Why I refuse to hate Mother's Day

I've been hearing a lot of people complaining about Mother's Day.

Everyone has their own reason for dreading the day (and I'll admit these are legitimate reasons):

• They never knew their mothers or lost them prematurely (or ever). 
• They have strained, complicated, or otherwise lousy relationships with their mothers. 
• They long desperately to be mothers and aren't--whether because they're unmarried or infertile or have lost a child. 
• They have as many children as they want and feel guilty on Mother's Day for not being perfect at raising them.

I have been thinking about this a lot this week, since reading a blog post by a woman with infertility and another by an overwhelmed, inadequate-feeling mother. Both found ways to come to love Mother's Day. 

My own path to motherhood has hardly been smooth, but for some reason I've never hated Mother's Day. Even during the height of our infertility I didn't hate Mother's Day, nor do I hate it now when I have a daughter to miss.

Why is that?

It's because Mother's Day is something different than we think.

It's not about celebrating perfect moms. No one is a perfect mom. It's not about celebrating perfect families or perfect kids. No one has a perfect family or perfect kids.

The woman who founded Mother's Day, Anna Jarvis, never married or had children of her own. Her own mother had at least 11 children, and only 4 of them survived to adulthood. Does that sound like the perfect family to you? Both of these women are just the type that would feel resentful about Mother's Day today--a childless woman and her bereaved mother.

Motherhood is messy.

Conception and pregnancy and childbirth are messy. Along the way you find miscarriage, morning sickness (sometimes severe), pre-eclampsia, gestational diabetes, premature births, birth defects, still births, traumatic birthing stories, stretch marks, C-sections and their scars. Then you find NICU babies, some that make it home and some that don't. You find SIDS babies. You find allergies and reflux and colic and genetic defects and autism and behavioral problems and on and on and on. I think almost every mother out there fits something on this list.

Having kids is not glamorous or efficient or tidy.

And moms. Moms are exhausted and inadequate. You have working moms and stay-at-home moms, both feeling a little guilty for opposite reasons. You have married moms, divorced moms, widowed moms. You have moms that are too young and moms that feel too old for the task. You have breastfeeding moms and bottle feeding moms, overweight moms and underweight moms. You have overly strict moms and overly lax moms. You have overwhelmed, exhausted, resentful, inadequate, temper-losing, letting-my-kid-watch-too-much-TV moms, sick moms, and mentally ill moms. But all moms are, to some extent, trying. 

And we love our moms, even though they are all just...human.

Mother's Day isn't meant to honor perfect moms. It's meant to honor imperfect moms and their ability to still, somehow, leave a beautiful mark on the world.

Today is a day to feel grateful for what I do have, not for what I don't. And I think most women have much more than they realize.

I have a really amazing mom.

But in addition to my Mom, I have a thousand moms. They are the women that told me I was good at school. That encouraged me to go to college. That taught me silly campfire songs. That loved me, comforted me, helped through hard times, listened to me, fed me, gave me rides, and did other things any mom would do. My moms also include grandmas, aunts, cousins, sisters-in-law, my stepmother, and my mother-in-law.

The truth is, no mom can be everything and do everything for her children. My Mom has blessed my life but so have my other moms.

I have 2 beautiful Children.

But I also have a thousand children. Every patient that I see is temporarily my child. I comfort, listen, and try to heal. My children are the little ones I babysit for friends, my nieces and nephews, children that I share our snacks with or teach about Jesus or the abcs or comfort when their Mom is not around.

Someday my parents may live to a ripe old age and become frail. If that happens, I will, in one of life's beautiful reversals, be my Mom's mom.

I am a daughter of a Mother. I am also a daughter of mothers. I am a mother of Children. I am also a mother of children.

On Mother's Day I honor the women that have touched my life and been my mothers, including my own amazing Mother. I am also profoundly grateful to be a mother--of Children and also of children. I am grateful that, as a woman, I can touch lives, inside and outside my family. I can leave my own beautiful mark on the world.

May Mother's Day prove to be happy for more of us. 

What I want my patients to know about antibiotics

I saw a patient recently that had been very ill for quite some time with a variety of weird symptoms, some of which were very concerning. I recommended further testing to help us narrow down what the problem might be.

Her response: "Can't you just give me an antibiotic?"

Ohhhhhh no. I tried to explain that I can't just "give [someone] an antibiotic" if I don't know what disease I am trying to treat. I explained again that she needed more testing so we could figure that out, and maybe, if appropriate, start an antibiotic.

She never had the testing done. She wanted to start feeling better today.

Working in urgent care as I do, I prescribe antibiotics every day. People are often miserable when they come to see me and the request for antibiotics is frequent. They want a quick fix. I often hear, "Well, I have to do this huge presentation next week at work, so I want an antibiotic so I can be better by then."

The reality is, their immune system is the one that is going to have to dig them out of this miserable illness, and the best care I can give them is to try to alleviate their symptoms in the meantime.

Here are a few things I wish every patient knew about antibiotics.

1. Antibiotics aren't harmless

The most common side effects of antibiotics are nausea, diarrhea, and vomiting, along with allergic reactions. They are hard on your digestive system. There is also the risk of yeast infections among women, and pathological diarrhea, C. difficile, which can also result from antibiotics.

Then there is the risk of increasing the prevalence of antibiotic-resistant bacteria. These pathogens require the big guns to treat and there a few strains out there with no known antibiotic to treat them. Often these bacteria are kept in check by other bacteria in and on your body, but if the "good" or "less harmful" bacteria are frequently killed off by antibiotics, it increases the risk that these resistant bacteria will be allowed to flourish.

