The Straitjacket

Today was all over the place. I made plans to fulfill a long-held dream (which I can't share yet because I have to tell my mother first!), among other things. It will always be a day that rocked my world.

And it included a trip to the pediatric dentist for Caroline. It wasn't her first visit, of course, but I decided that she finally needed to get her teeth cleaned after four years (she's always refused before). After twenty minutes of cajoling her into the chair, she still couldn't relax enough to let the teeth-cleaning happen.

DO NOT JUDGE ME. Apparently there's something called a ped wrap or something like that. No. It's basically a miniature straitjacket that restrains the child from neck to toe. My child needed clean teeth. I'm sure you can figure out what happened next. I gave my consent, but I did not participate.

Caroline was hysterical. My hands never left her body. As soon as they laid her down, the dentist and hygienist dove into her mouth. (Although it might not sound like it, I love this dental practice. They were really good with her. Plus, they complimented us on her exceptionally clean teeth.)

And, cue the NICU flashbacks. The scene was identical: bright lights, loud noises, tubes everywhere, lots of things going into my child's mouth. Except this child was about 36 pounds larger. I just lost it, right there, and I had to turn away from Caroline so she wouldn't see me weeping and get even more upset. Like the NICU staff, pediatric dentists have to "treat" the parents just as much as the little patients. And treat she did.

I was able to pull it together after a couple of minutes and turn my head back toward my screaming child. She finally calmed down a bit toward the end. The cleaning and exam only took about five minutes. When they "released" her from the damn straitjacket, she was soaking in sweat.  Then she smiled, smacked her lips together, and said, "Ohhh, my teeth are so healthy."

As all parents know, watching your child hurt is pure agony. Especially when it includes flashbacks of your dead child's suffering. These scenarios still take me by surprise. Who would have thought a dental visit would be so traumatic? Now it's obvious. Caroline was fine within thirty seconds of finishing, but I'm still upset about the whole experience.

However, Weston came up with the dental staff. I told them he died, because they asked why they hadn't seen my second child at the office. There's no escaping that one. But guess what they did: they asked me how he died. And that is another reason why I love this dental practice.

More of the Same

If you haven't suffered, live longer.

The above sentence from the link, among a few others, jumped out at me. If we have all suffered, or will suffer, why are we so inept at responding to the suffering of others?

Sometimes, it's because we suffer in silence. Although I bare my heart and soul on this blog, I've become an expert at pulling myself together in public. Except in big groups. And at church. And baby showers. I haven't been invited to one yet since Weston died, but going to one sounds like the eighth or ninth level of hell.

Anyway. I'm good at "being strong." I'm pretty stressed out right now, with too many commitments and not enough time, and stress swallows up grief pretty easily. People, including family, ask how I'm doing (for real), and I sidestep it, because I'm letting the distraction of the moment overshadow my grief.

But that is a major digression from the point of the link. The link is more of the same, really, but it is so incredibly important that I will say it twice: knowing God does not mean you can sidestep grief. Knowing God does not mean you can sidestep grief. 

For whatever reason, it's so tempting to just spout off attributes of God to a suffering person (see the link), but doing so is so unhelpful. Let the suffering person think and feel for themselves and arrive at their own conclusions about God; it will be much more meaningful that way. As a bonus, the suffering person will not have to exercise any self-control for refraining from punching the spouter-offer in the face!

Why do I have a feeling that the problems described in the link will never go away? Sigh...

Just read the link. She is a much more pleasant person than I am.

The Comparison Game

It's an ugly, unwinnable game. Moms play it. Lawyers play it. Wives and runners play it. Strangers play it. Even bereaved mothers play it.

I recently learned that someone I know casually lost a son to stillbirth just last year. She lost another child too, but I don't know any details. What was remarkable was that she mentioned her losses casually and then continued with the original topic. 

Yet, as soon as she mentioned her son's death, my stomach tightened. For her and for me. She kept talking, and I had to interrupt her to tell her how sorry I am for her losses. While interrupting is rude, I believe it is unacceptable not to acknowledge losses.

Our attentions were turned elsewhere. Later, I wanted to tell her about Weston and find out about her other child, but we didn't have a chance to talk again.

