Category Archives: parenthood

Morning Snapshots

Posted on by
12

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.

As Long as Everything’s Okay

Posted on by
14

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.

Audience

Posted on by
2

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.)

Everyone’s a Critic

Posted on by
7

Before my daughter was born, I bought all kinds of books: infant development, breastfeeding, sleeping, etc. I pored over various titles online, reading through reviews and comments, and dog-eared pages for information I thought might be important.

And then she was born, and aside from the basic medical and developmental stuff, I rarely looked at any of them. Instead, I focused on getting to know her, and figuring out her cues so I could respond to them appropriately. All the books on sleep methods? Not nearly as helpful as paying attention to when she was getting tired versus overtired, and facilitating her in getting rest when she needed it. She naps well and naps regularly, she has a regular bedtime that evolved based on her signals, and she sleeps through the night in her crib. She loves her sleep, and thankfully for us, that’s always been part of her disposition.

With sleeping, feeding (I could write a whole post on the immense challenges of feeding this child), and other basic stuff, we figured out what worked for her and for us, and how we do things might not work for other families and other babies.

But with babies, sleeping and feeding are two of the most heated topics, and everyone has an opinion. From co-sleeping to cribs to bottles versus breast, the comments, opinions, and “advice” abound. Recently I read Natalie’s post where she reflected on the judgment/surprise people had when they heard about her particular sleeping arrangements. Her methods aren’t what would work for my family or my child, but they suit her baby’s needs and her needs as well.

As I read it, a post from Gluten-Free Girl and The Chef was still fresh in my mind. In it, Shauna discussed how critical we can be of one another’s food choices, how convinced we can become that our way is the right way, the only right way, instead of accepting that there are many, many “right” ways.

How many times have people told you what you should eat, or how you should cook it, or what you should avoid consuming? (Never mind what you should feed your kids!) I don’t mean the friendly advice we get, or the tips we get when we solicit help or feedback, but the unsolicited comments that really seem to imply we are doing something wrong by doing things a different way.

Sometimes when I read the comments section on online newspaper articles, or the back and forth on popular blogs, I am aghast at how judgmental people can be. Even the online reviews of the baby books I looked at were antagonistic, as if we are divided into non-attachment parenting types or attachments parenting types an never the two shall meet, as if breastfeeding versus formula feeding was somehow an indicator of maternal worth, as if how and where and for how long babies sleep is a measure of parenting success.

It boils down to lack of perspective, I think. Part of that is human nature and inevitable, but part of it is an unwillingness to see things from other points of view. In the spheres of chronic illness and infertility, lack of perspective and its close cousin, competitive suffering, are common:

People who don’t live with constant pain don’t always get why people living with pain can be unreliable, or doubt their pain altogether. People who are healthy don’t always understand how physically and emotionally draining chronic illness can be, and don’t think to check in on that. As a recent tragedy with someone I care about illustrated, people who do not look at life through the veil of depression might not see why things could look overwhelming to someone else.

We all judge sometimes…perhaps too quickly and easily.

People who have gone through multiple reproductive interventions might not have patience for people who think a few months is a long time to not get pregnant. People who are always in and out of hospitals might not see why a short hospital stay or simple procedure is a big deal to someone else.

We all compare sometimes …perhaps without considering that someone’s pain is big and real and present to them, and it does not matter what our own take on that pain is.

There is always someone convinced that if we eat this, or try this treatment, or follow this protocol, or read this one book, our problems will be solved.

We all think we have the answers sometimes…perhaps without considering that there really are many ways of doing things “right,” and what “right” constitutes varies so much depending on background, lifestyle, religion, family, etc.

The first time I had to supplement breast milk with formula was really hard—in my head, my body was letting me down, I was letting my baby down, and so forth. The amorphous “they,” the peanut gallery that dwells in the recesses of my brain, was working overtime. But as my husband pointed out, the most important thing was that my daughter was adequately fed so she could grow healthy and strong…and whatever combination of nursing, pumping, and supplementing that took was the “right” way for us to feed her. I think a lot of us can find similar parallels with this situation in the ways we negotiate and accommodate illness.

