It has been months. And I don't write. Not because there isn't anything to say, but because there is too much to say, I've decided. Too much to say and the words aren't easy. So many feelings repeat, repeat, repeat: how can this be? how heartbroken am i not to have miles with me, living the life that he so deserved? how overjoyed am i to have elliott in my life, in my arms at this moment? i am the mother to both of them, my heart is with both of them, and this is now me? For my "new normal" of a world where Miles' spirit is around me and with me as I carry him, it is this with each breath: my love, my tears, my laughter is with my husband, my baby Miles, and my sweet girl Elliott. Always plus one. Still. Always.
So maybe I'm almost done blogging. While my love for my Miles, my joy over his life, my pain for his loss are certainly not fading, maybe my days of writing are fading.
But I need to find the words. And so I will try one line a day.
One line a day. It will be easier, I think. The task of writing just one sentence is surely one I can tackle, I encourage myself. Yet, there it is again: if there's so much to say, the limit of only one line seems impossible. Surely it will only tell part of the story. But that is life at times, isn't it? Sharing snippets, making sense of one bit at a time. And the only way to get the whole story is to put all of them together, a lifetime of them, it seems.
My line today:
Elliott stands while clutching the couch, she laughs, she claps, she plops down to "read" her books, she sucks on all strings she can get her hands on, she takes my breath away and leaves me thinking: the days are long but the years are short.
Showing posts with label Remembering Miles Always. Show all posts
Showing posts with label Remembering Miles Always. Show all posts
Sunday, May 6, 2012
Saturday, January 28, 2012
Happy Birthday, Miles
The day Miles was born was a good day. Two years ago today we got to finally meet the little guy who we had been waiting nine months for. Two years ago. Two years ago.
This photo was taken just a few hours after Miles was born. We had just learned that he had a serious heart defect; we knew he would be having heart surgery in just a few hours. We didn't know we would lose him. We didn't know that we'd be celebrating all his birthdays without him.
He should be here turning two with us today. It will never be right that he's not here for his birthdays. So that sorrow is there, and I won't pretend that it's not. But remembering the day he was born, that's a good thing. His birthday is a good day. The joy of welcoming him to the world and spending four and a half months with him and the joy of having him in our hearts always are all good things to celebrate today.
So today we'll eat angel food cake, read his birth story*, and lovingly admire all of his beautiful photos in his baby book. Happy birthday, Miles.
* * *
*Miles' Birth Story
This photo was taken just a few hours after Miles was born. We had just learned that he had a serious heart defect; we knew he would be having heart surgery in just a few hours. We didn't know we would lose him. We didn't know that we'd be celebrating all his birthdays without him.
He should be here turning two with us today. It will never be right that he's not here for his birthdays. So that sorrow is there, and I won't pretend that it's not. But remembering the day he was born, that's a good thing. His birthday is a good day. The joy of welcoming him to the world and spending four and a half months with him and the joy of having him in our hearts always are all good things to celebrate today.
So today we'll eat angel food cake, read his birth story*, and lovingly admire all of his beautiful photos in his baby book. Happy birthday, Miles.
* * *
*Miles' Birth Story
My bag was packed with Gatorade, a camera, tennis balls, and Norah Jones—the things that were supposed to be the essentials. I had narrowed down our 9-month-awaited-baby’s coming home outfit to three options so those were all in; the teddy bear outfit was my number one, but I worried that it wouldn’t be manly enough for Mitch’s taste. So the giraffe outfit and birdie outfit with matching cap were the macho backups. Everything was in—even the worst-underwear-from-my-drawer that I’d been advised I’d never want to wear again; I had cross-referenced all the things-to-be-sure-to-pack-for-the-hospital lists because that’s what I do.
When my contractions started at 2:30 AM on January 28, 2010, I pulled out my childbirth class notebook. The chart clearly outlined how long each stage of labor and delivery would take, and this was exactly what I wanted—a clear-cut and simple chart for giving birth. Mitch and I had agreed during childbirth class that staying at home as long as possible was the way to go. Mitch had scared me enough with the stories of the patients who come to the hospital way too early and get sent home or just clog-up-the-medical-works.
During class, we had to prioritize which things were most important—I had insisted that being able to walk and being able to get an epidural were my two non-negotiables. Mitch told me that those things didn’t really go together. Sometimes it’s not helpful to be married to a doctor. No matter, I was the one having the baby so I would walk and walk at home and then walk and walk at the hospital until the second I got the epidural. Lovely.
According to my calculations, our baby would be arriving late that night. We had a long road ahead of us that day, and it was best not to think things would move along too quickly. Dr. P agreed when I called her that morning to let her know that this was the day. She was my dream doctor; I fell in love at our first appointment. I knew I was pregnant because I had missed periods and the drug store pregnancy test had confirmed it. Those tests were cheap, though, and could we get some real medical proof please? One nurse had already turned down my request for a real-doctor-supervised pregnancy test. When I asked Dr. P though, she agreed to do it. Unless of course I just wanted to hear the baby’s heart beat for the first time. Yes, please, that would do it. And with that, I had the confirmation that I needed and finally believed that this baby was the real deal holyfield. And icing on the cake: she called Mitch’s phone and left a message with the new little heart beat.
Now, on the day my labor started, my non-stress test was already scheduled for 10:40 that morning at the hospital, and, now that I was in labor that might last a long time, it would be good to know that the baby was doing ok. Lots of women get these NSTs, the doctors told me, way back when I started the weekly routine, as a way to keep an eye on any babies the docs might be worried about. It involved me lifting up my shirt to reveal my ever-growing belly so that sensors could be attached with big-mama seatbelts. I would wear glitter lotion on my belly—to dress the baby up. And the technicians would tell me, well, I’ve never seen that before. Then we listened to the baby’s heartbeat, and I rooted for him to move around, put on a show, and do whatever it was that would keep the docs from worrying. To me, the NSTs were, well, silly. Still, I couldn’t bring myself not to do them, just in case. After weeks of NSTs, this would be my moment of glory. Finally, in addition to checking the baby’s heart rate, my contractions would show up on the monitor as huge mountains. Huge contraction mountains.
Just like for every other appointment during my pregnancy, I walked there; we had to take advantage of the fact that from our living room window all we could see was the space-ship-shaped Dean Dome and, off in the distance, the hospital. So I walked. It took twenty minutes to walk and then twenty minutes to believe I wasn’t even in labor. Oh, yes, I felt those contractions, but somehow they didn’t even show up on the monitor. The technicians were nice about it. They said I could be having contractions even though they didn’t show up. Well, that was good. But then they asked me to go ahead and make an appointment for the next week. So of course I was confused. They thought I would have an appointment in a week, so clearly this wasn’t even labor. I walked home and tried not to dwell on the fact that these contractions—or “pains” as I started to call them since they weren’t classifiable on the stupid machine—were coming faster. It was a bit hard to walk through them now; I was such a weenie, I thought. By then it was noon and Mitch was at home waiting for me. I called to tell him I didn’t want to be alone—in fake labor—and walking around by myself any more. He was there in a flash, and I told him the whole sob story leaning on his shoulder. Once at the apartment, I rested on all fours over a bowl of yogurt and cut up apples. Between pains, I ate bites and explained the pains to Mitch. That sounds like contractions, he insisted. He had the same look on his face as when he woke up in the middle of the night to find me webmd-ing salmonella to make sure I didn’t have it. Not good.
