Thursday, December 15, 2011

On the extreme ends of the same spectrum

I have this crazy recurring dream of sorts (it happens when I'm awake not when I'm asleep...still it's an imagining that is far short of a "day dream" since it's more of a nightmare). Regardless of what I should call it, it is awful. I fear it.  And it's rather simple.  A friend or family member says, "Oh, Alicia, it's so good you're still the same old Alicia." No one has said this to me. But I fear it.

I am not the same.  Yet if you ask me exactly how I have changed, I fumble around for the specifics. So many ways. So many ways.

I've moved to the extremes, I believe. And--here's what's strange--it's the extremes on both ends of the same spectrum.
I am stronger and I am broken.
I am more compassionate and I am more judgmental.
I am much more open and I am much more private.
I stress much less and I worry much more.
I am much more thankful and I ask for much more in life (more than it can now give me).

And now the big question...why worry about whether other people "see" me now or not? Who cares, right? Well, that's tricky. We all want to be seen of course. (Sadly how deeply do we really get to know many of the people in our lives?) What's complicated is that all the people in my life want me to be happy again; they desperately want to believe that "I'm all better" and being "just the same" would prove that really. All of that bothers me because it feels like they are forgetting Miles and they aren't seeing me because they so blindly believe I'm "all better." But loss and grief are already so damn isolating. I feel that I've seen into this place that not many other people see. And if someone believes me to be the-same-old-me...well, then, I'm just all the more alone...in all my extreme-ness.

Tuesday, December 6, 2011

Books

I am totally predictable with books. I love a good memoir. Specifically, it seems, I love a good memoir that involves a mother and/or father (but always the mother) being a strong, independent, totally memorable, fairly outrageous, and rather crazy personality. I don't go out looking for that book description but it seems to be the one I like again and again. It started with Don't Let's Go to the Dogs tonight. Most recently it's The Glass Castle.

Honestly my "book memory" isn't that good. Mitch will recall details from a book for eternity. For me, it's more like 5 minutes...the perk is that I can reread books and love them as if they are new again. The thing that I've discovered as I reread these two books is that they both involve the loss of a baby (the sibling of the author in both cases), not as a focus of the book at all but rather as part of the life story of the authors. Perhaps it's just a coincidence, but it's got me thinking. Does this just confirm that the loss of a baby (and being part of "the club") is more common than we realize? Or that it becomes taboo to discuss the loss of a baby so it always seems rare? Or that the death of a baby influences a mother to a degree that she's more likely to be strong, independent, rather crazy, and fairly out-of-control? Or that it influences a family beyond measure and that the death of a sibling is not only part of their story but the (or at least one of the main) defining points of their lives?

I've come to no conclusions of course, but there it is...lots of wondering. 

Saturday, December 3, 2011

Ages

My second child is now older than my first.

I still say, "There's your big brother Miles" as we look at his photo when she looks at each framed photo on our dresser. Miles will always be her big brother yet always a baby. It's just one of the seriously messed-up details that goes along with losing Miles. It's one of the things we deal with--because we have to (there is no other alternative really, is there?). Yes, their ages just crossed. I think of how old he should be, yet he'll always be four and a half months. I need that, I realize. Because all of my memories of him are real; all the thoughts of him from the day he was born until he was four and a half months are real. Imagining how he would be after that is just that--imagining.

Oh, Elliott looks so much like him; she is his four-and-a-half-month old sister...now daily getting further away from being his age and size. Will I ever have such a squeezable, kissable reminder of him? These days are precious. Because we have them with her. And because she reminds us of him.

Sunday, November 20, 2011

At first glance

Though this photo was taken two months ago, I just came across it yesterday. The longer I looked at it, the more I laughed. But then I kept thinking about it all day and there's just something that's sticking with me that creates a feeling quite different than being amused.



As I've mentioned I wasn't a big fan of having my picture taken after Miles died--I didn't like that "proof" that he wasn't there--I didn't like freezing myself in that time, that place. So there aren't too many photos of Mitch and me until Elliott hit the scene in July. Now since I want her to have photos, that's that. Still, I realize, there's something really hard about seeing myself in a photo without Miles.

This photo was taken when we were in St. Michaels for my sister's wedding. It was Elliott's first venture out to a restaurant (ok, ok, so she had already been to Chickfila twice but come on). Honestly, Mitch and I were terrified of taking her, well, essentially out in public at all because she was such a fussy baby at the time. I was still feeding on demand, which at the time meant that I was feeding her about every hour because I never knew if she was hungry or not...so she was never completely full nor completely thrilled. In short, we were really happy-ish and pretty much at our wits end. ANYWAY, we were trying to enjoy our week off and decided to be super-adventurous and try to go out for lunch with our families. This photo makes me laugh because--for how our lives had been turned upside down by her--Elliott looks so tiny and harmless. Then it makes me laugh even harder because Mitch and I both look like we are in the newborn-trenches. Mitch is in a little bit of a daze, and I can promise you that his arm is under the table because he was gently rocking Elliott's car seat the entire lunch to keep her happy. And then me...I mean seriously. My arm brace was always on because my arms were practically broken from holding Elliott so much. And I definitely had not washed my hair in days. Then there's the fact that I was wearing the green moby wrap practically as an accessory just in fear that I would have to quickly plop her in there and leave the restaurant to walk for as long as it took for her to stop screaming. Exhausting. Hilarious.

Yet it's not the whole story. I think that's what kept sticking with me. Things aren't always as they seem, don't we all know that? Maybe we look normal, I realize. Yes, I think that's what was sticking with me. We look kind of normal, but our new normal is much more than is there on the surface...much more than what can be seen at first glance. And so I see the moment yet I see our whole story when I look at a photo like this.

Thursday, November 10, 2011

I am a mother.

