Out of Hibernation

Phoenix is on an opposite schedule from the rest of the country when it comes to indoor hibernation. We are largely left out of summer celebrations and traditions in which the rest of the country indulges. You just can't tough out 110 degrees outside, unless you are in the pool. Lows hover between the high 80s and low 90s. Because pools are in back yards, no one sees much of each other during the summer, unless it's indoors. Starting in September, though, or anytime the temperature drops below 95 or so, we Phoenicians come outside in droves. Fall, winter, and spring is our outdoor party time.

We love our neighborhood. It's safe, pretty, kid-friendly, and we neighbors are pretty friendly with each other. We have an e-mail listserv. We watch out for each other when we go out of town, keep each other updated on safety issues, etc. Every December we have a holiday round robin party where we congregate at three or four houses and have appetizers, drinks, desserts, etc. Everyone comes, and it's a lot of fun. Our family hosted a round robin pit stop one year. Halloween is also a big affair. And with our semi-regular running, Shannon and I tend to see our neighbors often.

The latter part of my pregnancy, Weston's birth, and Weston's death happened in summer, during hibernation time in Phoenix. Add to that my bed rest starting in the second half of April, when I was less than 13 weeks pregnant, and no one has seen me outside for months. For Shannon, the heat plus his added responsibilities around the house meant that he did not see the neighbors either. Several families on our end of the street know about Weston, but the rest of the neighbors do not. Word has not gotten around yet.

Now, the weather is slightly cooler at night and in the morning. Summer hibernation is ending.

Running has been a part of my life for many years and is a wonderful stress reliever and mental escape for me. So, as soon as I hit the six-week mark after my c-section, I tried to hit the road one morning. Physically, it did not work out well, because I still have pain from the surgery, not to mention the fact that I have been mostly horizontal for the past six months. Emotionally, the run was a nightmare.

I put a playlist together that is mostly about death, grief, and loss, with some specific songs about child loss. For my first run last week, I had the bright idea of listening to that playlist for the first time. By the time I got to the turn-off to our neighborhood on my way back, I was sobbing. And then I saw one of my neighbors, who doesn't know anything about my pregnancy and Weston, walking toward me with her two sons.

I panicked. There was no hiding behind my sunglasses; I was too distraught. I didn't want to upset her kids. There was just no way I could talk to her at that moment. So I left the dirt path, crossed the ditch and tried to cross the street. Except there were cars coming, and there is no sidewalk there. So I had to teeter along the edge of the street between oncoming traffic and this ditch while ignoring my neighbor who was fifteen feet away from me. It was painfully obvious that I was trying like hell to avoid her, and I felt horrible. I want everyone to know what happened, to know about my wonderful son, but I sure can't talk about it.

Fast forward a few days, and Caroline and I were out on an evening walk. I saw another neighbor outside with his son. The difference here was that this neighbor knows I was pregnant. I told him and his wife about a week before my complications started, but I hadn't seen or talked to them since. Right now, I should be 31 weeks pregnant. So there I was with a flat belly: the proverbial elephant in the room. As I approached, my stomach just started turning; I was completely petrified. We chit-chatted for a minute, he didn't ask, and I somehow kept my shit together. Whew. But I will have to tell them at some point.

And, tonight. We went for a walk after dinner and ran into the neighbor whom I avoided like the plague last weekend. Knots in stomach. She walked over to say hi, and Shannon asked her how her summer was. I was screaming internally, "NO, NO! Now she will have to ask us the same question!!!!!" And, it came: "How are things with you all? Status quo?" I completely fell apart and had to walk away. I picked up Caroline and dropped my keys. She informed me several times that I had dropped my keys, and I was too upset to tell her that the keys would have to wait. Then she saw me crying and started screaming herself. I could hear Shannon in the background saying, "He lived for three weeks...". Total nightmare.

After a couple of minutes, I collected myself and walked back to them. Thankfully, I was then able to explain my running away from her the other day and apologize for that. She was very gracious, but the whole exchange was awful for everyone. I can't handle having this same conversation multiple times. If we tell a couple of other people, I'm hoping that the news will start to travel around the neighborhood. As it stands right now, there is no way I can handle Halloween or Christmas in our neighborhood. Hell, I can't handle Halloween or Christmas, period. And with Caroline being three now, we will continue to get the "When are you having another baby" question.

There is no getting around the horrible conversation that is going to have to happen repeatedly. I am so tired of being cooped up in the house, and I need human interaction, but I am clearly not ready for normal life. And what is normal for me now anyway? I'm not a part of real life. It's like I am observing everyone else living their normal lives, but I cannot get through a moment without pain. I feel like the walking dead. 

So, despite my blog post title, I am not ready to come out of hibernation, so to speak. That probably does not come as a surprise to anyone. Instead, we are leaving in a few days for the East coast, where we go every summer and where no one except family knows us, for two weeks. Hibernation continues.

One Month

Today is August 28. Weston died one month ago. My alarm went off at 8:15 this morning; the death certificates indicates that Weston died at 8:10 a.m.

I do not feel any better, although I am able to get out of bed in the morning now. I do not miss him any less. A good day is when I cry four or five times. And I am not finding comfort where I used to.

When I was eight years old, I read through the Bible in one year. I decided to do so again this year. I started on February 15, three days before I found out I was pregnant with Weston, and I am reading chronologically instead of straight through, so it skips around some. Lately, I haven't been reading as regularly, so I did a lot of catching up while Caroline was "napping" today (she didn't sleep; she just hung out in her crib. This does not bode well for our two airplane flights tomorrow.).

Chronologically, I am reading about the rulers and people of Israel and Judah in the Old Testament, so I'm skipping around the Kings, the Chronicles, Isaiah, and, today, Amos. It is awful. God was unhappy with Israel, so he rained down judgment after judgment. It talks about fire, plagues, famine, killing, ripping open pregnant women (interesting timing on that last one). Here are some snippets:

"There will be wailing in all the streets and cries of anguish in every public square. The farmers will be summoned to weep and the mourners to wail. There will be wailing in all the vineyards, for I will pass through your midst," says the Lord. Amos 5:16-17.

"In that day," declares the Sovereign Lord, "I will make the sun go down at noon and darken the earth in broad daylight. I will turn your religious festivals into mourning and all your singing into weeping. I will make all of you wear sackcloth and shave your heads. I will make that time like mourning for an only son and the end of it like a bitter day." Amos 8:9-10.

Now, it drives me crazy when people, Christians included, take verses out of context and twist them to fit their agenda. I fully realize that I am doing that here, but I am too mentally and emotionally exhausted to try and contextualize these verses. All I know is that I turned to the Bible for comfort, and this is what I got.

Today was my six-week post-c-section appointment. I should have known that I would see many pregnant women in an OB's waiting room, but I didn't think about it until I got there and was literally surrounded by them. There was also a chubby, healthy baby boy whose mother was literally dancing and parading him around the room. These are normal things that don't even cross one's mind until experiencing the death of a child. Fortunately, my OB (first appointment with her) was very sympathetic, understanding as she could be, and patient.

I lost my watch when Weston was born. I had to take off all jewelry for my c-section, and I don't know what happened to it. Fortunately, I got my wedding ring back. It's interesting that my watch, of all things, was never recovered; time was of no consequence to me while Weston was in the NICU. It was just about surviving minute to minute.

Now, it's a paradox of time standing still and cruelly marching on. I haven't replaced my watch; in its place I now wear a black rubber bracelet that says "In Mourning." Time doesn't matter to me anymore without having my son here.

On the other hand, time takes me further and further from him. It's the little things: his smell has faded from the sweater I was wearing when he died (I will still never wash it again). When I scroll down through my blog posts, the post about his death is not on the first page anymore. The NICU doesn't pop up on my recent phone calls. Caroline turned three years old last week; she was two when he was born and died. I turn 35 in a few days. School has started. Although Caroline is not in school, it signifies another transition.

I will try to end on a positive note: although nothing makes me excited anymore, including our two-week trip to the beach that starts tomorrow, we are going to a concert tonight to hear one of my favorite bands (Old 97s, in case anyone is curious). Thankfully, their music is loud and raucous, not quiet and introspective. Hopefully I'll have a tiny bit of fun.

"Where he should be, I stare straight through...It won't stop; it keeps on going, unforgiving, unrelenting...There's nothing I can do to make it stop. Farther back and farther yet, back into the dimming past. The gap begins to gape.
Is there no one who can slow it down, make it stop, turn it back? Must we all be swept forever on, away, beyond, beauty lost, and love, sorrow hard on sorrow, until the measure of our losses has been filled?"
Nicholas Wolterstorff, Lament for a Son

Friends

Medicine and psychology have long touted the benefits of having friends. Good friends help us live longer, lower our stress levels, make us happier, and impart many other benefits that I don't feel like googling right now. My family has been indescribably supportive throughout our entire journey with Weston, which, frankly, I expected. I am incredibly fortunate to have a tight-knit, loving family; we would do anything for each other. That is not true with every family, so I know how fortunate I am.

