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.

Six months.

It's too hard to blog today, but I have to say something.

This isn't fair. This is not right. This is not the way our lives were supposed to turn out.

I miss you.

Miracles

This is going to sound really, really nasty.

I hate miracle stories. The, "doctors said our child was incompatible with life and we're proving them wrong!" ones.

Yeah. Awesome. You got a miracle.

We didn't.

It makes me feel like we didn't do enough. That we didn't pray hard enough, that we just weren't good enough for God to save our boy.

I've been reading too many of these stories lately, and each and every one of them make me feel like less of a mother.

Shoes!

In three weeks, I'll be in NYC.

I'll be honest - I'm pretty excited about this. It's the first "me" thing I've done in a long time. I'm so lucky to have a family to support me - and my husband - while I'm away!

Today, I'm going to be thankful for my running shoes. They don't see as much action as they should, but I'm working on that. I was looking at my itinerary for NYC and realized I only have a forty-five minute layover in Washington, DC. I'm calculating de-boarding time and takeoff times in my head while looking at the layout of the Reagan airport. I'm starting to panic just a little bit.

Solution? Carry-on backpack; running shoes. I've got this. And I've run enough in these particular(ly bright) shoes that I'm comfortable sprinting through unknown territory in them.

I was super excited about these shoes. They encourage natural running, and feel very reactive.

There's a whole science behind it, but all I know is they feel good. And they're going to do me a lot of good in New York!

http://www.newtonrunning.com/why/science

So, thanks, people of Newton Running! It's a great shoe.

Work!

I recently asked a question on my work's whiteboard. "What are you thankful for?"

I'll be honest. It was suggested to me - but after hearing it, I had to know. Not only because I'm seriously digging for things to be thankful for (it's not even halfway through the month yet!) -- but because I was curious. The responses so far are wonderful. Maybe I'll go snag a few for later this month..

Anyways. Today, I am thankful for my work. Not just my job, not my company -- the work we do together, in my clinic. My role is small - just the front desk - but every so often I am able to understand the impact I have on patient's lives. My team is amazing - a number of strong individual women (and one gentleman) working together to better our patient's lives. We've got this stellar clinic manager -- I'm not going to name her, because then she might be poached by another clinic, and that's just a big NO. I'm constantly floored by these ladies!

I was just feeling incredibly thankful for my coworkers, and my manager. I couldn't get through the day without all of your shining faces.

I'm at Augsburg College, going for my Bachelor's in Psychology. I want to use this to help people. People like me. Heartbroken, anxiety-ridden, normal, abnormal - I just want to help.

Charity

Today, I'm thankful for the charity of others.

The reason we have so many beautiful and precious photos of Henry is due to Now I Lay Me Down to Sleep -- an organization which provides photographers and images to families facing loss. You basically have a photographer on call, ready to go whenever baby is ready.

Our photographer was Megan. She was amazing. I hardly even knew she was there -- and yet, our photos are perfect. These photos are all I have to remember my son's fourteen hours. And I'm thankful for them, every single day. Even when they're hard to look at.

Another organization I'm thankful for is Faith's Lodge. It's a retreat for parents/families who are coping with serious illness or loss of a child. It's a beautiful haven, and just being there was healing.

If you're looking to participate in Give To The Max Day, I'd suggest these two organizations. I really don't know how we could have handled everything without people like Megan and Ev (Faith's Lodge) stepping in to provide some comfort and relief.

https://www.nowilaymedowntosleep.org/

http://www.faithslodge.org/

Catching up!

I wasn't able to blog this weekend - too busy with a certain toddler - but here's a recap of my gratitude.

11/9
Saturday. I'm thankful for my car. It's a Jeep, and it's a monster, but it's got automatic start and I can survive the upcoming winter with it. Simple!

11/10
I'm thankful for great friends -- the kind that you can go to the farmers market with and just have a grand time with in the early morning. Today we went to Bachman's off of Lyndale. The Kingfield Farmers Market moved into their greenhouse, and it's more like a neighborhood fair. A hipster band, fresh mulled cider, fresh bakery items.. beautiful day, great time. Our kids are freaking adorable, too.

Love these two! 

11/11
 Monday - I'm thankful for having a house big enough to keep my distance from my wonderful, insanely sick husband. He's been violently ill all afternoon, and I'm doing my best to keep myself and the kiddo healthy. It's a challenge. I feel so horrible for him, but I'm grateful that we have the space that just may save Amelia from the stomach flu!

11/12
 It's Tuesday! I'm thankful for smartphone-friendly mittens. Isn't that first world?! I'm thankful for the cheap little Target brand mittens I have stuffed in every jacket I own -- I can actually dial with them. And this is important, since I'm trying to win Cities 97 Sampler Release Party tickets. I love me some Delta Rae!

Henry's Cloud

Awe

Today I am thankful for the ability to be awed at the world.