Last, there is a multitude of research coming out now about the Microbiome--the colonies of good bacteria living in your digestive tract. This research is interesting and exciting, because scientists are increasingly finding links to the types of bacteria in your gut to allergies, autoimmune diseases, digestive disorders, metabolic disorders (like obesity and diabetes), mental illness (believe it or not), and others.

There is a lot of need for more research in this area, but some studies are suggesting a possible link between early antibiotic use and childhood allergies, asthma, and inflammatory bowel diseases (like crohn's disease or ulcerative colitis).

[I don't want any parents out there freaking out about what I just said. We don't know for sure what the link might be. I'm just making a point that some caution is merited.]

2. Antibiotics aren't always necessary or even appropriate

The number one thing that I see in urgent care is upper respiratory illness: coughs, sore throats, colds,  and sinus infections.

The number one cause of upper respiratory illnesses is VIRUSES. Antibiotics treat bacterial infections. They do not treat viral illnesses, or illnesses caused by fungi, parasite, or protozoa.

Even if your snot is bright green, that doesn't necessarily mean you have a bacterial infection. The green color is caused by your immune system doing its job, and there hasn't been much correlation in the literature between mucous color and type of infection.

Antibiotics don't treat the common cold, most sinus infections, most coughs, or most sore throats, so I usually don't give people antibiotics for these.

I am frequently a heartbreaker.

To help you out, here are some of the guidelines I follow:

1) I never give antibiotics for the common cold
2) I try not to give antibiotics for sinus infections unless they are quite severe or have been going on close to 2 weeks
3) 75% of ear infections will clear up on their own within 7 days, and antibiotics usually only shorten the course of symptoms by 1 day. Current recommendations suggest waiting 48-72 hours to see if it will improve alone before starting antibiotics. The exception to this is young kids, especially less than 6 months old. The first treatment for ear infections is tylenol or ibuprofen for pain control.
4) I rarely give antibiotics for coughs (including bronchitis), unless I really suspect pneumonia. 90% of bronchitis is viral.
5) I rarely give antibiotics for sore throats unless someone tests positive for strep. If you have a sore throat with no fever and have a cough with it, there's a really good chance it's not strep.

3) Some times when you really should go to the doctor

That said, antibiotics, when used like they should be, are amazing! They save lives every single day. I'm not an antibiotic hater by any means.

Here are some times you really should get to the doctor:

1) You strongly suspect strep throat. Strep (the bacteria) can travel to other areas of the body and lodge there, including your heart (rheumatic fever) and your kidneys. If you truly have a full-blown infection, you need to treat it.

2) You have a raging UTI (urinary tract infection). Some UTIs will clear up on their own with lots of hydration. The ones that don't, however, may travel up to your kidneys, where they will make you incredibly sick. Sometimes once bacteria reaches your kidneys it has easy access to your bloodstream, which can cause sepsis (an infection in your bloodstream). By no means will every UTI do this, but they are worth treating.

3) You have a fever and a cough or your child's breathing scares you. If you have a fever and a cough together, there are two things I'm concerned about: influenza and pneumonia. You may not have either. But knowing you have influenza gives me the chance to get you on medication for it (if appropriate, especially for someone very young or with asthma) and also to tell you to stay the heck away from other people! Never go out in public or allow your kids to go to school with influenza. It kills thousands of people every year.

Pneumonia can also be very serious (sometimes life-threatening), and I always treat people with pneumonia.

If your child is having difficulty breathing or their cough is so bad it's freaking you out, COME IN! There are a couple of things we can do for that. Antibiotics may or not be on the list.

4) You have vomiting or diarrhea along with high fever, significant pain, dehydration, or bleeding. Most vomiting and diarrhea will clear up on its own, and diarrhea may linger for 2 weeks or so. Dehydration can be dangerous, however, and some types of bugs that cause stomach flu symptoms can also be dangerous. They are worth investigating if some of these "danger signs" are present.

5) You're worried about yourself or your child. There are hundreds of legitimate reasons to look for medical care, and my intent in writing this isn't to scare anyone off from coming to the doctor's office if they're sick or worried! Come. Sometimes I find people that felt reluctant about coming in are actually very seriously ill.

But remember this: if you go to the doctor, and you leave without a prescription for antibiotics, that's not always a bad thing.

Life after Loss

Sarah would be 6 months old now.

I can't bring myself to say those words out loud. I kind of choke on them. 6 months seems like a weird milestone to mourn. But this also seems a fitting time to share some thoughts about life after loss. (Here's her story if you need a refresher).

The dreaded question

First, there's the question I hate: "How many kids do you have?"

It's really incredible how quickly I can break out in a cold sweat. Often I panic and say "one." It seems to blurt out of my mouth before I can stop it.

It's the easy answer but it's the wrong one. I am a mother of 2. One of those 2 is just really, really easy to take care of right now.

If I do manage to answer "two" I pray they won't ask the natural follow-up question: "How old are they?" Poor souls. I have to tell them the truth, and I wish I could warn them first that things are about to get awkward.

The grief bucket

Then there's grief, Mr. Unpredictable. Grief isn't like I thought at all. I thought I would grieve a lot at first and then gradually just heal and move on, in a tidy linear fashion. It doesn't feel like that. It feels like a bucket that slowly fills up and then spills over in a fresh wave of sadness. In between spills I go about daily life and I lead a happy, full life. Over time the bucket does seem to fill up more slowly, but once it spills over the feelings are just as fresh as day 1.

Known and Unknown

I have to admit there's some fear wrapped up in the question, "What about the next?" After years of infertility and two miracle pregnancies, will I ever be pregnant again? And should I be that lucky, will my baby survive?

I should back up and explain that we chose to have an autopsy done on Sarah (is this too macabre to blog about? I'm a medical person and this is all very natural for me, so my apologies...). She had a condition called "multicystic encephalomalacia". That's a fancy term for extensive damage to the brain from massive oxygen depletion, due to infection or circulatory problems.

