Shadow

I used to think that maybe our souls were like shadows. More specifically, like shadows from Neverland – Peter Pan’s shadow. 

I imagine my own shadow is more translucent now as I struggle to connect with others – more than just the shallow passing words. There is a cannon-blasted hole where my chest should be, the emptiness echoing with every chime from my still-beating heart. That’s the hole that you left behind. My heart beats on, because it must, but there is no fixing this ragged, ugly space left behind. This desperate, yearning, sacred space.

I'm feeling all used up today. Crinkled along the edges, wilting. 

Lessons

I'm lying here in bed, worrying about how long my grass is right now.

Seriously. It can wait until tomorrow. The last few days with my girl have been wonderful.

Today is a gift. Embrace it, enjoy it all you can. Make as many happy memories as you possibly can. Feel joy, and spread joy.

I feel like I'm learning these life lessons more and more now that I realize how fragile life is - how so much can change in an instant. I'm doing my best to dedicate my life to making sure Amelia's beginning is good. That she is good.

We were at a lovely wedding tonight. There were speeches read by the bride and groom's siblings.

Each speech was expressing thanksgivings for having a brother/sister along for the ride. For having a best friend and guinea pig.

Yeah, I kind of melted. I cried. The newly married the couple are wonderful people who will be very happy, that I have known for a very long time. It was beautiful.

But I still felt such sadness that Amelia wouldn't get that. And fear, too.

Anyways, it's much to late and surprisingly difficult to organically blog on my phone.

Advice

I think of myself as a very steady personality. I'm not volatile, I pretty much go with the flow and maintain a happy face. It's my heart that has it's good and bad days. I've realized that I really need to take care of my heart first, before I try to keep up a social facade.

I read this today, from The Carson Project (http://www.facebook.com/thecarsonproject) "When I let you know I'm having a bad day, that I'm grieving and I just can't make it, I can't worry about how you take that. My healing depends on it. My healing depends on my honesty. My healing depends on who I am and what I am, and if I can find my own truth.."

That completely rang true for me. I can't worry about how anyone will take my truth. I have to be completely honest about it, and I can't let my pride stand in the way of my healing. By telling people I'm fine, it's like I'm giving them permission to rip out my stitches. And then I'm recovering for days after, trying to emotionally limp through each and every day. 

That's the best advice I can give anyone these days - be honest. Be honest with yourself, and then with everyone else. Don't hide your grief or your pain for anyone's benefit. You need to learn how to live with it. You need to crawl before you walk - and grief is such a burden, you really need to learn to balance it in your life and on your shoulders. 

Amelia was picking dandelions in the back yard (don't worry, we have a ton, ha!) and making wishes. I asked her what she was wishing for today - she said, "my sister!"

Oh, how my heart clenched. She then made wishes for her baby brother, but a lot more for her sister. She's been talking more and more about Henry lately. She likes the idea of having someone to play with any time. 

Whispers

I've been toying with the idea of a tattoo since Henry was born.

I remember laying in the hospital bed, looking out the window at the trees. Sparrows flew in and out of the branches during breaks in the light rain. I watched the rain and the birds every time they took Henry from me - either to check his stats or to pass him to a family member. When he wasn't with me, it was hard - I was completely drugged up, and I stared our to keep from crying. We had no idea how long we would have with him.

Since he's been gone, I've seen sparrows as little messengers of love from him. Little loves - kind of in the same fashion that people say that a found penny is a penny from heaven. I went to my tattoo artist, put down my deposit, and she drew up Henry's Sparrow. It's beautiful, and it's one of the few tattoos that I have that will have color. It's going to be a watercolor tattoo. I love the style, and it's kind of perfect for him - washed away but still making an impact.

Yesterday was rough. I was mad. I felt cheated that Jason couldn't celebrate his second Father's day as a father of two - that Amelia would someday feel as lonely as I feel without a sibling. I want her to connect with someone, to have someone to look out for - and to look out for her. I want her to have a sibling in every sense of the word. I know how lonely life can feel without it.