With our kitchen timer, he started timing them. Three minutes apart. One minute long. He called Dr. P to leave a message that it was probably about time for us to come in to get checked.
And then he simultaneously ate his own lunch, timed my contractions, answered my cell phone, and bragged to my brother.
“Yeah, your sister is punching out contractions here…”
Mom arrived with a bag full of goodies—playing cards so we could play spades or war to pass the time. She was prepared for a different version of childbirth, but she changed gears quickly.
“Do you think this is real labor?” I asked from all fours on the floor.
“Yes, and I think you’re further along than you think.”
With that, we all believed it was time to go to the clinic to get checked.
We walked.
In all fairness, it’s not a long walk, and I had made it clear to everyone that walking was my main game plan. I had even written it on my birth plan: walking. Right next to: no mirrors. Plus it was only around 1 pm. We still had hours and hours to go. After all, I was just at the hospital not having contractions.
We made our way to the clinic in two-minute chunks. During contractions, we would stop so I could breathe-it-out.
“We think I’m in labor,” I said to the curious and slightly-concerned moms on the playground as we slowly passed by.
“What if this isn’t it?” I asked mom, nervous that I was being a drama queen in front of too many people now.
“This is it,” mom said.
At the clinic: 7 cm. Well, la-di-da.
Mom ran-walked back to get the car. She drove us back to the apartment to get my bag because, in the frenzy, we didn’t have that stupid bag that had been packed for weeks.
She floored it in her little convertible. I’m pretty sure I even said, “You don’t have to drive that fast.”
And I’m pretty sure she said, “I always drive like this.”
With bag in hand, we were off.
When the next contraction started, I yelled for mom to pull over. She did and I rolled out of the car to huff out a contraction on the sidewalk.
“You have to stay in the car!” Mitch yelled from where he was trapped in the tiny backseat of the convertible. I laugh now when I think of him trying to deal with me at that moment. They don’t teach you how to handle this one in med school or childbirth class.
Still, I refused to sit down.
We negotiated that I could be in the front seat on my knees facing backwards hugging the seat. With such clarity, I could immediately see that this was without-a-doubt the only comfortable position for a laboring woman, so I briefly wondered why I’d never seen another woman going to the hospital like this. Maybe one of those it’s-better-if-they-don’t-know things?
It got us there. With about an hour to spare.
I could only handle the contractions if I was standing and leaning forward with my arms on Mitch’s shoulders. I was loud. I remember that. But I don’t remember the sound exactly. It wasn’t yelling. It wasn’t grunting. I can’t put my finger on it, but the only thing that comes even close is lowing. Painful lowing.
There were lots of directions from Mitch: “You have to sit down.” “You have to breathe.” “You have to put on the hospital gown.” “You have to let them put an IV in.”
My favorite was: “Remember the breathing techniques you learned in class.”
That meant, of course, “I don’t remember the breathing techniques they taught you in class, but let’s hope that you do.”
By the time I followed his advice to put on the hospital gown and sit down:
9 cm. No time for drugs. Later this would make me a superwoman of sorts and a major-hypocrite as well. How could I be joining the group of psycho women I had always either made fun of or severely insulted?
It was so hot in the room that I was sure I would pass out. That had been one of my fears when I thought about childbirth. Stressful times weren’t always my shining moments. I had proven that a good old vasovagal response was in my repertoire twice in the past few years. The more memorable one was when we first moved to Brooklyn for Mitch’s medical rotations. That was the night Mitch woke up yelling every cuss word I know. Charlie horse! I jumped up and ran through our very-tiny-so-how-can-it-possibly-be-this-long apartment to get water. The yelling doubled because so had the pain; Mitch had a Charlie horse in each leg, a physical feat that I didn’t know even existed until that moment. I started running back with the water, and that’s the last thing I remember. Mitch heard the thump of my body hitting the floor. He called my name, and I didn’t respond. So with his double-Charlie-horse-legs, he had to Lieutenant-Dan-style drag himself through the apartment to save me. When I came to, I was sweating and could think of nothing but vomiting and going to the bathroom at the same time. Mitch put me in the bathtub and turned the shower on. Though I can and do laugh now about it, passing out was not a joking matter on this day and was certainly not part of the birth plan.
So I was hot and stressed, opposed to the calm, hydrated, and conscious birthing woman I wanted to be. Mom was wetting paper towels with cool water to put on my forehead. After only a matter of seconds, the water was no longer cool, and I was just lying there with wet-hospital-brand paper towels plastered on my head. I was still hot and now pissed.
“Gatorade,” I said.
Mitch and Dr. P glanced at each other. Later Mitch told me it wasn’t good to drink too much because you could throw it up. But mom was already proving reason number one to have your mom on the birth team by marching right to my bag to bring me the Gatorade. I guzzled most of it before Mitch took it away. And I didn’t pass out.
10 cm.
The contractions and pushing were intense. The time in between critical for recovery and gearing back up. It was physical—like an athletic event, but of a sort without my sneakers and pants—with the breathing, bearing down. And it was emotional—they could see his head. He was coming! And, no, I didn’t want to touch his head with my hands; I could feel it just fine already, thank you very much.
Push through the ring of fire, Dr. P instructed. At the time, it was such good advice. Now, I can’t make sense of it and wonder if that’s actually what she even said.
Such intense pain and then, in a heartbeat, the pain was gone.
Miles Jonathan Mitchell was here. Our sweet Miles. He was perfect. He was ours. We were in love.
Dr. P handed him to me. We held him and took a video that includes me saying something entirely lame that I wish I could blame on drugs and then mostly features the floor and ceiling of the hospital room. We were new parents and it was one of the happiest moments of our lives.
And that was it—childbirth—four and a half months later I would realize, the easiest, least painful part of motherhood for me.
~
That’s how we remember the day. It was perfect. Yet, when I retell bits of it now, I cause an uncomfortable squirm in others or at least a heavy sigh. That’s because they know the rest of the story. Perhaps they believe that the rest of the story changes this day. But, for us, it doesn’t.
Tuesday, September 20, 2011
A toast can be so much more than a toast
Always plus one. That's the name of this blog because that's how my life is now. There's Mitch, there's Miles, there's Elliott, there's me. So it looks like three now. But it's four. It's plus one. Always.
My little sister Paige got married on Saturday in St. Michaels, Maryland on the Miles River at the Maritime Museum. Miles' name was everywhere in the town, and most of all his spirit was everywhere...no matter where we go, he's there for me, too. Oh, how I miss Miles during the ordinary, everyday moments...like right now as I listen to his Rockabye Baby CD as I type, remembering the miracle of being able to see him, touch him, love him in person. And the big moments--like Paige's wedding--oh, he should have been there.
Yes, he was there in spirit, I know. As we looked out over the water, especially at night, with the stars and sky and wind...that's one of the places we have to find him now. The truth is, his name is fading away more and more with friends and family. Not with me because never will Miles fade for me. But I do protect his name, his memory, but I call out his spirit and my love for him when I can.
And so during the "Best Woman" speech (Paige graciously acknowledged that "Matron of Honor" makes me sound too, well, matronly and a million years old, so she renamed me the "Best Woman" like the "Best Man"...so much better), I truly called out Miles' name because if I am honest with how Paige has impacted my life and shared my joys and sorrows, Mitch and Miles and Elliott all have to be there. So I did it. Sure, I stuck to a light, humorous toast...because that's me...but I was also honest with emotion, including tears in my voice...because that's me now too. So with 150 people watching, I acknowledged Paige's role in standing my our sides with Miles in the hospital. How she loved him. How she rooted for him. How we all wish he were here. We love you, Miles.
