Tuesday, March 29, 2011

Morning Snapshots

One of my favorite things is the deliberate, languorous stretch of the newborn: their little bodies uncurl themselves s-s-l-l-o-o-w-w-l-ly, with chins jutting out, heads moving side to side as if to protest “No! I won’t rouse!” while their elbows push out and their tiny little knees bunch up.

This little ritual, usually precipitated by the lightest of feathery kisses on her soft cheek, was, for many months, the best way I could ever imagine starting our day.

Now, the ritual is louder, more active: I hear her laughter and squeals of delight and lay still, ears poised to catch the consonant-vowel combinations she so casually drops into her stream of babbling come through the monitor. I hear the distinct “thump” as she kicks the crib mattress and wonder what position I will find her in (we don’t like to repeat our geographic feats, you see.)

I walk softly into her room, undetected for a moment. She is usually busy chattering conspiratorially with her lovey, and when she looks up and sees me there, she is a wriggling, giggling, gasping bundle of exhilaration. No doubt about it, she is ready to start her day.

Those moments, when we meet eyes and she laughs and smiles and her arms thrash and her legs flail and if she could, she would bound out of her crib and into my arms completely by her own volition, are the best way I could ever imagine starting a day.

It hit me recently that this other routine of ours, this rhythm we found, also means the slow, lazy stretch of the newborn is no more. Never more.

I want to carve that image into my memory permanently, so it does not slip away the way time seems to these days. I don’t want to say this is bittersweet because there is no bitter. Just a wistfulness, and the exhortation that time must slow down. Not because I want her to stay a baby—knowing her sparkly self now, I cannot wait to see the person she becomes. But rather, because as I sometimes whisper in her ear at night when she curls up on my shoulder and settles in for a sleepy hug,

It is too good to go this fast.

I don’t want to miss a minute of it.

Friday, March 25, 2011

IRL: The Rare Disease Edition

So, last weekend I met and had brunch with a fellow PCD patient. (Hello, L, if you are reading this!)

That sentence is actually pretty monumental. You see, it is the first time I have ever met someone with PCD (and bronchiectasis) in person. And, for all I know, it could be the last.

(There was that one time a young PCDer happened upon a book reading I was doing for Life Disrupted totally by coincidence, but we were both a little under the weather and therefore could not come in contact with each other, so I saw him from afar but did not meet him.)

It is a reality of life with rare diseases that we can go years, decades, even lifetimes, without meeting other patients in person. When I was first correctly diagnosed, I can’t tell you how helpful it was to know other people like me existed, and to read their stories and advice online. The impact of the Internet on the patient experience in general and the rare disease patient in particular is so important and so layered I plan to tackle it on its own and in other venues.

As you know, I am staunch believer that our experiences as patients with chronic illness unite us more than our different symptoms and diagnoses, and I will always believe that. At the end of the day, dealing with acceptance, control, relationships, balance, work, families, etc are universal challenges.

However, there is something so different about seeing someone in person. To drink coffee and swap stories with someone whose experience so closely mirrors your own. (In our cases, collapsed lungs and pneumonia at birth; frequent and serious infections throughout childhood and on; multiple surgeries; multiple hospitalizations; incorrect labels and diagnoses; secondary conditions like bronchiectasis and infertility; etc, etc.)

Oh, and we could cough and it was no big deal, and no asked if we needed water or were sick because everyone at the table knew that cough was as natural to us as the inhaling and exhaling everyone else does that we can never take for granted.

I don’t want to say it was validating, because I have my correct diagnoses and treatments now and am past needing validation. I think comforting is the right word, because despite technology and blogs and social media and online forums and everything else, being a patient with a disease nobody recognizes and nobody around you has can be isolating.

How many of you have felt that way?

(And I’m not talking about the health care delivery implications of people not recognizing it; I’m speaking strictly of the social and emotional aspects of living with these conditions.)

A sense of community is harder to come by when it comes to rare diseases. There are no disease awareness months, trendy wristbands, walk-a-thons, etc. Thankfully we have the umbrella National Organization for Rare Disorders, and numerous disease-specific work tirelessly to advocate and research for new medications and treatments.