So, I was going to drop Amelia off with grandpa, and walk over to the tattoo parlor by his house. I was going to throw my money down and just do it. Damn the consequences, forget the bills to be paid and the mortgage, the broken side door, the broken windshield, groceries.. I didn't. I played along with life's little game and just went with it. There's so many bills that we're behind on, so many more responsible places to waste our silly money.

But this morning, Amelia called to me from her room. She was in there, getting ready for the day (her responsibility is to get her jammies off and into her laundry basket), and she yelled, "Mama! Do you got your birdie tattoo yet?"

I need to be absolutely clear - I've never taken her with me to see my artist. She's never heard me talking about Henry's Sparrow. I've never said it out loud near her, she's never seen the draft - she should have absolutely no knowledge about this. At all. I couldn't breath for a full minute. I just told her that no, I did not have that done yet.

In the car, I finally asked her where she heard about the birdie tattoo. First, she said Zack - because everything is Zack. Then I asked her again, and she said, "Baby Henry, he's happy."

I lost it, internally. I try so very hard to keep it together for her. But my eyes filled and my heart swelled as I replayed her words in my head. He's happy. He's happy. Mind you, she thinks that the opposite of sickness is happy. But still - he's happy. I wonder if he came to her last night. I.. I just don't know. I'm floored.

Maybe she won't be as lonely as I thought. She might not be able to look out for him, but he can look out for her - and through her, Jason and I.

Because now, my end goal is to get my tattoo started. My artist moved, I'm going to email her and set up a time. This is for me, and for Henry.

I've been melancholy over the past few days. It hasn't been dragging me down; but my mind is in the past. We attended Charlotte's memorial last weekend. A year to the month from Henry's memorial.

Life is funny sometimes - both funny, ha-ha, and the bang your funny bone type. Sometimes I start to see how everything is connected, and then I start grasping at those connections to find that they are as fine as spiderwebs. These connections fall apart before I can even grasp at them.

I saw this statement in a store over the weekend: "There will always be a reason why you meet people. Either you need them to change your life, or you're the one that will change theirs."  I'm starting to believe in this again; almost beginning to acknowledge my heart's belief in God again. It's been a hard road, but the belief is returning slowly. It hurts, too. Like when your foot falls asleep? That pins and needs sizzling sensation, but in the soul.

It started when I had a dream about my grandfather. He was playing with two kids - my son, and little Charlotte. Henry looks like Jason, but he has my eyes - the shape. They're as blue as Amelia's. He has my hair, the curls, but the impossible white that will eventually turn to brown. A lot like his sister's hair. He has a dimple in his left cheek. My little boy is chubby and elfin and perfect in Heaven. His friend, Charlotte, is playing with him - so much like her brother plays with Henry's sister. Charlotte looks so much like her brother - but her hair is brown and curly/wavy, like her mama's. Her eyes are a little more green than brown, but still. My grandfather was playing with them, they were in the background of the dream -- but they were there. I woke up with a smile.

It was a nice dream.

But back to religion and belief - I don't know how I would have made it through the last year without my dear friend, and a wonderful group of women that I've met because of our loss. My dear friend, Charlotte's mommy, and I never really connected before - our husbands are great friends, but they moved away before I got to know her. They moved back just in time for Henry's memorial. And then, this winter, they found out about baby Charlotte, and her diagnosis - so similar to our Henry's!- and we were able to listen, and understand. Now I count her as one of my dearest friends, a bestie, and I can't imagine life without her and her family. They've become part of our family.

These connections? They feel like God to me.

I feel bad for not writing a post for Henry's birthday/anniversary. His first year in heaven. I was distracted - we found out my mom has cancer on that same day. I was a mess.

Now, for happiness. I had a discussion about happiness with a friend over the weekend; about how we're promoting it endlessly. It seems to me that there needs to be some clarification for our children: happiness is in the moments. It's not a static state of being. Our children need to be free to acknowledge all of their emotions, not just the ones that please us. It's something I'm trying to teach Amelia -- she enjoyed her day at the carnival this weekend, but she got scared on a ride she tried out. She screamed her head off until they let her off the ride. We didn't shame her in front of the other kids - instead, we gave her hugs and told her that it was all right to be scared sometimes, that everyone gets scared. We told her that she was very brave and we were proud of her for trying the roller coaster (kiddie coaster; she was just tall enough and begged to do it - maybe next year!). I'm doing a 100 Days of Happy project on my Facebook; but I'm not trying to be happy all of the time. I'm sharing things that make me happy for the moment (it's probably going to be 95% Amelia and Jason!), but I'm going to try to be very clear that my end result is just to be able to acknowledge my emotions when I am happy.