Put in plain terms, the most likely scenario is that, sometime during my second trimester, Sarah's cord got kinked or twisted, blocking blood flow for long enough to cause irreversible damage to her brain, but not long enough for her to pass away in utero. She had been perfect at the 20-week ultrasound.

Thus, as far as we know, there's no greater risk of this happening to us again as there is of it happening to anyone.

I'm still nervous.

Irony...or poetry?

This is probably an appropriate time to mention something else about Sarah. Her name was Sarah Emily, in honor of Isaac's twin sisters, Sarah and Emily, who passed away as babies. They had a shared blood supply, and due to complications of this, Emily was stillborn and Sarah, similar to our Sarah, had severe brain damage from the lack of blood flow. She lived about 7 months and then passed away as well. 

We really felt like Sarah Emily was the right name for our daughter when we picked it after the gender ultrasound. It seemed so redemptive to imagine her living the full life they missed and honoring their memory in that way. 

Instead, in one of life's ironies, we watched our Sarah follow a similar path as her sweet aunts. Perhaps this would be an opportunity to let bitterness in. But I see it differently. I think it's fitting that such pure, beautiful spirits as Sarah and Emily would have a namesake equally as pure and beautiful. Isaac's mom says she likes to picture the three of them up in heaven, dear friends, and jumping on beds like teenagers at a slumber party. 

Closing the door on bitterness

I picture Bitterness as one of those door-to-door salespeople trying to shove his foot in my door while I've got my back against it, trying to force it closed. I can't dwell on other people's large families or the healthy babies born around the same time as Sarah. I can't dwell on the seeming unfairness of struggling with infertility and then losing a child.

Despite it all, though, I regard Sarah's life and passing as one of the most beautiful experiences of my life. It was a privilege to be in her presence, to be her mother, to give her life and love her, and then to send her peacefully back home.

I remain convinced that, if her time here needed to be short, she was taken in the gentlest way possible. There's no way to send a child home without grief unless you don't love her--a rare scenario indeed. But she lived and died peacefully, with little distress and almost no trauma or pain. We had a little notice that something was wrong but not too much. Choosing to take her off the ventilator didn't feel like a dilemma--we all agreed it was the best thing for her. All these things softened the experience. And through it I came to know God in a way that would otherwise be impossible. I have felt peace that didn't--couldn't--come from me.

That's how I keep the door (mostly) closed.

Different

I am a different person now. More compassionate, I hope. Better educated on grief. Better equipped to empathize. I have received so much kindness that I feel eager to give back where I can.

I used to see other parents losing children with health problems and think it mattered less to lose a "damaged" child than a normal one.

Here's the truth--I loved (and love) Sarah just as much as Mary. It's remarkable, really, since our time together was so short. That beautiful girl wasn't damaged goods. But the gift her health problems gave me was the ability to let go with fewer regrets. On days when I try to imagine life with her here, a chubby, laughing 6-month-old that's sitting up and grabbing my hair and learning to eat solids, I remember she wouldn't be doing those things. I can't wish she were here if it means keeping the body she came in.

I would have never chosen the past 6 months to happen as they did. But I'm forever grateful they happened anyway.

The Year I Feared

Mary is two.

This stage has filled me with terror since the day we decided to start trying for kids.

It might have been the day, now seared permanently into my memory, of being at the grocery store and hearing a toddler screaming from the other side of the store. For 15 minutes straight.

We were starting fertility treatments at the time, and all I could think was, "We're draining our savings account for...this??"

My perception of toddlers used to be that they were somewhat akin to cats. Babies, like kittens, are so adorable that we seem biologically hard-wired to want them.

The problem is, kittens turn into cats.

And babies turn into toddlers.

However, less than a month into having a 2-year-old, I have decided to come out and announce that the "terrible twos" are only a half truth.

Yes, Mary throws tantrums.

Yes, I have been that mom at the store with the screaming child.

Yes, she hates sharing, hits when she's mad, pulls her shoes off and promptly starts crying for me to put them back on, and occasionally pounds on the piano.

Yes, she draws on the walls and tables, ruined a good shirt of mine the other day by drawing on it with a pen, and last week discovered her cousin's poopy diaper and used it to decorate the walls, the floor, the furniture, and her face. (I missed that incident, but Janae, I'm truly sorry.)

But I want to announce that there is another side to two-year-olds that I never knew about.

Riding the horsey on the couch. Wearing my necklace.

There's the thrill of watching her master skill after skill. Counting to 10, then 12, then 20 (she skips 15 and 19, but those are ugly numbers anyway). Colors. Shapes. Jumping. Pulling on her own boots. Stirring cake batter. Communicating increasingly specific desires.

Reading on the laundry basket. Of course. 

There's toddler hugs and wet kisses. There's chubby little hands and feet. There's the prayers she insists on saying herself (she always blesses the food, even at bedtime).

Pushing her beloved stroller.

There's the unbridled enthusiasm with which she encounters life. Whoa! A train! An ice cream cone! Stars in the sky! Swings at the park! Grandpa! Cousins! CHEEEEESE!!!

Using any means necessary to maintain order at church. 

There's snuggling her on my lap and reading stories or singing songs. (Or watching YouTube...on bad days).

There's the adorable way she speaks about herself in the third person (Mawy do it!).

Accessorizing herself.

And the way she learned not only to do somersaults, but also to cheer for herself beforehand (Mawy! Mawy!) and congratulate herself afterwards (Tada!).

And the way she sits at the piano and sings an entire song by herself...getting 80-90% of the words right. (For the record, she gets about 10% of the tune right).

And, of course, there's the heart-melting "I yuv you!"

I know for some that 3 is harder than 2. I know many toddlers are more difficult than Mary.