I walked away from that conversation being astounded at how pulled together she seemed. There is no way that I could just casually mention that I have a son who died. Telling Weston's story, even very briefly, to someone who doesn't know about him makes me cry every single time. 

Also, I was envious. I can't talk about my son in this group because I will cry. There's nothing wrong with crying, but I don't always feel comfortable doing it. And now this group knows about her two babies, but not mine.

So, I'm comparing. How does she keep it together when I can't? And, inevitably, the next question becomes: what is wrong with me? Even after fifteen months of this, I am so deeply embedded in our numb-to-grief culture that I have the audacity to wonder what is wrong with ME.

I don't mean to imply that something is wrong with her for not getting emotional, either. Maybe she's not much of a crier. I, on the other hand, have always been a crier.

Maybe it's the fact that, in fifteen months, the ONLY strangers/casual acquaintances (besides other bereaved parents, of course) who asked a follow-up "What happened?" when learning that my son died were (1) the chaplain at the hospital and (2) a man who saw me sobbing in the hospital lobby once. Seriously, doesn't everyone wonder what happened? I do (and always have), when hearing that someone died. And we call that "morbid curiosity."

It is so much easier to recite the facts of Weston's premature birth and death than it is to talk about how I'm doing. Telling the medical story does not truly address the heart of the matter, but it does help; a simple "What happened?" in response to "Caroline is my only living child" or "Yes, I have a son, but he died" means that a stranger believes that Weston is just as deserving of attention and conversation as Caroline.

Even if it's just morbid curiosity, I'll take it.

Maybe I'll always play the comparison game anyway. Everyone does it, because we're focused on things that don't matter. How I long for a world where everyone knows that tears are sacred and cause for running toward, not away, from those who shed them.

Matters of the Heart

Recently I posted about the joy and grief coexisting in my life. For a concrete example, here you go. This all happened today:

Caroline and I spent thirty minutes on the floor at Barnes and Noble looking at a giant atlas of the human body. She would tap my arm and point to the picture she wanted me to explain. Describing the human heart to her, my heart was full.

Spoken at random while reading later: Mommy, should we get a baby that doesn't die?

While outside looking at the beautiful sunset, she kept jumping up and reaching for the sky. She explained, "I'm trying to reach Weston....Here he is...Okay, now I have to throw him back up."

After dinner: Mommy, is there anything I can do to help?

A few minutes later: Is there anything else I can do to help?

A few minutes later: Is there anything else I can do to help?

A few minutes later: Is there anything else I can do to help?

(She actually helped with something every time.)

A few minutes later, after retrieving my jaw from the floor: Is there anything else I can do to help?

While dropping her off at her Wednesday night activity: we said goodbye, Shannon helped her out of the car, and then she said, "Wait!", climbed back into the car, and gave me a huge kiss on the cheek.

Then Shannon and I had a coffee date.

All of this in one day is pretty extraordinary. I don't think my heart could handle this every day.

Avoidance

I'm not quite sure why I'm posting this article. It's not that comforting or encouraging. Maybe I just find solidarity with this mother. I've never stopped avoiding people and questions about my children, but I'm also back to tearing up in public, as she describes.

Seven years after her child's death, this mother is not "healed" or "cured" from her grief. Yes, she has found ways to cope, but coping is not the same as healing. And, I guess I find comfort in the fact that there is no pressure for me to "heal," at least from other grieving parents. They will always get it.

Recently, I was at a party where I hardly knew anyone. These are the perfect parties for me, I am discovering. Shannon and I had such a good time. I ended up talking to another lawyer for quite a while, and the conversation inevitably turned from lawyer-talk to children. I never told him that I am not currently practicing law or that my son is dead. And it was great: in that story, I was a working lawyer brilliantly balancing my career with my two children.

Grief is a never-ending road. I'm learning to be comfortable with always being sad while embracing the joy that I encounter. My due date was October 26, 2012. I should be trying to juggle Weston's first birthday with Halloween. I am, however, very excited about the cute little ghost we will have running around the neighborhood next week. She has been talking nonstop about her little brother lately.

And with that, I am going to adorn Weston's urn with Halloween decorations.

Be the Cook

Don't judge a blog post by its title.