There is also no doubt that God has walked this journey with me. That is something that I knew intellectually, but I truly felt God's presence in my heart and soul many times. I have to be completely honest and say that those moments are fewer since Weston died, probably because I have not been seeking them out as much. I am a little angry. Thankfully, God knows I am angry and loves me anyway. He will be there waiting for me when I come around.

And friends? Wow. I am blown away. I posted a letter to friends and family that was read at Weston's memorial service, but that was largely discussing the support we had received before Weston died (which was phenomenal). This post is about my friends' support since Weston died. I am humbled by the love I have received and inspired to be a better friend because of it.

First, Karen. She is my oldest and closest friend (oldest in that I have known her longest, not that she is old. But, now that I mention it, she is an entire DAY older than me.) and lives in Seattle. Way back in June, when I was still pregnant and in the hospital, she booked a ticket to come visit the last weekend in July. We joked that, if I stayed pregnant, it would be the most boring visit ever hanging out in my hospital room. It obviously turned out to be the least boring, most tragic weekend of my life.

Karen arrived on a Thursday, and Weston was relatively stable. Friday was a long, hard day for Weston, and I spent most of it at the hospital, so Karen took care of Caroline at home. When I got the call at 6:00 Saturday morning, I woke Karen up and asked her to watch Caroline yet again because we had to take an unexpected trip to the hospital. Within an hour, Weston was dying, and he was dead within another hour. Karen watched Caroline for much of the day and came to the hospital to see Weston one last time.

Karen and I have talked since she went back home. She called and texted me regularly until I finally called her back when I was ready but reserved no judgment regarding the unanswered communications. I had often thought about the uncanny timing of her being here when Weston died, but I hadn't really analyzed it. Well, she had analyzed it and wondered why God orchestrated her being here that weekend, and I think her conclusion is right.

As I have said before, Weston went downhill and died very quickly and unexpectedly. We live 5.64 miles from the hospital. On an early Saturday morning, the drive takes about ten minutes. Add parking and walking through the hospital, and we can get from our house to the NICU in about 15 minutes.

A large team of medical professionals was undertaking full resuscitation efforts to keep Weston alive when we arrived at the hospital, and those efforts were not working. We knew it was time to let him go, but we wanted to keep him alive until Shannon's father could arrive and bless him. Shannon's parents live about 2 miles farther from the hospital than we do, so it was probably a 20-minute door-to-door trip for them. It quickly became clear that 20 minutes was too long, and we desperately wanted Weston to die peacefully in our arms.

If Karen had not been here, the best-case scenario for that morning would have been that only one of us  (probably me) would have been with Weston when he died. Shannon would have had to remain at the house with Caroline until my mother-in-law could arrive to watch her. That would have added an extra ten to fifteen minutes. I would have had to either make the decision to cease resuscitation efforts alone (not acceptable, in my opinion) or call Shannon, who would have to hear the horrible news over the phone and take my word for it that letting him go was the best option.

Worse, if we would have waited together for my mother-in-law to arrive, Weston might have died before we got there. He would have died alone, while undergoing terribly invasive medical procedures. That would have haunted me for the rest of my life.

As I have mentioned before, Shannon and I had unexplainable and immediate clarity that we needed to let Weston go. His death was very peaceful, and there were some beautiful moments in it. I think we truly experienced the peace that passes understanding; how else does one explain moments of beauty in their child's death? If Karen had not been here, his death would have been chaotic and jarring for all three of us.

People talk about how they would do anything for their friends. And, generally, that's what true friends do. But no one ever thinks they will need to ask a friend to babysit their child at home while they go to their dying child. And no one ever thinks that a fun weekend visit will instead make them a witness to the horror of losing a child. That experience takes a friendship to an entirely new level. My words fail to portray the significance and gift of Karen's presence that weekend.

Since then, my friends have continued their support. Here are just a few things people have done:

~sent or delivered incredibly thoughtful gifts (some from folks I have not seen in 10-15 years)

~dragged me out of the house for a drink

~brought a friend to take professional photographs of Weston after he had passed away

~called me just to check in (that is no small thing: it is thoughtful and brave)

~brought dinner

~ran interference when I was not up to seeing people

~sent me funny blog posts to make me laugh

~invited me over to talk and cry...until 1:00 am on a WEEKNIGHT

~listened to me talk about Weston

~cried with me

~were quiet with me

~babysat or offered to babysit Caroline

~took one of their few free afternoons to help me shop for Caroline's birthday

~sent repeated messages without expecting a response, just to let me know they are here

~helped me set up for Caroline's birthday party

~shared their own stories of loss (sadly, there are so many)

~offered the use of their houses, condos, second homes, etc. (one from someone I have never met)

~set up a c-section follow-up appointment with a new OB on short notice and informed the doctor of our loss so I don't have to repeat it

~sent me grief resources, quotes, Bible verses, prayers, kind words, etc.

~made generous donations to the NICU in Weston's name

~came to Caroline's birthday party.

I didn't think much about this last one until just a couple of days before Caroline's birthday. Her party was quite small, which was what we wanted. Almost everyone who came to the party, except the kids, had gone to Weston's memorial service, so they obviously knew about him. Putting myself in their shoes, I would have been petrified to go to a birthday party just four weeks after the host had lost a child. But they came, they brought their kids, they celebrated my wonderful daughter, and I actually found myself genuinely smiling several times.

All of the above people are busy people with full lives, but they have made time to reach out to me. They have shared or elaborated on their losses and struggles with me; regarding their losses and struggles I knew about, I wish I had been a better friend. Obviously, I can't turn back the clock, but I can resolve to be a good, better, best friend in the future. That is my resolution: to take away a tiny amount of hurt, to make things just a tiny bit easier, and to indirectly impart those good old physical and psychological benefits to my friends. And may that circle of friends grow ever wider.

We are never so fit for friendship as when we cease to seek for it, and take ourselves to friend.
~Ralph Waldo Emerson

Dark Humor

Caroline and I went to the library. I had the following conversation with a library employee.

Me: Where are your books on grief?

Employee: Greece?

Me: No, grief.

Long pause

Employee: Can you spell that?

Remember, I am at the LIBRARY.

She shows me the computer screen, where I see other subjects, including death and bereavement. I point to them and tell her those would be helpful too.

She writes down the call number (not the right term, I know: sorry, librarians) of one book that looks to be somewhat on point and tells me that is where the grief books are.

Caroline and I take the elevator to the 5th floor, at which time I use all my mommy tricks to keep quiet in the adult section of the library.

We get to the section the employee told me about, and what do we find? Not a single book on grieving, but more books than I never knew existed with instructions on contacting and communicating with the dead.

Good grief. Forgive the pun.

Irony

Irony: in literature, a manner of organizing a work so as to give full expression to contradictory or complementary impulses, attitudes, etc.

The essential feature of irony is the indirect presentation of a contradiction between an action or expression and the context in which it occurs...Ironic literature exploits, in addition to the rhetorical figure, such devices as character development, situation, and plot to stress the paradoxical nature of reality or the contrast between an ideal and actual condition, set of circumstances, etc., frequently in such a way as to stress the absurdity present in the contradiction between substance and form. Irony differs from sarcasm in greater subtlety and wit.

Source: www.dictionary.com

I obtained a Bachelor of Arts in English before I went to law school. So I wrote a lot of papers in undergrad, mostly literary criticism (law school "papers" were an entirely different animal). I never took a creative writing class. So, I didn't create irony; I analyzed it. Tragically (or ironically, perhaps?), my life is full of irony now. Creativity is not needed. You can't make this stuff up.

Today, August 24, on my daughter's third birthday:

~While celebrating the life of one child, my other child's death certificate came in the mail.

~Consequently, while celebrating the health and vitality of the one child, I was concurrently parsing apart the four conditions listed as contributions to or causes of the death of my other child.

~While cleaning the house, we had to put away one child's memorial items, photographs, and documents in his cedar chest...to make room for a birthday cake and presents for the other child.

Tomorrow, at a child's birthday party, there will be a silent chest of memories in the room that holds the celebration with a single photograph on top. Does anyone dare speak of the still-fresh (always fresh?) tragedy at such a happy occasion? I hope so, because it is my life now.

I smiled and cried for my children all day today. In the context of Weston's death, the ultimate and cruel irony is that life goes on.

You Were There

Dear Weston,
Your life was too short. I never got to hear you cry or laugh, make eye contact with you, or see you smile. I never heard your voice, comforted you when you cried, or helped you walk. There are thousands of things I will miss about not being able to watch you grow up. Dr. Seuss wrote a classic book called "Oh, the Places You'll Go." I had planned to buy you that book and have your NICU family sign it; I was going to give it to you when you graduated high school or college. It breaks my heart that I will never have a chance to give you that book.