I'm just saying there's more to love about 2 than there is not to love.

Also, she's not a cat.

The dreaded learning curve

I think I have discovered the antidote to pride.

Some people might tell you it's humility or loving other people, blah, blah, blah. Maybe those work, but a faster way to combat pride is to keep altering you career path slightly, so you always feel a little stupid.

Here's an example. I don't know how it happened, but somehow I made it through more than 500 clinical hours as a nurse practitioner student without ever checking a live male for a hernia.

Sure, we talked about how to do it and what to check for in one of my classes. TWO years ago.

And so it was that, fully licensed and orienting at my new job with the PA, that he assigned me a male physical exam. "I'm not even going to go in the room with you. You just do the whole thing." Now, to clarify, I worked in the hospital as an RN for more than 5 years before going back to school. I have seen EVERYTHING.

(Let me quickly interject that you should all know that someday you're going to be old and get pneumonia and go to the hospital, and once there you will pay good money to have your dignity taken away from you. I don't say that to make you panic. I just want you to know what's coming).

But there, in that little office, with the poor guy's dad watching from the sidelines, I did every single part of the exam that I could think of, even checking a few unnecessary things, trying to stall for time. Then it came down to it. I was going to have to check for a hernia and I had to make it look like I'd done so a hundred times before. The problem was, being a woman myself, I wasn't sure what the protocol was. So I panicked, handed him a sheet, and told him to undress while I stepped out of the room.

I returned, red in the face and sweating bullets, to find him wrapped in the sheet and his dad laughing at him. I did the hernia check, signed his papers, and shuffled them on their way.

I came home that evening to ask Isaac what usually happens when a person has a hernia checked. "They just have you drop your drawers and cough. It takes like 10 seconds."

Oops.

My little brother is still laughing about the whole incident.

And thus I revisit the dreaded learning curve. I rode the learning curve when I was a new nurse, and hoped to never, EVER ride it again.

I recall, with a lot of discomfort, the time that I, brand new as an RN, called a rapid response (a team in the hospital that responds to patients that are acutely deteriorating) on a lady having chest pain, only to have the team show up and ask what her vitals were.

Wait, what? I was so busy panicking about her chest pain that I forgot to do the obvious stuff like check her blood pressure. Turns out this patient had chest pain all the time, even before coming to the hospital. I felt very, very, small. 

After some years working as a nurse I stopped being the one making REALLY stupid mistakes and gradually became the person that other people asked for help.

Then I decided to go back to school and started the process again. And I was back to that stupid feeling.

Like my first day in clinicals when I went to look in someone's ear and couldn't remember how to turn on an otoscope (it's actually not that intuitive).

Or my first pap smear, during which I learned the hard way not to open the speculum until you're ALL the way inside. Ouch.

Or, again as a newly licensed NP, again orienting with that same PA, when he put me in a room with a guy that had cut his hand and told me to suture it. Then left. I'd put in sutures before, but never without supervision! My little hands were shaking so hard I could barely grab the needle. I got the sutures in, and they looked fine, but I think I did the slowest suturing job in the history of medicine.

The way I figure, if you start really, really low, then there's nowhere to go but up.

Guest Post: Infertility and Marriage

A few week ago my friend from Iowa, Celeste, asked me to write a guest post for her series about infertility and marriage. 

I'm honored that she would ask me, because she is an incredible person and writer, and her blog is well-done and very insightful. 

You can read my post here and see the rest of the series on infertility on her blog, A Thing Called Love. There are some other really beautiful posts in the series, written by women coming from a variety of experiences with infertility. If you or someone you know is struggling with infertility, they are well worth your time to read. 

Here are some of my previous posts on infertility:
Cold Feet
At Least
Roy (achieving pregnancy after infertility)
My Moment of Silence

The Great SAHM Debate

I have a wonderful mom who was able to be a Stay At Home Mom (SAHM) until I was about 12.

She came on field trips, kept the house organized and clean, volunteered, made dinners, knew our friends, greeted us after school, helped us do homework, and did a million other things I was blissfully unaware of.

It was wonderful.

I always pictured myself doing the same thing as my mom.

Then my parents divorced and she had to try to find work. She started out making something like $5 an hour standing in a cold, windy field holding a surveyor's pole for a civil engineer. She did that bravely and went on to find gradually better jobs and now has a wonderful job. My mom is my hero for so many reasons.

In the midst of all this, Mom made me swear I'd go to college and graduate.

True to my word, I went to college and I graduated. I married Isaac the next day. I got a job as an RN.

A little later, we started talking about kids.

My friends, this is where things get complicated. Do I stay home with the kids and live the SAHM dream like my mom's first 17 years? Or do I work and keep up my license in case, like her, I need to be the breadwinner some day?

As it happened, I didn't get pregnant that year. Or the next. Or the next. Or the next. Work gave me something to do, social interaction, and a way to feel useful, and it helped get Isaac through grad school. I kept working until I was utterly burned out. Meanwhile, after 3 failed rounds of IVF, we decided to adopt. Feeling tired of putting my life on hold for kids that didn't seem to want to come, and knowing that adoption can take years, I decided that I wanted to go to Nurse Practitioner school.

I've blogged about this--applying to school, getting accepted, finding out I was pregnant (we ended up doing one more round of IVF, but that's another story), agonizing over what to do, finally deciding to go, and leaving Mary with a babysitter.

I took my last final a few months ago on a Saturday night, and on the next Monday morning began studying for my certification exams (this made finishing school feel a little anticlimactic...). Four days later I was in the perinatologist's office talking about the problems with Sarah, and four days after that I spent a Tuesday trying to study in between increasingly forceful contractions. That night Sarah was born.

My review books sat untouched in the hospital room for 3 days (I think I was delusional when I packed my hospital bags). Sarah passed away, we planned a funeral, family drove back home, I figured out how to function, and then I was back to the books.