This is my speech...making this the longest post ever...no need to read on, but I'm including it just because it feels right in marking where life has been taking me this past week...
My little sister Paige got married on Saturday in St. Michaels, Maryland on the Miles River at the Maritime Museum. Miles' name was everywhere in the town, and most of all his spirit was everywhere...no matter where we go, he's there for me, too. Oh, how I miss Miles during the ordinary, everyday moments...like right now as I listen to his Rockabye Baby CD as I type, remembering the miracle of being able to see him, touch him, love him in person. And the big moments--like Paige's wedding--oh, he should have been there.
Yes, he was there in spirit, I know. As we looked out over the water, especially at night, with the stars and sky and wind...that's one of the places we have to find him now. The truth is, his name is fading away more and more with friends and family. Not with me because never will Miles fade for me. But I do protect his name, his memory, but I call out his spirit and my love for him when I can.
And so during the "Best Woman" speech (Paige graciously acknowledged that "Matron of Honor" makes me sound too, well, matronly and a million years old, so she renamed me the "Best Woman" like the "Best Man"...so much better), I truly called out Miles' name because if I am honest with how Paige has impacted my life and shared my joys and sorrows, Mitch and Miles and Elliott all have to be there. So I did it. Sure, I stuck to a light, humorous toast...because that's me...but I was also honest with emotion, including tears in my voice...because that's me now too. So with 150 people watching, I acknowledged Paige's role in standing my our sides with Miles in the hospital. How she loved him. How she rooted for him. How we all wish he were here. We love you, Miles.
This is my speech...making this the longest post ever...no need to read on, but I'm including it just because it feels right in marking where life has been taking me this past week...
~ ~
Paige Loves Beef Bouillon:
A Toast to Paige on Her Wedding Day
September 17, 2011
Oh, Paiger. I’ve been waiting for this opportunity for a long time. You live life with such spirit, such intensity, and such spunk that it’s easy to celebrate you today on your wedding day…and very easy to tell a few stories about how everything you do is done in the most contagiously spirited, memorable way and sometimes sometimes to the extreme.
Yes, I remember Paige’s flair for life being evident in our board game playing at an early age. Paige, Drew and I would play the board game Risk. It was rather calm as we rolled the dice, playing for hours, taking snack breaks while monitoring each other to make sure no one disturbed the board. But pretty much every game ended in the exact same way…and that was like this…Drew slowly crept toward total world domination until the moment that Paige had enough and the game would come, literally, to a crashing halt. Paige would slam the entire board against the wall, the pieces flying everywhere, the edges of the dice getting chipped yet again on the bricks of the fireplace…I would be laughing hysterically as Drew tried to send Paige to her room to think about what she had done.…ah, yes, one doesn’t forget board games with Paige.
And there were also less competitive games in our early years. Paige and I cooked up a storm in our play kitchen…our play kitchen had an oven that creaked when you opened it and a sink for washing the play dishes and a few plastic food items like a plastic egg and a plastic hot dog and by the way that plastic hot dog had been chewed up—not by me, I promise, and we never had a dog so that can’t be it, AND it is an absolute fact that there was a three month period during which Paige’s love for hotdogs resulted in her eating one every day for breakfast, heating those suckers up in the microwave every day…so you decide whom the likely hot dog chewer culprit is. But this story isn’t about hot dogs, it’s about beef bouillon. Mom would save all kinds of little empty containers from the real kitchen so we could use them in ours. And our favorite was a completely foul smelling beef bouillon cube container. It was empty and had been cleaned many times. But still the pungent smell remained and Paige and I got such joy from forcing each other to sniff it. We would often take breaks during our kitchen play to say, “here sniff this” while uncapping it and shoving it under the other one’s nose. I remember just how Paige’s nose would scrunch up, her eyes closing tight, while yelling out in disgust. And then I’d say…”just one more time” before she would laugh and laugh and always go for the second sniff because it was just too funny not to.
And then in high school. as we blossomed into real maturity, Paige was the pitcher and I was the catcher. As you would expect, we warmed up before games out in the outfield while the rest of the team was getting ready in the infield. What you might not expect is that I thought that Paige pitched better when she was a little angry. Not a ton, just a little ticked off. So naturally I would say a few things to set her off. I may have gone too far that day—after all it was our first game with our brand new team in Chapel Hill so the stakes were high. So maybe I said too much. Let’s not get caught up in those details-shmetails. We’ll never know. But what I can tell you is that Paige and I ended up nose-to-nose having a few words with each other. And one thing led to another. Paige slapped me across the face and I returned the favor. Or perhaps vice versa. Depends on whom you ask. We proceeded to join the team huddle and the entire team just turned and stared at us. Turns out that we made quite the impression on the team as each of us had a red handprint on our faces.
Oh, Paige. Those were good times.
As the older sister, I like to think it was me who taught Paige the important things. But it’s me who has learned from little Paige about making your opinion KNOWN and living each day with spirit. It was always Paige I could count on to make life better—what started as using broomsticks as batons in the driveway grew. It was then Paige encouraging me not to ignore the crush I had on Jon Mitchell in college. And it was then Paige and Bharat who came weekend after weekend to stand by our sides with our sweet Miles in the hospital. It was Paige who was super nanny for Miles in the hospital, teaching me lyrics to children’s songs for me to sing to Miles in the PICU and now to Elliott.
Paige, you live life with such spirit and that bubbles over to the rest of us. Bharat, I’m so happy that you recognize that spirit in her…and I wish you luck in handling it. Bharat, you are already an important part of my life, and I’m grateful that Paige recruited you into the family. And I hope to spend plenty of time competing with you and Paige on the golf course. And beating you.
So, Bharat and Paige…not to ruin the surprise, but your wedding present from Mitch and me is a jar of beef bouillon. We forgot to put in a card so hopefully no one else got that for you, too.
And with that, I hope that life brings nothing worse than an occasional slap in the face from your sister or a deep sniff of beef bouillon. But regardless, with all of life’s joys and pains, with all the intensity that comes along or that you create yourself, I know that living life with spirit and living it together is what matters.
Let’s raise a glass to Paige and Bharat and to living life with spirit!
Sunday, June 19, 2011
Father's Day
The facts in my world on this day: Mitch was and is such a good father to Miles. And Miles died four days before Mitch's first Father's Day. Mitch will never have Miles with him on Father's Day.
I can easily say that I never want for Mitch to be in pain. But I know that's not to be for him. I know that joy and pain coexist for him just as they do for me. On most days, I know we are feeling the pain together and together we let it be--sometimes talking, sometimes listening, sometimes silent, sometimes crying. But on this day--on Father's Day--I so wish I could take the sorrow away from him. I so wish that Miles could be here with Mitch for Father's Day and every day. Oh, it hurts. Yet just as he said to me on Mother's Day, "I didn't get you a present because I can't get you the one thing you really want." And so the best I can do is to be with him, remembering...
Oh, how Miles loved his daddy. There were so many days in the hospital when, with me, Miles would sleep all day and then as soon as he heard Mitch's voice in the afternoon his eyes would pop open. And whenever he heard the rattle of the "orange guy" toy--the ridiculous orange creature that we could never figure out if it was a squirrel or a dog or who knows what really--Miles would look for it...looking more for his daddy than the toy.