I'm so glad that my breath can still be stolen by individual moments. I'm relieved, actually, that I still have the capacity. I'm finding myself standing, slackjawed and amazed, at little things - just how I used to be, before Henry died.

Today, I couldn't help but steal glances out of my mirrors at a gorgeous sunrise. These happen so often, but each one has a sense of magic.

Today's sunrise -

Sunrise from earlier this week - 

It makes me yearn for a life of beauty. I just want to live somewhere beautiful, with my beautiful family, away from ugliness of human action. There may be some who think I'm talking about the unattractive - I am not. I don't think people are physically unattractive. Here's my Sesame Street moment -- it's what is inside that counts. 

I want to buy a nice D-SLR camera, move my family to a quiet, beautiful location (in Minnesota, I've become attached again!) and just take pictures of everything that makes my heart happy. Why can't we just do that?! What's stopping me?

Well, money. And I'd want to stick close to work, because I really do love where I work - and my family is here. And our daycare lady is phenomenal. 

So I guess I need to find something affordable, beautiful, serene, and in Maple Grove range. Yeah. I'm not quite sure if this is one of my attainable dreams! 

November 7

Today I'm grateful for my husband.

We've been together for (nearly) a decade. We'll fight over the official beginning -- I say it was a Valentine's Day party, he says it was a movie later in the month -- but I like to stick with the more romantic Valentine's Day date.

Ten years -- well, almost. I met Jason at Perkins one night, late January, when that was the thing to do for young adults not quite 21.  He was getting off of a late shift at work, I was just gearing up - we all smoked and partied in the back room. We literally played with fire, laughed, screamed, and enjoyed ourselves.

In retrospect, it's not surprising that I would meet my soul mate there. It was fun - and we were both drawn in.

We've been through everything. Death, life, pain. We're lucky, because we've shared more laughter than tears. We just passed our three year wedding anniversary - and it's been an amazing three years.

I'm stronger with him, and because of him. He is my anchor. We both give as much as possible. We find joy in our daughter - and in memories of our son.

I never want to stop loving you, Jason. Look at everything we've done. I can't imagine any limits to what we can do together.

November 6

I was nervous when I woke up this morning. I couldn't wait - I ran to the window and looked out.

Snow.

Gorgeous, fluffy, freshly fallen snow -- that didn't stick to the streets or sidewalks. This is the best kind of snow there is - all the beauty, none of the transportation headache. It fleshed out the tree branches, sparkling everywhere. The sky lightened from a deep cerulean to a powdery baby blue.

It's gorgeous. I love Minnesota! My view at work is positively enchanting.

What's outside?

November 5

It's election day! Today I'm thankful for my neighborhood.

Not everything in it - but the sense of community I get from my neighbors and elected officials. It's just nice, knowing who represents you in the big city. It's also wonderful knowing that if I have an issue, it's addressed immediately.

Congratulations, Barb Johnson! So happy that you're representing us again!

Getting to normal

I thankful for some therapeutic time with my mom and grandma.

We got together last night, and by the end of the evening it was just us. Things were said that I needed to know, and needed to hear.. it was just healing.

My sister was a miracle baby - she was born four months early. In 1975, it was a death sentence. My mom and I were able to bond over this - she understands how I feel. She said she refused to let my sister go - that she fought tooth and nail for her.

It worked for her. I wish that simply fighting would have fixed Henry. I would have taken on the world. If it would have helped, there would be nothing left but smoking ruins. But you can't just fix it - it's insurmountable. It's also my weakness - letting go and letting things be as they are.

The rest of the evening was reflecting on how amazing my sister is - love you, Jen! I'll save that thankful post for later. There's a lot to be thankful for this year!

Sunday

Today, I am thankful for three things - and it's not even noon!

First, for the "extra" hour of sleep that Daylight Savings tried to give me. Sorry that Amelia did not comply!

Second, for good friends. The type that you can go years without seeing - but nothing has changed when you do get together. Had brunch with two fantastic ladies this morning - can't lie, great time!

Thirdly, I am thankful for the ability to be awed. I've lived here for over 28 years (duuuuuurh, my whole life!) and every year I'm floored by the beauty of fall. I'm inspired to tears by a single tree blazing red in a group of evergreens. My breath catches when leaves scatter and dapple the sunlight -  green, gold, and vibrant red.

Stay classy, Minneapolis. You are a jewel.

2

Today I'm thankful for my husband. He listens - and comes to me for advice. He's my teammate and my partner. I'm so thankful that we give everything we have into our relationship.

We're discussing our future in regards to his job. I tell him that I will support anything he does - and I will - but he still wants to discuss and have my input.

I love that. I'm thankful I met him and that he's stuck with me for the last ten years. The last three, married, have been amazing.

I love you, Jason.

Giving Thanks

I'm going to try to remind myself each and every day that I have so many things to be thankful for now.

So - for the month of November, I'll be posting each day. There's a warning attached - I'm thankful each and every single day for both of my children. Henry may be gone from my arms, but he grew in my heart and there he stays. Amelia is my constant joy and comfort.