Sometimes the biggest challenge isn’t simply what others say, but having the confidence to carve out a different approach in spite of it.

What’s Guilt Got To Do With It?

Posted on by
8

Guilt.

How appropriate I am thinking about the prompt for the next edition of Patients for a Moment tonight, the night before my full-time academic schedule begins. (I’ve been part-time for weeks but that doesn’t make tomorrow feel any less significant.)

But that’s a whole different working mother post.

Guilt is one of the predominant emotions that accompany chronic illness. Certainly it waxes and wanes but it is inescapable. In my experience, it’s the ways in which illness impacts those around me that is the cause of much of my guilt, and from the patients I spoke to when I wrote Life Disrupted and the conversations we’ve had on this blog, I think that’s pretty universal.

There’s the guilt I feel when I have to cancel on friends yet again, or cannot be there for them when I’d like to, or need to rely on them for more help than I’d like. There’s the guilt during periods of particularly serious illness when it feels like things are so one-sided, and I am taking a lot and do not have a lot left to give.

I’ve written a lot about the guilt involved in marriages with chronic illness, and the toll invisible illnesses take on those who live with us and care for us. I am so grateful for all the ways in which my husbands supports me (physically, emotionally, etc) and all the compromises and accommodations he has made over the years because of my illnesses, but of course I wish he did not have to do those things.

When I was pregnant, I wrote about the anxiety that comes with a high-risk pregnancy, and the preemptive guilt I felt when I worried that something going on with my body would somehow harm my baby. Every non-stress test, every biophysical profile, every appointment and blood test and hospitalization was tinged with that, and literally not a day goes by where I am not grateful that she is here, and she is safe and happy.

But now that she is here and growing more alert and aware by the day, there is yet another permutation of guilt, because I am starting to see the ways in which my illness affects her. So far, the impact is minor, but I hate it when, for example, I am having my daily chest physiotherapy and she is in her bouncy chair next to me and needs me and I cannot give her what she wants. She doesn’t understand why, and I hope she is not confused as to why I leave her there. This is just one small example, and I know intellectually she is fine, but in the moment I hate it so much.

I am sure the older she gets the greater the stakes will be, and the things I might have to miss or might not be able to do are things she will notice even more. But I can’t worry about that now; that is not productive for me and it doesn’t do her any good. All I can do is give her my best on my good days and especially on the more difficult ones.

The closer we are to people and the more they mean to us, the more they shoulder when it comes to illness; the more our bodies’ idiosyncrasies and problems become theirs. It is so easy to let guilt over illness consume us or overly define relationships and attitudes, but my health issues are but one part of me. Therefore, they are only a piece of the relationship I have with my daughter, with my husband, with my friends and family. If I remember that and keep things in perspective then that’s all the better for her.

(It only were it as easy as that, huh?)

So I Dumped My Daughter’s Doctor

Posted on by
11

Ah, the doctor-patient relationship.

I explored it a lot in Life Disrupted, but it is frequent fodder for this blog, too: seeing doctors as our advocates, knowing the importance of speaking up, and realizing I can just say no, for example. I’ve compared finding the right doctor to dating, and will tell anyone who cares enough to listen how wonderful my lung doctor is.

All of this is to say, by now I know what to look for, and I know what I will and will not tolerate. And then I had a baby, and I became the mother of a patient, and became her voice when it comes to health problems and doctor appointments.

Before she arrived, I did my due diligence. I researched pediatricians, ran some interview questions by my best friend, who is a pediatric nurse practitioner. I liked this pediatrician’s experience, and when I met with him before my daughter’s birth, I liked his approach. Our talk went well, and I left feeling reassured she would be in good hands.

Since she had jaundice and had trouble feeding because of it, we saw him a lot her first couple of weeks. I appreciate his close monitoring of her bilirubin levels and getting us to a lactation consultant, but even in those first early days we began to see signs Things Weren’t Quite Right with this relationship. And as her first days turned into first few weeks and more health problems emerged for my little girl, the evidence mounted:

No appointment, from a jaundice check to her 2-month check up (shots included), lasted more than five minutes. Five minutes. I am not exaggerating. Just enough time to weigh her, give a cursory listen to her lungs, and answer the one question I managed to spit out in time with “yes” or “no.”