If you know me well, you'll be shocked that I'm linking to a post entitled "How I Witness to People in a Crisis" on a blog called Sustainable Princess.

First, I loathe all things princess. Sorry to open that can of worms, but I do. Second, the term "witness to" conjures up crazy people waving Bibles and yelling fire and brimstone phrases on the street corner. Handing out religious pamphlets and asking strangers if they know Jesus is just as bad. I prefer to let my actions do the talking; I am really not into shoving Jesus down people's throats.

And, I fully concede that my words on this blog most likely do NOT make people more interested in Jesus. I can only pray that my day-to-day interactions represent him better.

ANYWAY. In the wake of a crisis, so many well-meaning people become the equivalent of the fire and brimstone guy. I really don't know anyone who likes that guy or finds him remotely helpful or effective.

Well, based on the linked post, Sustainable Princess might be the first princess I could ever designate a suitable role model. My favorite line, and the perfect way to close: "[T]elling someone that they need food is not the same as bringing them dinner."

Missing this precious boy tonight, the week before my due date anniversary:

My Cup Runneth Over

Speaking of cliches, how about that title?! But I say it because it's true. Today is Pregnancy and Infant Loss (PAIL) Awareness Day. (And, to me, it includes all children lost at any age. Our children will always be our babies, won't they?)

Here is just a taste of my Facebook feed today:

And here is one of our candle displays at home:

My eyes have been opened to this specific remembrance of day because of this little boy, my son:

I am so sorry for all the empty arms.

Thank you, thank you, thank you for continuing to remember Weston. It has been almost fifteen months since he died, but he obviously continues to touch so many lives.

PAIL is an international day of remembrance. Ceremonies have been held at 7:00 p.m. all over the world. I bet the wave of light encircling the globe looks beautiful from above, and I hope Weston and all the other babies are enjoying the view.

Our hearts are full tonight: of sadness, as we will never get over the loss of our son, but also of peace, love, and gratitude for your walking with us. I'm sending you virtual hugs, and I hope to give each one of you a real hug someday. If we can't hug here on earth, I'll give you a big hug in heaven, and then proudly introduce you to my son.

My words are insufficient tonight. Besides, all of the flames speak what I cannot put into words. I am thankful.

Many waters cannot quench love; rivers cannot sweep it away.
Song of Solomon 8:7
(Thanks for this verse, Mom!)

The Anti-Cliche

"You're so strong."

"God doesn't give us more than we can handle."

Right. My reply to the above is very rude and sarcastic, so I'll let this post speak for me instead (although he does talk about punching people in the face-yeah! Glad I'm not alone in that sentiment.). I found it through a former classmate on Facebook who is now a pastor.

[Sorry about the weird font size. I can't change it.]

I am enjoying my self-imposed "link-up-to-other-posts-instead-of-writing-my-own" October schedule. I can rely on other people saying what I feel, only in a caring, compassionate manner, instead of the angry way I express myself. It's a breath of fresh air, isn't it? Relatively speaking, of course.

My blog was pretty quiet for a few days, because Shannon and I went to San Diego for a long weekend to celebrate a friend's recent wedding. Everything about the weekend was wonderful, although we missed our little sweetheart. It was the most time we've spent away from her together.

However, I'm certain that nothing will "top", timewise, the twenty-seven days I spent away from Caroline in the hospital, at least until she turns eighteen or so. Although I still saw her every day then, SHE spent twenty-seven days at home without her mother. That experience is always on my mind when I leave her now.

Tomorrow is Pregnancy and Infant Loss Awareness Day. I'd love love LOVE to see many pictures of candle flames tomorrow.

Before and After

This will take your breath away.

I used to think I was a little morbid by preferring Weston's post-death pictures to his pictures taken while alive. Then I read the above article and looked at the accompanying pictures, and I was glad to learn that my son isn't the only one who looks more peaceful when dead.

These people were very ill when the "before" pictures were taken. Perhaps some or all of them were afraid of dying. But the "after" pictures are truly breathtaking, as are Weston's. They are peaceful. I don't know if Weston was afraid of dying, but he was always very sick. He only found peace in utero and in death.