 You'll be seeing a lot of her!

Today, I'm thankful that daycare was closed (although not why - I love her provider and wouldn't wish the flu on her for a second!) - because Amelia and I got to hang out all day. We played, and read, and went out with Great Grandma (GiGi) to get our hair done and take lunch. And my sisters and two of my nieces got to join us!

I'm also thankful for the beautiful colors that Minnesota produces each fall. Winter is coming, and this is just a final burst to remind me that every cycle - every life and death - is beautiful.

Plunging

I'm doing the Polar Bear Plunge his winter.

So, on March 1st - where the warmest temperature I can expect is 30F - I'll just jump right into Lake Calhoun and splash around like a maniac.  But it's for a good cause. The Special Olympics.

Back in February, before we knew the extent of Henry's holoprosencephaly, Jason and I dreamed of the things he could do - even if he was disabled. We had done the plunge in past years, and it's been a fantastic experience - but it's never hit home. I remember telling him, "Well, we'll have to plunge again in 2014 - raise some money for our kiddo!"

 I had thought that, even with HPE, he could go on to do so much. I already made him a hero in my heart. My original dream for him was to go on and live a long normal life. Pre-HPE, I thought he'd be an intellectual family man, kind and caring. HPE changed that.

There were only a few days of waiting for our MRI and neurological consult. At this time, we adjusted our world view and our dream for him. We thought that, even if he was disabled, he could be happy - and we would do anything to make that happen. We looked into changes we'd have to make in the house. We thought, hey! He could do the Special Olympics when he was older! It made the bleak situation a little brighter.

But when we found out his life expectancy was hours -- well, it crushed the dream we had hastily put together over the weekend. No ramps. No special schools. No Special Olympics.

Well then.

I'm doing the Plunge again. I'm doing it for Henry, and for the short dream we held for him. I'm doing it so all of these kids can achieve their dreams.

www.plungemn.org/plunger/katherinebutler  

Genetics, revisited.

As I mentioned in my last post, I met with our geneticist on Monday.

It was both comforting and infuriating.

We went over all of the test results from the last year.  Chromosomes, arrays, genes, microdeletions and abnormalities.

All clean. Henry had perfect DNA.

Then we went over known environmental factors that cause Holoprosencephaly.

Mostly acne medications and maternal diabetes. I have/take neither.

So - what does this mean? I can't blame anything. There is nothing I could have done to avoid what happened to him. Absolutely nothing.

There's a chance that 1 baby in every 10,000 will have HPE.

As I understand it - of 1,000,000 babies, 100 will have HPE. 50 will have a chromosomal issue, 40 will have a genetic issues, 9 will be the result of an environmental factor... And one very special boy will be just by horrible, horrible chance.

My Henry was one in a million.

For future pregnancies, this is good news.
For me right now - I can't blame anyone. There's no cause. There's really not an answer to my constant "Why?"

Five

I can't believe it's been five months. I've been decent all day. Luckily, it was quiet and I got to sit in the back of the clinic.

But still. Every time I write the date, it's a little barb into my heart.

I met with my geneticist about what happened with him. I figured it was time - after my nightmares. I think Jason and I will start thinking about another - that is, once we move. Maybe I should start a new house kickstarter?! I don't care where. Just somewhere I don't have to worry about ricochet bullets and drug deals.

Then I get home. There's mail for Henry. They reprocessed his health claim.. And denied it.

Cue another painful, difficult phone call.

Now I need to call two other people to get everything straightened out.

Does it ever get easier?

Wake up

I woke up at 3am, terrified.

I dreamt it all happened again. But this time, we found out at eight weeks instead of twenty.

When he was born, we called him Henry - again. And he was just as beautiful. And just as horrible to lose him.

I think it's because I've been reflecting that if I had to do it again, just to meet him, I would. 

And because I'm seriously terrified that it WILL happen again. That if we decide to have another child, they'll develop Holoprosencephaly, too. We're on the low end of genetic possibilities, but there's always a chance it could happen again.

Don't think I'll be able to sleep again.

Thoughts

I was thinking.

If I could just wish away the pain, would I?

I don't think I would. Because the grief I feel translates directly to the love I have for my son. My Henry. I wouldn't give up my love for anything.

Jason, Amelia, and I were snuggled on the couch this evening. I burst out crying because I wanted BOTH of my babies. It's not fair - it's not natural. I feel like I've been waiting the last eight months. I feel like I've been waiting to wake up. Ever since we got the diagnosis, I've felt that this really can't be reality.

That might be how I'm getting through the days. I'm not sure - as I start my mornings, I slowly lock a part of myself away. So I can function.

I'm reading Sunshine After The Storm. It's a book for bereaved mothers - by bereaved mothers. It's interesting - and lifting. Not alone.

October 15

Today is Pregnancy, Infant, Toddler, and Child Loss Day.

I've been lost for words all morning. There's only tears. It's not a day I've ever wanted to be aware of before. But, still, I'm thankful for it. Today, we can say our babies names.

