Wednesday, May 9, 2012

Pain

There is so much pain in life, so many tragedies that we can do nothing to stop so why, why, why inflict pain on people when we don't have to: specifically, why North Carolina must you ban gay marriage?

Monday, May 7, 2012

One line: Be in this moment

Out of the stroller and finally into the actual shopping cart seat makes Elliott the smiliest baby in town, and she looks at me each time we start and stop the cart with a million-dollar-heart-melting smile and a look that says "This is just the best moment of my life" and I smile my best smile and feel the moment and know "Be in this moment, be here right now, you have no where else to be."

Sunday, May 6, 2012

One Line A Day: The Beginning

It has been months. And I don't write. Not because there isn't anything to say, but because there is too much to say, I've decided. Too much to say and the words aren't easy. So many feelings repeat, repeat, repeat: how can this be? how heartbroken am i not to have miles with me, living the life that he so deserved? how overjoyed am i to have elliott in my life, in my arms at this moment? i am the mother to both of them, my heart is with both of them, and this is now me? For my "new normal" of a world where Miles' spirit is around me and with me as I carry him, it is this with each breath: my love, my tears, my laughter is with my husband, my baby Miles, and my sweet girl Elliott. Always plus one. Still. Always.

So maybe I'm almost done blogging. While my love for my Miles, my joy over his life, my pain for his loss are certainly not fading, maybe my days of writing are fading.

But I need to find the words. And so I will try one line a day.

One line a day. It will be easier, I think. The task of writing just one sentence is surely one I can tackle, I encourage myself. Yet, there it is again: if there's so much to say, the limit of only one line seems impossible. Surely it will only tell part of the story. But that is life at times, isn't it? Sharing snippets, making sense of one bit at a time. And the only way to get the whole story is to put all of them together, a lifetime of them, it seems.

My line today:
Elliott stands while clutching the couch, she laughs, she claps, she plops down to "read" her books, she sucks on all strings she can get her hands on, she takes my breath away and leaves me thinking: the days are long but the years are short.

Tuesday, February 28, 2012

"Enjoy every minute"

There's nothing like carrying a 22 pound baby strapped to your chest. Seriously, I love it. Every day, Elliott and I go for an afternoon walk. She rides in the front carrier facing forward--it's the one that pre-baby I found absolutely hilarious...it always struck me as funny that the baby is just stuck there with arms and legs dangling. Now, however (like many things that immediately changed once it's me who was the parent as opposed to the person on the sidelines), I love it. It's one of the greatest inventions of all time, and I love having a way of going for a walk without a stroller and without my arms falling off (this is what happens when I hold her for longer than 5 minutes these days). I love how close she is. I love it.

So on today's walk a woman--with grown children she ended up telling me--commented on how cute Elliott was and then said, "Enjoy every minute...it just goes so fast."

She really just intended to be friendly. She was reminiscing about her babies. She was giving pretty true advice honestly.

"Ok," I said.
"You know nothing about me, and you really have no business saying that to me. No one knows that better than I do," I thought.

It was just a small encounter, and I'm not upset with her or anything like that. It got me thinking though. I do enjoy every minute with Elliott. Just like I enjoyed every minute with Miles. It's fair to say, however, that I do not enjoy it when Elliott is screaming before taking a nap, and that's ok, too. I'm beyond happy and beyond grateful for having her in my life, having her here in the world, but honestly "enjoying every minute" includes some really tough times (and it's completely possible to say "Oh my gosh, these are the exact kind of problems that I'm happy to have and I'm so happy and it stinks that she's screaming right now!"). This was true for Miles' life, too. I enjoyed every minute of having him here but was beyond upset when I had to leave his side or he had to have procedures or I didn't get to hold him when he was crying.