I have lived on this earth for almost 35 years and spent many years in school, but you already know so much more than me. Although the Big Bang Theory is widely recognized as the probable origin of the universe, you have the inside scoop on what really happened back then when none of us were around to see it. You know what the bottom of the ocean and all of the other planets look like. You might know why God lets bad things happen to good people. You know what heaven looks like, and you know what God looks like. You have seen Jesus in the flesh. You have met some wonderful people there whom I never had the pleasure of knowing. You might even know why God chose to take you now instead of leave you here with me. That is the biggest, most burning question that I will ask for the rest of my life.

You might know the following already, but I want to tell you about some places you went and things you experienced while you were here on earth. First, before I even knew you were there, you went to trial with me. That might sound a little boring, but it was part of my career, which was very important to me. I might have even encouraged you to follow in my footsteps and be a trial lawyer. If you had ears yet, you probably heard way too much of my voice for those few days.

You were there when I celebrated with my colleagues and said goodbye to them after five wonderful years working for and with them. Sorry about that martini, by the way. I still didn't know you were there yet.

You were there in that joyful moment when I found out you were going to be a part of our family. Your daddy was sleeping, but I woke him up to tell him the wonderful news. At that time, you were about the size of a poppyseed.

I wasn't "supposed" to say anything yet, but you were there during my hushed whispers to family and friends of your joining our family. You were supposed to come around Halloween. I was already scheming about how I was going to squirrel you away in the house and keep you away from all the germs the trick-or-treating kids would bring.

You grew from the size of a poppyseed, to a blueberry, to an olive, to a lime. During that time, you spent a lot of time with your big sister. She talked about you a lot and said hi to you sometimes. You were there when she fed the ducks at the park, when we went to the zoo, to the Children's Museum, to the fountain at the Biltmore, to cheer on your daddy at the end of a multi-day race, and on bike rides.

When you were about the size of an olive, you and I went to New York to see your aunt Natalie, your uncle Aaron, and your cousin Jude. They had just found out that Jude was going to be a big brother, and his little brother or sister is going to arrive just a couple of weeks after you were supposed to get here. Your aunt and I were quite a pair, with our exhaustion and nausea, but we still had so much fun (you and her little peanut are worth it!). We celebrated Jude's second birthday, went to a Broadway show called Godspell, and visited the Cloisters. I hope you felt the celebration of the birthday party, the inspiration of the music, and the serenity of the Cloisters along with me. Family, music, and serenity: we don't need much more than that to be happy!

When you were the size of a plum, we went to Flagstaff, where it was unseasonably cold. You experienced your first and only snow then...in April! You spent some time in Oma's chapel. Your daddy and I had a long conversation up there where we talked about you a lot: we confirmed that your name would be Weston Max Yoder if you were a boy and decided on a name if you were going to be a girl.

You were there at my appointment a few days later, when I got to hear your heart beat for the first time. That was such a happy day for me. It was confirmation that you were there and that you were healthy.

You were there when things turned scary for me at the park. By then you were almost the size of a peach. I was so afraid I was going to lose you that day. You had no idea things were going to become so precarious, and I am grateful for that.

After that day, you and I spent a lot of quiet time alone at home. We read books to your sister and watched her dance to music. You were there when I read a lot of books myself too. I was still hoping you would come into this world at home, so I read some books and watched some documentaries about that. I started planning what your nursery would look like. You grew to the size of an avocado, a mango, a banana. Your daddy's birthday passed, Mother's Day, your daddy and my eighth wedding anniversary. We didn't do much for those occasions because we were trying to keep you safe and healthy.

During that time, I started feeling you move. Because of the location of my placenta (the horrible, cursed thing that failed us four months too early), I could not feel you move very often, even as you got bigger. We moved to the hospital's antenatal unit. We took two trips there, the second beginning on Father's Day. You never left the hospital after that.

You were there, and I could see you, during countless ultrasounds. I loved seeing you, but you weren't too fond of being looked at. Another thing I could see, and feel, was my belly finally starting to grow, even though I wasn't gaining any weight. To me, that was confirmation that you were healthy.

You didn't really like it when my nurses tried to listen to you twice a day either. You would always try to move away. In one sense, I wanted those moments to pass quickly for your sake, to give you peace. But on the other hand, hearing you swish around and hearing your strong, beautiful heartbeat assured me that you were doing fine in there. When everyone was giving up hope for your survival, those sounds gave me hope.

I talked to you so much during the awful hours leading up to your birth. We had had a hard day, and I wanted so badly for you to stay inside me longer. Even now, almost one month after your death, you should still be inside me. I should not have even met you yet.

You don't need me to describe your three weeks living in the NICU; you were there. Those were the best and worst weeks of my life. Actually, in retrospect, the weeks I am living through now are far worse. But they were the best weeks because you were with us; we were a visible family of four. Sweet baby, I know those three weeks were really tough for you. I am so sorry I couldn't do more to comfort you, as mommies are supposed to do.

Tomorrow is your big sister's third birthday. She is so excited, and I am trying to be (she sings Happy Birthday to you almost every day, by the way). I made cupcakes for her party, and they look and taste like hockey pucks, so now I am going to have to make an emergency order of cupcakes from a bakery. I am wondering how in the world I thought I could pull off even a simple little birthday party less than a month after you left us. You should be celebrating her birthday with us; you will never have that chance.

I am in so much pain right now. But, if I could go back in time and make the pain go away, I wouldn't do it, because that would mean that you would have never existed. I have been reading a lot of grief literature lately, and one person said that we grieve because we love. We are in pain because we love. That is so true: my immense pain comes from my even more immense love for you. And I would rather love you forever accompanied by pain than never have loved you at all. You are worth it, and you will always be here with me in my heart and soul.

With immeasurable love forever,
Mommy

Beginnings

This is the post where I tell Weston's birth story. For those of you still reading after that last sentence, I have put this one off for a long time. While Weston was alive, I only had time to tell our pre-birth story here and there between many more posts of real-time medical updates. This will be the last of the pre-birth story, and then there will be no more "Era of Hope" (pre-death) facts to tell. I made that up just now, and it seems fitting with my mood tonight. There are no words to describe or label our dashed hopes after Weston's death, so I'll just borrow a phrase from our good friend Dante: "Abandon hope all ye who enter here." It's not completely on point, but it'll do. I know Era of Hope is beyond cheesy, but the creative juices are low tonight.

Tonight, Shannon and I sanded Weston's cedar chest on the back porch. It was raining, and I was playing my Weston playlist. It was nice being quiet together, but sanding the chest was one of those activities that no husband and wife should ever ever ever have to do together. Shannon went back inside, and I went and stood in the rain for a while. I am a little prim and proper about certain things, so standing in the rain is not something I have ever done voluntarily. Except maybe back in the day due to excessive alcohol consumption, when I was decidedly less prim and proper. Anyway...I love Phoenix rainstorms, partly because they are so rare, but also because there is something hauntingly beautiful about rain the desert. We had a lot of lightning too. I found myself studying the sky and wondering what is really up there. I've never had the occasion to wonder about heaven so much. Now I'm more curious about Weston's new home.

So, back to earth, and Weston's birth story...

July 6, 2012 was a big day: I was 24 weeks pregnant, which meant that the baby was officially viable! I had joked that I would have a party in my hospital room if I made it to 24 weeks still pregnant. The steroid shots I had received to help Weston's lung development became fully effective at about 9:30 that morning. Dr. G did his morning rounds, as usual, and we were all very happy.

The night before I had had an episode of shortness of breath. It only lasted for a minute or two, but it was weird. Early on the morning of July 6, before Dr. G arrived, I felt some chest pain and left arm heaviness. It was also very minor. Blood clots are a big concern for patients on bed rest, so I mentioned my symptoms to Dr. G. He ordered a CT scan, chest x-ray, and Doppler study on my legs to rule out clots.

Now that I was 24 weeks, the frequency of monitoring the baby was going to increase. Up until then, my nurse would find the baby's heartbeat just long enough to get a heart rate once a shift (twice per 24 hours). Starting on that day, the baby's heart rate was going to be monitored 30 consecutive minutes per shift. Now that the baby was viable, they wanted to watch him more closely in case they needed to do an emergency delivery to save him. Before 24 weeks, there is virtually no chance of a baby being born alive, so they only worry about the mother, as I've said. So they don't bother with the more frequent monitoring.

Dr. G left, and my nurse came in to give me my pills. After she left, Dr. G came back, which surprised me. He told me about a former patient whose parents he had seen the previous weekend. This patient's water broke at 12 weeks, and I think she had similar placenta problems to mine. She remained on bed rest and made it to 30 weeks before she had her baby girl (that is a miracle). Lung development is a huge concern when there is no amniotic fluid. This baby girl had some lung struggles, went to Phoenix Children's Hospital for an experimental procedure, and went home healthy. Dr. G made it clear that this story was an outlier, but he was cautiously optimistic for a similar outcome with me. I was ecstatic.