And then there's this video that my sister took of Mitch playing with Miles...
Our days in the PICU were torture yet glorious (two terms that should just never go together, I admit). Those are days that we would never trade since they were our only days with Miles. They were happy times because there was Miles; we did whatever was needed because there was Miles, putting so much love in our hearts. Still, the days were so heartbreaking and draining for each of us in different ways. Mitch was balancing being a doctor, knowing the medical world, carrying the weight of understanding and explaining everything to me, while all the while being Miles' daddy. Taking off the white coat (sometimes literally), tuning out his medical world, and just loving his son--it was and is one of the most touching, lasting images I have of Mitch. Miles was his boy and was so, so loved.
This day snuck up on us today. We were so focused on June 16, the anniversary of Miles' death. We are past the one year mark of Miles' life. And here we are on yet another day of longing--longing that the end of Miles' story could have been different, that our story could include him right here with us on this day.
Soon our second child will be here...a whole new world with a baby girl. I'm so looking forward to seeing her with Mitch. Soon, I hope to have many memories of him with our baby girl. Still--there's this one thing that is in my head and in my heart---when I see Mitch as a father, it's as Miles' daddy first and there's joy in that for me.
I can easily say that I never want for Mitch to be in pain. But I know that's not to be for him. I know that joy and pain coexist for him just as they do for me. On most days, I know we are feeling the pain together and together we let it be--sometimes talking, sometimes listening, sometimes silent, sometimes crying. But on this day--on Father's Day--I so wish I could take the sorrow away from him. I so wish that Miles could be here with Mitch for Father's Day and every day. Oh, it hurts. Yet just as he said to me on Mother's Day, "I didn't get you a present because I can't get you the one thing you really want." And so the best I can do is to be with him, remembering...
Oh, how Miles loved his daddy. There were so many days in the hospital when, with me, Miles would sleep all day and then as soon as he heard Mitch's voice in the afternoon his eyes would pop open. And whenever he heard the rattle of the "orange guy" toy--the ridiculous orange creature that we could never figure out if it was a squirrel or a dog or who knows what really--Miles would look for it...looking more for his daddy than the toy.
And then there's this video that my sister took of Mitch playing with Miles...
Our days in the PICU were torture yet glorious (two terms that should just never go together, I admit). Those are days that we would never trade since they were our only days with Miles. They were happy times because there was Miles; we did whatever was needed because there was Miles, putting so much love in our hearts. Still, the days were so heartbreaking and draining for each of us in different ways. Mitch was balancing being a doctor, knowing the medical world, carrying the weight of understanding and explaining everything to me, while all the while being Miles' daddy. Taking off the white coat (sometimes literally), tuning out his medical world, and just loving his son--it was and is one of the most touching, lasting images I have of Mitch. Miles was his boy and was so, so loved.
This day snuck up on us today. We were so focused on June 16, the anniversary of Miles' death. We are past the one year mark of Miles' life. And here we are on yet another day of longing--longing that the end of Miles' story could have been different, that our story could include him right here with us on this day.
Soon our second child will be here...a whole new world with a baby girl. I'm so looking forward to seeing her with Mitch. Soon, I hope to have many memories of him with our baby girl. Still--there's this one thing that is in my head and in my heart---when I see Mitch as a father, it's as Miles' daddy first and there's joy in that for me.
Sunday, June 12, 2011
Parenting, Inc.
Oh, how I love the public library. Let me count the ways. It's nice and cold. It feels like shopping, which makes it free retail therapy. And reading is pretty much the perfect activity (besides standing in the refrigerator section of the grocery store) for these last few hot, hot, hot weeks of pregnancy.
I just finished reading Parenting, Inc. by Pamela Paul. I picked it out because I wanted to read a parenting-themed book yet somehow the typical get-ready-for-being-a-parent book doesn't exactly hit the target for me. There aren't tons of books out there for parents expecting their second child (especially ones who lost their first child), I've realized, mostly because parents expecting their second child don't normally have time to read, I'm guessing. Anyway, I had already tackled multiple books about raising a bilingual child (for some reason, I feel like I should give this a try), speech development, and my favorite NurtureShock. Anyway, Parenting, Inc. promised to be an entertaining one, and I loved reading it. In a nutshell, it was all about how we as a society have come to a place where we spend way too much money on our children and we have become big suckers for overscheduling our babies and doing whatever thing/class (baby sign language, baby classes, so on) promises to make our child smarter, faster, more advanced. It was a good reminder of what's important (and what's not!), I thought.
After flipping the last page and closing the cover, I proceeded to tell Mitch how I was so glad that I read it because it just reinforced some of the ways we want to parent.
And then there was a pause in the conversation. We both looked around the living room and, as always is the case, our eyes landed on our beloved photos of our sweet boy. Our Miles who should be here filling our days. Our Miles who captured our hearts and will forever hold his special place in our lives. Our Miles who we watched every moment of four and a half months...just in awe of every little thing about him and just seeing him on the verge of growing up, making it, being with us always. Our Miles who isn't here in the way we dreamed for him to be.
We were silent, letting each other be alone with our thoughts of him.
And then I felt ridiculous for thinking that the book had taught me anything important about being a parent. Miles had already done it. With Miles, we were in parent boot camp. Sure we weren't doing the typical night-time diaper changing, feeding, and burping or many of the typical parent things. We were purely focused on Miles--the happiness of seeing him every day, the significance of every little step forward, the fact that nothing is a sure thing and nothing is to be taken for granted. In his four and a half months, he showed us everything we needed to know. And they were the big lessons. Truly be in the moment. Learn whatever (medical terms galore, baby massage) and do whatever (fly on a medical plane to Michigan, live in The Ronald McDonald House, wait for hours--barely breathing--during surgeries) is needed. Celebrate life and life's little moments. Do whatever is comforting to my sweet baby even if that means singing in front of nurses, sleeping in a chair for weeks, rocking his booty side-to-side for hours at a time. Insignificant stuff is really silly and insignificant. Let people help. When you can, open your life to others to share the highs and lows with you. Keep praying and hoping yet know that not everything is in my control though I desperately want it to be. Love is stronger than death. Being a mommy is the most magical thing to be...there's just so much really...
"Our sweet boy taught us everything we really need to know about being a parent," was all I could say.
I just finished reading Parenting, Inc. by Pamela Paul. I picked it out because I wanted to read a parenting-themed book yet somehow the typical get-ready-for-being-a-parent book doesn't exactly hit the target for me. There aren't tons of books out there for parents expecting their second child (especially ones who lost their first child), I've realized, mostly because parents expecting their second child don't normally have time to read, I'm guessing. Anyway, I had already tackled multiple books about raising a bilingual child (for some reason, I feel like I should give this a try), speech development, and my favorite NurtureShock. Anyway, Parenting, Inc. promised to be an entertaining one, and I loved reading it. In a nutshell, it was all about how we as a society have come to a place where we spend way too much money on our children and we have become big suckers for overscheduling our babies and doing whatever thing/class (baby sign language, baby classes, so on) promises to make our child smarter, faster, more advanced. It was a good reminder of what's important (and what's not!), I thought.
After flipping the last page and closing the cover, I proceeded to tell Mitch how I was so glad that I read it because it just reinforced some of the ways we want to parent.