I would mention discomfiting symptoms to him and he would brush them aside (real, legitimate symptoms—I won’t get too specific here to respect my daughter’s privacy, but trust me, legit) or, dash off a prescription.

When I would call to discuss her lack of improvement and ask for advice, we didn’t get anywhere. No investigation into what else could be causing the problems, no wanting to examine her when her symptoms got even worse, nothing.

Never once did he engage with my daughter aside from the perfunctory weight check; never once did he ask me how she was doing (or sleeping, or eating, or interacting, etc). Never once did he ask me how I was doing as a first-time parent, or if I had any concerns, etc. Developmental milestones? What, are those something you’re supposed to discuss with your doctor, ever?

Lastly, he said family medical history wouldn’t matter for a long time and would not discuss it, (like, walked away when my husband tried to discuss it). Um, hello? My family’s medical history is as complicated and lengthy as my own, and given some of her symptoms, very relevant.

One day, as I was about to call his office because she had gotten much worse, I stopped mid-dial. I was sick of hitting the same brick wall, and fighting to get him to pay attention to my daughter’s symptoms. She deserved a lot more than that.

I’d wanted this to work out because I’d invested time and energy into selecting him, had really liked him during our interview, and I kept hoping the doctor I thought he was would show up. I gave him the benefit of the doubt at first because I was the new parent and he was the seasoned doctor, but I know my kid. And I know when Things Aren’t Quite Right with her.

She is the most precious thing in the world to me, and I entrusted him to do right by her. Enough.

So that same day, I called a different practice. They worked us in that afternoon. In fact, their words were, “An infant with XXX? Bring her in right away!” With those words, I officially dumped her former pediatrician.

Her new practice took down her medical history, her family’s history, spent a long time discussing various possibilities and plans of actions with me, and got her in for necessary testing the very next day. From day one they were proactive in getting her the help she needed, and have been wonderful about answering my questions, following up on her specialist consults, etc. Together, we’re getting to the bottom of a few different issues.

I have been angry with doctors many times before, but never as angry as I was with her former pediatrician when her new team figured out some of what’s wrong with her, things he would have and should have found if he’d cared enough to listen and act…you know, do his job.

Rest assured she is a thriving, happy, smiley little baby but we are very, very lucky we did not have a much bigger crisis on our hands due to his apathy.

I am so grateful she has such amazing doctors working with us now, and that’s what is important. But I forgot how crummy it feels to be so disappointed in a doctor.

I have long said that communication is central to a good working relationship. Since I’m her advocate in the exam room, if I don’t feel I can speak with my daughter’s doctor about her health, then that is obviously not a tenable situation. I don’t need my hand held, I don’t need excessively long conversations, and I don’t call unless there is something significant going on, but I do need someone who listens, who asks appropriate questions, and who cares enough to look for answers.

Bring It, 2011

Posted on by
1

I did a brief 2010 year in review last time I wrote, but I can’t let the upcoming New Year arrive without some sort of reflection.

This time last year, we were battered from a long, tough fall but were also incredibly hopeful about the year about to unfold. In fact, in my New Year’s post I wrote:

“It is one thing to say that having hope is important, but it is another to be truly willing to accept things that are out of your control, to have hope things will work out even if in the moment, you can’t see how or when. That is the hard part for me, anyway.”

What a prescient sentiment to kick of 2010, the year of the highest of highs and some truly significant lows. Having hope things would work out even when I could not see or know how was key to making it through some intense moments this year. A grueling pregnancy and delivery and a serious family health situation certainly demanded hope and faith, and the miracles of life and of survival were (and are) truly breathtaking.

I am someone’s mother. I still cannot believe that sometimes, especially when re-reading thoughts from this time last year, when so much was uncertain.

I do not like listing resolutions; I find them limiting. I’d rather work toward a larger goal. So, for 2011, my goal is to work towards finding balance. That might sound really general or clichéd, but my anxiety for the upcoming year is that I will have trouble with balance, so I’m trying to preempt that. I am someone’s mother now, and 2011 will be all about working everything else (full-time job, book to finish, relationships, household stuff, illness stuff, family stuff, etc) around that.