I am a mother.
I am a mother, and when I think of being a mother, I think of both of my children--Miles and Elliott.
And I say this in a factual way, not a sad, guilty, or sentimental way: For Miles, I felt like I was being the best mother I could possibly be--and it wasn't enough. For Elliott, I feel like I am doing my best yet never have that feeling of being the best mother I could possibly be--yet it's enough. And all of that leaves me feeling like there's no sense in the world. And I feel grateful and sad.
I fill my days with Elliott now. Smiling at her smile, laughing at her laugh, singing to her in the kitchen, holding my breath during nap time that she'll keep sleeping longer than 45 minutes this time. And I carry her around the apartment, catching glimpses of my Miles in our photographs. I think of him and smile. I think of him and the lump in my throat grows as I wish he were here as well. And now I see Elliott look at his photograph, too. And I think, how long until she knows, too, what we're missing?

Friday, October 28, 2011

Thoughts

"Could this really be my life?"
"Could I really have my daughter here in my arms and my son gone from me?"
Reality hits hard.

It starts with a small thought...
Elliott is three and a half months old; we're having so much fun with her as she "matures." And this is the age, I know, when Miles was at his best, too. He was off the ventilator; it was our best time with him.

And then more thoughts just rumble through my mind...picking up speed...
We've taken Elliott to Charleston, Maryland, Texas, Arizona, the Grand Canyon. And home for crying out loud. We've gone through so many things with her...breastfeeding and then adding in formula. Listening to her learn to make sounds, laugh. Holding her while she sleeps and then sleep training. Walking with her in the Moby wrap for hours and hours. We've done so much. And here's the thing. With Miles at this point, we were still in the hospital. It's shocking. All this time and we were still in the hospital. It's incredible what we did, withstood, lived, memorized--four and a half months. All that matters is that's when we had Miles. Those were our four and a half months of having our boy.

And the reality is that we had our Miles for four and a half months and now he's gone forever--I know it to be true but can hardly believe it. Hardly stand it.
And the reality is that our Elliott is three and a half months old. Creeping up on Miles' four and a half months. Soon to be older than Miles got to be.

Thursday, September 29, 2011

Throwing money at a problem

Every time I wake up at night I watch her chest move up and down. I'm checking for breathing, reassuring myself that Elliott's been just fine these past few hours while we were both sleeping. It used to be easy to check when she was in the Moses basket next to our bed. I would peak in, sometimes slightly startling her in her sleep as I leaned in closer and closer; I was always sad to disturb her...but that was small potatoes compared to the relaxing joy I felt that she was ok. Now that she's in her crib in her little "room" (yes, our walk-in closet), it's even harder for me to check without disturbing her. A couple of nights ago, I crawled in on the floor. As I peered in, somehow she sensed it in her sleep and wiggled a little. I backed away quickly, running into the dresser and causing a huge crash. Lo and behold, she woke up.

Mitch sighs and nods. I take that to mean that he wishes I wouldn't worry. But he doesn't blame me that I do.

So I've got it in my mind that the only solution is a video monitor. With a video monitor, I won't wake her up, and I'll still get the peace of mind to know that she's breathing fine through the night. If it were cheap, I would buy it in a heartbeat. Since it's by no means cheap, I push myself to think about whether I really need it. Will the monitor really make me not worry about her health and not worry that I could suddenly lose her if I let my guard down for one second (even actually sleep at night)? Or is it just throwing money at a problem? Perhaps it's a dream world to think that a video monitor will fix anything. When you've loved a child and lost him like we did Miles, you know how precious life is. We know how precious Miles was and Elliott is. I want to do whatever is needed to make sure she stays with us and gets to live a full life; I wanted that for Miles too but wasn't able to do it.  And so I realize that these dreams, these wishes are so much more than anything that can be assured by a video monitor. So maybe I won't buy it, but maybe I will because either way, let's face it, I'm going to obsess.

Saturday, September 24, 2011

Elliott is (now over) two months old!

Each month, we took Miles' photo with his courage lion. As you can see, we love these photos and a couple of them are around on this blog. It was easy to pick the perfect animal for Miles, but I'm having a harder time figuring out which one to photograph Elliott with.
  
For Elliott, I couldn't decide whether to take her photo with her stuffed bunny (Hops), giraffe (currently nameless), or lamb (Lambie). Clearly impossible, right? Crazy how I made actual difficult decisions for Miles and then here I am spending time making insignificant ones for Elliott...it's a gift to do so actually. Truly. So I took her one month and two month photos with each animal to make up for my ridiculous indecisiveness on this...and to put off the decision until later. After this photo, though, I'm going to have to say that it looks like Hops might be the winner!


Thursday, September 22, 2011

On schedule

After 10 weeks of feeding "on demand," I'm now a scheduler.  Feeding on demand was often a nightmare really. Thankfully she's been a great night sleeper (knock on wood, knock on wood, I know) but then she's really been on the fussy side during the days...Elliott would get fussy and seemingly want to eat every hour to two hours during the day.  Seriously, she would eat and then we would all just wonder when she'd want to eat again--knowing that it would probably be pretty soon. She'd never really get filled up and I was going crazy. Even adding in formula wasn't helping. In sum: no one was all that full or all that happy.

SO I'm going Babywise. It happened quickly. Mitch was on call the night before last and when he walked in the door at 6:30 am, I said, "Elliott's now on a schedule. She eats at 6 AM, 9 AM, 12 PM, 3 PM, 6 PM, and 9 PM." And then I left for the dentist--hey, why not live it up? Pretty much that was it. I was fearful (understatement of the year) that Elliott would be upset and crying for food between feedings. But she totally didn't. She also didn't sleep really AT ALL during the day...no matter how many times I explained to her that she needed to follow the eat, wake, sleep cycle, she kept her eyes open. "I have to keep my eye on you, mommy, you've got a fire under your ass evidently," is what she must have been thinking.

Today was day 2 of The Schedule. She rocked it, eating right on schedule and actually napping (with a bit of help from me, the paci, her sleep sheep, the rocker, but, hey, she's two months old and Rome wasn't built in a day). She even slept in her crib for a bit which is practically a first in her lifetime.

Life-changing. Yes, my life has improved already, but this change has also led to a few tears...and not just from Elliott. Since I'm trying to get Elliott to sleep her naps in the crib (instead of being held, which I've indulged her in for too long, I know), I tried soothing her in new ways today that somehow I just never needed because putting her to the breast or bouncing her around were always so easy to do. Essentially today I suddenly found myself soothing her in the ways I soothed Miles in the hospital. I patted her diaper until she relaxed, whispered in her ear while she listened, caressed her head until she slept. After watching her drift off to sleep so peacefully, I closed my eyes and cried while I stroked her head from back to front, thinking of the hours that I had done that for Miles.

