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?

Sunday, May 22, 2011

All my tears

I headed to church again today and was able to sit between two friends--a fortunate thing as unexpected tears would fall later.  I'm almost reluctant to be writing about church again because I do not want to give the impression that all of my experiences in life, all of my love and pain for Miles, and who I am as a person has to be seen through the lens of church.  But having faith in God is part of my life and that's more of the topic that I've been working with.

To be clear...I am a Christian.  I am a Christian who doesn't routinely go to church these days.  I believe that God is faithful and in my life.  I used to believe that prayer was the way to, more or less, ask God to do what you want and then he would do it.  I now know that no matter how deeply, routinely, desperately I prayed for Miles to get healthy, God did not control that.  For myself, I realized that God doesn't listen to my prayers (or anyone else's for that matter, but I'm trying not to step on anyone's toes) and then wave a wand to either do what is asked or not.  It's not a matter of God judging and then determining who he likes, doesn't like...who he'll save or who he won't...based on a prayer.  If that were the case, there would be a lot fewer terrible things happening in the world.  It doesn't take too much of a look around to see that God doesn't intervene in ways to stop all the terrible things of the world from happening (and, yes, even terrible things happening to "good" people).  In fact, that's one of the gifts that God gave us--to not intervene, to have free lives.  We have free lives to live the way that we choose (or feel compelled to live them); sometimes we do a great job with that, sometimes we don't, and sometimes terrible things happen.  And the process of a baby growing inside his mother is a miracle, a process that almost always works to make a healthy baby...and sometimes it doesn't and that's not because God didn't want it to happen. God is there, I believe, even when he doesn't "intervene" in the way I would want. I've learned, I believe, that God is listening, he's hearing our concerns, he knows my strongest prayer was to keep Miles. And it didn't happen.  But God is in my life, walking with me, I think.  It wasn't "his plan" for Miles to die. God didn't take Miles from me, but he was there to receive Miles once Miles had to go.

Whoa.  So that was me on my soap box of my own beliefs.  Suffice it to say once again that my faith has been pushed from losing Miles.

So the title of the sermon today was "Gospel Parenting." "Uh oh" was my immediate thought as I braced myself for the generalizations of how tough parenting is for typical church-going parents and how God should be part of the parents' decisions in the typical, daily, normal lives of their children--I could practically feel the kick in the face coming.  But the sermon didn't turn out to be the most upsetting part...it turned out to be one of the praise songs that I could just barely handle.


All my tears
by Julie Miller

When I go don't cry for me
in my father's arms I'll be
the wounds this world left on my soul
will all be healed and I'll be whole
sun and moon will be replaced
with the light of Jesus' face
and I will not be ashamed
for my savior knows my name
It don't matter where you bury me
I'll be home and I'll be free
It don't matter where I lay
All my tears be washed away
Gold and silver blind the eye
temporary riches lie
Come and eat from heaven's store
Come and drink and thirst no more
So weep not for me my friend
When my time below does end
For my life belongs to him
Who will raise the dead again
It don't matter where you bury me
I'll be home and I'll be free
It don't matter where I lay
All my tears be washed away


So I cried during this song.  Luckily my friend (who just happens to be my OB...who just happens to be the woman who delivered Miles and first handed him to us...who just happens to be walking with me as I love Miles and this baby girl) tore off pieces of her tissue to share with me.  "I'm glad we got to hear that song together," she said at the end.

So just a few thoughts as I continue to think about this song today...
Though "When I go don't cry for me, in my father's arms I'll be" is an image that is comforting as I hope, hope, hope this is true and that Miles is in a wonderful place in heaven, there's no way I won't cry about it.
"When my time below does end" makes me think of a person who has lived a full-ish life yet life then comes to a close. I just can't accept that it was time for Miles' time to end; surely he deserved more.
"It don't matter where you bury me, I'll be home and I'll be free." This was probably the kicker for me. We buried Miles in a family cemetery in New Hampshire.  It is a special place for us and was the "right" place if there can possibly be one.  Because of the long winter weather and now the end of this pregnancy, I haven't been back.  We haven't been able to visit Miles' gravesite since his service almost a year ago.  It makes me cry.  A lot.  This one thought is the only thing that keeps me from breaking down permanently over it: that's where his body is, but that is not where he is.
His spirit left--I watched it go--and he is free, free, free.

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...

  • 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. 
And so I'll read On the Night You Were Born by Nancy Tillman to our daughter and I will think of Miles because on the day he was born, the world would never be the same.

Wednesday, May 18, 2011

The worst thing is still happening

Previously--in my former life I could say--bad things seemed to be fleeting.  If something bad happened, often it went away eventually.
Certainly, obviously, that is not how it feels with losing a child.
The worst thing happened on June 16, 2010 when Miles died.  And the worst thing continues to be happening each day--he's not here.  He's not here today.  So the worst thing continues to be happening each day. With time, that doesn't change--I just "get used" to how that pain feels, incorporating it in who I am, how I live.

Every day is happy yet hard in its own way.
Yesterday, I saw a friend's little boy who I know was born just a few weeks after Miles.  I looked at him, and he looked at me. "That's how big Miles should be," I thought. "That's how skeptically Miles should be staring at a stranger." I smiled. And then later I cried.  And a few thoughts come to mind...

One is an epitaph but the sentiment applies to me, too...
"Step softly, a dream lies buried here."