I'm trying to live fearlessly; except when it comes to my daughter. That's a different type of fear. I'm living fearlessly for myself.

Mother's Day

I'm being bombarded with Mother's Day commercials and propaganda.

This is the best and the worst day of the year. I get to celebrate my children, while mourning for one.

In just under two weeks, it'll be Henry's first birthday. I realized that earlier this week, and it took my breath away. My mind suddenly started flashing images of what should have been. Jason and I should be planing his party, renting out a space, holding his chubby little fingers as he takes his first toddling steps. Amelia should be busy teaching him to be naughty and how to get cookies for breakfast. We should be elbow-deep in diapers and having family snuggle time. We should be laughing, crammed into our little house, full of love.

Dammit. Dammit. Dammit.

Being in a completely different place may be helping. I've got wonderful support, but my chest still aches. My arms ache to hold him. I hold babies all the time - but none fit the space where Henry was supposed to be.

We're going to make bandanas/headbands for the Faith's Lodge 5k next weekend ( http://tinyurl.com/walkforhenry ). I chose a bright yellow color, to remind myself that he's here, in the sunbeams. I try to imagine him snuggling with my grandparents in heaven - but I just keep on visualizing what he would have looked like today. His hair would be brown, and his eyes would have started to turn to green. He'd actually start to look more like Jason, but his hair curling would curl like mine used to - so unlike his big sister. And this is why I can't breath anymore. My chest aches, my arms ache.

I don't know how Mother's Day is going to hit me. I've been dreading it since we first learned of his diagnosis.

Nights like this I can't handle.

Every night this month, I cradle Henry's urn and cry. I think it's the Easter story that everyone rejoices in.

Even if there is eternal life, I am spending the rest of my earthly one without a piece of my heart. Every night I've been sobbing, hoping for a miracle - a ghost, an angel, a saint - anyone to tell me that it's all true; that it's going to be all right.

I wish so hard at these times. I wish so hard that my heart breaks again, and again, because I know it's so silly and stupid.

Holding the Memory

I'm feeling very driven today.

Now that I'm in a different work environment, I feel like I'm healing more. I'm absolutely crying less - significantly less in the last four weeks. But I'm still nervous about our year anniversary. I don't want to lose it. I want to keep my son's memory in a happy corner of my heart. I don't want the sharp sting of tears to mar the beautiful day that we were lucky enough to meet him.

I want to celebrate that day; I'm yearning to celebrate his memory.

Now. As to how - it's a Wednesday. May 21st. I'm almost thinking a benefit, or a fundraiser - something to financially benefit the organizations who helped us so dearly. Without Now I Lay Me Down To Sleep, I would NEVER have these gorgeous photos of my son. I wouldn't have thought to take any. And Faith's Lodge.. goodness. I can't begin to explain how much we started to heal there.

I just don't know how to organize anything like a benefit. What would we even do? I'm overextended as it is; do I dare take on more? I feel like I can. All I need is a good binder. I'm nervous about asking for donations; asking for help. I'm not one to ask a lot. I pride myself on being self sufficient - much like my toddler, I can "do it myself!"

I want to do this - but I don't even know where to start. Any ideas? Anyone?

Church

I keep on looking at churches. There's one that I've promised to visit, a number of times, just to check it out. Sunday comes -- and I just can't. It's not that my faith is shaken - I'm not quite an atheist yet - but.. I'm angry.

I see people talking about God's plan. I hear the opposite side, that God doesn't have a plan, s/he is just our creator and best friend, laughing with us in the good times and crying with us in the bad, but never leaving our side. To this I say - yeah, sounds nice.

Then I start thinking about miracles. Just how much do you have to pray for a miracle to happen? How much do you have to believe? I prayed for my son, I cried and screamed and begged. We didn't get our miracle. Why? Were we not good enough? Weren't we nice, generous people? That's enough to make you hate whoever it is that is in control.