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...

~ ~


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! 

Tuesday, September 6, 2011

Two guilts

All mothers have guilt. I know. It's practically handed to you right after they hand you the baby. I know. But my guilt today feels mountainous.

I started supplementing with formula last night. I am truly so sold on breast feeding that it feels like a big fat failure to no longer be exclusively breast feeding. Every day of the past 8 weeks of breast feeding has felt like a major accomplishment, and if wanting to produce more milk resulted in it happening, I would be like Niagra Falls or Old Faithful or something that spews milk. Anyway, I was avoiding formula, avoiding it, avoiding it, and then I realized that I was basically letting Elliott go hungry because of my hang up with breast-only-policy and feeling like a failure. So now the buffet is really open...she's a breast-fed baby with a formula dessert (by the way I refused to buy enfamil though because I felt like the little bunny on the front was taunting me). I'm coming to terms with it...and it doesn't hurt that now she's going for longer between feeds (instead of every hour) and she's cooing a lot more (instead of screaming at a level to get us evicted from our apartment). I can realistically see that it was a practical decision but still...thar she is...the guilt.

Lots of mommies face that kind of guilt, I think, but then there's this...it's too much...I can't look it straight in the eye because it hurts too much and because there would just be no coming back...

I received a package in the mail a few weeks ago asking me to participate in a study about birth defects. I agreed to do it immediately because I definitely want for there to be more information about what causes birth defects so that they can be avoided--simple as that--I owe it to Miles (not in a burdened way but in a it's-one-of-the-few-things-I-can-do-that-feels-like-it's-for-him way). For some reason, though, I actually thought that they would be asking about my pregnancy with Elliott. I guess that the timing of it made me think, "Oh, the hospital told them that Elliott was born so this study is about her...she'll be an example of a baby who doesn't have a birth defect." Still I knew it would be emotional because of course I would again think about everything from my pregnancy with Miles as well and maybe they'd ask some questions about previous pregnancies. On the phone this morning though, they said, "We'll be asking you about environmental and behavioral influences during your pregnancy with Miles." Of course. Obviously it's important to study the mothers of babies who were born with birth defects...and that's me and Miles.
As required by all studies, they had to list the risks; the only risk, they said, was emotional distress for me. Well, duh, I guess. So it was a straight-forward one-hour interview about every little thing I ate, what medications I took, what stress I had, what exercise I did, what water I drank, how lonh my showers were, what factors were present based on where I worked and lived. It wasn't an accusatory interview; yet they are trying to figure out what causes birth defects...by nature, they are trying to figure out what mothers of babies with birth defects did or were exposed to or just what went wrong. It's important. But it hurts. With each question, there's just a feeling that one of those little things somehow killed Miles. Nothing we talked about was anything I hadn't already run through on my head plenty of times--trying to figure it out until the Mitch-voice in my head said gently, "Enough. You'll make yourself crazy. It's not your fault. It's just terrible."
Yes, the fact that something I did or was exposed to caused Miles' heart defect is too much to handle. If only I could turn back time, change that one thing--yet I don't even know what it is. It caused him to be gone, to not get to live his life. It's tragic and there's guilt with that even though I can say the main feeling I have isn't guilty...it's just heartbroken. If only. If only he could be here too.

And so a little formula truly isn't the worst thing. The worst thing was losing Miles.

Wednesday, August 31, 2011

Being here and there


A friend took this picture of Elliott and me last week:


I love it. My heart just smiles with this picture as I live in the now, the reality of my life. Yet there is so much more than this photo can show. But this picture does show my happiness of having this little screamer, this little one who does everything to the extreme--eat, play, cry, you name it, she gets after it when it's time. I'm right here with her.

And I also go back to this one of Miles and me:


I love it. My seconds, minutes, hours, days, months were filled with standing by Miles' bedside. There's so much to say. But most of all, I was happy because I was with him.

So I'm here and there.
It's me, I can see. And I can see that it takes both photos for my heart to completely fill up with the happiness it can hold.

Tuesday, August 23, 2011

A dream that I long for

Sleep now comes in snatches. Two or three hours at a time. Short but oh-so-sweet sleep.

During one late night sleep session during a night when there was way more screaming than sleep happening, I dreamt that I was holding both my babies. I had Miles on one shoulder and Elliott on the other. Elliott was her four-week size. Miles was his four-and-a-half month size--the size that I remember him last. They were both fussing, and I was busy being their mommy. Both of them. I had both of them.

I woke up feeling both of them in my arms. As I cradled Elliott in my arms, I scrambled to remember every detail of holding them both. I smiled to think of Miles, I smiled that he was in my dream. And a lump settled in my throat.

It will never happen on this earth. Elliott and Miles won't be physically together. I'll never hold both of them at the same time. It is just a dream I long for.

Sunday, August 7, 2011

Love by the ounce

We hit Elliott's four week mark today...and as I reflect back on the four weeks, it's quite easy to figure out what we've done with that time...breastfeeding.

Yes, breastfeeding is my new full time job. Or hobby. Or quality time with my sweet girl. Or apparently my current purpose in life according to Elliott!

She loves to eat, and I'm quite happy about that. However, she's not the fastest eater around. I can already tell that she'll be like Mitch and will take hours to eat a meal. (Great! They can eat together while I've already finished and moved on to doing something else.) In the meantime, this means lots of quality time for Elliott and me. It's sort of nice so long as I don't plan on accomplishing anything else. At all.

So...my first time away from her, I ran to the grocery store in an attempt to be normal. It ended up being really emotional for me. I teared up as I drove and was just overwhelmed by what would happen to her if something happened to me. Specifically, I was panicked by the idea of her not being fed without me. I just found myself so connected to her and how she relied on me and how I really wanted to provide every little thing she could ever need in life. "I don't want to die," I found myself thinking. It's a basic or an extreme thing to think, depending on how you look at it. And it's not like I had previously been thinking anything different than that...but I think it boils down to feeling responsible for another little human for the first time since Miles died. In addition to being hormonal and just desperately in love with our new little girl, I simply want to have a life full of memories with her.