A friend was planning to bring me lunch that day, and I was worried that all the extra tests would interfere with her visit. I wasn't too concerned that I had a blood clot, but I was worried about being carted all over the hospital and all the radiation.

Mid-morning, I went for my chest x-ray. I was so scared, and I still can't really pinpoint the source of my fear. Maybe it was because I felt so helpless. I was wheeled to another part of the hospital and pushed past door after door marked "Radiation! You will die if you go in here!" or something like that. The chest x-ray itself was not too bad, and I was taken back up to my room afterward.

My friend, M, arrived a couple of hours later with lunch and some other goodies. Her husband, J, works at the hospital and brought her to my room, so I got to chat with him for a few minutes too. I hadn't seen her in a long time, so I was anxious to catch up. Of course, they arrived to take me for my CT scan about 15 minutes after M got there. So, M had to leave, and I had to go to the emergency room for my CT scan, which is pretty far from the antenatal unit where I was living.

Before my CT, I had gotten stuck with another needle. They needed an IV for the CT scan, and this one was on my forearm, instead of my hand or inside of my elbow. I hate needles, and it hurt. I was anxious about the radiation and just the whole procedure in general. When I got down there, the radiology technician didn't like my IV and had to start ANOTHER one. I was so scared I was shaking, and the technician actually said, "You're really scared of this, aren't you, honey?" This guy was my age, not an old man, so I must have been a sight for him to call me honey. Then they put me in this circular machine that makes a loud noise. The contrast solution goes through the IV and into my body, so they can see the results more clearly. The contrast coursing through my veins felt like my body was on fire. It was awful.

Thankfully, they were able to do the Doppler immediately afterward, and it was relatively painless. Finally, I was taken back up to my room so I could rest. I was physically and emotionally drained, and starving. I had been gone over two hours. M had brought a giant salad with chicken from Oreganos. I wolfed it down quickly and laid down. My nurse also came in to do the 30-minute fetal monitoring.

About thirty minutes later, I began having excruciating pain in my abdomen. It was not contractions or cramping. I had had a similar episode when I was pregnant with Caroline, and it hurt so badly that I went to the hospital. Everything was fine, but they never figured out what it was. It went away by itself, and my OB and I guessed that it was trapped gas. Because I had laid down immediately after eating my salad (something they tell us not to do on bed rest, because sitting up helps our food digest), I just figured it was gas like the last time and would go away.

But it didn't go away. The pain was unbearable and began shooting down my leg a bit. Then it went into my back. I waited a few minutes, hoping it would subside (it was just gas, after all!), and it didn't, so I called my nurse. She came to my room with a concerned look, hooked me back up to the fetal monitoring device, and called the doctor.

Then, everyone was in my room, and they were all very concerned. I was mad at myself for getting everyone worked up about a little gas. I told them all about the gas episode with Caroline, and everyone ignored me. The furor was causing anxiety with me, which I knew was affecting the baby. The doctor wanted to do a vaginal exam (always pleasant), so I let him because I was a little concerned too. He said I was not in labor but that my uterus was very irritated. Of course it was irritated; I had been bleeding for three months! And I think I would know if I was in labor, dumb asses! I was getting more and more anxious by the minute. As if they couldn't sense my anxiety, I told them that my day had been awful, which was probably affecting my entire body and the baby, so could they please just leave me alone?!

After about an hour, the abdominal pain gradually subsided. A little while later, my nurse came back and said something I absolutely did not expect: I was being moved to the perinatal high risk unit for constant monitoring. I was devastated. This room had become like my home. I just knew that I would only be gone a few hours and that I would lose this prime real estate of a hospital room when I returned. More importantly, I knew and loved all my nurses. And most obviously, to no one but me, the baby and I were fine! There was no need to go to the high-risk unit!

Since everyone following this blog knows the eventual outcome of this story (and let me remind you that Weston's birthday was July 7), you know the obvious: I was in SERIOUS denial.

This has been difficult to rehash. It underscores the difficulty of, not only Weston's entire life, but the way in which he entered this world as well. He and I were incredibly cheated out of a joyful, peaceful birth and all of the cuddling that goes with it.

For the above reason, and the fact that this post is already pretty long, and because I'm still not ready to stop blogging about the Era of Hope, see paragraph 1 (lawyer friends: I almost wrote supra), I am ending this post now. I will finish Weston's birth story in the next few days.

Stuff

Ever since I became a mother, I have been more conscious of "stuff." It started when I was pregnant with Caroline when I realized that we had already filled up our four-bedroom house with crap. And there were only two of us! One bedroom was more of a receptacle for random furniture and other stuff that we didn't really use, and that room had to become Caroline's nursery. Then, I made my first trip to Babies r Us. Let me just warn all you folks who have not started your parenting journeys: Babies r Us will scare the crap out of you the first time you go there.

After Caroline arrived, and grew, and played with toys, and kept growing, and acquired more toys, I realized we we needed to draw the line somewhere or our house would start to resemble a daycare center. Not that there's anything wrong with that. We wanted fewer quality toys that Caroline would actually play with, rather than truckloads of poor-quality things that would just break or wear out. So we started purging.

This urge to purge carried over into other areas of our lives as well. I got rid of a lot of clothes, canceled magazine subscriptions, tried to cook more, etc. We still have not tackled the garage, but by the time I found out I was pregnant with Weston, the whole house was fairly clutter-free, except for Weston's would-be closet. His room was still a guest room, so we were going to need to sell the queen-sized bed as well in order to convert the guest room into a nursery.

I had been trying to buy less stuff as well. It's better for our budget, easier on the environment, and healthier for my soul to not be so attached to inanimate objects and/or shopping. I also figured that two kids would destroy all that stuff anyway. With all of Caroline's big-ticket items being gender-neutral, we wouldn't even have had to go shopping for baby stuff (except the dreaded double-jogging stroller), and I know enough families with little boys that we would have enough boy clothes to get by for a while.

Our house was robbed four years ago, and I completely freaked out. I had a panic attack when I went back to work. It's embarrassing to think about now. We had an alarm system installed immediately, and I developed new and paranoid habits that I will continue forever. Our house was not damaged at all, but our electronics and some other things were stolen. We lost all of our music and photographs, because our computer, iPods, and cameras were stolen, which was awful. Although I felt incredibly violated, I was relieved that it was just stuff: no one was hurt. That helped me to appreciate the ephemeral nature of material items (but not ephemeral in the environmental sense, of course).

So, in five paragraphs, there is a highly-abbreviated synopsis of my newly-evolved philosophy on clutter, consumerism, and stuff. Until now.

Weston is gone. That guest room intended for him will never be his nursery. He will never sit in the high chair, or in the booster seat currently being used by his big sister, or in a chair at the table. He will never sit in the bouncy seat, swing in the baby swing, or lie on the floor under the play gym. He will never need the changing table. He will never have a little tricycle or bicycle taking up space in the garage, and he will never sit in the carseat and take up space in the car. He will never ride in the stroller. We do not need a double stroller now. I will never carry him in the baby carrier. He will never need the infant bathtub. He will never sleep in the crib or be rocked to sleep by me or his daddy in the glider. Weston will never take up space in our house. I haven't really grasped that fact yet; it hurts too much.

Since Weston's death, I have been obsessed with hanging onto every item that has anything to do with him. The hospital did a wonderful job of giving us everything I never knew I wanted, like his leg and back rolls and his eye mask that he wore when he was under the bili-lights. I will keep it all forever, and we have stacks and stacks of his stuff on the dining room table. I now have this obsession of tracking, photographing, and describing in detail every item that was either a part of Weston's life or an item we have now by which to remember him. I'm trying to do it elsewhere, so this blog doesn't become a total snooze-fest. But all of this stuff is not enough. I want more.

We have so many beautiful pictures to choose from, and we will frame many of them. I used to say I would feel sorry for our second-born child, because we would not be able to hang nearly as many pictures of him/her as Caroline. We have already used up a lot of wall space with pictures of her. But I no longer feel that way. Weston will be made larger than life in our home, because he doesn't get to have a life of his own. So there will be pictures, pictures, pictures.

Yesterday we found a high-quality, solid cedar chest for Weston's things at an antique store. We will have to paint it, but I have great ideas for it. It will be beautiful, and we will keep it in the family room where we can see it and look through it all the time. But putting things in there will be difficult, like I am relegating my only son to a box.

I already have my beautiful necklace with his ashes in it, but I want something with his birthstone (July ruby). And a necklace with his actual hand or footprint on it, like this. And a picture with his name written in the sand from here. And a tulle butterfly from here (but I have to make it-yikes!). And a Christmas stocking and tree ornament. And on and on and on...