But day to day, in the shuffle of work and doctor appointments and daily chest PT, in the managing of all the other conditions that take second seat to how well can I breathe today, it does feel a bit lonely.

I’ve been thinking about community a lot these days, especially since my post on audience: the power of communities to abandon differences and unite to effect change (the disability right’s movement, for example); the power of disease-specific communities to achieve tangible results (the early HIV/AIDS movement, for example); the power social media has to create and sustain communities and disseminate knowledge (for the better and the worse.) Looking at current events in the world right now, clearly this discussion is not limited to patient communities.

Though I’ve struggled with assimilating my writing and blogging with the new communities I find myself (parenthood, working mother, mother of a patient, etc) I am getting there. And while I have a lot more to write about the points I mentioned above, on a personal level, I am trying harder to connect to the communities I dohave.

An avid reader, I’ve been terrible about commenting on blogs the past few months, and can do a lot more here, too. I’ve also updated a sorely out of date patient/medical blog roll, and added a whole new category of parenting, infertility, and adoption blogs that I read. For either category, shoot me an e-mail if I’ve missed you and shouldn’t have!

Wednesday, March 16, 2011

As Long as Everything's Okay

It’s a cold, rainy March day and I can’t help but think about this time last year. It was right around now that our basement flooded from epic rains, the infection I’d had since January got worse, and I ended up in the hospital for a few days. It was the busiest point of my semester, and it was when I tumbled down the rabbit hole of work and chronic illness.

And, I was twelve weeks pregnant when I was hospitalized and very worried about the baby, but couldn’t tell you that then.

I can’t speak for anyone but myself, but when you go through infertility and loss you don’t look too far ahead. Just let the baby get through this, I remember thinking. Let us make it to the second trimester okay.

I watched her (of course I didn’t know she was a she then) dart around the many ultrasounds I had that hospital stay, eyes glued to the screen while the medicine floor—charged with taking care of my lungs—consulted with my fetal medicine team, who were charged with keeping the baby safe and evaluating which medicines I could take.

When we were several weeks into the second trimester, and I finally came out about being pregnant, reaching viability (or, 24-25 weeks) was the next milestone. Naturally, people asked me if we had a gender preference, which we didn’t. However, people looked at me strangely when I answered “alive” as my preference, so I learned to say “as close to full-term as possible,” and had conflicted feelings about the familiar old phrase, “as long as it’s healthy.” When we had scares at 28 weeks and I went on bed rest, and more scares at 32 weeks with my lungs and 34 weeks with my lungs and pre-term labor, all we wanted was for her to be okay. Every single day she stayed on the inside was a victory for us.

And then she was born, and I could finally hold this tough little girl who did so well for so long, who thrived even when the circumstances indicated she shouldn’t have been. She was whisked away for a (very short) NICU stay, and all I could think of was, just let her be okay. I couldn’t wait to have her in my arms again.

I’ve thought a lot about the whole “as long as she’s healthy” sentiment the past few months. Thankfully her health issues are not serious, and thankfully they have not impacted her development. She’s a strong little peanut—she’s been sitting up unassisted since she was a 4.5 months old, and is ready to take off and crawl all too soon. I joke it’s from all the steroids I took during pregnancy. We call her a little toughie because she rarely complains, even when not feeling well. She’s known as the baby who loves the doctor’s office, and never stops smiling and flirting with everyone, even when they are poking, prodding, and testing her.

One of her doctors is on the same floor as the pediatric hematology/oncology clinic and there is nothing like seeing that sign to make you feel simultaneously grateful your kid is basically fine and also heartbroken for the children and parents going through so much worse.

Way back, when I was a teenager and younger adult and babies were merely hypothetical, it was so easy to focus on the things that don’t matter. I’m competitive, and admittedly I can be an intellectual snob, and I remember thinking how I’d want my kid to do well in school, to go to a prestigious college, etc, etc.

That was before. Before facing mortality more than once, before falling in love and getting married, before 4 years of infertility, before people told me I would never or should never have a child, before loss and grief and hope and joy swallowed me up all at once. It was before I saw a tiny flicker of a heart beat at 6 weeks, before the drama at 12 weeks, before finding out “it” was really “she,” before tiny kicks and punches and more hospitalizations and complications. It was before I discovered cranberry juice made her dance inside me, before I held her in my arms for the first time, before I saw my husband’s face in hers.

