family alike–and how little feedback I received from my circle about this (except from my mother, in many subtle and not-at-all subtle ways. But that’s what Jewish mothers are for.) 

I was also dismayed at how much interest I received about my “aha”  moment from some in my circle (in particular, fellow moms with young kids). My theory on this is that raising young children today can be so stressful, in particular, for moms who are trying to manage so much with the X factor being the kids (seems like every time I thought I understood my daughter’s patterns, she’d switch it up. Just to keep me on my toes!). But more than a few really wanted to know why I did it. How did I know it was a marriage worth ditching?

Truth is, it took me five years to realize how unfulfilled I was, in part because it can be difficult to discern what constitutes fundamental unhappiness vs. just-pissed-off-at-husband-for-his-latest-misguided maneuver. (No offense, guys, but moms with little kids vent a lot, and newsflash! sometimes we complain about you.)  To hopefully allay my friends’ unspoken fears, I offered a few litmus tests, drawn from my own experience: 

1) When you picture yourself in 15 years, with the kids out of the house and it being just the two of you, is that something that: a) you can’t wait for; b) you mostly look forward to; c) you have mixed feelings about; or d) fills you with a sense of unequivocal dread? Hint: Dread is not really where you want to be, but it was clearly where I was.  

2) A smaller, less futuristic version of that: Date nights. Not that everyone always looks forward to them–you may be totally wiped and want to cancel–but your m.o. should not be to avoid them at all costs. Even if, for whatever reason (babysitter issues, financial issues, scheduling issues, guilt about leaving child when they’ve been away from you all day already, etc.) you may not be able to have a date night regularly, this should still fall under the category of something you might want to do before your child is, say, eighteen. If this sounds blasphemous to you, you may very well have a bigger problem.

3) Why do you divide and conquer? This one was hard to read because so many of us do this: Dad takes the kids Saturday mornings so mom can go to yoga class, mom gets them in the afternoon so dad can play in his softball game. This is a great strategy to give both parents a much-needed break and a chance to pursue their interests. But if you find yourself much preferring the company of just you and your kids without him, and, in fact, go out of your way to avoid having your husband with you for outings–this is probably not a good thing. By the last year of my marriage, nary a weekend would go by where we spent a significant portion of it together as a family. And this was how I wanted it to be.

So if your answers mirrored mine, you may, indeed, have a bigger problem. But if there is still that longing to be together, just the two of you, I would suggest you take the time to appreciate what you have right now and nurture it for tomorrow. Because I believe if the love is there, no matter how much stress surrounds it, it’s a marriage worth saving.

Life’s Big Epiphanies

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

You know them when they happen: Like an anvil, you are struck with the certainty that your life has just shifted and now you are in a new, unfamiliar place. It can be a gradual awakening, or quite sudden. Maybe it’s because of a shift in you, or maybe it is due to an event so big, so important that it can literally leave you breathless. When you are at the precipice of the next big chapter in your life, it can be among the scariest–and most exhilarating–moments you will ever experience.

That was how it felt when I finally led with my heart and said it. Or, in my case, didn’t say it. Embroiled in one of our almost-daily arguments, my then-husband went for the “big dramatic moment” and asked: “Do you still love me?”  He’d posed this one dozens of times as a way to close off any further conversation, and it worked. I always managed to answer “yes” or “of course” or something reassuring.  But this time, something inside told me to be true to myself. My heart wouldn’t let me do it . . .not this time. So instead I took a deep breath and . . . said nothing.

That was the beginning of the end of a long and unhappy chapter in my life. The next day, he asked me the question again. This time I was able to answer: ‘No.” Allowing myself to voice what I had been feeling inside but was too afraid to say was nothing less than an emancipation: At long last, I was being true to the inner me. I knew my life was spinning into a whole new direction, but had no idea what I would find when I got there.

What made this night different from all other nights? Several recent events had come together to lead to this overdue epiphany. First, there was the death of my favorite former boss. He was like a father figure to me, and the loss was very sad. But the fact that I didn’t have a chance to say “goodbye” to him, even though I knew he had been battling cancer–I was angry at myself and angry at my husband, who discouraged me from making the drive to see Al in the hospital, as he had discouraged me so many times before from reaching out to people who did not further his cause.

Al’s death taught me a valuable lesson: Showing up for things really does matter. Showing people you care–not just saying the right things, but actually doing something to show them–is important. Words are nothing without the actions behind them. Around the same time, a member of our community died from a freak construction accident. Another reminder that life is short and you never know how much time you have–so why sleepwalk through it?

Then there was the playdate with another family in the area. Apropos of nothing, my husband thought it important to volunteer to this couple, both of whom were math teachers, how pathetic my math skills are. Another illustration of his willingness to put me down and keep me in a corner, as he always did, to fill whatever his current needs were–even if it was just coming up with small talk. It didn’t feel small to me, though. This is what started the argument that night.

And finally, there was the e-mail. A long-lost friend–never a boyfriend, but more of a “friend with benefits”–found me on a social networking site and sent me a note. Innocuous? Maybe. So I sent a nice note back, nothing untoward. But then a note came back that revealed more, became more personal. Soon I was thinking about him more than I wanted to admit. What was this? I had never cheated before. But it felt like a betrayal. Why was I engaging in this extracurricular flirtation, albeit online? It troubled me. At the same time, seeing myself through this old friend’s eyes–as someone attractive, smart, funny–gave me courage. He helped me see that maybe someone else out there would find me lovable, that there was life and yes, maybe even love, after this marriage.

“Do or do not–there is no try,” Yoda said.

Like you, I am many things: friend, mother, worker bee, daughter, sister, advocate, writer, lover of animals, nature and people of all stripes, and perhaps most of all, survivor. I listen and I speak; I write and read; I inspire and am inspired every day by the world and what it offers. I’ve been both overjoyed by life and struck by its unfairness and unpredictability.

For many years, I was a frustrated writer, stuck in a place where I felt I had nothing creative or interesting to offer. Now in my early forties, I realize I have stories to share and a new way to share them. I’ve lived through enough now to tell about them.

So here I am. In many ways, I feel like an everywoman. The only difference between me and most others around me is my willingness to “put it out there”–no matter how difficult the topic–as a way of questioning what is vs. what should be, healing myself, and finding common ground. This is not an advice column; I am not qualified to offer advice. I am more storyteller than sage. My hope is that, by sharing some of my more vivid and sometimes difficult life experiences candidly and honestly, we can create a sanctuary to protect us against judgmentalism, shame, guilt, and fear. Our world is rife with these negative emotions, and I am constantly reminded of how hurtful they are–and how our energy could be better spent focusing on more positive-minded pursuits.

We are all human, which means we make mistakes. The key is what you take away from them and where you go from there. Because fundamentally I believe that the world would be a vastly better place if we were all able to fully love and be loved, to have the opportunity and courage to pursue our dreams, and to find empathy in our hearts instead of leading with scorn and judgementalism. This is the world I hope our children will inherit. Please join me in creating that world.