We went to pick up Weston's ashes from the funeral home last week and were told they were in a cardboard box. We are leaving town for two weeks, and I had this horrible vision of our house burning down and the ashes burning with it. So the funeral home still has most of the ashes, except the small amount in my necklace and the other in Caroline's teddy bear.

Speaking of burning houses, if you had asked me a year ago what three items I would rescue from my burning home, I would have been hard-pressed to give an answer. As long as my family was safe, I didn't care what I lost. But now, I could never pick three things. How could I reduce Weston's existence to only three things?

I have a DVD copy of the slide show played at Weston's memorial service. But I can't figure out how to copy it to my iMac computer. Some stupid piracy thing. (If anyone can help me with this, please contact me! I am dumber than dumb when it comes to computers.) I am petrified that our house will be robbed again, or burn down, or our computer will crash, and we will have lost those things forever. I have even wondered briefly if we should have buried Weston instead of having him cremated. At least we couldn't lose his burial plot like we could lose the ashes.

It's silly and paranoid, I know. Weston has my heart, and no one or nothing can take that from me. And when we are reunited someday, I won't need any of this stuff because I will finally be with my baby again. Looking for that blessed hope...

Rolland Henderson

About a week after Weston died, Shannon and I had the privilege of paying tribute to baby Rolland Henderson, who passed away the day after Weston. I have held Rolland and his family close to my heart since before he was born. Attendees were invited to speak at the service, but, although I am used to public speaking, I didn't because I'm just too emotional. Right now I do better pouring out my heart behind a computer screen, so here it is.

Until now, I have referred to Rolland as Baby R. His mom is Danielle, aka D. D and I went to high school together, but we only knew each other casually. Yes, it's a small world, and read on; it's about to get smaller.

Enter Facebook and our subsequent parallel journeys. Through Facebook, I learned that we were both on bed rest and due around the same time. One day, while lying in my hospital bed, I saw that D had "checked in" at St. Joseph's Hospital, and I just about fell out of my bed (that would not have been good for Weston or me). I sent her a message and let her know I was there too, and did she want a visit? Rolland was born very soon after that, so I didn't hear from her for a while.

D posted several photos and videos of Rolland that I saw before Weston was born. He was a perfect, precious little baby. There was a video of Steven, her husband, changing his diaper: just normal parenting things. Seeing those photos and videos took away so much fear of the unknown NICU.

I first saw D, and met Steven in the NICU a few days after Weston was born. Rolland was in the pod adjacent to Weston's, so we were within each other's sight. Over the next few weeks, we formed a bond unique to those having stressful experiences together.

D had, and has, an inspiring confidence about her. When she brought me over to meet Rolland, he was having a brady episode (precipitous drop in heart rate). While I might have hung back and let the nurses work their magic, D flung open the armholes to Rolland's incubator and dove right in.

Rolland was born 11 days before Weston, also within days after the critical 24-week mark. They both had relatively long "honeymoon periods," with serious problems not cropping up for about two weeks. So, because Rolland was a little older, his challenges began earlier than Weston's. They even had similar lung problems.

Weston's two-week birthday was a particularly hard day for us, and I will never forget D's kindness and selflessness that day. That was the day we got the diagnosis of the chronic lung disease and pulmonary interstitial emphysema (PIE), which Rolland also experienced. I spent most of the day crying and pacing in the NICU. I noticed that there was a lot of activity around Rolland's incubator as well. Lots of activity around a baby is almost never a good thing, so I surmised that things were not going well over there either.

NICU parents cannot freely visit other babies/families. No more than two people at a time may visit a baby, with the exception of parents bringing in a sibling, and visitors must always be accompanied by one of the parents. So I couldn't just walk over and see what was going on with Rolland, and vice versa.

The four of us left at the same time that evening because the NICU closed down for a procedure for Rolland, so I knew things were very serious with him. D was upset and stressed, so I just gave her a silent half hug (words are often superfluous at such times, I have learned), and we all parted ways. A couple hours later, D texted me wanting to know how I was doing. I was shocked, and very touched, that she was even able to think about someone else when she was having such a hard time.

Death is a very hard thing to face while your baby is in the NICU. Parents of NICU babies have to hold onto hope; it's one of the few things that keeps us going. You always know in the back of your head that death is a possible outcome, but you just cannot think about it. Witnessing another death in the NICU just hits too close to home. So, it was no small thing that D came to see Weston after he had passed away. I will never forget her strength and kind words on the worst day of my life. I believe that Rolland paved the way for our babies' entire lives, except in death, when Weston went first.

So, back to Rolland's memorial service. It was such a beautiful and uplifting celebration of life, starting with the attire. Instead of the traditional black, D wore a light blue dress and and matching Jackie O-type hat with flowers (she looked beautiful). The service was highly personal with lots of laughter and tears. D and Steven both spoke (D is a gifted writer, by the way), with beautiful words to their beloved son, God, and family and friends. Continuing with their selflessness, they mentioned our family and Weston. D even kept asking if I was OK! The service concluded with a balloon release to honor Rolland. The service was held at the hospital chapel, so many folks from the NICU staff attended (great idea).

Rolland taught his family, and everyone who knew of him, about love. We heard story after story from individuals whom Rolland touched. Rolland reminded me that, above all, he and Weston taught people to love and be loved. The often-quoted verse comes to mind: "And now these three remain: faith, hope, and love. But the greatest of these is love." While there was so much faith and hope wrapped up in these precious boys as they fought for their lives in the NICU, love is what will carry us through as we wait to be reunited with our babies someday.

Rolland also reminded me that love overcomes fear. I have experienced enough fear for a lifetime over these past several months, and certain fears continue even now. But if I think about all the love that exists for my son, the fear just goes away.

Finally, Rolland and his family taught me that people need each other. Rugged individualism is the American way, but when parents experience the unthinkable, as the four of us have, we desperately need each other to laugh, cry, and remember with.

D's mother, Colleen, read a beautiful quote at the service that I just have to share:

I believe that imagination is stronger than knowledge; myth is more potent than history; dreams are more powerful than facts; hope always triumphs over experience; laughter is the cure for grief; love is stronger than death.

Beloved baby boys, help us always to live by these words! Rolland, thank you for opening up my world and reminding me of the power of love and the importance of friendship. I hope you and Weston are taking good care of each other up there, while we parents take care of each other down here.

”

Weston's Final Hours

How Weston spent his last night has been weighing on my heart for a while. I had spent much of Friday at the hospital and said good night to Weston around dinnertime. I called D, his nighttime nurse, around 9:30 pm, and Weston was doing well. Between then and 6:00 am on Saturday, I don't know what happened. We asked for the staff to stop resuscitation efforts shortly after 7:00 am when we arrived at the hospital, and Weston passed away soon after that.

Was he lonely? Was he in pain? Was he scared? Did he miss his mommy and daddy? These are things I have been wondering, in addition to playing the "if only" game with myself: if I had known that night was going to be his last, I would have been there every minute.

These thoughts were compounded by my rediscovery of a song (yes, we're talking about music again!) called "He's My Son" by Mark Schultz. Google the lyrics if you want to really cry. The song is written from the perspective of a father whose son is terminally ill. He and the boy's mother have done all they could for their son, and they are asking God to do the rest. I thought that, if only-here we go again-I had known of this song or that Weston was not going to make it, I could have prayed this song for him. The lines that really got me were, "He's so tired and he's scared; Let him know that You're there."

I thought about this song a lot today. This morning I was a complete mess, worse than yesterday, if that's even possible. But I know that some of you were praying for me today, and I felt those prayers as the day went on. Thank you.

Mother's intuition is a powerful thing. When I got the call from the hospital the morning that Weston died, I was told that it was not an emergency and that I could take my time getting to the hospital. But, somehow I just knew this was it. That has to be the only explanation for my deliberately grabbing his little hats that he certainly would not have been able to wear as long as he was in the isolette. This feeling was multiplied tenfold when Shannon and I arrived to see our son being kept alive artificially and knowing within five minutes that it was time to let him go, and go peacefully. We just knew.

So, as I thought through this today, I realized that I need to continue to trust my mother's intuition. I slept soundly that night. I didn't even wake up to pump, which was unintentional. If Weston had been in pain or scared or close to death during the night, I would have known. I am confident of that now.

Then I thought about the prayer in the song: "Let him know that You're there." Because I couldn't be with Weston until the end, God made up for it. Just because I didn't know to pray that prayer for Weston that night doesn't mean that God didn't comfort my son.