About a week later, I worried that I wasn't producing enough milk. (It seems that the worry over milk production is probably not a big concern after all but it can just be added to the list of things that I've been worried about these past few weeks.) It was devastating to me. In a practical way, I can say that it wouldn't be the worst thing in the world if she ended up needed some formula along with breastmilk. In reality, though, it's a lot more complicated than that for me. I just want for everything to be perfect for Elliott. I want to be able to provide everything that she needs, and I want for life to be "simple" for her in a way that just wasn't possible for Miles. It's not a good line of thinking to become dedicated to--so I've been trying to get off my perfectionist kick immediately--yet I can see why I am so protective of her after feeling so out-of-control with Miles' health concerns and time in the hospital and after losing him. Surely that's reasonable. 

And one more thing...after pumping and freezing milk for three months for Miles (though he never got to drink the milk and I donated it to the Milk Bank in Raleigh after his death), this time is all the more special and important to me. Just like I felt when pumping for Miles, breastfeeding Elliott feels like one of the best things I can do for her and is a special bond between us. And now as I hold her close, I treasure the time and closeness and our special connection even more.  

Thursday, July 21, 2011

Not a lot of processing

I realize that if I wait to write until I feel like I have plenty of time, I may never write again. And so here I go, pecking away with one hand as I hold Elliott with the other...

I'm not sure whether it's due to lack of time, lack of sleep, or lack of being able to fully go there right now, but I'm not doing a lot of processing these days (11 days!) since Elliott was born. I'm living much more in the moment, letting thoughts just come in and out of my head. It's similar really to the shock during the hours, days, and weeks after Miles' death. There is much more constant happiness now in this shock (as opposed to the disbelief, overwhelming haze of wanting the world to stop, and just having the memory of happiness of having Miles). And now there's a constant feeling of awe and gratitude. But it's all still there.

Joy does not replace pain. And pain does not replace joy.

And so I don't process too much beyond that. I just let it all be, holding onto each moment before it's gone.

And at times those moments are big.



In the middle of the night, I lay next to Elliott, staring at her precious, perfect face as she sleeps. And there he is. I see her and I see Miles. I do not have a "replacement" issue--I know full well and celebrate that she is our second child, her own little person, starting out on her own little path. But there is something. Something real about feeling like I've been here before--a deja vu of sorts--yet this is the first time I've had a child here with me at home. I look out the window at the hospital at night, the light on the helicopter pad constantly blinking. I think of those days when Miles was alive. And I look at my framed photo of Miles on the day he was born. I whisper to him with tears in my eyes and a smile on my face in case he can see me, "I miss you, Miles. I wish you were here with us, too."

I hold Elliott in my arms, whispering to her how much I love her, memorizing her every facial expression, sound, and sweet way. My moments are happily filled with learning the ways she likes to be held and swayed. Eating spoonfuls of peanut butter and big glasses of milk, trying to keep up my milk supply for her. Panicking when I'm worried she's not breathing well, relying on Mitch to tell me that she's fine. Singing to her and bringing the total number of people who like my singing voice to the grand total of two--Miles and Elliott. Jumping out of the shower midway through to make sure she's still asleep and not crying for me. Holding her all night on the couch since she cries in the crib ("Isn't a walk-in closet supposed to be every girl's dream?" Mitch asks), briefly wondering if I'm doing long term damage to her ability to sleep in her own bed.

Simply I'm busy doing all of the things that I hoped and prayed I would get to do with her--and that I had hoped and prayed to do with Miles. It doesn't take much processing to figure that one out.

Wednesday, July 13, 2011

Elliott Rhea Mitchell is here!

And she's HOME!



Elliott Rhea arrived in the world on Sunday, July 10 at 3:22 pm. She kept us waiting for six days after her due date, but once she decided it was time she really got moving to make her debut. My mom and I made it to the hospital at 1:55 pm...where Mitch was waiting. He was already at work delivering babies (thus the scrubs in the photos)...and I was very happy to see him there, helping me for that last intense, INTENSE hour and a half. I was 9 cm dilated when they checked me at the hospital (same as for Miles). Everything went according to the birth plan...do anything to help the baby, no drugs, no mirrors, Mitch and my mom on the birth team, Dr. Page delivering the baby, breastfeeding right away. One major thing was a bit different than planned...no need to go into major details here, but I absolutely refused to sit down so we had to be more creative with laboring and delivering positions. To show how humorous he found my sudden all-natural-granola-ness with how I wanted to deliver Elliott, Mitch asked between contractions, "Do you want me to light some incense too, hippie?" He claims that all kinds of jokes are allowed so long as they are made between contractions. A few more contractions and...

I could HEAR her crying!  I could SEE her as they handed her to me.  I could HOLD her.



I just have so much joy in my heart.  Elliott is immediately a joy of my life just as Miles is.

She's here and she's ours.

Every moment is full of so much joy--both filling my heart with our girl and remembering our boy.  I miss Miles more than ever. As before, I think of him constantly. And now I think of Elliott as well. Elliott is in our arms and, quite simply, Miles is here with us too in everything.

Oh, how much our two children share on the days of their births. (Thank you, thank you to Hudson's mama for sharing the idea of having a baby picture of Miles ready at the hospital for Elliott's birth.) "Well, that is definitely Miles' little sister," a friend commented immediately. Yes. Yes, it is. Their tiny little chins, the shape of their faces, the color of their hair and eyes, the little noses--a connection right there plain as day. And she is totally herself. They have unique facial expressions, that's for sure. Elliott's mad face is quite different, I can see already. But their calm faces, the ones on their precious, perfect sleeping faces are strikingly similar. It takes my breath away.



Much, much more to say, but this was at least a start to say, "Welcome to the world, Elliott!"

Thursday, July 7, 2011

Always in the backseat

Before Miles was born, I went to the fire station for them to safely install the car seat. It was there for a month, empty and awaiting his arrival.  And then it was there for months, empty and waiting to take him home for the first time.

Miles never rode in his car seat. It's a sad thing but amid all of the truly sad things of losing Miles, it's just a drop in the bucket.