Every loss is significant. Every loss is the destruction of a dream. Whether your child took a breath, or even made it through the first trimester. That is your baby. We were so lucky that Henry fought for his fourteen hours; but it will never be enough.

This isn't how it is supposed to be. As a friend said, it's you - apart from me - indefinitely. It's not right. Not supposed to be like this.

My Henry. My heart hurts every day - but it's like an anniversary. It's just harder to control.

"I didn't bury my son. I planted him - and he grows."

Learning

I'm trying so hard to keep it together.

Jason was showing Amelia the basics of bowling. He should be teaching his son. Not that bowling isn't a girls sport - but it wad one thing he was looking forward to with Henry.

My soul weeps tonight. Acute longing.

I find it really weird that I'm able to function throughout the day still. Sixty percent of the time I'm struggling not to cry. I'm fighting a depression event, but I don't know how much longer I can hold out. I need some time to myself -- and yet it's the one thing I don't need.

I don't know. I feel incredibly alone, isolated. I know that I'm withdrawing from my family, but I don't know how to reach out. I don't know how to ask for help, or whatever it is that I need. I'm talking to some other Angel mamas, and most of them are actually closer to their families after their loss. A few have lost their families entirely, though. I'm afraid we're going the way of loss - and I don't know how to fix it. But a small part of me is wondering if it's for the best - like maybe they never wanted me in the first place. There it is - the truth I'm terrified of these days. That I'm not wanted, that being around me is.. disturbing. I'm trying to act normal all the time. I'm even making jokes. Like - "See! I'm okay! Love me!"

Forget it.

I guess I'll just get lost in everything. Try to suppress the pain with work and school. Just keep running.

I'm fascinated by this article. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2841012/

Realization

I went away this weekend.

My husband and I retreated to Faith's Lodge. It was incredible. We spent time with others grieving the loss of their children.

It was so.. comfortable. I wasn't ashamed to cry. But one thing came of this weekend that honestly scares me -- a realization.

I'm still numb. I'm still in shock.

I don't know when I'll be able to fully comprehend it all. I'm afraid of losing this numbness. I'm afraid of facing the truth of the rest of my life.

I know I'm scared, because I'm sobbing. It feels like my armor is cracking, crumbling. And my chest aches and contacts while I catch my breath.

I still pray every morning that it was just a dream.

I am terrified of being here, at home, on his anniversary. How do you survive that?

Faith makes all things possible. It does not make them easy.

It’s now known that cells from a developing fetus cross the placenta, allowing the baby’s DNA to become part of the mother’s body.  These fetal cells persist in a woman’s body into her old age. (If she has been pregnant with a male child it’s likely she’ll have some Y-chromosomes drifting around for a few decades too). This is true even if the baby she carried didn’t live to be born. The cells of that child stay with her, resonating in ways that mothers have known intuitively throughout time.

October

Grief is a journey. It never entirely falls away. Even though it's a part of my life now, it's not at the forefront of everything all of the time.

The days when I don't feel sad, I worry that it's because I'm damaged. I worry that it's wrong. I know I'm not supposed to be ripping at my chest and throwing myself into pyres, but, is it entirely normal?

I'm trying to refocus on being happy. Well, honestly, with school back in session - I'm just trying to get through the day. I find myself racing through the hours, but unable to actually experience time passing. I have to fit in studying and homework on top of 8+ hour days and potty training my daughter. I'm so burnt out, it's not even funny.

This weekend, my husband and I are going to Faith's Lodge. I'm looking forward to some time away - just the two of us. And a few other couples - grieving parents as well. It's going to be healing, I hope. Faith's Lodge is an escape and a place of healing for parents and families affected by child loss, or terminal illness.

I'm at Augsburg now, pursuing my Psychology degree. It's one path that Henry put me on with his short life. There's really only a handful of psychologists/counselors that work with women/couples/families facing reproductive issues. I want to help people facing infertility, adoption, child loss, and terminal illnesses. I want to facilitate healing, I want to help people find the peace that my therapist has helped me find. I'm doing this to help myself heal, the help others navigate their own courses, and to honor my son.

I'm actually in a contest for tuition funds. I'd really appreciate it if people could spread the word - even becoming a finalist would reaffirm my educational goals.

So, please! Vote here - once per user! http://www.drpeppertuition.com/profile/670665502

Odds

I don't have anyone to lean on. I think at this point, I'm expected to "be over it" and move on with my life. 

I'm so tired. I'm so tired of being stoic. People ask how I'm doing, and I lie. Because the saying the truth out loud makes it worse. 

My husband understands, but I can't lean on him - he's grieving, too. I just can't. I want our home life to be happy. I want to be able to go somewhere, cry for an hour, and then come back and pretend all is happy again for our toddler.

I'm so tired of pretending. I have no time to myself. I don't think I want to be alone. I'm afraid. 