However, 2010 taught me some important lessons that speak to finding balance, namely:

Be flexible with expectations for myself. (Ongoing breastfeeding saga of 2010, I’m looking at you here).

Know that what works today might not work tomorrow. (This refers to baby schedules, body parts, you name it. Roll with it.)

Make those to-do lists a lot shorter and more realistic. (If bed rest didn’t clarify this, a newborn certainly did.)

Remember that somehow, everything will be okay. (I joke that if my daughter could survive 37 weeks in this body, she can take whatever the world dishes out to her and thrive. Kidding aside, sometimes I need to remember this perspective—no matter what unfolds, we’ll find our way.)

And lastly, take nothing for granted. (Then all of the smaller prioritizations, lists of supposedly important things, and conflicting roles somehow work themselves out.)

So while it’s a few days early, happy New Year. Thank you for reading and for following this journey, especially this past year. Whatever your goals or resolutions are, may 2011 bring you peace and happiness and as much good health as possible.

2010 in Review: The Year of the Baby

Posted on by
Reply

Leslie’s Patients for a Moment prompt for the last edition of the year is a good one: recap the year in posts, or pick a favorite post from the past year.

Indulge me while I do a little of both.

Clearly if you read this blog regularly you know 2010 was the year of the baby here on A Chronic Dose. After talking a lot about chronic illness, pregnancy, and parenting over the past few years, I kicked off 2010 all riled up about the insensitive attitudes and assumptions people have about adoption and parenting with chronic illness. Reading it over, I still get a little red in the face and animated, and hope to continue those kinds of conversations in the near future.

It was a long, stressful, and secretive winter and spring, but the post I am most proud of on this blog and probably more proud of than anything else I’ve written is when I finished the rest of the story of children and chronic illness in April, the backstory that I’d largely kept off the blog for much of our four-year journey towards being parents. I’ve never drafted and re-drafted a piece more, and even though it is a bit longer than normal I think everything is relevant. It represented everything that is part of a journey like this: hope, sadness, forgiveness, frustration, and most of all, thankfully, joy.

Wow, a lot has changed since I “came out” with that post, when I was 16 weeks pregnant and still holding my breath a little bit. When I talked about a high-risk pregnancy by trimester I had no idea I’d go on bed rest shortly after, that my loved one would suffer a catastrophic medical problem, that I’d be in and out of the hospital quite so many times, that I would go into pre-term labor and hold my breath yet again at 28, 32, and 34 weeks.

I’d rather skip ahead to my favorite post of the year, when I could type the words here at last and finally, we exhaled and focused instead on falling in love with our little girl.

Since then we’ve adjusted to being parents and juggling illness and work, and can’t wait to spend out first holiday season with our daughter.

So much has changed in twelve months. I am excited to leave at least some of the medical complexity and anxiety of 2010 behind us and focus on living our new life. 2010 gave us the most amazing, incredible experience so despite the ups and downs, that’s the note on which I am happy to end the year.

Giving Thanks

Posted on by
7


This is the time of year when gratitude posts are appropriate. From the evolution of gluten-free Thanksgivings to recognizing the support systems in my life, I have never lacked things to be grateful about.

My relationship with gratitude has never been as simultaneously effortless and complex as it is this year.

Without hesitation, I am utterly, unequivocally grateful for my daughter. She is the greatest joy of my life, and every single day we both acknowledge how fortunate we are that she is in our lives. That she is happy, healthy, and thriving, that we made it through the pregnancy to enjoy the other side? Grateful does not begin to describe what we feel for that.

For the team of doctors, nurses, and nurse practitioners who managed an extremely challenging pregnancy ; the lung doctor who championed our hopes and dreams at every turn and fought for us and our baby; and access to a world-class hospital and top-notch technology literally minutes away—we literally would not have our daughter without those people and that place, and we are so appreciative.

For the relatives and friends who checked in on me diligently and visited during bed rest; made months of tests and hospital visits and relative isolation so much easier with phone calls, texts, and humor; and celebrated in our baby’s arrival and continue to support us in so many ways and share our happiness with her now—we realize how lucky we are to have each of you.