I have shared some post-death pictures of Weston. The pictures are stunning, but the ones I have shared publicly are edited. His skin was very irritated across his face from where his breathing tube had been taped. The nurses ripped the tape off quickly, because, well, he was dying, and we all wanted him in my arms as quickly as possible. The professional photographer removed the red marks.

There are some pictures of Weston I took in his last week of life that are awful. I have never shared them with anyone except family. I can hardly bear to look at them myself and will probably never share them publicly.

Retouched or not, Weston's post-death pictures are priceless. I think they are beautiful. And here is one I have never shared publicly until now. I took it with my humble iPhone:

That is my mother's hand. I have always loved this picture. I feel like it should be a big deal, introducing this picture into cyberspace, but Weston is already in the New York Times. This is just another picture. It's what death looks like, and everybody dies.

It is a photograph of my beautiful son. I hope I don't regret sharing this photograph. Please handle with care.

P.S. I didn't find all of these articles on my own. Today's article, and this one, came to me by way of the MISS Foundation's Facebook page. Dr. Joanne finds a wide range of fascinating and/or profound articles. You should check out their website and like them on Facebook, even if you're not a bereaved parent. There is so much beauty there, even in the midst of every parent's worst nightmare.

That's what the above picture is: a microcosm of beauty and every parent's worst nightmare.

Hope in the Dark

Hope's waiting is dark.

Ann Voskamp always has something profound to say. And she says it so beautifully; she is a poet at heart.

The day before I read this post, I was listening along to one of Caroline's CDs. (Who ever thought up the kids' music/entertainment genre? Ugh.) In the story, a little boy is sad that his pumpkins don't grow overnight after he planted the seeds. After several days of no growth, his father explains what we all know: it takes time, care, etc. for the pumpkins to grow. A book I read recently explores the concept further and deserves a separate post.

Point taken. I'll let Ann Voskamp explain the rest. And, in the meantime, I'll just hang out and wait in the dark. I've grown accustomed to it, and now I'm pretty comfortable there, given my life circumstances. When my time on earth ends, God will restore whole joy. No coexistence necessary.

Coexistence

This is not a post within a post, like most of my other October posts, but it's something I've been thinking about. Weston would have been fifteen months old today. He would be walking (or close to it, since he was so premature).

Anyway. Before Weston, I had good days and bad days. A good day happened when I slept in, or had a victory at work, or went outside for a run, or went on a date with Shannon, or watched Caroline have fun. A bad day happened if I was too busy to enjoy anything, or Caroline had a public meltdown, or I had a bad day at work, or I fought with Shannon, etc. Normal occurrences.

Then I was put on bed rest, and a good day was equated with minimal blood loss. Then I was put in the hospital, and a bad day meant I bled so much that my baby was in even more danger of dying. And I lost my daily wheelchair privileges. Seeing Caroline around dinnertime was the bright spot in every day when I was the patient.

Then Weston was born. A good day meant he pooped on his own, tolerated a drop of breast milk, perhaps gained a fraction of an ounce, and stayed alive. A bad day meant he was sedated, had a serious diagnosis, had unstable blood gases, had fewer rounds, and only one nurse assigned to him.

You get the idea: what constituted a good or bad day became more and more basic.

And then Weston died. My child is gone until I die: this fact makes every day unbearable. As long as my child is dead, every day will be a bad day. (Yes, he might be living in heaven, but he is still very dead in the physical realm, which is the realm I will occupy for the foreseeable future. Please do not try to talk me out of this.)

Yet, I have a daughter. I can't even describe how much I love her, and I get to spend every single day with her. I have a loyal husband who is just as crazy about our daughter. I have a loving family and more friends than I can count, and I communicate with at least one of them every day. A day spent with any one of these people is a very good day.

Two things happened recently that cemented this good/bad coexistence for me. We recently returned from several days on the central California coast for my cousin's wedding, and the weekend was a mini-family reunion. Many of them came to Weston's funeral, but it was good to see them under joyful circumstances.

As the wedding started, the musician started playing the exact version of "Somewhere Over the Rainbow" that I play all the time as part of my Weston playlist. Y'all know how I feel about rainbows now. Shannon looked over at me, wondering if I would be able to keep it together.