I have more than my fair share of perspective these days. It's something I would give back if I could, if it meant that I could have Miles instead of all this perspective. That's not the way that it works of course. So I have all this perspective, but I try not to say things like that to people. I guess I think it's not really all that helpful to spout out "helpful perspective" to people with "less perspective"...that's just not how it works. Everyone is trying to enjoy life simultaneously with just trying to survive it, I'm thinking. It's sort of like we all have this painful spot (for me it's the heartbreak of losing Miles for another person it's the heartbreak of not being able to conceive for someone else it's the heartache of not having a life partner for someone else it's yet another heartache). It's like we all have a personal sadness--and there's no comparing sadness...your own sadness is simply the greatest sadness there is no matter how compassionate you can be--and we manage the best we can with it. And if that's true, "enjoying every minute" is rather easy because you know how important every minute is yet it's also impossible to do because perspective simply doesn't take away the pain you--it's a hard road, that I know. I guess that having your eyes open to how beautiful every moment is can coincide with knowing how painful it is, too.

Wednesday, February 8, 2012

I am the mother of a heart baby

I am the mother of a heart baby. And that's when you really start caring about congenital heart defects--when it's your child.

Before I became pregnant, I knew a bit about heart defects. A bit. I knew that my brother and his wife were pediatric cardiologists. I knew that some babies have heart problems. I knew that there were surgeons who did heart surgery on tiny baby hearts. I knew that there were success stories and heartbreaking stories--though now I can see that I didn't know what that actually meant.

I didn't know that heart defects are as common as they are in babies (1 out of every 100 born in the United States). I did not know that there are so many unknowns as to why heart defects happen. I did not know that so little money goes to researching congenital heart defects in comparison to other things.

I did not know that my baby would have a heart defect until all of a sudden he did. I did not know that Miles' heart defect--heterotaxy with a double outlet right ventricle defect (among other things) affecting approximately one in a million babies--would take his life.

It's congenital heart defect awareness week.

Monday, February 6, 2012

She brings us happiness, there is no question

I wonder what life will be like for Elliott.

I focus on each day with her--drinking up the moments, delighting in her new laughs, giving her slightly dirty looks when she declares "da da" and nothing else, swaddling her tightly for her naps as soon as she rubs her eyes, sitting silently (she hunger strikes if I talk at all) in our usual chair for breastfeeding, calculating that I've now fed her over 1,400 times (no wonder it feels like it's the main thing we do), watching her roll across the room, feeding her spoonfuls of new foods that she scarfs down even while making faces at it, feeling like the best person in the world when she smiles so big when she sees me for the first time after a nap or from the car seat in the back seat.

There's no need to think too far down the road. Don't wish away right now, I know, I know it so well.

But now, when I see other little girls, I realize that Elliott will someday be a little girl, too.

At the mall, the girl scouts hawked their cookies. I felt compelled to buy them--and not because oh, my, goodness, can I possibly pass up thin mints--but because maybe Elliott will be a girl scout some day and, let it be known, everyone better buy cookies from her. And so I wonder, will Elliott want to be a girl scout? And then there's the little girls' section at the department store is full of short skirts and clothes that make me feel old. Will Elliott want to wear this garbage (and will her daddy throw a hissy fit?)?

Time will tell of course. But then I wonder about some questions that just don't have answers:
Will she feel like the oldest child in our family? Will she have the qualities of an oldest child?

And the most important questions, I realize:
Will she know how much we love her? Will she know how much we miss Miles AND how much happiness she brings us--will she know that both of those things can exist at the exact same time?

Not healing, just dealing

"You've been through so much. It must have been so difficult."

Yes, it was. And, yes, it is. It still is. It still is heartbreaking that Miles died. And both loving him and spending our days without him here are still (and will continue to be, I can be quite sure) daily parts of who I am and what I do. Miles' short life with us, his big impact on us, and our daily life of being always plus one is part of who we are. A significant part. A part at the heart of who we are now.

"All healed up now?" No, no, I'm not healing, I'm just dealing.