And then there was a pause in the conversation. We both looked around the living room and, as always is the case, our eyes landed on our beloved photos of our sweet boy. Our Miles who should be here filling our days. Our Miles who captured our hearts and will forever hold his special place in our lives. Our Miles who we watched every moment of four and a half months...just in awe of every little thing about him and just seeing him on the verge of growing up, making it, being with us always. Our Miles who isn't here in the way we dreamed for him to be.
We were silent, letting each other be alone with our thoughts of him.
And then I felt ridiculous for thinking that the book had taught me anything important about being a parent. Miles had already done it. With Miles, we were in parent boot camp. Sure we weren't doing the typical night-time diaper changing, feeding, and burping or many of the typical parent things. We were purely focused on Miles--the happiness of seeing him every day, the significance of every little step forward, the fact that nothing is a sure thing and nothing is to be taken for granted. In his four and a half months, he showed us everything we needed to know. And they were the big lessons. Truly be in the moment. Learn whatever (medical terms galore, baby massage) and do whatever (fly on a medical plane to Michigan, live in The Ronald McDonald House, wait for hours--barely breathing--during surgeries) is needed. Celebrate life and life's little moments. Do whatever is comforting to my sweet baby even if that means singing in front of nurses, sleeping in a chair for weeks, rocking his booty side-to-side for hours at a time. Insignificant stuff is really silly and insignificant. Let people help. When you can, open your life to others to share the highs and lows with you. Keep praying and hoping yet know that not everything is in my control though I desperately want it to be. Love is stronger than death. Being a mommy is the most magical thing to be...there's just so much really...
"Our sweet boy taught us everything we really need to know about being a parent," was all I could say.
Friday, June 10, 2011
One year and beyond
I don't want for June 16 to come. I don't want the devastation and heartbreak (though those things are here regardless of the day) of that day to be relived. The sadness of Miles' death and the permanence of him not being here each and every day will always be here regardless of the date on a calendar. But, I realized today, I don't want to be past the one year mark. Most of all, I don't want for it to be more than a year since Miles was here. I think that boils down to me not wanting him to be moving further into the past while we move further into the future. And then it makes me nauseous that we'll be parents who have been grieving for more than a year--the world will want for us to be in a better place after a year, I know. That is frankly ridiculous. Yes, we work to come to a place of "peace" in our lives and to love, love, love our boy, carrying him with us as we live forward. But it doesn't get easier or better with a year.
Do I want to be frozen in time? Well, no. I'm ready for the days to come. And I know that my days will be full of joy and pain. I'm eager. Yet...
Most of all, I guess, I still want to scream that our sweet Miles is gone and it is so unfair to him not to get to have a full life. I want to scream that we have so many joys in our life and we are heartbroken. Still. And I know it will take a lifetime of grief; I will miss Miles every day of my life. The joy that I have is that, in my heart, it feels like he was just here. When I close my eyes, I can see his face so clearly and feel him in my arms. His spirit will be part of me every day--and, in that way, I know that it won't matter that we're passing the one year mark.
Do I want to be frozen in time? Well, no. I'm ready for the days to come. And I know that my days will be full of joy and pain. I'm eager. Yet...
Most of all, I guess, I still want to scream that our sweet Miles is gone and it is so unfair to him not to get to have a full life. I want to scream that we have so many joys in our life and we are heartbroken. Still. And I know it will take a lifetime of grief; I will miss Miles every day of my life. The joy that I have is that, in my heart, it feels like he was just here. When I close my eyes, I can see his face so clearly and feel him in my arms. His spirit will be part of me every day--and, in that way, I know that it won't matter that we're passing the one year mark.
Sunday, June 5, 2011
Let it be
The invitation in the mail arrived a few weeks ago. We were invited to a Service of Remembrance at the hospital. It would be a service especially for parents who had lost babies and children as a time to remember their loved ones. Bittersweet. I didn't want to go yet I wanted to go. There is something so comforting really about being in a place where people don't know you, yet you have this unspoken understanding with them, and--most of all--the only truly identifying thing about us is that we're Miles' mommy and daddy. No explaining is needed--we're Miles' mommy and daddy.
Yesterday was the day.
Mitch and I made the walk to the hospital together, noting of course that this was a walk that we had done together many times to go to Miles in the hospital.
As soon as we walked in the hospital chapel, I felt the calm and quiet...and I was overwhelmed with not wanting to be there. Not as in we should have RSVPed "no" to this event. As in, I wish our lives had taken the different path that seemed so close--the one where Miles was here and we had him every day with us and had no need to go to a service of remembrance.
"Oh, Miles," my heart whispered and the tears started as we waited for the service to start. Mitch held my hand and there we were. The two of us, still side-by-side, remembering Miles. "We don't need a service to remember Miles, that's for sure," we had already told each other. Yet it was good to be in the hospital--the place where Miles lived--and to be there just for him. To do this thing for him that, well, was really for us.
The service was special; everything was designed just for us. Surprisingly the part that struck me most was when two women sang "Let It Be" by the Beetles, and I cried through the song. I am not embarrassed about crying (that changed once we lost Miles), but it did strike me as wild (yet somehow appropriate) that I was a hot mess during a Beetles song where at times the two women were accidentally singing different verses of the song, there was the constant hum of the Spanish interpreter, and there were children quietly talking to each other in the back of the room. Yet it was beautiful.
With our grief, the chaplain said, there is often nothing to do...we just have to let it be. Our memories, our joys, our pain, our grief are just there, at times washing over us even stronger than expected, and there it is...just let it be. And that, to me, is so true. With losing Miles, there's no fixing it like with other things in life, there's no putting a positive spin on it, there's no "getting over it" or moving on. I just have to let it be.
So it was good (as good as it could be, I still feel the need to say), in an emotionally draining kind of way. Each family received a paper leaf. An artist had designed a tree with bare branches and all of the families had an opportunity to write messages to their children on the leaves. The leaves were added to the tree, all of our messages filling the tree. Mitch and I wrote our message--the one thing that I pray he knew and knows still--on the leaf: We love you, Miles.
Yesterday was the day.
Mitch and I made the walk to the hospital together, noting of course that this was a walk that we had done together many times to go to Miles in the hospital.
As soon as we walked in the hospital chapel, I felt the calm and quiet...and I was overwhelmed with not wanting to be there. Not as in we should have RSVPed "no" to this event. As in, I wish our lives had taken the different path that seemed so close--the one where Miles was here and we had him every day with us and had no need to go to a service of remembrance.
"Oh, Miles," my heart whispered and the tears started as we waited for the service to start. Mitch held my hand and there we were. The two of us, still side-by-side, remembering Miles. "We don't need a service to remember Miles, that's for sure," we had already told each other. Yet it was good to be in the hospital--the place where Miles lived--and to be there just for him. To do this thing for him that, well, was really for us.
The service was special; everything was designed just for us. Surprisingly the part that struck me most was when two women sang "Let It Be" by the Beetles, and I cried through the song. I am not embarrassed about crying (that changed once we lost Miles), but it did strike me as wild (yet somehow appropriate) that I was a hot mess during a Beetles song where at times the two women were accidentally singing different verses of the song, there was the constant hum of the Spanish interpreter, and there were children quietly talking to each other in the back of the room. Yet it was beautiful.