Now Miles is in my heart and in who I am as a mother, a person, a spirit. And there's so much joy in having had him for the short time that we did. And the pain of the rest of his life unlived is right there, right under the surface for me, waiting to bubble over in tears.

And one from the bible (Philippians 1:3)...
"I thank my God for every remembrance of you."

Yes, these moments each day are painful. Yet there Miles is.  He's there in those moments.  And I feel so much love for him.

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.

Tuesday, May 10, 2011

Top Ten "New" Rules of Pregnancy for Me

For the record, I know that the cause of Miles' congenital heart defect is unknown.  It's nothing I did, they say.
I know that. Yet somehow I can't help thinking of every little simply scary thing in life that could possibly in any tiny way have impacted Miles and now could impact our second child...and if it possibly could be bad (even if that's just in my mind) then I don't do it.

In short, I'm psycho...but I hide it fairly well, I like to think. Constantly I worry that I am responsible for doing every little thing right--all while feeling helpless as I lack true control over actually ensuring the health of our baby girl. There's nothing I can do, yet I obsess over every little thing and am SO careful.

The complete list feels endless I'm afraid, but I'll share a sampling of things that I've done differently during this pregnancy for the baby's health (and my own sanity).

Top Ten "New" Rules of Pregnancy for Me
10. No heart rate higher than 140 bpm. Therefore, no running...just walking on an incline on the treadmill.
9. Move to another part of the gym when the cleaning man comes close to my machine. Leave the gym if I still feel I am in the range of chemicals.
8. Avoid bathroom cleaning products for the first trimester.  Yes, this reveals how long our bathroom went without being cleaned.
7. No clorox bathroom cleaning products ever again. I've switched over to "green" ones with only a few chemicals on the labels.  I wear gloves and clean the least often as possible (just for guests and un-ignorable grime).
6. No Ipod hooked onto the waistband of my shirts (only permissible to hook it on the top of my tshirt)
5. Give up coffee.
4. Give up chocolate soy milk.
3. Refuse to ever put computer on my lap.
2. No pedicures.
1. No microwave. It sat unplugged on the floor for months until Mitch asked if we were ever going to use it again.  When I said no, he got rid of it.

And of course there's the "appropriately react to all potentially harmful situations" rule. Thus the time I had an anxiety attack after I broke a high efficiency lightbulb and read the label that there is mercury in the damn things...Mitch put a mask on me, I evacuated the apartment, he cleaned up the mess, and we spent the night at my parents' house.

The truth is that these things, just like all the other things that I'm not admitting to doing/not doing this time around, are totally fine for pregnant women (according to more reliable sources of medical information than I am) so please don't think I'm judging. I'm just not a typical pregnant woman any more--a psycho pregnant woman would be one way to put it now, but, in all fairness, I feel it's fairly reasonable to be so in my case.

With this pregnancy, my number one goal is for the baby to be healthy. And after that goal, if possible, it would be nice to be a sane person as well.

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.

Thursday, May 5, 2011

The new normal

Normal is always changing, it seems. The books call our new state of being our "new normal," and it's hard to argue--the daily realities of living on (not moving on) with a broken heart wouldn't be normal to, well, normal people but it's normal to us.

Let me back up. When Miles was in the hospital, we knew that his life would always be pretty medical. He would have multiple heart surgeries during his childhood. Even when he got home, we knew his daily life would be much more medical than most children's lives--but that would be his normal. That would be our normal.

And now, since Miles died, Mitch and I have another new normal. We live a new life that eerily looks similar to the one we had before but in most ways is quite different. My new normal involves a balance of happiness and sadness all at once (an indicator of emotional maturity, my therapist assured me!); it is a feat that I did not know existed before.  Simply you could be either happy or sad, I thought. And when I was sad that lasted all the way right up until I was happy again. Now it's both at once. There's room for joy in a broken heart...and that means enjoying each day as much as possible, seeing the joy in life because that is one of the things that Miles helped us to do and knowing that we are missing Miles every moment, knowing that the world can be tragic, knowing that it should have been different for Miles and for us. We should have been able to keep him. He should have had a full life. Yet here we are--knowing our love for Miles, carrying the pain, living on, keeping him in our hearts. That's the new normal.

Learning that I was pregnant with our second child added another layer to our new normal. It was normal to be joyful about expecting our second child, normal to be reminded of the joy we felt when we learned we were pregnant with Miles, normal to know how much happiness Miles brought to us during his four and a half months here, normal to be terrified over how little control we had over our second child's health, normal even to just hope that we will carry our second child out of the hospital, normal to grieve that Miles and his sibling will not be together.

And it was normal to immediately understand that it was news to share carefully. Mitch and I waited a long time to tell most of our friends and family about our second baby. We needed plenty of time to have the news just between the two of us, to feel all of the emotions together first.  And, most of all, it made me cry to know that already people were uncomfortable talking about Miles (though I thought about him just as often as I figure any mother thinks about her first child), that with time he was talked about even less because it was uncomfortable or because it was time to be "over it", and that talking about the new baby would become the easy go-to conversation (as if a new baby took away the pain of losing Miles and somehow made everything ok again). I wasn't ready for that. I wanted for everyone to be so happy that we were expecting our second child and to know that it didn't change our devastation over not having Miles here with us every day. Waiting to tell people didn't change their comments, their reactions...but it bought me time.  To be more ready, I guess, to live with the new normal.