And then I'm told, 'everything happens for a reason.'  Bull. I didn't sign up for this.

I still feel like there's.. something. I don't know, I'm not pretending to know. But if this force of the universe is really in control? Smiling benevolently on some and not others? Then I'm angry. I'm engraged. Honestly, I think this relates back to my Mary rant from December.

This is why I've been avoiding church. The anger has been building, and I've finally acknowledged it. I'll probably lull myself into believing that my own God is just someone to hold us while we're falling.

But I'm still angry, and hurt. I'm coping much better now, but apparently my heart is seeking to place blame somewhere, still.

Jason and I went out last night, and we were finally able to talk. We talked about us, our life together, Henry.

It was so overdue. I'm a lucky girl, to have found the perfect mate for me.

New Beginnings

I'm entirely too busy to type up a formal blog post, but just an update - I'm not reliving every moment from last year. I'm still using my car as a private crying booth, but, it's not turning the knife every hour.

Progress. Henry is always with me, and I don't feel bad for missing him. I do feel bad, however, for reliving my own feelings as we approach his first Angelversary. It disrupts my desire to celebrate him, it makes me feel like I'm wallowing rather than being a mommy he can be proud of.

Amelia is, as always, completely amazing. I love every minute with her.

52 Weeks Later..

52 weeks ago we found out Henry had HPE. One year. I'm trying my hardest to keep my mind distracted, keep me from reliving my feelings from last year. I definitely don't want to relive my amnio.

And now this is my last week at my clinic. I've accepted a position at my alma mater. I'll be assisting the nursing program faculty in their day-to-day operations. It's a really exciting opportunity - and terrifying.

I'm so pumped to start again. To be in a completely neutral environment. I'm also terrified to be separated from my work-family -- these ladies are amazing!

But, I have to do what's best for me. And my mental health.

But.. seriously? I'm so excited. The position I'll be in is more towards my career. I'll have more responsibility, better hours, and I'll get to work with some seriously great people.

Not to mention, it's closer to home, my gym, and my family.

Optimism wins again!

This is my affirmation for the day. Saltwater, by Finn Butler.

Milestones

It’s almost January 25^th. That’s the day we found out that our expected child was a boy – our little Henry.

I’m getting used to faking it. I’m able to function with other people, be in situations, without completely losing it. I've been good about even being alone.

But this week has been different. My mind keeps on going back a year. I've been involuntarily reliving everything. A year ago, I never would have thought I'd be in this position. Everything went so wonderfully with my pregnancy with Amelia that I never would have even guessed something like this could have happened to us. We didn’t know anyone else who had carried a nonviable baby to term. Well, not nonviable – incompatible with life.

I remember reading that term for the first time. I don’t recall the website, or the article. Just the phrase. And my baby moving inside of me. His strong kicks and his stretches.

I remember waiting for the second ultrasound to look into the cystic images we found with the first. I remember the fear, the knowing that something was wrong. I spent that weekend in a constant state of anxiety. For me – that’s acting out rather gregariously. We went out, I laughed too loudly, tried to be too bright. I tried to talk myself into buying his bedding set – we had decided on a nautical and aquatic theme for his bedroom. I made these plans to make my feeling not true. I tried so hard to believe that I was wrong.

We thought he’d just have a disability. We thought he’d have a hard life, and we’d have a difficult time raising him. We never even thought that he would die.

The last few days, I’ve been alone in my car. It’s really the only time I get to myself. After a moment, I feel something break inside of me – right in the middle of my chest. It’s the walls I’ve been painstakingly constructing over the last few months. I can’t contain the emotion, the pain, as well anymore. I feel like I’m on edge.

Again, I’m in this constant state of anxiety. I’m really tense, I’m trying a bit too hard, I’m either incredibly outgoing or quiet. When I’m quiet, it’s because I can’t speak. It’s because I’m trying to keep my little emotional dam in place. Because, I need to function. Writing it out is helping me understand my thoughts, it helps me acknowledge my pain so I’m not choking on it all day. I can’t drown. I refuse to sink.