I took and passed my certification exam about 3 weeks after Sarah's funeral.

That sounds insane, but I needed something to do with myself. I'd been in school Mary's whole life, and after Sarah's passing, with school finished, I faced a string of empty, obligation-free days with a sense of gnawing dread. Studying was familiar, even comforting. It gave me a job to do every day, besides keep Mary alive.

A month and a half later, I officially have a job seeing urgent care patients at a family practice clinic. They need someone to do some evenings and some Saturdays and occasional day shifts--in other words, perfect Mommy hours.

Where once I felt vaguely guilty for wanting to go to school with a baby on the way, now I find that I need an identity outside of being a mother. Rather than dwell on the feeling that bringing kids into our family doesn't appear to be my strong suit, I have found a place to progress, to learn, and to help people--while doing something I genuinely love.

I hope no one that is a SAHM feels guilty reading this. Nor do I want any working mothers to feel guilty reading this. We all have to choose what is best for us and our families. For me, for now, my work schedule is conducive to motherhood and, well, work helps make my loss bearable. After it all, I feel like I was guided here, to help me with losing Sarah, but hopefully for more than that as well.

So for now, I'm a little bit SAHM and a little bit working mom. I'm grateful to be both.

Say...what?

Last week I saw two people I haven't talked to since Sarah's passing. Both asked me, sincerely, "How are you?" Both times I responded, mostly sincerely, "Good!" I was distracted by Mary's antics at the time and also feeling excited because I'd just come from my first job interview.

Afterwards I felt a little sick about it. In the moment, I felt good, but that's not what they really wanted to know.

A more honest answer would have been, "Oh, I have good days and bad days," or, "Great today, lousy yesterday."

I have moments and even days in which I feel...fine. I laugh, I chat about normal things, I play with Mary, I may even talk about Sarah with full composure.

Then I'll walk past the same picture of Sarah I walk past every day. Or I'll see a baby girl in the grocery checkout line. Or I'll walk past a bunch of women at the store...ALL pregnant. And a wave of grief will hit me with rather stunning velocity. Those days I'd prefer to curl up into a blubbering ball on the couch and stay there for a while, thank you very much.

Grief is weird.

Now all this may leave some of you wondering...
What on EARTH should someone like you say to someone like me?

Lest anyone start panicking that they're said the wrong thing to us, I want to first assert that almost everyone has been wonderful, tactful, helpful, and kind. Many of the examples I will list below of things NOT to say have NOT been said to me (thank goodness). But many have been said to others in my shoes and are worth mentioning.

1) Before you say anything, know this: Everyone grieves differently.

• Even if you've been there, things that helped you might not help someone else. For example, my aunt gave me a picture of Christ holding a baby. I love that picture. I find it comforting to think of my daughter safe and loved and happy. I know someone else that got a similar picture and put it in a closet and never looked at it again. Be careful projecting your own emotions or reactions on someone else.
• Along the same lines, every situation is slightly different. Losing my daughter at 4 days old is different than having a stillborn, is different than a miscarriage, is different than losing a baby to SIDS or drowning, is different than losing a 10-year-old, and is certainly different than losing a grandmother, a sibling, or a dear friend. All are sad. All are different. Tread carefully.

2) The safest words are the simplest: "I love you" and "I'm sorry". [Insert Hug]

• You don't have to fix it. You're not going to bring her back. You don't have to make me feel better.  But feeling loved and just having you acknowledge the loss goes a long way.
• For ME another safe one is, "I'm praying for you." That means a lot to me. For someone else that's not religious, maybe not so much. Be considerate.  

3) Kind gestures

• I can't list all the kind things that have been done for us. My mom and sister-in-law watched Mary. My dad deep-cleaned the kitchen and stocked the freezer. Two brothers drove up from Arizona TWICE in 5 days to be there for Sarah's passing and then for the funeral. Another brother stayed the whole time and kept all his kids out of school. People brought meals, sent flowers and cards, and helped with the funeral and luncheon. A thoughtful neighbor gave me a couple of necklaces with Sarah and Mary's names and initials on them. A friend named a star after Sarah. Someone else brought over a little dress-up skirt and wand she'd made for Mary, because she wanted to do something for us and didn't know what else to do. Mary loved them. (Plus poor Mary kind of got the shaft through all this, so doing something for her was brilliant). A sister-in-law paid for us to stay at a bed and breakfast and watched Mary overnight. Many donated to an online fund set-up by a friend and others just gave us money to help with funeral and healthcare costs. Family drove hours to come to the funeral. One aunt even came to the funeral despite being up all night with her husband who had kidney stones. And on and on and on. Even texts or messages on Facebook expressing love and support meant a lot. 
• The lesson: doing anything, big or small, helps. 

Sarah's burial quilt and dress from Isaac's mom and aunt.
A box of sunshine from a friend. A star named Sarah.

4) Offer specific services

• Grieving people are overwhelmed and indecisive. Also, in my case, I hate asking for help. (Let me rephrase that. I HATE asking for help). One of the best things that happened to me was when someone from church stopped by to announce that three people planned to bring us dinner that week. I was up and functioning at a basic level by that point, and could have managed mac & cheese or takeout to keep us from starving. So I never, EVER would have asked for meals. They just brought them anyway. 
• "Let me know if I can do anything" is a nice thing to say and I really appreciate it. But it puts the responsibility on me to a) figure out what I need and b) get up the guts to ask for it, which I hate doing. Rather, look to see if there's a need you can fill and just fill it, and override my objections if necessary. 