My thoughts were further confirmed by something I read tonight. Shannon and I actually went on a date. We tried a new Mexican food place (Barrio Queen in Scottsdale-it was excellent) and then went to Barnes and Noble. Of course, I chose to read about children dying. The book I was looking at was written by Elisabeth Kubler-Ross, M.D., an expert on death and dying. This particular book was about children, and she said the following: "...God who creates us all compensates the little ones as they fail physically. They become stronger in inner wisdom and intuitive knowledge."

When God was comforting Weston when I wasn't there on his final night, I believe he gave these gifts to Weston. I hope the gifts included extra knowledge of my love, but I have to conclude that, whatever they were, they were what Weston needed at that time.

The book goes on to say, "Remember that God sends to none of his children more than they can cope with." This is a saying that is thrown around a lot, and I have even applied it to myself during this struggle. But I never thought to apply it to Weston. God shows mercy on the smallest of us as well.

This realization is bringing me closer to scheduling an appointment to read Weston's medical records and talk to the nurses about his last night. We are leaving town again in ten days, and I think I want to learn these details before we leave.

I know that Weston is neither experiencing nor privy to the hell that I am going through right now. I know he is feeling nothing but love. And I know he does not remember any of his painful times here on earth. That is a comfort to me. But, being human and still stuck on earth without him, it also gives me great solace to know that God comforted my child on earth too, far more than I ever could.

P.S. Today something wonderful happened: Weston's milk was given to a family that is adopting a baby soon. I had wanted to give his milk away, rather than donate it to a milk bank, because donor milk is prohibitively expensive when purchased through a milk bank. And some wonderful people made it happen. His legacy will help feed another baby. I am so grateful for that.

Screaming

What a day. I AM LOSING IT. My only consolation is what I heard over and over at Thursday night's support group: we are not crazy. We are just people who have had to bury our children; we are allowed to feel whatever we want. Right now I am just screaming on the inside. I can't even cry.

I was hoping yesterday would be better. Thursday was hard was hard. Before Thursday, I had been in a pattern of hard days alternated with bearable days. Yesterday should have been a bearable day. But it wasn't. It was beyond hard. If I capture these feelings, I guess I can look back on yesterday and tell myself, "Well, at least you're doing better than that day." God help me if things get worse than this.

Today (it's just after midnight) is a significant day: three weeks since Weston died and six weeks since he was born. After today, he will have been dead longer than he was alive. Physically, it's significant for me because I am officially cleared to exercise, pick up Caroline, and do everything I wasn't allowed to do on bed rest and post-c-section: one step further removed from the beauty and trauma of the last several months.

I have cheated a bit: I have picked up Caroline several times starting a couple of days ago, and we walked for almost an hour yesterday morning. This is an example of my divided life: today's six week mark is finally supposed to make me a "normal," full-capacity mommy to Caroline again. I have waited for this for so long. Caroline and I are so happy with our resumed unlimited cuddling (as much of that as one can get with an active toddler, anyway!).

My body is doing funny things. Possible TMI alert: I stopped lactating a couple of weeks ago, but I have felt milk letdowns during especially emotional moments these last couple of days. That has never happened before in my life.

Yesterday started out nicely enough. As I mentioned, Caroline and I went on a walk. It was actually cool enough, although we were both very hot and sweaty within about five minutes. But even this was a big deal: the last time I pushed Caroline in the jogging stroller, we went to the park where I started bleeding and this whole nightmare started. Yesterday, Caroline asked me if I was going to push her on the swings. I really don't know how I will ever go to that park again, which is a shame, because it is a great park that is really close to our house, and Caroline loves it. But Caroline decided she wanted to jog, in her flip-flops, and did so for almost half a mile, actually! She is the cutest.

Yesterday afternoon, we went back to the funeral home to have Weston's ashes put in my necklace and Caroline's teddy bear. I was distracted most of the time because Caroline was being very toddler-ish, which was good, as I was pretty apprehensive about the ashes. The director left the room to put in the ashes, so I didn't actually see him transfer the ashes, but I did look at them before we put the baggie in the teddy bear. There were more than I thought: at least a tablespoon. And there are quite a bit more still that we are saving for the urn. That made me happy somehow: that there is more physical substance to Weston than I had expected.

I was fine until we left, and then I got emotional thinking about how we are physically carrying Weston with us now. And how unfair it is that I have to carry him in a necklace and a stupid angel teddy bear instead of in my arms.

We went to Walgreen's and then Starbucks. I was doing OK, but my mind was wandering. This is where I started to feel God with me, which I desperately need right now. People usually say God spoke to them via a Bible verse, a Christian song, etc. I have had plenty of those experiences, but not lately. God is making his presence known in pretty unconventional ways these days.

First: as we were waiting in line at Starbucks, the song "Hallelujah" (the k.d. lang one) popped in my head. I first heard and fell in love with the Jeff Buckley version of this song. I thought I should put a Weston playlist together, and I would put that song on it. A few minutes later, the original "Hallelujah" (Leonard Cohen) came on at Starbucks. Whoa. Later I googled the song lyrics; they talk about Kind David from the Bible. The significance of that to me is that King David also lost an infant son.

Next: Weston's middle name is Max. My grandpa's name is Max. My late uncle, who preceded Weston in death by 40 years and 2 days, is named Max. But Caroline doesn't know any of these people by Max. Her brother is "Baby Weston." Sitting in there in Starbucks, out of nowhere Caroline asked me, "Where's Max?" I was really struck by this. A few minutes later, I asked her who she thought Max was. She said, "Max is Jesus." Soooo, maybe I was stretching it a bit by thinking it was some profound thing.

Then: my car battery died. AGAIN. This happened the other day, at Target in 118-degree heat. We took the car to the dealership, and they changed the battery. We got the car back on Wednesday, so yesterday's dead battery tells me there is something else wrong with our relatively new car. I had to take Caroline out of the car and back into Starbucks. I was SO ANGRY, Caroline was getting antsy, I was googling car part stores on my phone, and I was beyond frazzled.

There was a younger guy, probably in his mid-20s, sitting next to me in Starbucks. He had several glasses of water, and Caroline just helped herself to one of them. Now, most 20-ish guys I have seen do not pay any attention to my daughter, as cute as she is. I'm not trying to stereotype: it's just been my experience in the last three years. This guy just laughed, said kids can do whatever they want, and that kindness is good for the body and soul. So, I was relieved that my daughter would at least not piss this guy off.

He then mentioned something about using the wi-fi at Starbucks because he had too many crystals at home; the energy was too great, so it kept messing with his Internet. Definitely not my thing, but whatever. He gave my kid water on a hot day, so I thought he was a good guy. We commiserated over car troubles, and that was that.

Shannon arrived to jump my car, so I took Caroline outside and went back in to get a drink for Shannon. I sat back down to wait for it, and the guy asked me about my car again. He said something about it being a weird day; the energy was off, something about out-of-body experiences, etc. He asked if this kind of thing happens to me a lot. I wasn't quite sure what he meant by any of that, but I said something like, "It's just part of life."

Then, he said that when things like this happen, someone or something is usually trying to get our attention. I don't even know what else he said because I just lost it. He asked if I was laughing (I was trying to hide my face), and I choked out that, NO, we had been on our way home from getting my son's ashes. Poor guy. Look what he walked into by just being nice.

So he took this stone from his pocket and told me to hold it. Now, I am not into New Age or healing crystals or that stuff at all, but I took the stone and held onto it for dear life. I just yelled at Jesus in my head. I don't know what I said, probably something along the lines of, "Take this pain away from me NOW!"

I finally calmed down, and the guy explained some things about chakras, healing energy, the properties of the stone he had given me, I don't even know. All I know is that a perfect stranger exhibited kindness to my daughter and me during a time when I desperately needed (NEED) it. I tried to give the stone back, and he told me to keep it, that I need it. So, although I think God will sustain me, rather than a stone, I will keep it as a reminder of his kindness and generosity. There is no doubt in my mind that God directed my path, my car breakdown, my Starbucks pit stop yesterday.

So, be kind: you never know what that person next to you in Starbucks is going through. Conversely, even if the person next to you is different from you, give them a chance: basic kindness and decency, not to mention the loss of a child, transcend all differences.

Pictures!

Here he is: Weston Max Yoder, my pride and joy. These pictures were taken a few hours after he passed away.

Is he not perfect?

Mail and Support Groups

Today was an intense day. I'm rounding out my first week of "normal" life, and I'm glad it's almost over so I can have Shannon around for the weekend. Will I feel this way at the end of every week??

The days have alternated between hard and not-so-hard. The battery in my almost-new car died the other day (at Target when it was 118 degrees), so that was chaotic, but it was also very nice to be distracted from missing Weston so much. Yesterday I was distracted with trying to plan our upcoming trip and Caroline's third birthday. So I was due for a hard day today.

I dragged Caroline to Starbucks this morning to meet a childhood friend whom I had not seen in years. I have been hearing from childhood friends quite a bit, and it is very comforting to hear from/talk to/see people from a simpler, more carefree time in my life. She and her family gave us a beautiful gift to celebrate Weston.