With our grief, the chaplain said, there is often nothing to do...we just have to let it be. Our memories, our joys, our pain, our grief are just there, at times washing over us even stronger than expected, and there it is...just let it be. And that, to me, is so true. With losing Miles, there's no fixing it like with other things in life, there's no putting a positive spin on it, there's no "getting over it" or moving on. I just have to let it be.
So it was good (as good as it could be, I still feel the need to say), in an emotionally draining kind of way. Each family received a paper leaf. An artist had designed a tree with bare branches and all of the families had an opportunity to write messages to their children on the leaves. The leaves were added to the tree, all of our messages filling the tree. Mitch and I wrote our message--the one thing that I pray he knew and knows still--on the leaf: We love you, Miles.
Friday, June 3, 2011
June
And now I know. Yes. June will be painful.
Last year, we medically transported Miles from Chapel Hill, North Carolina to Ann Arbor, Michigan at the end of May after almost 4 months in the UNC PICU. We went to Ann Arbor in the hopes that one of the top pediatric cardiothoracic surgeons in the country would be able to help our Miles. Miles' complete heart repair operation happened on June 1, 2010.
So there it is. June. June 1. That's the day that they came to the waiting room after Miles had been in surgery for hours; that's the day they told us, "It's rocky down there." And we sat and waited, crying, waiting, envisioning Miles fighting his fight. That's the day that the heart repair ended up going "well," they said...but that's the day that Miles wasn't able to come off the bypass machine. That's the day that Miles had to be supported by ECMO--the baby heart bypass machine that took Miles' blood and oxygenated it, doing the work of the heart, before giving his blood back to him.
That's the night that Mitch and I went in at 2 am to see Miles after surgery. There he was, our sweet Miles, tough and beautiful amid all the chaos. Despite all of the pain medications, that's the night that Miles wiggled his little hand and raised his arm a little bit when he heard his daddy say, "Good job, little man. I'm proud of you."
We still had hope. He just needed time to recover from surgery and then he would get off ECMO, we hoped. For days, Miles continued fighting, kept working on his purple paci, tolerated yet another heart surgery, peeked his eyes open at us. Looking back, of course, this was the time that everything fell apart. All the way to June 16.
And so June is painful. Miles went through so much, so much, so much to not get to be here now. It will never be right.
Last year, we medically transported Miles from Chapel Hill, North Carolina to Ann Arbor, Michigan at the end of May after almost 4 months in the UNC PICU. We went to Ann Arbor in the hopes that one of the top pediatric cardiothoracic surgeons in the country would be able to help our Miles. Miles' complete heart repair operation happened on June 1, 2010.
So there it is. June. June 1. That's the day that they came to the waiting room after Miles had been in surgery for hours; that's the day they told us, "It's rocky down there." And we sat and waited, crying, waiting, envisioning Miles fighting his fight. That's the day that the heart repair ended up going "well," they said...but that's the day that Miles wasn't able to come off the bypass machine. That's the day that Miles had to be supported by ECMO--the baby heart bypass machine that took Miles' blood and oxygenated it, doing the work of the heart, before giving his blood back to him.
That's the night that Mitch and I went in at 2 am to see Miles after surgery. There he was, our sweet Miles, tough and beautiful amid all the chaos. Despite all of the pain medications, that's the night that Miles wiggled his little hand and raised his arm a little bit when he heard his daddy say, "Good job, little man. I'm proud of you."
We still had hope. He just needed time to recover from surgery and then he would get off ECMO, we hoped. For days, Miles continued fighting, kept working on his purple paci, tolerated yet another heart surgery, peeked his eyes open at us. Looking back, of course, this was the time that everything fell apart. All the way to June 16.
And so June is painful. Miles went through so much, so much, so much to not get to be here now. It will never be right.
Friday, May 27, 2011
To share or not to share
To share or not to share Miles?
That is the question that is weighing most heavily on me right now.
It starts simply enough...
Mitch plays in a work softball league that has games twice a week. I go to all the games (just to cheer though I'm already trying to get recruited to play next year when I'm not 8 months pregnant!). And I sit in the dugout with the team because I'm normally the only fan and this way I can chat with the players. These folks are his work colleagues...they know each other and we're definitely friendly. Yet many of them started working with Mitch right after we lost Miles. Since we generally only see each other infrequently and typically in settings were all the conversation is rather superficial, I have never spoken to them about Miles. In fact, I don't even know if they know. It's so bizarre. And so uncomfortable for me.
It's fine if strangers don't know about Miles. Fine. But as strangers/acquaintances start to know Mitch and me better, there comes a point where it's just uncomfortable for me for them not to know about our sweet Miles. It feels like I'm hiding Miles or something. It feels fake. Basically it feels like these new friends think they know me (even at a very basic level) while I think they don't know me at all.
Mitch reminds me that in these situations no one talks about anything important. And it's not like I know anything in-depth about their lives. That's all true. And he thinks he's better adjusted about being around people who know nothing about him (that's a good and sad thing, I think). There's some truth to the fact that, especially as a currently unemployed person, essentially I don't hang out with people who I don't have some level of deeper connection with.
So then what's the solution? I need to get "used" to being around people who don't know about Miles and believe this pregnancy/baby to be my first? I need to get "used" to talking about only superficial things? Or do I spill my guts? Do I become the person who tells every intimate detail about my life? And what if that leaves the other person in shock saying, "Whoa, well, it's time for me to go play right field?" Have I really been true to how I feel and made myself less uncomfortable?
I definitely believe that I honor Miles by speaking about him at times and by protecting him and his story at other times. Some situations are rather clear cut. Others leave me really uncomfortable. I'm learning, I think, that not only is grief oftentimes very private but so is a full understanding of who I am as a person. Sure, maybe it's always been that way but now it's just so very noticeable to me and very, very hard.
That is the question that is weighing most heavily on me right now.
It starts simply enough...
Mitch plays in a work softball league that has games twice a week. I go to all the games (just to cheer though I'm already trying to get recruited to play next year when I'm not 8 months pregnant!). And I sit in the dugout with the team because I'm normally the only fan and this way I can chat with the players. These folks are his work colleagues...they know each other and we're definitely friendly. Yet many of them started working with Mitch right after we lost Miles. Since we generally only see each other infrequently and typically in settings were all the conversation is rather superficial, I have never spoken to them about Miles. In fact, I don't even know if they know. It's so bizarre. And so uncomfortable for me.
It's fine if strangers don't know about Miles. Fine. But as strangers/acquaintances start to know Mitch and me better, there comes a point where it's just uncomfortable for me for them not to know about our sweet Miles. It feels like I'm hiding Miles or something. It feels fake. Basically it feels like these new friends think they know me (even at a very basic level) while I think they don't know me at all.
Mitch reminds me that in these situations no one talks about anything important. And it's not like I know anything in-depth about their lives. That's all true. And he thinks he's better adjusted about being around people who know nothing about him (that's a good and sad thing, I think). There's some truth to the fact that, especially as a currently unemployed person, essentially I don't hang out with people who I don't have some level of deeper connection with.
So then what's the solution? I need to get "used" to being around people who don't know about Miles and believe this pregnancy/baby to be my first? I need to get "used" to talking about only superficial things? Or do I spill my guts? Do I become the person who tells every intimate detail about my life? And what if that leaves the other person in shock saying, "Whoa, well, it's time for me to go play right field?" Have I really been true to how I feel and made myself less uncomfortable?