Suffocating

I had a suffocating moment today. Just driving along - and then I couldn't breath. Have you ever had a moment where you were thinking something unconsciously?

That's what hit me. Just a thought, but it suffocated me. I couldn't breath. I couldn't move. Thankfully I was at a red light, and it passed.

Every day is different. But it's still exactly the same.

I'm flirting with the idea of moving away. I go back and forth on it. I have a lead in Duluth, and my mind keeps on toying with just how easy it would be to start a life there. Uproot my family and move 160 miles away.

We could begin anew. We could enjoy our life in that climate. We could do this.

Then - what about my job? I love my job. I LOVE it. I love my coworkers. I love my friends here. I love my daycare provider. I like my school - I don't want to have to transfer again. I love my dad. I don't want to leave him behind.

But my heart thrills at the idea of going there, permanently. I feel like I did when I was standing on the top of that crane, with the bungee cord around my legs. Like I was about to do something incredibly stupid and love it. But the thing is - would it be incredibly stupid? I worry for Amelia. Would distance make my family relationships a little bit better? I'm just so tired of being judged. I'm so tired of being alone in a room crowded with people.

Bad News

Well, we found out that Henry's heart valves were too small to use.

I think I heard my own heart rip open. I hadn't realized how much I was depending on his organs going on without him. I didn't realize how much pain I would feel if they weren't able to use his heart.

It's all useless. Meaningless.

I'm wondering if I'll ever come up terms with this. Or if I'll be able to pinpoint today as the day that I lost my faith.

I broke down at work and had to come home. I've spent the last three hours intermittently crying and screaming. Why, then? Why?

Everything we've gone through. I've been trying to comfort myself that he will live on. But that's wrong now.

I feel like something has been nudging at my consciousness the lady few days. Some large truth trying to get into my head.  There's no sense to this. No sense at all.

Three o'clock seems like a perfect time to get drunk and clean the house. But I really can't. Husband is picking up the kiddo.

Get it together. She'll be home soon.

At least I had an hour to process and cry. It's all I need, right?

Follow Up

I emailed my Donor Family Advocate today, about Henry's heart valves.

I'm feeling very anxious as I wait to hear back. If they weren't able to be used.. I think I'll feel crushed.

My heart is beating out of control, and I'm feeling faint. I'm waiting. I'm panicking. I'm waiting.

Fairytales

"Once in awhile, right in the middle of an ordinary life, love gives us a fairy tale."

I saw this quote today, and was struck by how absolutely true it was for me.

There was a boy. He met a girl. They fell in love. This is our happier ever after - this is our fairy tale. Once our story moved on to the next chapter, we continued to be happy. Together, we can get through almost anything. He's my rock. I won't flattery myself by saying the same for him. But still - that's what they mean by happily ever after. That once you find your One, life will continue - but now you have a partner to walk the road with.

First came love. Then came lots of fights and tears. And then marriage, and all of the stress of planning a wedding. Then She got pregnant, and made His life miserable for nine months. Then the pair became a trio, and the new addition can not be more perfect. Then we almost became a quartet.. But something went wrong, and we just got sadness.

But we're still happy. That hasn't changed.

Love you, Jason.

The Sun

So, this morning Amelia and I were reading books in her bedroom. It was early, the sun was rising, we were still in our pajamas.

She's currently digging The Very Busy Spider. On the first few pages is a sun rising.

She pointed to the sun, and said, "Mama. Brother."

I choked. She looked at me and smiled, then reached behind me to pat my back and said, "Mama, kay."

This kid is just too smart.

Yesterday

Yeah, it was hard. I stayed as busy as possible. First with work, then getting Amelia to her two year check up, and then to the Block Party my workplace was putting on.

Work was busy. It kept my mind active and away from seething.

Amelia's checkup went well. She's perfect -- which we all ready knew. Before Henry was born, I was in touch with our peds doc and brought her into the situation. If we were to have any hope that he would survive, she would need to know about him. So I brought her in.

And then we had the final MRI. And found out how giant his head was, and how his brain had come to develop. And suddenly she wasn't necessarily needed anymore. So she asked about him. And I spoke.

It hurt. I speak of it in passing, only when my patients press me for answers on how my son is - how we're doing - how big he is now. "He had a brain defect. He only lived a few hours. We're okay."

How much I hate that lie. We're okay. No. Not really. We're surviving. Amelia was jumping on me today, telling me about my shoulders - elbows - head - belly. Then she stopped, pushed my (flabby) stomach in, and said, "Brother?"

I almost lost it. And just writing it now, I am losing it.

...

The Hospital block party was pretty neat. It was absolutely sweltering, but we got to meet some of the new Pediatric Hospitalists that are on call now. Neat. Amelia got her face painted, some goodies (shirt and bag! yay!), and she got to play with her cousins and some new friends. The Teddy Bear Band performed - always a hit.

Getting her face 'did'

Amelia's Hunger Games Capitol portrait

As I was driving home, Amelia dozing in the back, I broke down a little. I hate crying when I'm driving. It's not safe.