5) Ask about Sarah, and don't panic if I cry

• Sure, grieving is unpleasant. But, believe it or not, I like talking about Sarah, even if it makes me cry (which it doesn't always). I love her. I miss her. Asking about her may be awkward because you don't know what to say. But it's better to say, "I don't know what to say, but do you want to tell me about her?" than to pretend nothing ever happened. When I went in for my 6-week postpartum check--a potentially sad experience--the MA, who I know pretty well, just asked about Sarah and then listened when I shared some of her story. I wanted to hug her I was so grateful.
• At the risk of being perverse, there may be times when I want to talk about anything BUT Sarah. While in the hospital, at first we didn't know what was going to happen and we kept getting bad news, and I spent a good amount of my time...um...crying. I had a cousin come visit and we talked a bit about Sarah at the beginning, and then went on to just shoot the breeze for an hour. She got me laughing about frivolous things and it was so refreshing to feel normal. 
• The lesson: Listen if I want to talk, move on if I don't. But please don't pretend Sarah never happened. 

6) Let me feel what I'm feeling

• Isaac and I each spoke at Sarah's funeral. We both wanted to. And we both worried that we'd be too emotional to say anything. The morning of the funeral, we felt super calm, and I actually felt guilty that I wasn't crying as I greeted people that morning. People are going to think I have no soul... I've learned that grief is up and down and unpredictable and utterly unreasonable. I'm just along for the ride. (And don't worry, I finally lost my composure at the funeral when we closed the casket. But I still made it through my talk.)

7) Please don't minimize my grief

• Just about any sentence that begins with "At least..." is dangerous. "At least she didn't suffer," "At least you have Mary," "At least you'll see her again," "At least you didn't have her long enough to get attached," (Hah) "At least she's in a better place," etc. Here's the thing: some of those statements are true, but it's better for me to decide what I am or am not grateful for. Yes, I'm grateful I have Mary. But Mary doesn't have a sister now. And having another child means that I know what I'm missing. Yes, I believe I'll see her again. Yes, that comforts me. But my arms are empty NOW. The rest of my life feels like a long time to wait to be with her. 
• Please never compare my situation with someone else that "has it worse." Hearing about someone who lost more kids than me, or that never had kids, or that had a child die in a horrible, tragic way won't make me feel better. Does losing one kid stop being sad just because I could have lost two? Am I only allowed to be sad if she died in some horrible way? Further, hearing horror stories only makes me afraid of also losing Mary or any future children. 
• Please don't placate me. The phrase I haven't yet heard, and hope to NEVER hear, is "Don't worry, you'll have lots more children." There are so many things wrong with this. Sarah was a person, not a microwave. Even if I get another one he/she won't be Sarah. I miss a specific child, not a replaceable object. Secondly, I don't take my pregnancies for granted. Both were miraculous. While I hope to have more kids, I have to also consider the possibility that I may never get to be pregnant again. 
• Last, don't be a victim. I appreciate it if you're sad on my behalf or sad about Sarah in general, but please don't be SO sad that I end up having to comfort you. 

8) Belated might be better

• There's no need to feel embarrassed offering condolences awhile after the event. We received the most support during the first few weeks after Sarah's passing. But grief doesn't magically stop after a week or a month or even a year. A few very welcome surprises have come in the mail even almost 2 months out, and I'm grateful they came late. 

9) My faith is intact, but even if it wasn't...

• Even Christ wept at the passing of his friend Lazarus. Grief is instructive. It is humbling. It is refining. It is part of life. Grieving doesn't mean that I lack faith. It means I loved.
• But regardless of the status of my faith, don't judge. If someone gets mad at God for "taking" their child, your job isn't to fix their faith. It's not your place to decide how a believer should respond or lecture them about repenting so they can see their kid again. Please don't add guilt to grief. 

And finally...

10) Sincere compliments

• I am still a mom, and every mom loves to hear that her child is beautiful. One sister-in-law mentioned what a beautiful presence Sarah had, that she could sense the purity of her spirit. And I thought, Oh good! You could feel it too! It was also encouraging to hear people say that we were strong. I don't know how a person is "supposed" to act or respond to something like this, but it's strangely comforting to have people think I'm handling it "well"...whatever that means. 
• The single best thing to say to me is that Sarah's life touched you somehow--strengthened your faith, helped you appreciate your children more, inspired you to be a little better, etc. Every mother wants her child to be remembered. I think Sarah brought goodness and beauty into this world. Knowing that helps replace a little bit of my grief with gratitude. 

And because poor Mary has been a little neglected on here lately:

Making faces in the mirror. Profile at the zoo.
New wings. Nerd glasses.

Goodness and Mercy

I haven't posted on this blog for several years now (this is Isaac, by the way). But our recent experiences with our daughter Sarah have made me want to write a little about my own thoughts and experiences.

Our little Sarah, all bundled up

For those who don't know, our second daughter Sarah lived only four days: she was born on August 12 and died on August 16. She was beautiful. She was born. She was alive. She breathed. She slept. She awoke. She held our hands. She once looked into our eyes (at least that's how it seemed). Then on a peaceful Saturday morning we removed her breathing tube and she died peacefully in our arms. Our beautiful little girl, gone from this earth.

Daddy's little girl

In those four short days Sarah changed my life, I hope forever. She changed the way I see my life, but most importantly she changed the way I view my faith in God.

I believe in God. I have always believed in God. But before Sarah my faith in God was more intellectual, more spiritual. But Sarah made the love of God tangible. Rather than an abstract thought -- something that made me feel good inside -- the love of God become something real to me, something I could directly interact with. It was given to me and washed over me during the hardest time of my life.

At Sarah's funeral I described it like this: It was like being thrown into the darkest abyss, only to find myself standing on solid ground. There is no other way for me to describe it -- something was there. It was not something I earned. It was given to me as a gift.