I just miss you, Henry. I miss the future I dreamed for all of us.

It seems like every time I get through one big milestone, another is staring me in the face.

We made it through the holidays. Barely.

Now I'm sitting here, with my beautiful daughter shoving ravioli all over her face, and then I realize -- at this time last year, we were so blissful. But twenty days later, we found out that "something" was wrong.

January 25th.

I'm not writing very much here right now. It's all very dark, and I'm trying to avoid posting that stuff. But I'm trying to work through it. While I've been doing this, I feel like I've realized something may be wrong with me. I'm always alone. Not physically. I feel like I talk a lot, but, while I may make friends.. I don't feel like I have any. I don't feel connected to anyone. I don't think I really ever have. I feel like I've been so independent for so long -- I think I'm a little screwed up. I feel like I have a million acquaintances, but no friends. If you consider myself your friend, please don't be insulted by that statement. I value everyone close to me. But. I don't know if my heart is operating the way it should be. I feel like everyone is just passing through. I don't want to use the word disposable for anyone -- except for maybe myself.

Maybe that's normal for this stage of grief. Maybe I'm just cycling through it.

I am in a dark, dark place right now.

All I want to do is lie down and will myself into nonexistence.

I didn't think people knew what they were talking about when they said the holidays are almost worse. Because they are.

Jason and I bought a stocking last year. We knew we were pregnant. We bought a red velvet snowflake for our second child. And found it yesterday, putting up the tree.

Today I just want to be done with it all. I'm angry, and hurt, and betrayed, and lost. My chest feels like there is a sucking wound - with every gasp, it feels worse.

I know, I know, ups and downs. But I didn't think it'd be this far down.

Depictions

I spent a long weekend in New York City with one of my best friends.

It was a necessary escape. I can't thank her enough for offering her home to me. We spent the weekend pounding the pavement, with her playing the role of tour guide.

I was quite proud of myself. I only broke down twice -- once at the Metropolitan Museum of Art, and once in St. Patrick's Cathedral. 

I think I felt mostly anger at St. Patick's Cathedral. It was gorgeous, and there were psalms being sung.. I was moved. And then I saw, just outside of the Lady Chapel, a statue. It was lovely. It was Christ, dead in Mary's arms, tortured. And she looks beatific, peaceful. 

I'm sorry, but, I don't think that's necessarily the best depiction. I feel like it cheapens her. Sure, you can have faith and trust in God. That's not the part that is in question for me. But.. it's her son. It doesn't matter if he's coming back. At that point, she doesn't know. I don't understand why Mary is never depicted as anything other than a gently smiling Mona Lisa figure in the background of the New Testament story.

I relate to her more than most people now. And I just feel that, at least someplace, she should be real. 

Holidays

I'm continuing my trend of attempting to be completely and viscerally honest here.

The holidays suck. They really, really do.

I can see Henry in my mind - exactly how he would have looked. I can see him in my mind at six months, a year, twenty years. I can't stop it. He's living in my head.

Not in a creepy way -- I know he's gone, but, it's there. I'm struggling with the milestones. Thanksgiving was decent enough. We kept it low-key, and mostly enjoyed the naps. But Christmas.

Oy.

My husband and I were talking this morning about ways to make it better. We're involved with a group of other parents, bereaved and struggling with the holidays as well. There's tons of advice out there to lessen the sharp edge of grief, but really, you have to make it your own.

So. Our way of making it our own. We want to donate. We want to make it a tradition, every year, that we pick out a toy that Henry would have liked. Amelia's going to help us every year. We'll pick them out, and find a good charity (Toys for Tots, maybe?) to send the gifts off to every Christmas.

I'd like to open this up to everyone.

If Henry has touched your heart in any way, won't you consider reaching out to others?

If you do, I'd love to hear about it. Either on my Facebook page [https://www.facebook.com/MinneapolisMom] , or here. <3

So it begins.

I guess I didn't believe the other moms when they told me that holidays are the worst.

It just hit me. Like a semi truck.

We should be feeding my boy sweet potatoes tomorrow. We should be laughing about what Christmas will bring. There should be joy.