Honestly, I feel like.. a teddy bear. With a tear. And my stuffing is constantly falling out. I constantly have to hold myself together to keep moving. Once I stop, I lose more and more. I can't stop yet.

I didn't go to my grief support group. I couldn't do it tonight. I'm hoping next month will be better. That I'll be able to listen, and then, maybe sometime - talk.

Three Months

Well, it's another milestone. Today is Henry's three month Angelversary.

I feel like that sounds a little better than the truth. It's been three months since he left us. Yesterday was bad - twelve weeks. Tuesdays - I loathe thee.

I've noticed that on milestones, I nest. That is to say that I start cleaning. If I work, I don't have to face the truth. My baby's gone. I try to say goodnight to his pirate ship every night, but I know he's not there. It feels hollow. He's gone from this Earth and there is nothing I can connect with to 'talk' to him. I've read that that's a pretty good therapy, writing letters and talking it out. But he's not here. I wonder if he ever was.

I met a group of other mothers who have lost their children. They were nice. I'm not sure if I'm ready for that yet. I feel like my smile is still shaky, and I'm still so raw from the last year.

Thankfully, Amelia's getting over her obsession with babies. It's so hard. And it's only going to get harder. I'm going to start reflecting "at this time last year.."

In November, I'm going to remember finding out that I was pregnant.

In January, I'm going to remember the fear that one phone call instilled in me.

In February, I'm going to remember the anguish and anger accompanying the diagnosis.

In March, I'm going to remember how I didn't want to celebrate my birthday. Because it was wrong. I don't think I want to face another birthday again. It still feels wrong.

I'm going to remember every MRI and ultrasound. I'm going to remember feeling the weightless pull as he left my body. I'm going to remember his face as he passed. I'm going to remember every tear, the anguish on my husband's face, everything.

It's not that I want to forget, it's that I can't. Because it's been playing in my head for the last three months. I can't escape it, and I don't want to. These are the only memories I have of my precious boy.

And even then I feel guilty for feeling this way. Because we knew what would happen. We were trying to prepare for it. We tried. But you can't prepare for that.

I'm trying so very, very hard. I want to get a sewing machine and take my early morning crying fests into a new direction. I want to start prayer flags for Henry. I want them to wave in the wind, and carry my prayers home to him. Wherever he may be.

I want to feel this weight lift off of my shoulders. It's physically weighing me down. My back bends under the pressure of my grief. I feel diminished, alone. But I'm really trying to be present.

Sometimes I get lost. I'm afraid that this'll be one of those days. But it's okay to get lost -- it's okay to fall.

Just remember to get back up.

Surprise

Ha. 

Now when I get upset, I lose it. I cry. 

Need to get back to taking my medication more regularly.. This whenever-I-remember system is definitely not working. 

Progress

Now that I've made the conscious decision to Let It Go, I feel a lightness in my chest.

I can't explain it any better than that. A lightness. It's a combination of feeling a weight lift, and a feeling of a (super cheesy!) inner light. I feel like a lighthouse - kind of?

People. I'm stressing out on how to describe how light and stress-free I feel. I am a walking contradiction.

I feel like I'm finally taking back control of my life. I let it run me for a while, but, dammit! It's my life. I don't need to put on a show for other's, to act they way they expect a grieving mother to act. I'm no where near "over it" - but I can't let it rule me. I have to be present for my daughter. In the moment.

Birthday!

Amelia's birthday party went wonderfully.

Of course, I waited until the last minute to do everything. Not because I'm a procrastinator - I'll tell you about that tomorrow - but because I have a toddler and on weekends I'm basically a single mom. When the hubs works two jobs - one Monday-Friday, and the second job Friday and Saturday night - well, it's pretty important to me that he sleeps as much as possible on Saturday afternoon.

Thankfully he was off on Friday afternoon - he got a nap in before working Friday night, so I didn't feel too horribly guilty waking him up to help me clean/prepare the party at 9am. I went to pick up the cake and balloons at 10, and was back by 11.. but didn't have a chance to make the food. So the first hour of the party I was jetting about in my kitchen. Banana roll ups - who knew how easy they'd be?! Banana, tortilla shell, PB and jelly/honey -- or with just Nutella. But they still take time, of course.

She loves balloons!

Sunday - Jason took me to Pride and Prejudice. Lovely. Absolutely lovely. It felt very abridged, though. And they scaled the characters back like they did in the most recent movie.. for instance, Bingley's sisters and brother-in-law were combined into one Miss Caroline Bingley. And Elizabeth's aunt and uncle were scaled back to just her aunt.

I felt like it was adapted from the movie, rather than the novel. Oh well.

I find myself brooding a lot these days. I'll be honest - I've been really forgetful in the Zoloft department. I'm not off-my-meds crazy (considering my medication level is a minimum therapeutic dose - 25mg rather than the 50mg that's generally prescribed first) -- but I wonder if it's messing with me. When people are casually rude, or just generally heartless towards me.. I want to say, "Do you know what I've BEEN through?!"