Saying goodbye, for now

At the funeral

We who believe in God often say that our belief, our faith, is meant to make us "happy." I believe that this is true, but that it is also untrue. "Happiness" as we define it now is a rather recent, modern idea. We are not promised that if we keep the commandments of God and follow Jesus Christ that our lives will be filled with ease, that our stress will always be low, and that our mood will always be slightly toward the "pleasant" end of the spectrum.

Throughout my experience with Sarah I had a scripture in my mind, which I think better describes what we can expect from a spiritual life, from a life committed to following Christ. It is found in the beautiful Psalm 23:

Surely goodness and mercy shall follow me all the days of my life

Goodness. Mercy. That is our promise and our inheritance. During Sarah's four days on this earth there was so much goodness, so much mercy, that we hardly had room enough to receive it. Sarah herself was the epitome of Goodness and Mercy. She was Goodness and Mercy packaged up in an imperfect body, sent to show us God's love.

Many more challenges await me in my future life, I am sure of that. But I am confident that goodness and mercy will follow me, all the days of my life. And someday I will dwell, with my daughter Sarah, in the house of my Lord, forever.

Peace like a river

Our daughter Sarah lived only 4 days. Though her life was brief, it was also beautiful, and it was miraculous.

Her story starts back in early January when I found out I was pregnant. This was confusing to us because I hadn't done IVF four times like we did with Mary. We took 7 pregnancy tests, just to be sure. They were all positive.

My little miracle pregnancy progressed very normally until about 32 weeks, when I suddenly doubled in size over about 2 weeks.

32 weeks

34 weeks

I wondered idly if I had extra amniotic fluid or something that made me get so big so fast. Isaac pointed out that I was supposed to get bigger during the 3rd trimester.

During my 34-week check, a quick ultrasound to check Sarah's position (breech, with her head up by my ribs) also showed that there was WAY too much amniotic fluid surrounding her. The next day we went to see a perinatologist (a pregnancy specialist) for what I thought would be a quick chat about trying to get Sarah to turn before the delivery.

Our quick little appointment turned into a 2 1/2 hour doozy of a meeting with the doctor.

The bottom line: there was too much amniotic fluid because Sarah had something very wrong with her brain, and she wasn't swallowing the fluid like she should.

Bless that doctor, he took a long time with us, explained everything very thoroughly, and emphasized a few things:
1) The extent of her brain damage may be anywhere from mild to profound. He could not tell in much detail with just an ultrasound. His instinct, however, was that she would be more likely on the severe end of the spectrum.

2) We needed to deliver at the bigger hospital that was slightly further away. It has a higher-level neonatal ICU and he wanted us there as a precaution.

3) I should expect an early delivery. The extra fluid would trick my body into thinking it was more pregnant than it actually was. (In fact, I was already having contractions by that point).

4) He recommended further testing, and we scheduled a fetal MRI for the next week, followed by possible genetic testing.

The doctor was dead-on about #1-3.

I'll admit, that appointment was overwhelming. I'd had a very healthy, normal pregnancy up to that point, and of all the problems she could have with her little body, neurological problems were what I feared the most.

As it happened, Isaac and I had planned a weekend trip for just the two of us at a local ski resort starting that evening. We went directly from the appointment to drop Mary off with some family, then went on our trip. This allowed us a weekend together of (short) nature walks, breakfasts overlooking the river, rides on the ski lifts, and lots of time to talk about Sarah. We told our immediate family members, but with such limited information we weren't sure what to expect. We prepared ourselves to raise a mentally handicapped daughter.

That weekend we happened to listen to a talk by one of the leaders of our church, Dieter Uchtdorf, titled "Grateful in any circumstances". He said, beautifully, "those who set aside the bottle of bitterness and lift instead the goblet of gratitude can find a purifying drink of healing, peace, and understanding."

Those words set the tone for the rest of the week. We decided to be grateful for Sarah, and to love her and accept her regardless of the extent of her problems. We decided to trust God, believing that He was in control.

The timing of that ultrasound, the meeting with the specialist, and our little weekend trip proved to be miraculous.

Sunday we returned from our trip, and Monday, 35 weeks along, I started having contractions in earnest. They continued, maddeningly, on and off for two days, until Tuesday evening, when they became strong enough that I couldn't walk around any more. I finally consented to have Isaac call my doctor (who is also my uncle), who told us to go to the hospital. I went grudgingly, knowing that the contractions were just going to peter out again, as they'd been doing the last 2 days. Sure enough, they subsided almost completely on the way to the hospital.

Camber in labor. Mary imitating Camber.

I felt super frustrated with my body, and we decided to just walk around the hospital for a few minutes and then drive home if the contractions didn't start up again. As we walked toward the entrance, someone greeted us. It turned out to be my uncle's partner, Dr. C., who was going to do my delivery since my uncle couldn't deliver at the bigger hospital. Now I just felt embarrassed that this doctor had driven down to the hospital to check me when my contractions had petered out again, but there was no turning around to go home at this point.

It turns out that was a very fortuitous encounter, because when Dr. C checked me, his eyes grew wide and he said, "You're at a 9. We need to GO." Sarah was breech, and we hurried to do a C-section before she came out on her own and, potentially, got stuck.

A flurry of activity followed--Isaac in white suit and blue booties, calling/texting family and doctors, IV, spinal block, drapes, uncontrollable shaking, nerves, warm blankets, Isaac's hand in mine. Baby.

I barely knew she was out, since I couldn't see or hear her. A team started working on her right away in an adjoining room, and Isaac went back and forth from her to me, giving me updates. Not breathing on her own, but beautiful. I wouldn't see her for 3 more hours, when we dragged my barely-working legs into a wheelchair and went upstairs to the NICU to visit.