In truth, I can't stand the word "heal;" losing Miles is not something that heals. No amount of time or laughter or the endless new joy Elliott brings us changes the fact that Miles didn't get his chance at a long, full life and we didn't get that time with him either. Our child, our sweet fighting Miles is gone; it echoes in my heart. No, I'm not healing. I'm reluctant to use the word "deal" as well because it sounds rather flippant, but it's much closer to what I feel; I am coping, dealing, living with a broken heart. ("A Broken Heart Still Beats" is such a true, telling title of a loss book, in my humble opinion). Miles' death is something that happened in the past, but losing him, living without him here, loving him as the member of our family that he is--that's something we continue to do each day. His loss is something that we live with and isn't in the past and isn't something that heals.

Saturday, January 28, 2012

Happy Birthday, Miles

The day Miles was born was a good day. Two years ago today we got to finally meet the little guy who we had been waiting nine months for. Two years ago. Two years ago.



This photo was taken just a few hours after Miles was born. We had just learned that he had a serious heart defect; we knew he would be having heart surgery in just a few hours. We didn't know we would lose him. We didn't know that we'd be celebrating all his birthdays without him.

He should be here turning two with us today. It will never be right that he's not here for his birthdays. So that sorrow is there, and I won't pretend that it's not. But remembering the day he was born, that's a good thing. His birthday is a good day.  The joy of welcoming him to the world and spending four and a half months with him and the joy of having him in our hearts always are all good things to celebrate today.

So today we'll eat angel food cake, read his birth story*, and lovingly admire all of his beautiful photos in his baby book. Happy birthday, Miles.