But I don't - because that would be using my son for myself. No. It's just not right.  I'm not going to 'milk' my situation. I smile in the face of blatant rudeness (ahem, people - be nice to the receptionist!) - and move on.

Speaking of smiling in the face of rudeness.. I was convinced to call the people who want to interview me back. But because I didn't call back immediately (Wednesday night, missed call -- Thursday, new baby, wasn't able) - the HR woman was incredibly rude. I was on the fence earlier about even looking into this - and now I'm determined to stay where I'm at. I love my job - and I think that little Miss Scarlett's birth may have neutralized the negative feelings that I had for the hospital. I finally feel at ease in my skin, again. I'm starting to relax again. I feel like I can really do good where I'm at - and I can use my job to further launch my career once I'm done with school.

Miss Scarlett!

I love my son. I rejoice in the time we had with him. I'm still sad, but I'm becoming a master at letting it go.

Let. 

It. 

Go. 

August

This week has been interesting.

Last week we went on our first family vacation. Jason, Amelia, and I jumped in the car and drove out to Bayfield, Wisconsin. We were there for our friends' wedding - it was gorgeous, by the way! - and we decided to take a few days to ourselves. We spent Tuesday in Duluth, then Wednesday through Sunday in Bayfield.. and then another afternoon in Duluth. We saw trains, planes, boats. We picked raspberries and blueberries, and did a few wine tastings. We went on a shipwreck tour. We were busy! Amelia had a blast, and Jason and I were happy to be able to sit on the deck of our rented condo and just watch the waves of Lake Superior.

It was hard to come home. I wouldn't mind moving to Duluth. We could open our game store, enroll Amelia in a safer school. We would be establishing our family in another area. Pioneers. But we'd still be close enough to visit family. It's beautiful - the air is fresh and laced with the clean smell of the massive lake. Lying in our hotel room on that first night, I felt my core physically relax. I hadn't realized how much stress and pain I had been carrying around in the Cities. I'm trying to let that go - but being back for less than a week and I've noticed it returning. It's the feeling of the world crushing down, my shoulders keep on sagging and my posture keeps on slipping. It's physically painful to be back. I just want to be quiet and try to keep myself going.

It's the quiet that helps me strengthen myself. I either have to be constantly going, or quietly breathing. If I'm not physically moving, I'd rather be quiet.

I felt guilty leaving Henry's ashes at our house - does anyone else feel this? He should have been with us for our first family vacation. I had dreamed that he would be there - because we just didn't know how long he'd be with us. Before February, before we found out, I had been scoping out little tuxes for him to wear. Because I knew it was a boy. It was an absolutely beautiful time - surreal, even - but would have been perfect if my son were able to be there. It's just something I've dreamt of a lot. [Congratulations to the New York Fingletons, btw!]


Amelia's birthday was wonderful. I have a two year old. We went to Chuck E. Cheese - more for mommy and daddy than for her. She loved the toddler area with the slide, and just being with her family. Mommy loves Skeeball, and Daddy rocked the Price is Right ticket machine -- he made it to the bonus round! We both failed miserable at the Deal or No Deal game.

Many of you know that my sister is pregnant. Strike that, was. She now has a beautiful little girl. Scarlett Jane. Scarlett and Amelia are birthday cousins, too! 8/7 and 8/8 - forever linked in birthday parties. Except for next year - I demand that Scarlett have her own first birthday party!

It's funny, because Jenny and I are six days apart. Our daughters are even closer. I really hope that it's an indicator to how close they're going to be. Marina's all ready a fantastic big sister - but I think big brother Ronan is still getting used to the idea.

See? I'm crying again. I'm so happy - Scarlett is just a beautiful girl! And she has a fantastic family to grow with.

I've been worried about how I was going to handle Jenny's labor. I was terrified that it would take place in the same room that I was in for those four days. The room where Henry died. The room I'm looking at every day at work - my view at my desk is a straight line into that particular room. It's hard.

I don't know if I've completely reconciled working at the hospital with the place where we went through so much. I don't know if I can.

You see, I love my job. I love my coworkers. I love my hours. I love my company. There's not much I can say against it. The only thing is the location. I'm constantly barraged with reminders of that time. It's not good. But it's not bad. It's just.. hard. Really, really hard. I've been contacted by another company about a position in my former career (police support). It'd be different hours -- nights -- but it's a rather large increase in pay. And it's closer to my home. And I wouldn't have to be yelled at by angry women on some days.

But.. I love where I'm at now. Am I harming myself by not looking into this?

Panic

I had a moment of panic today as I considered the future. 

So I took to the internet to soothe my fears/incite them into overdrive.