On my way to the OR

Isaac's hot OR suit

It was evident from the beginning that something was wrong. Not only could Sarah not breathe on her own--couldn't even keep her own airway open--but she lacked all the normal newborn reflexes, including a gag reflex. Bad news kept pouring in. Her movements were erratic, resembling mini-seizures. The electrical activity in her brain was abnormal. The nerves in her eyes were malformed, meaning she was likely blind. The ventricles in her brain were too big. An MRI of her brain showed a missing corpus callosum, missing sections of the hypothalamus, and general lack of development.

Despite all this, on the outside, she was beautiful. She even had a head of adorable light brown hair. Her perfect little features belied all the neurological problems she had. She never cried, since she was on a ventilator, and never seemed to be in distress.

We held her for the first time about 24 hours after her birth. Aaaaaand...we cried. A lot.
Because, despite everything, we were in love.

Thursday evening we had the Meeting. All the needed tests had been done, and we met with our wonderful neonatologist, Dr. M, who had spent much of the day discussing Sarah's case with other doctors, reading the MRI report, and researching her case. She explained the following:

1) The problems in Sarah's brain looked more consistent with some kind of global injury rather than a malformation--meaning some kind of damage has occurred, rather than a genetic or chromosomal defect.

2) The damage probably happened sometime during the second trimester, halting the development of her brain from that point onward.

3) Ultimately, Sarah's condition was not survivable. The damage had been present for long enough that there was no hope for recovery of function from this point onward. And unable to breathe, swallow, see, hear, or move well on her own, she would have poor quality of life should we choose to prolong her life.

I think Dr. M, who had been present at Sarah's birth, knew pretty much from the beginning what the outcome would be. She had determined from the beginning to give us the best experience with Sarah possible, while hinting at the severity of what she saw and never giving us false hope.

We knew this was coming, and hoped and prayed that the decision we would have to make that night would feel clear. It did.

In the end, we all agreed that taking Sarah off the ventilator and allowing her to pass away was the best course of action. I was fine in this conversation up until this point. Then I started plowing through the tissues. Because obviously I wasn't going to not be there while she died, but that meant I'd have to be there when she died. It was a task that felt utterly overwhelming.

We decided that Saturday would be the day. My family all drove into town on Friday; Isaac's family is already local. I was discharged from the hospital that day as well. I tried not to dwell too much on the thought that I was leaving the hospital without my daughter, while I listened to other babies crying in rooms near mine. I was once that mom. I'd had Mary, she was healthy, and I brought her home with me. I had that experience. This time I was going to have a different experience.

Friday night we drove back to the hospital for one final visit with Sarah. Her nurse, knowing that I'm also a nurse, offered to let me do some of Sarah's cares for the evening. So I awkwardly took her temperature (keep in mind, I always took care of adults, never newborns), changed her diaper, weighed her, and gave her a bath. Isaac and I both held her for a long time as well.

Giving Sarah a bath

That night is one of my best memories of Sarah. One of the hardest things about having a baby in the NICU is that someone else is generally your child's caregiver. I showed up for visits, but I was never the one taking care of her. I longed to just feel like her mom. That night I had my chance. Also, something changed in us during our time with Sarah that night. Usually visiting her just made us sad (my personal habit was to burst into tears every time I saw her), but during this evening, the grief dissolved into peace. I started to think that maybe, maybe, Saturday would be okay.

There's something else about Sarah that I find hard to explain. There was a spirit about her. She didn't feel like less of a person to me because of her neurological problems. Rather, it felt like she was too good, too pure to stay here long. I am convinced that she was aware of us, despite her sensory limitations.

Saturday morning we dressed Sarah in her beautiful white blessing dress, after disconnecting her from all tubes except the ventilator. The NICU had a large room set aside for our purposes that day, where we met our families. Isaac gave Sarah a name and a blessing (a tradition in our church), and then all of our immediate family members took turns holding her.

A photographer drove over an hour each way to volunteer her time to take these beautiful pictures of us with Sarah both before and after we took her off the ventilator (there's a national organization of photographers that volunteer for things like this). Bless her.

Mary meeting Sarah for the first time. This was just before she poked Sarah in the eye and said, "Eye?"
She has newborn anatomy down pat.

Me and my girls.

Then everyone left us alone, except a few hospital staff, and the time came that we'd initially been dreading. At first, when we decided to take Sarah off the ventilator and let her pass away, that seemed like the most traumatizing thing I could possibly imagine. That morning, though, a feeling of peace permeated the room. I almost felt a sense of anticipation, because we were sending her home. It felt right.

One of our fears was that she would linger for hours. She had been taking a lot of breaths on her own, beyond the help she received from the ventilator. Dr. M prepared us for the possibility that, if she kept breathing well on her own, we might have to wait for her to be overcome by her secretions before she would succumb. We sedated her slightly beforehand so she wouldn't struggle too much or become uncomfortable with the process. But, as it turned out, she stopped breathing almost right away. She didn't have enough strength to keep her own airway open without the ventilator in place.

It took maybe 45 minutes to an hour for her heart to stop completely, and during that time we held her, admired her little face without the ventilator, and told her we love her. By the way, I thought my tear ducts would have dried out by then, after the week we'd had, but those things just kept producing! Remarkable.

I decided to leave out the pictures where we're crying.
Didn't want to make it awkward for you all.

What I remember most, though, is the feeling of peace. Nothing about the experience seemed horrible. Sarah's passing was beautiful and serene, as was her life. Reflecting back over our time with her, it felt like a privilege. Back to the gratitude thing--I felt profoundly grateful for our time with her, and to God for blessing our family so much with such a beautiful person. In our church, we believe that families are forever. That belief became very real to me as she left us that day. I felt--and feel--an assurance that we will see her again.

I don't want to downplay the grief or the sadness of sending this girl back home so soon. But Sarah's life was a string of miracles, and the last one was this: that day, we left the hospital smiling.