And of course, it was before she held my finger while eating, or started my day by squealing and laughing in her crib; before she stopped what she was doing when someone said “Mama” and stared right at me. It was before I experienced how scary it is to see your baby sick, and how reassuring her big smile could be. It was before she learned how to give hugs, and big, slobbery kisses, before I realized that her deep belly laugh could make me laugh harder than anything else, ever.

She will be six months old tomorrow, and I can’t believe that. Honestly, there are still days I am in awe this is our life. In the middle of the pregnancy chaos I wrote about taking it one day at a time to stay sane. Now, I find myself focusing on taking it one day at a time, simply so I don’t miss a minute of this amazing journey, this “after.”

If she grows up and loves school, great. If she outgrows her health issues, absolutely fantastic. But in the end, as long as she is okay, as long as she is happy and knows she is loved unconditionally, that’s all that matters. Turns out the refrain that sustained me throughout our pregnancy--just let her be okay--sustains us still.

Thursday, March 03, 2011


In my writing classes, audience is the fundamental principle we keep returning to for each assignment: Are my health sciences students writing to peers in the professional realm? To a scholarly, academic audience? To the general public, or a patient (ie, lay person) audience? Such audience analysis gives way to decisions about scope of content, vocabulary and diction, and overall tone and approach.

You need to know your audience for your message to be successful,” I hear myself saying over and over.

And yet lately, when it comes to my own writing, I seem to be so hyper-aware of audience and more specifically purpose, that it leaves me wordless. (I know!)

I’ve mentioned having trouble with balance since going back to work full time with a baby, and have also said I’m trying to get back into a groove. And while part of that does mean simply carving out the time to post with regularity, to comment on the posts I read (because I still read them—it’s something I can do one-handed while nursing), and to engage more fully in this online world, that is only part of it.

I need to find my content groove again, too. So often I have concrete ideas, ideas that won’t go away and keep percolating away until they threaten to bubble over, but then I stop short of executing them.

I want to write about aspects of parenting that are enlightening and humbling, like breastfeeding.

(But this isn’t a parenting blog, so stick with issues of parenting and chronic illness, like knowing when to fire a pediatrician, says the little voice.

I want to write about being a parent after infertility, since I never expected just how much that journey would inform my worldview and my thoughts on this joyful little girl I get to wake up to every day.

(But think about the people reading this who might still be going through the infertility nightmare, cautions the little voice.

And I do want to write about finding balance, and feeling like I am falling down the rabbit hole of work again, except that while there is a lot of pressure right now with work-related stuff, there is so, so much happiness and fulfillment and joy with my daughter that I am worried I will not strike the appropriate balance, one that shows how much my heart and mind have stretched and changed and re-prioritized in the midst of the same old problem.

(But can do you that in a way that is accessible?, queries the little voice.

And as cognizant as I am of what I set out for this blog to be a few years ago, and trying to stay true to that, I am even more aware of how much of what is really at the core of where I am right now is not necessarily my story to tell.

(Just because you’re a writer doesn’t make all your material fair game, chides the little voice, a point that speaks to me more strongly than ever.

I feel myself pulling inward. I do think there are ways to discuss parenting and still relate it to chronic illness, and I want what I write to reflect the huge shift in my life, but I also want to protect my daughter’s privacy and not put too much out there about her. You won’t see her name here, or details about her health, but perhaps there is more room for a little window into our lives with her.

There have been so many changes in the lives of people close to me over the past several months, and the repercussions of those changes affect me every day. But other people’s illnesses are not my illnesses, and though we are all connected, I am drawn by the urge to protect the vulnerability I see.

And here we are. The days are getting longer. The snow banks are melting a little bit. I survived the bulk of winter without getting too sick or going to the hospital. There is a happy baby chattering away in her crib right now, thrilled to be awake and content to tell secrets to herself for a few minutes. And, I have stories to tell. I just need to get out of my own way.

(You’ll get there.)
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