The examples above were so easy to write because so many wonderful things have transpired this year they spill onto the proverbial page.

But as is the way, tough things always seem to happen right at the cusp of great happiness and joy, and this year has been incredibly painful and challenging for loved ones in terms of health crises. For the many tears of joy I’ve shed recently, there have been many, many moments of the opposite.

Gratitude is relative. During any kind of medical emergency or acute trauma, it is basic: Please just let this person survive. That’s the only thing that matters. And when morning breaks and you realize your first wish has been met, you exhale a little bit and start to focus on units of time, small changes in status: the next hour, the first words spoken, how many days until heavy equipment is removed. Each little victory is momentous, and each blip or setback is not too crushing because it is better than the alternative you just came far too close to witnessing.

But some days I have trouble with how muddied gratitude and grief become. Of course, the relief and gratitude that the patient is alive and doing pretty well is always there. But there are many losses to process, too; many changes in how we thought life would be, in the dreams we had for the future.

Sometimes I feel like I am cheating on gratitude by indulging in grief or sadness, and the back and forth between happiness/optimism and frustration/anger is tiring.

We are so lucky because it could have been much worse, but that doesn’t mean that where we are is entirely enviable, either. It still happened. I know it doesn’t mean I am not grateful when I think that, but I still feel guilty.

But like we did in survival mode, all we can do is take it day by day. So this year on Thanksgiving I will hold my daughter close and focus on the amazing blessing that she is, and focus on the fact that so many people who love her will be with her that day. We all made it through a lot this year, and for that, I am grateful.

Finding the New Normal

Posted on by
5

It’s about time I got back into a blogging groove, no?

My daughter is eight weeks old today. She is a smiling, happy, strong little baby who started laughing out loud recently, charmed by the beguiling fishes hanging on her bouncy chair.

The past eights weeks have blurred together into chunks of time: the first few days, where we switched gears from high-risk pregnancy and complicated birth to being parents and getting to know our little girl, and attending to her medical needs. Then there were a few weeks where we adjusted to some feeding problems and started learning more and more from her and about her.

The past few weeks, we’ve had so much fun watching her grow more alert, smile at us, reach for things, and start to imitate us. And we’re taking longer, deeper breaths: she is doing well and minor health issues are improving; she is a good sleeper and great about letting us know what she needs; without forcing it, we all seem to have fallen into some semblance of routine.

It seems like each week presents a new normal, a realignment of expectations and possibilities. Now, I find myself negotiating the whole back-to-work scene (expect a full post on these issues later). Right now it is part-time, but maternity leave came and went too quickly. My expectations for what I can get done and how much I can extend myself change by the hour, but I am learning to roll with that. (Hey, a lifetime of illness getting in the way of work was good practice for this!)

Before I was pregnant with her, we talked a lot on this blog about parenting and chronic illness, and one fear so many people shared with me was what to do on the days when we are not able to care for ourselves, let alone infants/children. The discussion in the comments thread revealed that it takes a village. This is true for any family with a new baby, but so incredibly important for parents with chronic illness.

And I’ve had practice negotiating that change, too—being acutely sick with a newborn. Now, I had a few things working for me: I was sick, but not very sick (for me)—I knew things wouldn’t deteriorate enough to send me to the hospital, and the whole thing only lasted two weeks. Also, thus far, our baby has a really easy temperament: she rarely fusses (and if so, with good reason); she sleeps well, for an infant; and she is very adaptable. But for a variety of reasons, there was no one to help me.

So we took it one moment, one hour, one feeding at a time, until we’d made it through the end of another day. She did not get walks or much fresh air that week, she did not get the very best version of me as a mother, but she did get my very best each day.

There are a lot of acute illnesses and medical calamities going on with people close to me right now. The details are not mine to share but they speak to another adjustment—balancing being a new mother and putting my daughter’s needs first with helping with the emotional and physical needs of others. A lot of the time I feel pulled in many different directions, and just at a time when I have a young baby who needs me there are lots of other demands, too.

In the end, the same principles that make so much sense with chronic illness apply—with work, with care giving, with new roles and expectations, we take it day by day, and know that today’s normal might not work tomorrow. And with a happy, healthy baby, we have few complaints.