And now it's there again.  To have it ready for his little sister.
It doesn't make me sad to see it. At least, I should say, it doesn't make me any sadder than I already am.
But it does symbolize how we are waiting and ready and hopeful. So hopeful.
So really, in a way, it gives me some peace that we had it for Miles and now we have it for our baby girl.

~

A few weeks after we lost Miles, Mitch and I went on a weekend road trip, to get away, to be with Mitch's parents. On the drive, it was just the two of us, wishing it was just the three of us.

Our car's AC was out, so we took the truck only to discover that the truck's AC was out. So our windows were down, and it was loud on the highway, making it so only the important things were said.

"I wish Miles was in the backseat," I said.

Mitch said, "Me, too. But don't you think he'll kind of always be there--in the backseat with us?"

~

And so here we are. Farther down the road. With Miles always with us. Waiting any day for our sweet little Elliott Rhea.

Tuesday, July 5, 2011

Taking the next big step

What an emotional week. I could say that I've been an emotional wreck during this emotional week, but the truth is that it's just not true. Not because I'm not a wreck but because all the emotions that I'm dealing with can't even qualify as wreck-able. I count it as of-course-I-feel-this-way. Sure it's a wreck, but really what else could I expect?

Every day there's the possibility that it could be THE DAY--it could be the day we've been hoping for and our baby girl arrives. All at the same time, I cry for Miles. It has been important for us to have these days of waiting, I think, to continue balancing all of our feelings. We've known it was coming--our transition to having a second baby...more specifically, our transition to having two children--one living and one in heaven. It has been coming, and throughout this pregnancy we've discussed the transition our lives will take, discussing the powerful emotions that go along with it. There's something about being right on the verge that makes it more real of course. And so I cry. I cry that this all feels so familiar...to be excited for this new life that has been with me for nine months and any day will really be with us. I smile for her and cry for Miles. I cry with how passionately I dream of taking her out of hospital. I cry that we didn't get to do that for Miles. I cry with the happiness over how soon I will hold her. I cry for longing to hold Miles. I cry for the life that he is missing--the scraped knees, the baseball teams, the learning to read, the fights with his sister, the growing up, the whole life he deserved. All while holding my breath and praying and hoping that she will get that chance.

Why cry so much now? I wonder. Most of all, the arrival of our baby girl is a sign that the world keeps going. There have been plenty of these signs of course. It's not a new concept really. But it is the first sign in our own household. Right here. Miles is coming with us of course on this next big step; in the ways that he can, he'll always be with us. Sure, I'll have less time to myself, I know, being busy with a newborn of course. Yet I just don't think I'll spend less time thinking about Miles. If anything, I'll be thinking of him more. Everything, I'm guessing, will continue to remind me of Miles. So the world isn't just still spinning, really it's spinning in a very familiar way to how it did when Miles was here with us. And that brings happiness and tears.

Thursday, June 30, 2011

My husband is the most handsome thing that ever happened to scrubs

My first "scare" happened in the middle of the night on Tuesday. (I don't even know what to call it because when during this pregnancy have I not been worried about my sweet girl? Still, I was even more scared at that moment...)

On Tuesday night around 6 pm, I started having serious contractions. After weeks of Braxton Hicks contractions, these were the first ones that hurt at all. (It turns out that it must have been due to either how badly I wanted her to come on the 28th--seemed like as good a birthday as any--or possibly it was just all the oreos I ate that day.) At the time, I thought it could be very early labor. Around 9 pm, I started timing the contractions. They were always really short but they were coming every 7 to 10 minutes. This could be it, I thought, though I knew we had a long way to go...

Mitch was on call at the hospital for the night, so I called my mom to come spend the night on the couch so that I wouldn't be alone and so that I would have ride in the wee hours if needed. "I'm having some contractions," I told her, very, very careful to express to her that we couldn't get too worked up yet. "Maybe this is it, so maybe it would be best for you to come over just in case."

As soon as I laid down to try to sleep, though, the contractions really slowed down. I slept for a couple of hours. I know I was having some contractions--but not tons and not painful enough to really wake me up. Around 1:30 am I woke up with what I can only describe as an incredibly tight uterus. It felt like a constant contraction that would last for several minutes. It would loosen up for a few seconds. And then back to rock hard. I knew that I wasn't in labor. And I also didn't know when the last time I had felt my baby move was. She had been moving plenty before I went to sleep. Now I couldn't feel anything. Now I would press on my belly the way that she had always responded to before. Still nothing. I was willing to tolerate any of the uncomfortable/painful stuff that comes along with being 9 months pregnant or in labor...but there was no way I could handle not knowing if she was doing ok.

After talking to Mitch, I paged the attending doctor to talk everything through. He said that he thought that everything was fine AND that he knew that the only way to know for sure (especially for ME to know for sure) was to go in to the hospital to hear her heartbeat and to do a non-stress test.

When I arrived, there was Mitch in his scrubs, waiting for his two girls.

They attached the fetal heartbeat monitor and immediately found her heart rate.
Immediately I was fine.
She was fine.
That's all I needed to hear.

And, yes, I briefly thought about asking if I could just stay in that room, listening to her heart rate, until she came on July 4th...

Her heart rate was good. But they wanted to see more accelerations so we stayed for about an hour. They tried the auditory buzzer to get her to wake up. It make me smile that she didn't react to it just like Miles didn't during all of the weekly routine non-stress tests we did with him.  I pictured each of them in there, rolling there eyes, thinking "Are you serious? That's the best you can do?" Meanwhile, Mitch brought me apple juice, and that did the trick to get her moving and to get us out of there.

And now here we are. Still waiting. These things I know to be true: I feel an enormous responsibility to be vigilant and make sure that our baby is doing ok, she is very, very loved, my two children bring joy to my heart, and my husband is the most handsome thing that ever happened to scrubs.

Tuesday, June 28, 2011

Does dusting the ceiling fan count as nesting?

Yes, I would have to say. For whatever reason, I felt compelled to randomly dust the ceiling fan and even dust our one house plant today (who knew that dust settled on plant leaves?). This nest is ready.