I've promised to be gentle with myself. But the pain is growing. I feel so raw.

Screaming silently through the night.

Recapping the Milestone

So much for keeping up with the Thankfulness Challenge. Ooops.

I'm not going to recap every day, because I really don't remember each day. I remember highlights.

For instance, last Wednesday..

My husband had wrist surgery.

I went to the Cities 97 Sampler Release Party. With my mom. 

The funny thing about the Sampler Release Party is that there were four bands, and each played four or five songs. It was like a mini-concert. A taste. It was lovely - I was able to see The Wild Feathers, Matt Hires, the Unlikely Candidates, and (my favorite) Delta Rae.

 I lost it, though. During 'Dance in the Graveyards' - I broke down. I'm sure I looked like a cheesy fan girl, but, that song kills me. It's exactly what my father, and my husband, would say/request. And on the day before Henry's six month anniversary.. I was emotional.

We were in the very front - standing room only - second from the stage. It was beautiful, and a wonderful experience.

Thursday - I woke up just sad. I'd been dreading this day for months. Actually, in a small part of me, I've been dreading this anniversary since before he was born. How would I survive his death, much less the following milestones? A month without my family together. Three months. Half a year! How could I possibly go on, without both of my children in my arms?

Thursday morning, I tried to just be mindless. But my heart knew. My body responded to my heart, and not my brain. I shook, I wept. Mindlessly. Grief poured out and I felt like I was drowning all over again.

I put out a call, here, and on Facebook. I asked you all to make someone's day bright. To encourage kindness - in honor of my Henry. Our Henry. And you did. That afternoon, I felt so bolstered up.. it was stunning. It was magical. It felt like I was in touch with Heaven.

Yeah, I know, sounds crazy. But it helped. It really, really helped. You are all amazing.

I actually felt good enough to venture out. I went to a belly dancing class with a good friend on Thursday night. It felt good to stretch my body out -- I felt like I was twisting the last few tears of the day out. I'm always going to cry for him, but that night I felt as if he was still with me. I carry him around with me, tucked into a pocket in my heart. My Henry pocket.

Friday.. Friday was a day. I was exhausted from work, and I just wanted to snuggle with my Amelia -- mind you, I've been out every night since Wednesday, that's a HUGE deal to me, the mommy who never leaves! -- and I was feeling really guilty. But we had tickets to Catching Fire. And it was the eve of Jason's birthday. Yeah, we needed to go. Amelia hung out with (grand)Pa-pa, and we left.

By the way, fantastic movie. I just missed my kid.

Saturday -- okay, okay. I'm not trying to chronicle every single day missed. But this day was pretty important. It was Jason's birthday. He turned 33. That's a pretty big birthday - and we celebrated with our family and friends at the bowling alley. All Jason really wanted for his birthday was to take Amelia bowling for the first time. She loved it.

One happy daddy. He loved helping her -- he even found her 'mark'! Our scores were 203, 152, and 78. I was quite pleased with my 152. Jason bowled his average. Amelia rocked the house!

Jason received tickets to the Gopher's game for his birthday. November 23rd. In Minnesota. IT WAS COLD. But it was really, really fun.

Brr.

And, in closing -- I'm thankful for all of the above.
 - That I'm actually able to breathe after Henry's six month angel-versary.
 - For my amazing husband
 - My wonderful daughter
 - Great friends
 - Feeling like a teenager after curfew - coming home late to my toddler!

Turn it around

Okay.

Okay.

So it's been six months since Henry died. I'm struggling. I'm keeping my happy face on and staying busy, but I'm writhing. My bones feel like they're curling up on themselves, my stomach has dropped, and my eyes are constantly filled. It's rough. I'm not thinking - I'm refusing to actually think - but it doesn't change my physical reactions.

I just want one thing from all of you today. Just one thing.

Could you please go out and do a random act of kindness?

No, seriously.

Go out of your way for someone today. The weather is grey, people are a little down in general, and I really want to see kindness propagated.

Please? Just one kind thing. Pay for the person behind you in the drive thru. Open the door for someone. Give to a charity. Smile at a stranger.

Henry's not here to make our world better. Let's make it better in his stead.