* * *

*Miles' Birth Story


My bag was packed with Gatorade, a camera, tennis balls, and Norah Jones—the things that were supposed to be the essentials.  I had narrowed down our 9-month-awaited-baby’s coming home outfit to three options so those were all in; the teddy bear outfit was my number one, but I worried that it wouldn’t be manly enough for Mitch’s taste.  So the giraffe outfit and birdie outfit with matching cap were the macho backups.   Everything was in—even the worst-underwear-from-my-drawer that I’d been advised I’d never want to wear again; I had cross-referenced all the things-to-be-sure-to-pack-for-the-hospital lists because that’s what I do.  
When my contractions started at 2:30 AM on January 28, 2010, I pulled out my childbirth class notebook.  The chart clearly outlined how long each stage of labor and delivery would take, and this was exactly what I wanted—a clear-cut and simple chart for giving birth.  Mitch and I had agreed during childbirth class that staying at home as long as possible was the way to go.  Mitch had scared me enough with the stories of the patients who come to the hospital way too early and get sent home or just clog-up-the-medical-works.   
During class, we had to prioritize which things were most important—I had insisted that being able to walk and being able to get an epidural were my two non-negotiables.  Mitch told me that those things didn’t really go together.  Sometimes it’s not helpful to be married to a doctor.  No matter, I was the one having the baby so I would walk and walk at home and then walk and walk at the hospital until the second I got the epidural.  Lovely. 
According to my calculations, our baby would be arriving late that night.  We had a long road ahead of us that day, and it was best not to think things would move along too quickly.  Dr. P agreed when I called her that morning to let her know that this was the day.  She was my dream doctor; I fell in love at our first appointment.  I knew I was pregnant because I had missed periods and the drug store pregnancy test had confirmed it.  Those tests were cheap, though, and could we get some real medical proof please?  One nurse had already turned down my request for a real-doctor-supervised pregnancy test.  When I asked Dr. P though, she agreed to do it.  Unless of course I just wanted to hear the baby’s heart beat for the first time.  Yes, please, that would do it.   And with that, I had the confirmation that I needed and finally believed that this baby was the real deal holyfield.  And icing on the cake: she called Mitch’s phone and left a message with the new little heart beat. 
Now, on the day my labor started, my non-stress test was already scheduled for 10:40 that morning at the hospital, and, now that I was in labor that might last a long time, it would be good to know that the baby was doing ok.  Lots of women get these NSTs, the doctors told me, way back when I started the weekly routine, as a way to keep an eye on any babies the docs might be worried about.  It involved me lifting up my shirt to reveal my ever-growing belly so that sensors could be attached with big-mama seatbelts.  I would wear glitter lotion on my belly—to dress the baby up.  And the technicians would tell me, well, I’ve never seen that before.  Then we listened to the baby’s heartbeat, and I rooted for him to move around, put on a show, and do whatever it was that would keep the docs from worrying.  To me, the NSTs were, well, silly.  Still, I couldn’t bring myself not to do them, just in case.  After weeks of NSTs, this would be my moment of glory.  Finally, in addition to checking the baby’s heart rate, my contractions would show up on the monitor as huge mountains.  Huge contraction mountains. 
Just like for every other appointment during my pregnancy, I walked there; we had to take advantage of the fact that from our living room window all we could see was the space-ship-shaped Dean Dome and, off in the distance, the hospital.  So I walked.  It took twenty minutes to walk and then twenty minutes to believe I wasn’t even in labor.  Oh, yes, I felt those contractions, but somehow they didn’t even show up on the monitor.  The technicians were nice about it.  They said I could be having contractions even though they didn’t show up.  Well, that was good.  But then they asked me to go ahead and make an appointment for the next week.  So of course I was confused.  They thought I would have an appointment in a week, so clearly this wasn’t even labor.  I walked home and tried not to dwell on the fact that these contractions—or “pains” as I started to call them since they weren’t classifiable on the stupid machine—were coming faster.  It was a bit hard to walk through them now; I was such a weenie, I thought.  By then it was noon and Mitch was at home waiting for me.  I called to tell him I didn’t want to be alone—in fake labor—and walking around by myself any more.   He was there in a flash, and I told him the whole sob story leaning on his shoulder.  Once at the apartment, I rested on all fours over a bowl of yogurt and cut up apples.  Between pains, I ate bites and explained the pains to Mitch.  That sounds like contractions, he insisted.  He had the same look on his face as when he woke up in the middle of the night to find me webmd-ing salmonella to make sure I didn’t have it.   Not good. 
With our kitchen timer, he started timing them.  Three minutes apart.  One minute long.  He called Dr. P to leave a message that it was probably about time for us to come in to get checked. 
And then he simultaneously ate his own lunch, timed my contractions, answered my cell phone, and bragged to my brother. 
“Yeah, your sister is punching out contractions here…”
Mom arrived with a bag full of goodies—playing cards so we could play spades or war to pass the time.  She was prepared for a different version of childbirth, but she changed gears quickly.
“Do you think this is real labor?” I asked from all fours on the floor.
“Yes, and I think you’re further along than you think.”
With that, we all believed it was time to go to the clinic to get checked.
We walked. 