Mitch calls me from work every couple of hours to see how I'm doing, hoping constantly that I'll say that I'm in labor. And he repeatedly reminds me of how to get in touch with him--which is especially endearing because 1. I have his cell phone number, 2. he wears a pager that I have the number for, 3. I know the hospital phone number for where he is working, and MOST OF ALL 4. he is currently working as the resident delivering babies exactly where I'll go to deliver our baby! I will find him, I assure him.

To say the least, we are eager for our sweet girl to get here. Nine months of waiting...yet these last few days (6 days to go!) feel especially slow. I'm ready for life to change again. I'm ready for our family to grow by one again. I'm ready to love another little one just as we love Miles.

As natural as it may be to have a second child, for us it has taken so much love, courage, and hope to get to this point. And every day begins with the thought, "This could be the day she gets here. This could be the day that we have one more to love, with our Miles in heaven and our baby girl in our arms..."

Friday, June 24, 2011

We just want her to be healthy...

"We just want her to be healthy." I feel it's a fairly common thing for a soon-to-be-parent to say about their little one on the way.  Can anyone mean it to the extent that a parent who has lost a child means it or wish for it with their entire being in the way they can? Not that it's a competition or that it even matters who means it more.  I guess I just mean that it's so more than a routine cliche when I say it, and the perspective and significance of what's important regarding health and life in general is so enhanced because of having Miles.

Yes, my biggest hope these days is that our baby girl will be healthy. It's a complicated wish that I have so little control over but that I hold out hope can still happen for her and for us.

Yet I hate the comment.  I feel that it's too simplified. Yes, I hope that she's healthy. Lord, please watch over her health. Lord, please let us keep her. Yet...the state of her health will be what it will be. We will love, adore, and care for her no matter where on the spectrum her health falls.

But here's why I don't like the comment...it makes it sound like we only want healthy babies--as if Miles' health problems were his fault instead of just a wildly unlucky fluke that he (and we) fought so hard for months to combat. Of course, I desperately wish that Miles' health had been better. I wish that he was able to live a healthy life with heart problems or that he had never had health problems at all.  But we loved him, loved him, loved him and he wasn't healthy. It's not like him being unhealthy ended up changing anything at all except that we lost him. Ultimately he was perfect, perfectly him--just as our little girl will be perfectly her.

And so it's loaded. I just want our baby girl to be healthy, and Miles' health problems didn't make him any less perfect or any less loved. And that's that.

Wednesday, June 22, 2011

Holding my babies

I am 38 weeks and 2 days pregnant. So I'm busy waiting for our girl to arrive. I've got our bags packed, complete with the usual suspects but with different essentials than we had when Miles was born. Now we have a framed photo of Miles so we can see how our little ones compare on the days of their birth. I've got a baptism dress ready for her because we are hoping for the pediatric chaplain (who supported us during Miles' life and held Miles' memorial service for us in New Hampshire) to baptize her in the hospital...untraditional, sure, but it's where Miles lived and we want for her to have a special connection to that place, too. And we have a tiny little hospital shirt with her name embroidered just like the shirt that Miles wore with his name. And then, most importantly, I remind myself, we have us--Mitch and me--the two people who loved and adored Miles carrying on to love and adore our baby girl.

And here's the thing. I haven't held a baby since I held Miles. It has been intentional. I wanted for my memory of holding Miles to not be cloudy, to not possibly be confused with holding another baby. I did that for me--a gift of sorts and, in another way, as a way to be careful with myself, to give myself a break, to keep me from completely breaking, to hold out until it could be one of my babies in my arms. And now I am getting so close again. But I have held two infants. When our friends' daughter Grace was one and a half years old, she held her arms up for me to pick her up to get in the stroller; it was precious, and of course I grabbed her. My niece Claire, born just three weeks after Miles, needed to be in a family photo of all the girls when she was almost a year old; for the first time, I held her for just a few moments, proving to myself that I could do it, amazed at how heavy she was. And then, several months later, she was crying, and I held her, trying to comfort her, dancing her around, playing in the mirror, looking at the crazy bird in its cage, walking outside, changing her diaper. She is precious to me in the kind of way that tears my heart out. Will I ever look at her and not think of Miles? Will I ever see her and not think, "Miles should be here, too. That's what Miles should be doing..."? Probably not. And that's painful, but it's also real. Yes, I'll be crying (sometimes on the outside and always on the inside), but that's real. It takes Miles away from me yet brings him to me.

So that's it. I've held infants three times but no babies since Miles. And now, finally, finally, I'll get to hold our girl. I'm so excited I can barely stand it. And it brings the painful lump to my throat as the tears form. The moment she is born will mark her place in the world. It will bring such happiness. We will suddenly have two children. And one of them still won't be here. As I hold her and smile and laugh, I will think of holding Miles on the day he was born, I know. Both babies will have my heart, and I wonder how much of a mess I will be.

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.

Thursday, June 16, 2011

Dear Miles

I wrote a letter to Miles last year and read it at his memorial service in New Hampshire. I wrote to him again this year with a heavy heart on the one year anniversary of his death...

June 16, 2011

Dear Miles,

My sweet baby boy, not a day has gone by that I haven't thought of you and held you close in my heart. The memory of your sweet face and powerful spirit make me smile. It is hard to think that it has been a year since we last held you in our arms, but I can see it and feel it so well in my heart. And that is the thing that brings me peace--to think of holding you and to think of the treasured time that we had with you that I am so grateful for.

The world is different since you left, Miles. You made my world better. In the moments when I smile and laugh and love, I think that is when I honor your memory the most.
Yet the world is a sadder place without you. Part of me left with you, and I'm glad about that. I like to think that the part of me that left is with you. You deserve that, I know. In the moments when I cry--when I see with such clarity that you, my sweet son, are gone and all of the heartbreak that brings--I think that is when I honor your memory well, too.

Miles, you have a little sister on the way. It breaks my heart that she won't get to meet you and grow up together with you. But she will know you, sweet boy. We will tell her all about you. Soon--we hope and pray--we will be doing all of the things with her that we hoped to do with you. She will remind me of you and, as I try to be a good mommy to her, I will think of being your mommy, too.