Getting the mail was quite something today. Thankfully, it came in spurts. First, two packages appeared on the front doorstep. The first was Weston's quilt. Many weeks ago I posted that my sister was going to have a prayer quilt made for Weston. It was going to be draped over his isolette in the NICU to block out the light and the noise so he could sleep and grow; he was literally going to be covered in prayers. Many of you sent squares for the quilt, along with words of hope and encouragement for Weston to stay healthy and keep growing.

I won't sugarcoat it; it was quite difficult to read those notes from a time when we were all so full of hope. But it warms my heart to no end to read the stories behind your squares and see an affirmation of how much Weston matters to so many people. The quilt is so beautiful. I am incredibly, incredibly moved by the love and thoughtfulness that went into it.

There have many moments this week of which I am not proud, particularly parenting moments. This afternoon I had another. I gave Caroline a grape popsicle after her nap. Then the quilt came. You already know where this is going, don't you? Caroline was sitting in my lap. When the inevitable dropping of the popsicle on the quilt happened, I jumped up, displaced her from my lap, yelled a four-letter word, and ran off to the kitchen with the quilt to blot out the stain. Meanwhile, Caroline was stuck in the home office with a popsicle piece in her hand, screaming that it hurts because it's cold. I'm pretty sure she was referring to my cold heart, not her cold hand.

About the quilt, the stain mostly came out. I'm telling myself that Weston would have trashed it anyway, and I'd rather have a quilt worn out by love and use. To a point. About Caroline, well, I really need to get it together for her.

We ordered various keepsake urns for Weston's ashes. The second box on the doorstep held a teddy bear for Caroline. We will put some of Weston's ashes in it; it is a blue teddy bear with angel wings and, Shannon thinks, creepy eyes. I hope she is not too disappointed when we don't let her play with it!

The third piece of mail (from the mailbox) held my cremation necklace with Weston's initials engraved on it. No, I did not go crazy and get the marijuana leaf. I am going to take the bear and the necklace to the funeral home tomorrow to put the ashes inside. The third urn will take several weeks, so we won't have it for a while. I am so looking forward to having Weston literally close to my heart and with me all the time.

The final piece of mail was notification of a donation in Weston's memory that is quite moving. I can't say anything more about it to respect the privacy of those involved, but I continue to be in awe of the way that Weston is touching lives.

Tonight was...my first support group meeting. It was specifically for parents who have lost children: a horrible club to join. The angel babies/children range in age from more premature than Weston to mid-20s, and the losses occurred from less than three weeks ago (Weston) to ten years ago. The first thing I noticed when I walked in the room (after I had broken down in the lobby) was two women laughing together. I was so relieved to see that I will laugh again. It was so helpful to hear from people who have been there. We cried together, laughed together (yep, I guess I can laugh already), and commiserated together. Although I could barely get the words out, I told the story of Weston's death in greater detail than I had in a while, maybe since this post: http://www.thedividedlife.blogspot.com/2012/07/broken-hearts.html.

Importantly, this nonprofit has resources to help parents with their surviving children. Although Caroline is too young to really understand what happened, and probably too young to remember Weston, she will benefit from this group when she gets a little older. In the meantime, I can learn how to be there for her. I love her beyond measure, and it kills me to know I'm not being the mom she needs right now. I am very eager to learn more about this particular challenge in the grieving process.

Weston lived for such a short time. Many people, including family members, did not get to meet him. My biggest fear is that he will not be remembered, or that his importance will be diminished somehow, in time. I am known as Caroline's mom to the world, but, as someone said tonight, in this group I will always be known as Weston's mom as well. I took a lot of comfort in that statement, and I will hold fast to it, one moment at a time.

Books and Songs

I fully realize that I am posting this story about the beginning of our Park City trip after I have already talked about our last day there, much like I will be posting Weston's birth story after his death story. It's an interesting parallel with the chaos of my life and heart right now. The only concept of time that I have right now is "Before Weston" and "After Weston." Anyway...

I read Edward Abbey's Desert Solitaire in high school and have been fascinated by the desert ever since. Abbey was an environmentalist, conservationist, and desert lover. In the book, he lived and worked alone in Arches National Park and wrote beautifully of his experiences there. The landscape of southern Utah is harsh, desolate, remote, and otherworldly. It is also stunningly beautiful (to me, anyway). The desert forces people to confront the limits of their physical bodies. For me, the harsh environment of the desert also forces a baring of my mind and soul. Just as there is literally no vegetation to hide behind in the desert, there is no hiding from my feelings when I am there.

Before I go any further, let me make something clear. You might be thinking, "Wow, she lives in PHOENIX. If the desert forces her to confront her inner self, she must be SO in touch with her feelings ALL THE TIME." The truth is, we live in central Phoenix, where some very good urban planners/contractors/I don't know who planted a lot of trees back in the 1960s and 70s. We have grass at our house. There is not a cactus in sight in our whole neighborhood (except for one house). Actually, my neighborhood reminds me of the neighborhood in Texas where I grew up. So, I am not forced to confront my feelings on a daily basis. And, before I dig this hole any deeper, Texas friends, or all my friends with grass and trees, please know that I am not saying that you don't confront your feelings either.

So, back to our sojourn through southern Utah. We planned to stay overnight at Bryce Canyon National Park. I ended up driving the last several hours through the northernmost parts of Arizona and southern Utah. Shannon sat in the back seat to entertain Caroline, so I was alone in the front seat. This also meant that I was in control of the music.

Remember, I am way into natural birth. I had a "childbirth" playlist on my iPod for Caroline's birth, and I made another one in my early days of pregnancy with Weston. I filled the playlist with mellow, meaningful music that would help me relax, forget the pain of contractions, and be emotionally present for the birth. While playing the music that I had hoped to play while welcoming my son into the world in October is horribly tragic, I somehow decided the childbirth playlist would be a good thing to listen to while driving through the otherworldliness of southern Utah that forces me to confront my thoughts and emotions.

In addition to the desert (and Junior Mints, and a lot of other things), I have been obsessed with Sarah McLachlan for years. This is old news to some of you (if anyone is still actually reading). Much of her music is mellow, and all of it is emotionally intense, so a lot of it ended up on my childbirth playlist. But it's funny how an album that you know by heart can suddenly take on an entire new meaning. This is what happened to me with one of Sarah's older albums, Fumbling Towards Ecstasy.

There are so many emotions I will have to work through to come to terms with Weston's death. At this point, if I am still and quiet, these emotions threaten to overwhelm me and just make me want to completely retreat from reality...perhaps into desert solitaire, a la Edward Abbey, or "Elsewhere" (see below).

Like poetry (Sarah McLachlan's lyrics ARE poetry), song lyrics can mean different things to different people. In addition to the songs below, the more well-known Sarah McLachlan songs "Angel" and "I Will Remember You" resonate with me as well. According to some, the song "Angel" is about heroin. Just in case you are wondering, I am not thinking about heroin when I think about that song.

So, as I was driving through the deserts of southern Utah (and Abbey the purist would not approve of the driving part), here are just some of the Sarah McLachlan lyrics that took on new meaning to me:

Losing a baby:

Under a blackened sky
Far beyond the glaring streetlights
Sleeping on empty dreams
The vultures lie in wait
...
When all we wanted was the dream
To have and to hold that precious little thing
Like every generation yields
The new born hope unjaded by their years
Pressed up against the glass
I found myself wanting sympathy
But to be consumed again
Oh I know would be the death of me
And there is a love that's inherently given
A kind of blindness offered to appease
And in that light of forbidden joy
Oh I know I won't receive it

-Wait

Wanting escape:

I love the time and in between
The calm inside me
In the space where I can breathe
I believe there is a
Distance I have wandered
To touch upon the years of
Reaching out and reaching in
Holding out holding in
I believe
This is heaven to no one else but me
And I'll defend it as long as I can be
Left here to linger in silence
If I choose to
Would you try to understand
-Elsewhere

And, finally, the most hopeful:

All the fear has left me now
I'm not frightened anymore.
It's my heart that pounds beneath my flesh.
It's my mouth that pushes out this breath
And if I shed a tear I won't cage it.
I won't fear love
And if I feel a rage I won't deny it.
I won't fear love.
-Fumbling Towards Ecstasy

When we got to Bryce Canyon that evening, we saw a rainbow again, like we had on the night Weston died. God gave me peace through most unconventional media that day.

P.S. I cut and pasted some lyrics from another website, and somehow an Obama ad ended up here. You'll see it below if you scroll down far enough. PLEASE BELIEVE ME when I tell you I am not trying to be political here! Although I am not keeping up with the presidential campaign too much these days, I don't really like any politicians right now anyway.