I definitely believe that I honor Miles by speaking about him at times and by protecting him and his story at other times. Some situations are rather clear cut. Others leave me really uncomfortable. I'm learning, I think, that not only is grief oftentimes very private but so is a full understanding of who I am as a person. Sure, maybe it's always been that way but now it's just so very noticeable to me and very, very hard.
Thursday, May 19, 2011
Miles' light shines on
I've been thinking a lot of how we'll talk about Miles with our baby girl. I know it will be a long time until she'll really understand. It will be complicated, I know. Of course. But it won't take long for her to know that we love Miles, too. It won't be complicated to know what to say about Miles--to speak of his strength, his charming nature, his long eye lashes, his baby mullet. And it dawns on me (with a bittersweet happiness that is more sweet than bitter) that we'll talk to our daughter about how sad we are that Miles isn't here with us but more than that we'll talk about how wonderful it was when he was here. We'll talk about how strong Miles was through his long stay in the hospital, how he decided to smile even when things were rough for him, how he brought so much joy to the people around him. He'll be somewhat of a pint-sized legend, I've already decided.
Most of all, I can't wait to tell her...
Most of all, I can't wait to tell her...
- Miles was a fighter. He had multiple heart surgeries (and multiple other procedures and surgeries, too). He was so tough through them all. He just kept trying. He was so strong, and he was just a baby.
- Miles was a baby working on his own time. After using the ventilator breathing tube for months, Miles was ready to do it on his own. Breathing still wasn't easy for him, but his little chest worked hard at it...proving to all of us that he did things on his own timeline.
- Miles was a charmer. It was impossible not to fall in love with him. His precious face, his I-am-not-amused stare, and his particular enjoyment of rocking on our forearms, listening to Dave Matthews lullabies, and having a good booty shake charmed us all.
- Miles was a looker. He was born with a perfectly precious face, not even a hint of the old-man look you would expect. He had long eyelashes and blue eyes. As he got older, his cheeks got chubbier and he had little sideburns like his daddy. Best of all, his hair was business in the front and party in the back--a true baby mullet.
- Miles was wonderfully made. His plumbing wasn't good, but he was perfect.
Friday, May 13, 2011
Sharing
Miles will be "sharing" his room with his baby sister.
I hate that I have to put quotation marks on it.
Miles never made it to this room. But it was his. It was ready for him.
And we didn't change anything about it after he died. It was still his. I sit in there and cry sometimes, but it isn't the room that makes me cry; I could cry anywhere.
Miles is still in our hearts, and it is still his space. We still have plenty of space for him.
And now, we've just added some pink. Just like any big brother, he's passing down his hand-me-downs. It's not in the way I would have wanted or would have dreamed of, but I'm doing the best I can now as I love both of these little ones so much.
And I added this to the shelf...
We've got a picture of Miles and a picture of our baby girl.
Because just like in our hearts, Miles and the baby girl on the way share this room.
I hate that I have to put quotation marks on it.
Miles never made it to this room. But it was his. It was ready for him.
And we didn't change anything about it after he died. It was still his. I sit in there and cry sometimes, but it isn't the room that makes me cry; I could cry anywhere.
Miles is still in our hearts, and it is still his space. We still have plenty of space for him.
And now, we've just added some pink. Just like any big brother, he's passing down his hand-me-downs. It's not in the way I would have wanted or would have dreamed of, but I'm doing the best I can now as I love both of these little ones so much.
And I added this to the shelf...
We've got a picture of Miles and a picture of our baby girl.
Because just like in our hearts, Miles and the baby girl on the way share this room.
Sunday, May 8, 2011
Mother's Day
I've cried at the mere thought of Mother's Day all week.
I'm still a mother, I know. And being a mother to a child in heaven is a very special kind of mother on every day...but especially Mother's Day.
My arms are empty and aching for Miles on every day but especially today. At the farmer's market and during errands yesterday, several strangers said "Happy Mother's Day" referring to my baby bump; there's just so much more to the story than that.
I blindly hoped that last Mother's Day--my first one, the one where Miles was in the hospital (and had been for three months), the one that I both smiled and cried through--would be my hardest. It was a reasonable hope, I thought. Of course that's not to be for me.
And now I know that Mother's Day won't ever be right for me. It's easy to be Miles' mommy, to love him without boundaries. And it's painful that he's gone. It's easy to be thrilled with the little one on her way as she constantly makes her presence known (and makes us wonder just how rambunctious she will end up being if her antics now are any indication). I'm so hopeful that I'll have her with me on all of my mother's days to come, just as I know that I'll be missing Miles on those days, too. As happy and grateful as I am to be a mother on this day, it's just not right to have my child in heaven.
My number one sadness is for Miles. That he didn't get to grow up. That he didn't get to have a full life. That he didn't get to experience all of the important, not so important, and totally unimportant things in life.
And then I have sadness for me (and us), too. It's highlighted on Mother's Day. That I am missing out on having our son with us. It hits me like a wave that our little guy--part Mitch, part me, all himself--was born, was here, is gone.
I remember being in the hospital for Mother's Day. Without me knowing, my mom and the nurses made a flower pot full of colorful "flowers" made out of cutouts of Miles' hands with his little handprints on the sides of the pot; it makes me smile to think of how thoughtful they were for my first Mother's Day, to think of them scrubbing the green paint off of Miles' hands so I wouldn't be suspicious. And I remember Mitch wanting to take me out to dinner, and me trading it to eat pizza, drink a beer, and cry instead. Most of all, I remember thinking how I was a better mother than I could have ever hoped to be and that it wasn't enough. Living at the hospital, learning so much medical information, keeping track of all of Miles' procedures and medications, pumping breast milk eight times a day to freeze, working on Miles' range of motion exercises from physical therapy, using Johnson's lotion for our daily baby massages, tracking his daily spit up on a chart on the wall, comforting Miles (without being able to feed him or fully pick him up) by caressing his head, singing the Itsy Bitsy Spider and a Noah's ark song, whispering in his ear, rocking him on my forearm, shaking his booty back and forth, reading to him, standing at his bedside for hours on end...it wasn't enough to get Miles healthy and out of the hospital. And that's why there's a smile here (I'm with my Miles on Mother's Day) and, along with that, there's the rosy cheeks and nose from crying, the eyes of a mother who desperately wants her son healthy and out of the hospital so he can be at home with her where they both belong...
And now Mother's Day is worse because Miles isn't here. Sure, being in the hospital was awful, unnatural, but not like this. Simply, the most natural thing in the world would be for Miles to be with his mother, and he's not. And I'm left with the same thought: I am a better mommy than I thought I could be, and it doesn't feel like enough. I do the best I can, taking care of Miles in quite nontraditional ways now--honoring his spirit and memory, making him part of our lives as best we can now--and taking care of our baby girl during this long pregnancy. That's the best it can be now without Miles, but it doesn't feel like enough.
I'm still a mother, I know. And being a mother to a child in heaven is a very special kind of mother on every day...but especially Mother's Day.
My arms are empty and aching for Miles on every day but especially today. At the farmer's market and during errands yesterday, several strangers said "Happy Mother's Day" referring to my baby bump; there's just so much more to the story than that.
I blindly hoped that last Mother's Day--my first one, the one where Miles was in the hospital (and had been for three months), the one that I both smiled and cried through--would be my hardest. It was a reasonable hope, I thought. Of course that's not to be for me.