I am so sorry that you are not here, Miles. But I think of you as being with me every day and every moment...it's not in the way that I had hoped and dreamed of, but you are with me. It's hard for me to imagine where you are, but I hope and pray that it is joyful, without pain, and with so much love. I hope that you are free and happy where you are, and I hope that you can feel the special squeeze, kiss, rock, and head rub that I send you every day but especially today.

I love you, Miles.
Mommy

Monday, June 13, 2011

Dear Miles (my letter from one year ago)

I wrote this letter to Miles one year ago when we lost him, and I read it at his memorial service at our family cemetery in New Hampshire. Now on the one year anniversary of his death, I'm writing a letter to him again--which is yet again a very emotional endeavor that is taking a few days. So first I'm sharing this letter to Miles, remembering how desperately I wanted him to know he was loved and how desperately I wanted him to be remembered for his charming, fighting spirit not for his death.

June 16, 2010

Dear Miles,

My sweet baby Miles, you are a treasure to us.  You showed us every day that you had such spirit and personality.  You were a sweet angel yet a mighty fighter.  You got an unfair share of troubles but also an unfair share of good looks.

I am heartbroken.  But, Miles, it is not all sadness.  Believe me that 140 days in the PICU were filled with many worries and fears.  Regardless, you filled my heart up with happiness and these are the memories that I will have always.
-Remember when you were born and your nana, daddy, me, and you made it to the hospital in the nick of time.
-Remember when your family members visited you and rubbed your head, held your hand, read to you, and sang to you to make you happy and to show you much we loved you.
-Remember when we stopped noticing the tubes and lines, and held you and rocked you.
-Remember the night you started breathing on your own, you cried and cried and nothing made you stop...until I held you and sang the Itsy Bitsy spider nonstop.  
-Remember the next day you smiled so big for your daddy and me because we were all together.
-Remember when that doctor made me cry, you gave him a dirty look.  Miles, even though you didn't know what you were doing, that was the right thing to do.
-Remember right after your second heart surgery when you were supposed to be out of it, you wiggled your hand when you heard your daddy's voice as he told you how proud he was of you.
-Remember how each of your nurses thought that she was your favorite, which was such a smart thing for you to do.  It's just that your sweet angel face, feisty personality, and slight hint of a mullet were perfectly irresistible.
-Remember how I told you that you were a celebrity.  So many people -- higher than you can count -- have prayed for you and rooted for you.  Some of those people got to meet you and see your precious little face.  Some of those people are here now.  And still others are all over and they all continue to love you.  They will help your mommy and daddy by remembering you and celebrating you always.

Miles, I cry today because I miss you and I wish you could be with us always.  I cry because we knew you so well and can imagine what it would be like to help you grow up.  I cry because I wanted a long, full life for you.  I cry because I want to hold you.  And I cry because you never got to go home with us.
But I smile because your are home in heaven now.  I smile because you will always be a treasure to us in our hearts.  I smile because you've taught us so much about life.  I smile because you're the only person who ever thought I was a good singer.  I smile because I will always remember exactly how it felt to hold you.  I smile because of something I told your daddy; I said to him, "You can't be sad for more than a second when I die because you'll know that I've gone to heaven to hold that baby."  And I smile, Miles, because you were perfect and ours and very, very loved.

XOXO, booty shake, head rub, and snuggle,
Mommy

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.

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, 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.

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.

Sunday, May 29, 2011

Ways to Help Hospital Mommies and Daddies

A good friend of mine just sent a message asking, "What gift ideas do you have for a friend who will be in the hospital for a long time with her baby?"  I know that everyone probably has different responses to this, but based on our experience with Miles in the hospital for four and a half months here goes....

Things that are important:

  • A journal I wrote a few "diary"-type entries, but mostly I used my journal to keep a timeline of Miles' medical procedures, to keep track of all of his nurses, to take notes on medical info that I needed to remember.  It was a lifesaver.
  • A CD of children's lullabies A friend made a CD of Dave Matthews, the Beetles, just a big variety of "Rockabye Baby" contemporary lullabies for us (you can buy Rockabye Baby CDs or download the songs from Itunes)....Miles loved it, the nurses loved it, we loved it...it really made our room a peaceful place in the midst of hospital craziness.
  • A special children's book to read to the baby Corduroy, The Very Hungry Caterpillar, and Guess How Much I Love You were Miles' favorites. On the Night You Were born is also a book that we received later that is a wonderful gift to consider.
  • A "flat friend" stuffed animal These stuffed animals added a friendly baby touch to the hospital room, and we used them for so many purposes like keeping Miles' hands away from the breathing tube.  

  • Lyrics to children's songs With Miles, my voice was comforting to him (and I thank God for that small miracle), and I wanted to sing, sing, sing to him.  I found myself just remembering a few random lyrics to vacation bible school songs so my sister printed out lyrics for me so that I'd have lots of songs to sing to him.
  • Dinner Eating is one of the first things to go with the stress and chaos.  A meal or baked goods that can be eaten right away or saved in the freezer is so helpful.
  • A care package of essentials For us, the essentials were: toilet paper, paper towels, OJ, milk, fruit, and coffee. My mom would drop off bags of these things every week or so to keep us going.
Non-"things" that are just as important...
  • Frequent phone calls I rarely answered my phone mostly because I wanted to spend the time just with Miles--he deserved all of my focus.  Plus phones weren't allowed in the PICU, plus I wasn't always in the mood to talk, plus it was so difficult to explain everything...still, it meant a lot to me when someone called and left a voicemail saying, "I've been thinking of you, Mitch, and Miles.  I can imagine these days are so hard, and I'm just thinking of all the strength that you have. We love Miles so much too, and we're rooting for him every day."
  • Meaningful emails or letters The short "been thinking of you" messages were good too, but the really meaningful ones were treasures.  I had a friend who wrote long emails about how a sunset or a program on the radio or a verse at church made her think of me and the faith I was showing.  She kept telling me that she was praying for my miracle. 
  • Listen It sounds so easy, but it was really special when a friend or family member would ask how I was doing--I mean really doing--and then just listen.  No unhelpful comments like "This is God's plan" that could end up being hurtful---just listening.
  • Specific offers to help "If there is anything I can do to help, let me know" is a nice sentiment, but it was even better when there was a specific offer.  "I'm doing your laundry, what day do you want me to pick it up?" and "Unless you really don't want me to, I'd like to spend an afternoon just being with you at the hospital" were all offers that I loved, loved, loved.
  • And of course...Be Super Nanny My mom and sister spent time being super nanny when Miles was off the ventilator and needed more comforting.  They took care of Miles while I slept in the back of the room.
Wow.  So with that, I'm left thinking of all of the special people who supported us while we were in the hospital.  And I'm left very much missing Miles.