But then I remembered the song we played at Weston's funeral. A friend sang the same song at our wedding almost ten years ago.

I kept it together.

Why shouldn't wedding and funeral songs be interchanged? Both occasions honor love. Grief is a product of love, and I have plenty of love in my life. So do my cousin and her new husband.

The second thing was, simply, a visit with a friend. She met us in Santa Barbara for several hours before we flew home. I talked about her and her family in this post. The reasons for our reconnecting are, of course, terrible, but the reconnection itself is a priceless gift. We spent several hours together, and it was not nearly enough time.

So, there are no more purely good or bad days. The good and the bad mix, they coexist (but not always peacefully), and one is yin to the other's yang. Every day is as celebratory as a wedding and as tragic as a funeral. It's an uncomfortable and beautiful truth.

The Language of Lament

Well, I've already missed a day. Or has it been two days? Oh well. This next post, while not as shocking as the last, is just as important and is much more personal to me.

This post beautifully captures what I have been feeling and trying to say for over a year. I posted it on Facebook a week or two ago, so it might be a reread for some of you.

I tried to read through the Bible starting in February 2012. I was spiritually and intellectually curious, and I finally had some time to read, as I had just quit my job. I had read the whole Bible when I was eight or so, because that's what good Christian children do. If my memory is correct, my parents didn't force it, or even suggest that I read the whole Bible, but I wanted to check that box on the "good Christian girl" list. And I succeeded. When I was eight, anyway.

Anyway, I hadn't read the Bible back to back since then, and I was shocked to find out how much suffering and sadness there was. I picked up on it even before my pregnancy problems started (I read chronologically, so the story of Job came up pretty quickly). People yell and rail at God; they ask him where he is gone, why he is silent. Jesus himself asks God, while on the cross, "Why have you forsaken me?"

And it's not tactful or diplomatic. People YELL. They blame God for their troubles. I can picture raised fists toward heaven against a stormy backdrop. As it turns out, I can picture it quite easily, as that picture gained a face: my face.

After Weston died, it was all just too much. When I tried to read the Bible a few times, I was confronted with horrible things: yes, death and destruction. The Bible was placed on a high shelf and collected dust.

Since then, I've come to embrace the screaming and the wailing and the immense suffering of Jesus as an integral part of life. The "language of lament," as described in the link, is part of me now. And I am so very relieved to see that my lamenting self is so well-represented, beautifully, in the word of God.

.

Not For the Faint of Heart

More blogging madness:

Read this.

As the title of this post suggests, though, proceed with caution. If you are easily offended, you might want to skip it. Trust me, you'll know within the first paragraph if you should continue.

It's interesting: eighteen months ago, I might have harshly judged this woman, even without knowing her. Now I know that nothing we do occurs in a vacuum. This woman was grieving, and she felt alone and unable to reach for help.

Please, go beyond the behavior. Instead of the kneejerk reaction of "What is wrong with her/how could she do that," etc., perhaps we could ask ourselves, or better yet, the other person, what makes them hurt so much that they engage in seemingly inappropriate behavior.

(I'm not condoning this woman's actions. Likewise, I'm not offering excuses for the shameful things I have done and said to those I love most over the last year. But, often the hurt is so great that it comes out in destructive ways.)

As in any good piece of writing, there is much more to be discussed and analyzed than what I mention here, but, well, I'm trying to do this every day for a month.

My mother signs off her emails with an anonymous quote: "Be kind, for everyone you know is fighting some kind of battle." Amen.

Brutiful

Here you go: day 2 of this blogging madness

Life is Freaking Brutiful

After reading yesterday's post, and then this one, I think there might be a recurring theme here. We are all broken and messed up. Therefore, we need God and each other to survive the brokenness. That is the beautiful part. I hope that I end up more beautiful, in the sense that the blogger is talking about, on this side of losing Weston. But I suppose I will always be a work in progress. Aren't we all?

Busy October

October is Pregnancy and Infant Loss Awareness Month, with the big day of awareness falling on October 15. Last year, I asked everyone I know to light a candle in honor of Weston that day, and so many people lit candles for him. I was incredibly touched. So, heads up: October 15 is coming around again, and I'm going to ask for candles!