In all fairness, it’s not a long walk, and I had made it clear to everyone that walking was my main game plan.  I had even written it on my birth plan: walking.  Right next to: no mirrors.  Plus it was only around 1 pm.  We still had hours and hours to go.  After all, I was just at the hospital not having contractions.
We made our way to the clinic in two-minute chunks.  During contractions, we would stop so I could breathe-it-out. 
“We think I’m in labor,” I said to the curious and slightly-concerned moms on the playground as we slowly passed by.
            “What if this isn’t it?” I asked mom, nervous that I was being a drama queen in front of too many people now.
            “This is it,” mom said.
            At the clinic: 7 cm.  Well, la-di-da.
Mom ran-walked back to get the car.  She drove us back to the apartment to get my bag because, in the frenzy, we didn’t have that stupid bag that had been packed for weeks.
            She floored it in her little convertible.  I’m pretty sure I even said, “You don’t have to drive that fast.”
            And I’m pretty sure she said, “I always drive like this.”
            With bag in hand, we were off.
When the next contraction started, I yelled for mom to pull over.  She did and I rolled out of the car to huff out a contraction on the sidewalk.  
“You have to stay in the car!” Mitch yelled from where he was trapped in the tiny backseat of the convertible.  I laugh now when I think of him trying to deal with me at that moment.  They don’t teach you how to handle this one in med school or childbirth class.
Still, I refused to sit down.
We negotiated that I could be in the front seat on my knees facing backwards hugging the seat.  With such clarity, I could immediately see that this was without-a-doubt the only comfortable position for a laboring woman, so I briefly wondered why I’d never seen another woman going to the hospital like this.  Maybe one of those it’s-better-if-they-don’t-know things?
It got us there.  With about an hour to spare.
I could only handle the contractions if I was standing and leaning forward with my arms on Mitch’s shoulders.  I was loud.  I remember that.  But I don’t remember the sound exactly.  It wasn’t yelling.  It wasn’t grunting.  I can’t put my finger on it, but the only thing that comes even close is lowing.  Painful lowing.
There were lots of directions from Mitch: “You have to sit down.”  “You have to breathe.”  “You have to put on the hospital gown.”  “You have to let them put an IV in.” 
My favorite was: “Remember the breathing techniques you learned in class.”
That meant, of course, “I don’t remember the breathing techniques they taught you in class, but let’s hope that you do.”  
By the time I followed his advice to put on the hospital gown and sit down:
9 cm.  No time for drugs.  Later this would make me a superwoman of sorts and a major-hypocrite as well.  How could I be joining the group of psycho women I had always either made fun of or severely insulted? 
It was so hot in the room that I was sure I would pass out.  That had been one of my fears when I thought about childbirth.  Stressful times weren’t always my shining moments.  I had proven that a good old vasovagal response was in my repertoire twice in the past few years. The more memorable one was when we first moved to Brooklyn for Mitch’s medical rotations.  That was the night Mitch woke up yelling every cuss word I know.  Charlie horse!  I jumped up and ran through our very-tiny-so-how-can-it-possibly-be-this-long apartment to get water.  The yelling doubled because so had the pain; Mitch had a Charlie horse in each leg, a physical feat that I didn’t know even existed until that moment.  I started running back with the water, and that’s the last thing I remember.  Mitch heard the thump of my body hitting the floor.  He called my name, and I didn’t respond.  So with his double-Charlie-horse-legs, he had to Lieutenant-Dan-style drag himself through the apartment to save me.  When I came to, I was sweating and could think of nothing but vomiting and going to the bathroom at the same time.   Mitch put me in the bathtub and turned the shower on.  Though I can and do laugh now about it, passing out was not a joking matter on this day and was certainly not part of the birth plan.
So I was hot and stressed, opposed to the calm, hydrated, and conscious birthing woman I wanted to be.  Mom was wetting paper towels with cool water to put on my forehead.  After only a matter of seconds, the water was no longer cool, and I was just lying there with wet-hospital-brand paper towels plastered on my head.  I was still hot and now pissed. 
“Gatorade,” I said.
Mitch and Dr. P glanced at each other.  Later Mitch told me it wasn’t good to drink too much because you could throw it up.  But mom was already proving reason number one to have your mom on the birth team by marching right to my bag to bring me the Gatorade.  I guzzled most of it before Mitch took it away.  And I didn’t pass out.
10 cm. 
The contractions and pushing were intense.  The time in between critical for recovery and gearing back up.  It was physical—like an athletic event, but of a sort without my sneakers and pants—with the breathing, bearing down.  And it was emotional—they could see his head.  He was coming!  And, no, I didn’t want to touch his head with my hands; I could feel it just fine already, thank you very much. 
Push through the ring of fire, Dr. P instructed.  At the time, it was such good advice.  Now, I can’t make sense of it and wonder if that’s actually what she even said.
Such intense pain and then, in a heartbeat, the pain was gone.
Miles Jonathan Mitchell was here.  Our sweet Miles.  He was perfect.  He was ours.  We were in love.  
Dr. P handed him to me.  We held him and took a video that includes me saying something entirely lame that I wish I could blame on drugs and then mostly features the floor and ceiling of the hospital room.  We were new parents and it was one of the happiest moments of our lives.
And that was it—childbirth—four and a half months later I would realize, the easiest, least painful part of motherhood for me.   