 

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CAOS

As an almost-finalist in the 1990 Coconino County Spelling Bee (until things went awry-ask my mom), let me assure you that there is no misspelling in the blog title. CAOS is the acronym for my eventual diagnosis during my pregnancy with Weston: chronic abruption with oligohydramniosis. This blog post will be really full of personal pregnancy symptoms.

During the first half of my hospital stay, it was just a wait-and-see game. Lie in bed, bleed, stop bleeding, get an ultrasound, lie in bed some more. But, as I approached 22 weeks, things started to get very serious and very scary.

A bleeding pattern emerged over time and eventually settled into a heavier bleed every 3-4 days of about half a day's duration interspersed by periods of lighter bleeding. However, as time went on, the heavier bleeds got heavier and lasted longer, and the "in-between" bleeding got heavier as well. I had to undergo two very uncomfortable and scary vaginal exams.

I had ultrasounds once or twice a week to check on the baby. At one ultrasound (I don't remember when), it was pointed out that my amniotic fluid was low. During pregnancy, the baby is encased in a sac full of amniotic fluid, which provides nourishment and protection from infection for the baby. When your water breaks at the end of your pregnancy, it is actually your amniotic sac breaking. What I didn't know was that amniotic fluid is also crucial for lung and other organ development during pregnancy.

Typically, there should be 12 to 15 centimeters of fluid surrounding the baby. When I first learned about the low fluid, I had slightly less than 6 centimeters. This sounded very low, but I was told that it was not low enough to actually warrant the low fluid diagnosis of oligohydramniosis. That came later. There can be several reasons for low fluid, including leakage, a bad placenta, or kidney problems with the baby. It is very difficult to detect leakage, especially if the mother is bleeding continually, as I was.

I will never forget 21 weeks 6 days and 22 weeks of my pregnancy. At 21 weeks 6 days, I had an ultrasound, but Dr. G insisted on being the one to tell me the results. I knew that was a bad sign immediately. Also, I think I'd had a particularly bad bleeding episode a day or two before that ultrasound. I did know that my fluid was still low, but I didn't know any other specifics. After the ultrasound, my grandparents, mom, and Caroline came to visit. Right as everyone was getting there, my phone rang.

It was my midwife. Against my better judgment, I told her what was going on without asking my family for some privacy. She said that, although this was out of her practice area, she would not be against an amniocentesis if recommended by Dr. G. An amniocentesis is a relatively invasive test that can diagnose many conditions in utero. It is usually recommended to pregnant women over 35, and it carries a small risk of miscarriage. When my midwife brought this up, I immediately thought to myself, "Why would I increase the risk of miscarriage, ever so slight, with such a precarious pregnancy?"

She continued, "Maybe the low fluid signifies some condition that makes your baby incompatible with life. And, you know, you have another child to think about." Oh, so she was suggesting I terminate the pregnancy! And choose one child over the other. Because every woman considering terminating a pregnancy would FIRST put herself through three months of bed rest and then check into the hospital for an undetermined amount of time! This signified to me that everyone was losing hope for my baby's survival. Was I completely crazy for thinking he was fine?

I have no idea how I got through the next few minutes on the phone. I did have my wits about me enough to ask my grandparents to take Caroline in the hall so she wouldn't have to witness her mother having a complete breakdown. And, of course, even though the full anatomy check turned out perfectly, now the thought had been put into my head that my baby had a condition making him incompatible with life. Because an abrupted placenta and low fluid was not enough! Words cannot adequately describe the horror of that night, and I barely slept.

The next morning was even worse. Dr. G broke the news of the ultrasound result: it showed that my fluid levels were continuing to drop, warranting the CAOS diagnosis. The baby's kidneys were fine, and there was no sign that I was leaking fluid, so the culprit was my bad placenta (which was still partially detached, or abrupted). In a nutshell, the placenta was not delivering sufficient nutrients to my baby. There were two possible outcomes: the placenta was going to stop functioning, causing the death of my baby, or my bleeding was going to get so bad that it was going to cause me to go into labor. Although there are drugs that can be administered to stop labor, I was not a candidate for those drugs, because, in Dr. G's words, my uterus would have to be "emptied out" if bleeding caused labor to start. Otherwise, I could die.

This conversation was completed with Dr. G offering a prescription for a sedative "to wait out this very uncomfortable situation" and/or a sleeping pill.

Without a doubt, those were the two darkest days of my pregnancy. In fact, they rank up there with a couple of the darkest days of my life, although Weston's death has been far, far worse. I do not like pills at all, but I did opt for the sedative that day. I desperately needed sleep, and I couldn't have Caroline see me in such a distraught state.

One of my favorite nurses, E, came in later that morning. I could not control my emotions and told her, through many tears, what had happened. Despite everything I had heard, I had a feeling that my baby was ok, and I relayed these feelings to E. His heartbeat was always strong. My belly was getting bigger. Although I couldn't feel him move much (it was still early in the pregnancy, and I had an anterior placenta, which meant that it was on the front of the uterus and buffering any movement from Weston), the nurses could tell he was moving around a lot when they used the Doppler to check his heart beat. I told that to E, and she said, "You need to hang onto that. You can't give up hope; it's the best thing you can give your baby." I tell you, I did hang onto her words over and over. To a large degree, I credit her with preserving my sanity those last couple of weeks.

CAOS is an exceedingly rare condition, so rare that one of my nurses had to Google it. One of the resident physicians told me they only see CAOS once or twice a year, one of the other perinatologists told me that I had the strangest-looking placenta she had ever seen, and Dr. G told me at my post-c-section checkup that CAOS happens in 1 of 2,000-3,000 pregnancies. Lucky me. I refused to do any Internet research on CAOS until after Weston was born. I learned that no one knows what causes it, but that is occurs at a slightly higher rate in lower socioeconomic demographics (probably from poor nutrition and lack of prenatal care) and cocaine users. A lot of good that clean living did me...

I have mentioned previously that I had a natural birth with Caroline. But I knew that Weston's birth would be fraught with fear: a far cry from the joyful occasion of bringing Caroline into the world full-term and after weeks of preparation in my Bradley class. I had prepared and prepared for dealing with the pain of labor in a natural way with Caroline, but I had not had time to do that this time around. However, I knew that my mind and my heart would not be prepared to deal with the physical pain of natural childbirth with the inevitable premature birth of Weston, so I decided, after much internal conflict, that I wanted an epidural. I had always been scared to death of a c-section, so it was out of the question in my mind.

The days ticked by, and Weston and I were hanging on. We made it to 23 weeks, and people became a little more optimistic. I had a pretty bad bleeding episode right at 23 weeks. It scared me, because it lasted almost all weekend. Even after bleeds let up, I would just be waiting for the next one, always wondering if it was going to be the one that started labor.

But Dr. G began talking about delivery. My internal conflict over the epidural went away when he said I would have to have a c-section. A baby as small as Weston and with virtually no amniotic fluid (we were down to 1.5 centimeters) would never survive a vaginal birth. I was actually relieved, because I was so afraid of the birth process with such a small baby. A neonatologist visited me to tell me what to expect with a 24-weeker. The bleeding let up enough that Dr. G even told me I could go home for a few days, but I would need to check back in when I hit 24 weeks. Ultimately, I decided to stay, because I would only have been able to go home for about two days.

I had lost enough blood from the bleeding episodes that I needed an IV infusion of iron. I also had to start wearing compression socks that were hooked up to my bed to prevent blood clots. They didn't hurt but were very annoying, especially when I was trying to sleep. Worst of all, the constant lying in bed produced horrible leg pain. It was worst in the early morning hours after several hours in the same position, and I usually woke up around 4:00 or 5:00 am in excruciating pain. I had a couple of sessions with a physical therapist, which helped. Even though my belly was growing, I was losing weight, and I could actually see the atrophy in my muscles. The bed rest was starting to really affect my body, but I was so relieved that these symptoms were not affecting Weston. I would have put up with all of these inconveniences for as long as necessary.

After the bleeding episode at 23 weeks, the bleeding really tapered off. And we got some great news from the ultrasounds: first, Weston was growing normally. In fact, he measured at the 79th percentile. The next ultrasound, which made Dr. G very happy, showed completely normal blood flow from the placenta to the baby. This ultrasound was done around 23.5 weeks. Dr. G said that, if things continued to go well, he would expect my placenta to finally crap out (my words, not his) around 30-31 weeks. While 30 weeks is still quite early, I was obviously ecstatic to hear that we could make it that far!

With my placenta being so ratty (again, my words), normal growth and normal blood flow was nothing short of miraculous. I attributed it to the fervent prayers of so many people, and I knew God was watching over my baby. I had so much hope and optimism that last week, and we set a new goal of 28 weeks. Weston was born just on the cusp of viability at 24 weeks 1 day (more on that later). The timing of his birth represented hopes dashed and hopes fulfilled...the CAOS was over, but the chaos continued.