And now I know that Mother's Day won't ever be right for me. It's easy to be Miles' mommy, to love him without boundaries. And it's painful that he's gone. It's easy to be thrilled with the little one on her way as she constantly makes her presence known (and makes us wonder just how rambunctious she will end up being if her antics now are any indication). I'm so hopeful that I'll have her with me on all of my mother's days to come, just as I know that I'll be missing Miles on those days, too. As happy and grateful as I am to be a mother on this day, it's just not right to have my child in heaven.
My number one sadness is for Miles. That he didn't get to grow up. That he didn't get to have a full life. That he didn't get to experience all of the important, not so important, and totally unimportant things in life.
And then I have sadness for me (and us), too. It's highlighted on Mother's Day. That I am missing out on having our son with us. It hits me like a wave that our little guy--part Mitch, part me, all himself--was born, was here, is gone.
I remember being in the hospital for Mother's Day. Without me knowing, my mom and the nurses made a flower pot full of colorful "flowers" made out of cutouts of Miles' hands with his little handprints on the sides of the pot; it makes me smile to think of how thoughtful they were for my first Mother's Day, to think of them scrubbing the green paint off of Miles' hands so I wouldn't be suspicious. And I remember Mitch wanting to take me out to dinner, and me trading it to eat pizza, drink a beer, and cry instead. Most of all, I remember thinking how I was a better mother than I could have ever hoped to be and that it wasn't enough. Living at the hospital, learning so much medical information, keeping track of all of Miles' procedures and medications, pumping breast milk eight times a day to freeze, working on Miles' range of motion exercises from physical therapy, using Johnson's lotion for our daily baby massages, tracking his daily spit up on a chart on the wall, comforting Miles (without being able to feed him or fully pick him up) by caressing his head, singing the Itsy Bitsy Spider and a Noah's ark song, whispering in his ear, rocking him on my forearm, shaking his booty back and forth, reading to him, standing at his bedside for hours on end...it wasn't enough to get Miles healthy and out of the hospital. And that's why there's a smile here (I'm with my Miles on Mother's Day) and, along with that, there's the rosy cheeks and nose from crying, the eyes of a mother who desperately wants her son healthy and out of the hospital so he can be at home with her where they both belong...
And now Mother's Day is worse because Miles isn't here. Sure, being in the hospital was awful, unnatural, but not like this. Simply, the most natural thing in the world would be for Miles to be with his mother, and he's not. And I'm left with the same thought: I am a better mommy than I thought I could be, and it doesn't feel like enough. I do the best I can, taking care of Miles in quite nontraditional ways now--honoring his spirit and memory, making him part of our lives as best we can now--and taking care of our baby girl during this long pregnancy. That's the best it can be now without Miles, but it doesn't feel like enough.
Thursday, April 21, 2011
Those were the good times
Those were the good times. We knew it then, but we really know it now.
Starting on April 17 last year, Miles' five weeks off the ventilator started. It wasn't all good (there were plenty of daily--hourly really--struggles with his health), but those were the good weeks with Miles.
We were able to hear Miles. We could finally hear his hiccups and hear his cries. We were able to scoop him up--yes, he still had the nasal canula and his broviac of medications--but without the breathing tube, we didn't have to be so careful. We could slide our arms under him and sway him, rocking him in our arms. It took no time to figure out this was what he LOVED...
And Miles didn't need as many sedation medications without the breathing tube.
So he was more awake, more alert, more Miles.
And I could no longer leave the hospital at night. Leaving the hospital at night, forcing myself to get in the elevator to go home and sleep, was practically impossible each time; it was nothing short of against nature to have to do that. It still makes me sick to my stomach.
So I stopped leaving. I moved in to 2C18 with Miles. I slept in the ridiculous sleep-chair in the back of Miles' room, learned to use Miles' boppy as a neck pillow, jumped up as soon as I heard Miles cry. I would stand by his bed, rock him on my arm for hours, then hold him while he slept--silently debating the should-I-just-keep-holding-him-so-he'll-keep-sleeping or should-I-possibly-risk-waking-him-up-by-putting-him-down?
Those are the times that I think of now when I think of us in the hospital. I think of us rocking him on our forearms until they felt like they would fall of and absolutely loving it. I think of me in Miles' dark room at night, standing by his bed in my sweatpants and socks, rocking Miles on my arm and singing to him--because that was what made him (and me) happy.
We knew those were good weeks at the time (though always believing that the really good days were still ahead, still just waiting to unfold at home). And now, well, we know those were the best times we had with Miles. Those days in the hospital were so stressful, torturous really, but they were the good times.
Starting on April 17 last year, Miles' five weeks off the ventilator started. It wasn't all good (there were plenty of daily--hourly really--struggles with his health), but those were the good weeks with Miles.
We were able to hear Miles. We could finally hear his hiccups and hear his cries. We were able to scoop him up--yes, he still had the nasal canula and his broviac of medications--but without the breathing tube, we didn't have to be so careful. We could slide our arms under him and sway him, rocking him in our arms. It took no time to figure out this was what he LOVED...
And Miles didn't need as many sedation medications without the breathing tube.
So he was more awake, more alert, more Miles.
And I could no longer leave the hospital at night. Leaving the hospital at night, forcing myself to get in the elevator to go home and sleep, was practically impossible each time; it was nothing short of against nature to have to do that. It still makes me sick to my stomach.
So I stopped leaving. I moved in to 2C18 with Miles. I slept in the ridiculous sleep-chair in the back of Miles' room, learned to use Miles' boppy as a neck pillow, jumped up as soon as I heard Miles cry. I would stand by his bed, rock him on my arm for hours, then hold him while he slept--silently debating the should-I-just-keep-holding-him-so-he'll-keep-sleeping or should-I-possibly-risk-waking-him-up-by-putting-him-down?
Those are the times that I think of now when I think of us in the hospital. I think of us rocking him on our forearms until they felt like they would fall of and absolutely loving it. I think of me in Miles' dark room at night, standing by his bed in my sweatpants and socks, rocking Miles on my arm and singing to him--because that was what made him (and me) happy.
We knew those were good weeks at the time (though always believing that the really good days were still ahead, still just waiting to unfold at home). And now, well, we know those were the best times we had with Miles. Those days in the hospital were so stressful, torturous really, but they were the good times.
Sunday, April 17, 2011
A Smile
Oh, the time warp.
It has been a whole year since the day that Miles first smiled. That's four seasons ago, 365 days ago, more than a lifetime on his time scale. Yet just a year ago he was here. Miles was here with us just a year ago.
Regardless of time, it's painful that he's gone. And it's joyful to see our sweet baby boy on the day he started smiling...
Subtitles, if needed: "Miles loves his new chair!" is what I say amid all of the laughter.
The laughter sounds good to me, in a bitter-sweet kind of way. It makes me happy that, despite the stress of the PICU and the beeping of the machines, we were enjoying all of these joyful moments with Miles.
It has been a whole year since the day that Miles first smiled. That's four seasons ago, 365 days ago, more than a lifetime on his time scale. Yet just a year ago he was here. Miles was here with us just a year ago.
Regardless of time, it's painful that he's gone. And it's joyful to see our sweet baby boy on the day he started smiling...
Subtitles, if needed: "Miles loves his new chair!" is what I say amid all of the laughter.
The laughter sounds good to me, in a bitter-sweet kind of way. It makes me happy that, despite the stress of the PICU and the beeping of the machines, we were enjoying all of these joyful moments with Miles.
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