~

That’s how we remember the day.  It was perfect.  Yet, when I retell bits of it now, I cause an uncomfortable squirm in others or at least a heavy sigh.  That’s because they know the rest of the story.  Perhaps they believe that the rest of the story changes this day.  But, for us, it doesn’t.



Friday, January 27, 2012

Inward peace without outward order

I feel really unsettled when the kitchen isn't completely clean. As in, Mitch says, "I'll finish those dishes later" and I have to walk away and brainwash myself to pretend that I don't know that the dishes are just sitting there, waiting to be washed. Then I can't walk by the kitchen (tough in this one bedroom apartment) because it just feels wrong to see a mess and not do something about it. Outward order leads to inward peace--yes, I'm definitely one of those people. Which explains why the bed has to be made in the morning before I can get my day started ("Are you seriously making the bed with me still in it?" Mitch has asked when he stays in bed longer than I do and I'm ready to get going. Oops.). My inner calm.

That's me--I can't live with the unsettled feeling of dishes in the sink or an unmade bed. But I live with the unsettled feeling of something infinitely harder, something that actually matters, something that--at its essence--can only have a certain level of peace to it, it seems. Oh, my Miles. A mother in the world without one of her children...can there be a "settled" place there, can there be true peace in that soul? The peace, I've found, must be in coming to an understanding of sorts of how it is to not have my family together in this world, to have a sorrow that will be constant, to live with a joy that once was and has to be carried on. Inward peace without outward order--that's the person I have to be now.

Wednesday, January 25, 2012

This too shall not pass

It feels like being an optimist in a shattered world. The life I wanted no longer exists. I am as happy as possible but the amount of happiness that was once possible is broken; happiness being complete is simply impossible.

It feels like I am here, living my life, doing the small things, taking in each day. Because the value of being present is a present from Miles. And it feels like I am somewhere else. I'm in the place where all of my children are.

It feels like the opposite of the reassurance, the relief, and the hope that should come with the phrase "This too shall pass." No, friend, it will not. Many difficulties, challenges, and sadnesses do pass. The death of my child--that is a loss, a heartbreak, a reality that does not pass.

That's what it feels like to live each day without Miles here.

I won't say that's what it feels like to live each day without Miles. Because I'm not living each day without him. I'm living each day without him here.

Tuesday, January 17, 2012

Words aren't enough (a letter to a friend)


Friends of a dear friend of mine just lost their very young daughter to cancer. I have never met them, but my heart breaks for them. My friend asked me for any advice I had for her in terms of helping her friends. By no means do I want to be the "expert" on losing a child. I know for certain that all parents have very different grief experiences. But I do feel that I wanted to be helpful if I could. In fact, I feel a pretty big responsibility because if there's anything that I can do to make a broken-hearted parent's road a little easier (even if it's just by telling their friends to listen and be supportive), I want to do it.

So I wrote this incredibly long letter (and I've omitted the names since I feel that sharing their story is for them to do), but I am left wondering if I've forgotten something or if there's something different I should have said??