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.

Thursday, May 26, 2011

A bigger tshirt (and a timeline of pregnancy photos)

I finally broke down yesterday and bought an XL tshirt from Target. I was trying to hold out and not spend money on maternity clothes--my strategy is to wear borrowed maternity clothes or the maternity dresses my mom has sewn for me (yes, I'm spoiled in that way) or carefully-chosen normal clothes from my closet (yes, just practically bust out of them...it's attractive).  Even Mitch's tshirts are now too tight on my belly so it was time. Hopefully this baby girl is getting bigger...I definitely am.

I haven't taken many photos during this pregnancy. As I've mentioned, I avoid photos in general now because I don't like to see myself frozen in time; somehow that makes the pain worse because it makes it so that I see the pain as well as feeling it. It's just impossible for me to look at a photo of myself and not think, "Miles should be there with me." Still, I do have a few prego photos to put in baby girl's baby book (mostly I've just had to crop other people out of the few random photos I have). I bought a special baby book just for her. It's big; it's notebook-sized so that it's identical to the one I had to take to the bookbinder for our encyclopedia-of-Miles. I don't want her to feel like mommy skimped on her baby book!

Anyway, I'll have to handle my issue with taking photos, I promise myself, once baby girl is here. Just like Miles was able to do, she'll turn her daddy and me into photographers, I know.

In the meantime, here's my timeline of pregnancy photos right up to today's shot in my new Target tshirt.



34 weeks to go (yes, we're dressed for golfing)...


24 weeks to go (my pregnancy was still top secret)...



17 weeks to go...


10 weeks to go (I used to think scarves hid my baby bump)...



6 weeks to go...



Bigger and bigger. Bigger on the outside and bigger on the inside...making room in my heart for another little love of my life. Yes, I love this little one so much. I'm looking forward to her joining our family--Mitch, me, Miles, and baby girl.

Wednesday, May 25, 2011

Therapy

I went to a therapist for a few months.  It was my official "therapy" stage. For months right after Miles died, I mostly wanted to be alone, thinking through everything on my own, writing a memoir of my time with Miles.  That writing phase lasted three months. When I found out I was pregnant, I quickly realized it was time for the next phase: I needed someone to sit and listen to me for an hour--just listen to me talk for an hour, boiling down my thoughts, supporting my feelings. So I headed to a therapist who specialized in, among other things, parents who have lost children. It was like having a really insightful friend who never had issues of her own to talk about.  I could be selfish without feeling like it.  And then, after a couple of months, I decided it was time for that phase of "therapy" to transition into something else, too.

And so I go from one phase to another. It's all therapy, though, when I think about it--anything that allows me to find moments of peace in the madness, to be heard, to know that Miles is loved.

My forms of therapy, then, have been in phases, each one lasting at least a month or so:
1. writing a memoir of Miles' life (and mine)
2. reading every grief book I could find (written by PhDs and by bereaved parents)
3. meeting weekly with a therapist
4. attending a few group sessions with Angels Too Soon
5. reading blogs written by mothers who have lost children
6. starting this blog

And today I'm sending out one more query to find an agent for my book. It doesn't count as therapy at all. The most important part is that I wrote the story; Mitch and I have it, and in the end that's what matters. But I do want for people to know Miles' story so here goes one more query for an agent...

Monday, May 23, 2011

Ways to help a grieving friend...with time

We're coming up on the one year mark since Miles died. June 16. I am dreading it. When I think of Miles, most of my focus is on the joy of the days we had him.  Not the emptiness of the day we lost him. Of course the sadness is always there; but so is the happiness at the memory of his little face, his weight on my arm, his charming and fighting spirit.  I close my eyes and there he is.  But how can June 16 be anything but painful?

As we approach, I'm thinking of many things. One is how I'll hide out on June 16, not answering my phone, just wanting to be alone with Mitch. I know that family and friends will be thinking of Miles, Mitch, and me. And I'll appreciate their messages. I'll be glad that they'll call or write because that's the main way to support us now--those notes mean more than I could have ever imagined. Right after Miles died, there were the meals, the condolence letters, the donations to the hospital or the Ronald McDonald House. Now, though, the absolute best thing that others do is to show that they are still loving and thinking of Miles, too. And so I've been thinking of the meaningful ways that our family and friends have been helping us--their still grieving friends--and how there are important ways to help even as time goes by...these are my favorites that I've molded into "tips" of some sort...
  • Keep communicating. I have an aunt who has sent cards for no reason at all over the past year.  And she includes stories of what she's up to, how she's been thinking of Mitch and me, how Miles has impacted her life. It's incredible. She'll sign her cards with "so thankful for you, Mitch, Miles, and 'baby girl'!"
  • Say the baby's name; acknowledge his/her importance. Almost 11 months after Miles died, we had a small cookout with friends. After a while, another bottle of wine was opened and a friend said, "I want to make a toast. To Miles and his wonderful parents." It was completely out of the blue and touched us in such a special way.
  • Remember the important days but remember the other days even more. I didn't answer my phone on Mother's Day. I appreciated the people who called and who wrote messages. But I wasn't willing to communicate on that day. Reaching out on the other days is just as meaningful to me.
  • Ask about how we're doing. And I'm not talking about the fake greeting at the beginning of the conversation!  I'm talking about in the middle of a conversation.  I love, love, love my family and friends who say, "I've been thinking about Miles.  How have you been doing?" And then they just listen. It totally opens up the door for me.
  • Do something good in the world in memory of the baby. Family and friends have done many special things in memory of Miles: donating books to children, giving blood, making a meal for the Ronald McDonald House, even read a book about gratitude and led a book club about it. All of it makes me smile.
What else, I wonder?