Also, my due date was October 26, 2012. I should have a one-year-old boy right now.

In honor of this month, there is a grief project going on where you share a photograph or topic every day that relates somehow to your child. I participated last year, and it was very cathartic. Apparently, though, October is some kind of crazy blogging month in general. Several bloggers I follow are doing 31 days of blogging about every topic under the sun.

I've decided not to participate in the same grief project this year, but I do want to attempt something special this month. Of course, I reserve the right to change my mind at any time. Over the last fourteen months, I have stumbled onto many blog posts, articles, books, poems, etc. that have comforted me or otherwise resonated with me somehow. So, I am going to attempt to share one of them every day, or most days, in October. In the future, then, I'll know where to find this large collection of comfort.

Here is today's link:

Working Good

The author of this blog post is a friend from my undergraduate days. Tiffany Ann has a nine-month-old daughter, Campbell, with a chromosomal anomaly. She has endured, and will continue to endure, multiple surgeries, and there is no "cure" for her condition. Having a sick child is enough to severely stress the strongest, most faithful families. In just nine months, she has watched her baby daughter face what most of us will never have to experience in our entire lives, and she has had to divide her attention among Campbell, her three other precious children, her husband, and others.

You might be wondering how this is comforting and encouraging. If you haven't already, read the post. God has given Tiffany Ann and her family extraordinary grace and perspective to endure this marathon of a year. She is not afraid to address the incredibly difficult questions and then really sit with God and herself to find some answers.

Why is Campbell sick? Why did Weston die? Like Tiffany Ann, I believe that those questions will never be answered on this earth. Tiffany Ann reminds me that it's acceptable to not have the answers now, although I have to CONSTANTLY remind myself of that.

We are all broken people in some way. That's just part of being human in this world. Weston has been healed already, and the rest of us will follow. In the meantime, we broken people need each other, and that's why I'm glad to have Tiffany Ann, and countless others, in my life.

Paid in Full

A financial load has been eliminated. We officially finished paying off our medical bills related to Weston's and my medical care on September 27.

I'm not celebrating my fatter bank account.

We paid almost 90% of our bills within six months of Weston's death. This last one, from his neonatologists, took a little longer to be negotiated with our insurance company, and we were presented with the final bill earlier this year. There was no interest accruing, so we just decided to make monthly payments. We were projected to pay it off in November. It hadn't occurred to me to anticipate what that would feel like back when we initially made the payment arrangements.

Although it's not fun to part with money, I didn't mind the monthly payment. I always paid over the phone: I'd give the billing specialist our account number, and she'd pull it up and say, "This is for Weston Yoder." That always made me smile. I love hearing other people say his name, so much. And I would think that maybe the billing specialist doesn't even know he died, and this payment is just like me paying for a well baby visit or something. One can fantasize.

Last week, I called to make our payment, and the office informed me they would discount our remaining balance by 35% if we would pay in full right then. Well, of course I'd like to save over $100. Yes, I'll look for the "Paid in Full" receipt in the mail. Yippee, that frees up more money every month.

I hung up the phone and cried. It's yet another severed connection. We would have been spending the money anyway if Weston had lived. This is what happens when your baby dies: you'd literally pay to keep a connection, however tiny.

Although I'd give up my financial security in a heartbeat to have Weston back, I don't want to trivialize the usually-crushing financial toll of having a medically fragile child. We are fortunate to have had good health insurance and the financial resources to pay the high four figures of what insurance didn't cover, not to mention the ongoing expenses of counseling, which is not covered by insurance. The fact that the medical bills have been manageable is one less thing to worry about.

If a bereaved parent did not have the financial resources to pay his/her dead child's medical bills, the monthly bills and phone calls would be incredible stressors. This holds equally true, I imagine, for families of children with extraordinary medical needs. Weston didn't live long enough for us to be presented with a series of bills while he was alive. If he had, I know we would have been shocked, and then panicked about how we were going to pay this bill, and the next, and the next...

Although child death transcends all socioeconomic classes, among other categories, my lamenting the loss of a medical bill is definitely a first world problem.

First world or otherwise, big bank account or small, I miss my son. When all that remains are memories, I'll gladly pay for them.