Dear Friend,
I’ve been thinking a lot about your friends.  My heart feels for them.  I know that their sweet girl is in a better place free from pain and sickness now; yet I know that we all want our children here with us, and it is heartbreaking to face our days without them right here.
Ultimately—just like everyone else—I don’t know what will be most comforting to them as they remember their sweet daughter and mourn her loss and get day to day without her now. It is so painful, I do know.  I don’t know the perfect way to comfort her so please know that everything I write is just based on my own life and thoughts.  But I can share that, for me, I had times when the only thing I wanted to do was write about Miles, then I wanted to read everything possible about grief and about other parents who had lost children, then I wanted to talk to a therapist, then I wanted to write a “life with loss” blog, then I wanted to find quotes and passages that I felt represented how I was feeling, then I wanted to have traditions to honor Miles’ memory, then I needed friends who would recognize that Miles is always part of who I am.  Mitch often wanted to listen but didn’t want to have to say much; other times, he wanted to just tell me about a particularly sad instance or something that reminded him of Miles. Perhaps they will find those things comforting at times as well; perhaps not. 
I do know that grief can be very isolating, and I am very thankful that they have you as friends to stand by them and to cherish and remember their sweet girl with them.  Life will always be different for them.  She will always be with them, and she’ll always be missing from their family; it’s a hard road. Losing her is the biggest loss (and the one that matters the most), but there are secondary losses that are really difficult as well.  The friends who we cherish most now are the ones who continue to remember Miles with us (even in simple ways) and to know that he is permanently part of who we are. 
One thing I’ll mention can be pretty sensitive but I’ll state in my own experience: I believe that God received Miles with open arms but did not want him to die. God loves us very much yet does not control every detail of life. A brief look around the world shows how much pain and heartbreak there is; I just can’t believe that all of this would be part of his plan. “Everything happens for a reason” is just the most ridiculous thing I can imagine now; I have come to terms with the fact that often there simply is not a reason for things. In short, it was not God’s plan for Miles to die. Any mention otherwise is upsetting and wrong to me. Others, however, find comfort in believing that all happenings including the death of a child are part of God’s plan; I do try to respect that we all have different views on this.  Obviously, you’ll have your own views on this as will your friends, but I just thought that it was worth mentioning because I know that faith is thankfully a big part of all of your lives.
I’m quite sure that “time heals all wounds” won’t be true for me at all, so I won’t say that things will ever be “better” for parents who lose children.  But your friends will find a “new normal,” they say.  She is forever a part of who they are. And I think that your friendship will help them as you’re there to listen, to be by their sides, and to remember her, too.
Love,
Alicia

P.S. As I mentioned on the phone,  please trust your instincts on how best to be a good friend to them now. You are the best, and you did (and continue to do) all of the right things with me. You are such a good listener, and this is the best gift you can give them.  A few last notes…


A few simple things we’ve done that are important to us:
-We started a basket for cards. All of the cards we’ve every received offering supporting or expressing condolences are in there. It’s good to see the basket of cards and be reminded of the people out there thinking of us and thinking of Miles. I imagine it being good to be able to read those cards again someday…though I haven’t actually done it.
-Write down specific memories. We’ll never forget. He’s our child. However, having the memories written is such a good thing to have on special days in the future. It’s important to me to be able to read my book about Miles on his birthday especially.
-We give a special Christmas gift in memory of Miles each year. It’s awful. I would much rather give him be here and to give him a real gift of course. But it’s the best we can do; honoring his memory is a way to make him part of our Christmas traditions. Last year we gave a donation to the Ronald McDonald House. This year we gave books to children at the hospital.
-Make traditions that make you as happy as possible in remembering his memory. We have angel food cake on his birthday. For me, it’s important that everyone feel ok about being happy remembering his birth and how happy we were to have him. Yes, there’s much sadness too because he should be here actually celebrating, but the day he joined our world was joyous.
-Doing what you can is enough. Though it went against every Southern bone in my body, I didn’t write thank you cards for gifts people gave in memory of Miles. That’s really ok. When I could I thanked them in person mostly because this was a good way to show them that it was good to talk to me about Miles. Other times, people wanted to “distract” me from my grief by doing some kind of nonsense. This was absurd. I said “no” plenty if it wasn’t going to be something that felt right to me; I had to teach myself not to feel guilty about that.

** 

So that was the letter. Ultimately I know that I can "fix" nothing for these parents. The one thing that they want--their daughter healthy and in their arms--cannot be. Still I want so much to share with my friend what can help her since she asked...what am I forgetting...what else needs to be said? There's so much that I want for the world to know about being knowledgeable and compassionate when interacting with parents who have lost children...and now I feel that this letter needs to address everything! Ridiculous and way too loaded, I know, but it's like now that I have the chance, it's like words aren't enough.