"Although the possibility exists that the condition could be genetic, in general, studies have shown that if no diagnosis is made and a child has a non-chromosomal condition, recurrence risks are 3-5%. This means that there is a 95-97% chance that it will not affect future children. In the vast majority of cases when clear recurrence risks can be given, the chances of a birth defect or genetic condition not happening again are far greater than the risk of recurrence. However, we must be mindful of the meaning of numbers to people who have already been affected by the devastation of learning of a genetic condition in a baby or unborn child. As is stated by the author of Another Letter to a Genetic Counselor, the idea of a few percent just wasn’t meaningful."

                   Assessing Genetic Recurrence Risks, Helga V. Toriello, Ph.D

Sigh of relief.

But then again, we just don't know. We'll never know. So I go back to researching HPE and possible environmental factors to contribute. And then I panic again.

What if it wasn't a fluke? What if I took asprin, and that caused my boy to die? What if it was something I did?

See? Panic. Anxiety. Fear. Terror.

Happy Monday. F. 

Slipping

I keep slipping on my journey.

Last night, I caught myself wishing for something good to finally happen to our family. Then I burst into tears. I'm finally able to look at photographs of my son -- really look -- and he's so beautiful. I can look at his face and appreciate how gorgeous he was.

How can I say he wasn't good? How could I have even thought that in a simple passing moment? His life has forever changed mine; and although I mourn and miss him every second of the day.. I still was able to love him, and hold him. It's still okay.

I'm sitting at my desk and I can see the room where everything happened. It's a constant reminder. My chest seizes up when I happen to glance that way, and I'm completely breathless.

It's a rough day.

Staying Still

I have days where I don't think I can handle this anymore. 

Today is, unfortunately, one of those days. A crying in the bathroom at a party sort of day. 

I've been wondering if complete upheaval will help. If we move away. Will that make the pain less? Where I'm not reminded of what we've lost -- every day? 

Eight Weeks

It's been just over eight weeks since we last kissed him. I couldn't bring myself to post on Tuesday. I hate Tuesdays.

Like I stated in my last post, I'm starting to find peace. But it's at the cost of a lot of tears. I'm trying.

Minneapolis has been experiencing some very annoying weather lately. Incredibly hot and humid - like a sauna. The air conditioning at work is superb, so I leave every day shivering from cold and am able to enjoy the 90+ weather with 90+ humidity. Of course, this is causing hell on my sinuses.

I feel stagnant in this heat; I need a change. I'm going to see if a haircut will make me feel better. I'm just feeling so hollow these days. It's depression, to be sure, but there are ways to make it better. Other than medication -- which I'm on a therapeutic dose.

Sigh. That's it. Just.. sigh. Emptiness. I don't even know anymore.

Peace

I've been thinking a lot this week. I'm back at work (hooray!) and I've had to share my experience with a few of our patients. They all share the same horrified look when I tell them that he lived for fourteen hours. I don't know how to convey how beautiful his life was, how full of love. I don't know how to tell them that it's okay. It's not their life, and the grief that I carry with me is somehow beautiful in it's own way.

I've been hashing out the idea of peace in my head. I'm really at peace with how everything went. Even though my heart is broken, it's still full of love. I will never be the same, my heart will never 'heal' - it's a complete change to the way we live. Even though it's a change, it's something that I'm becoming comfortable with. It's becoming the new me; I can still be who I was. I'm forever changed, but it's a positive mark. I feel like I have more compassion for other people. I understand loss a lot better now. I can let go of the pain. I can feel the sun and the rain and smile through it all.

I smile when I talk about my son, now. My Henry. Even though I still have tears, I can smile.

My son had a beautiful life. Nothing could have changed how he was, and we know that. We couldn't have done anything differently. We made his life as comfortable as possible, and we loved him as well as we could have possibly done. He breathed the fresh air. He saw the sun. He knew love. We couldn't have asked for more with our situation. Sure, I grieve. I'll never stop. I love him still - and that won't change.

I'm more hurt by the actions of other people than anything. Well, one person. But this is not a place for that particular pain. I'll just say that it haunts me constantly and is making each day nearly unbearable. I'm to the point where I just want to move away, so I can use distance as an excuse to not see them, rather than being just a few miles away. Some things can never be fixed. Some relationships can be pushed past their breaking point. Forgiveness is divine - but I'm so broken by this particular issue, I don't even see how I can possibly move on. Perhaps time will help - but it feels like time is increasing this chasm between myself and this person.

Anyways.

I found a website that I'm in love with. It's the CarlyMarie Project. Here's a sample of the things she does -

And there are quotes like these -

I am blessed that you entered my life, even though it was only for a short time. 
When you left, a piece of my heart didn't go to Heaven. 
Rather, a piece of Heaven found it's place in my heart.

Julie Torrisi

Just a few things to think about. I'm really digging this website. It's beautiful, and.. hopeful. 

Some Days

Some days I think I'm just perfect.

Some days I know I'm falling apart.

And then there's the in-between - the days that I'm right as rain, until I am not. I was folding laundry. My iPhone was playing my songs on random. 'Held' by Natalie Grant came on. I lost it. I'm standing there with a camisole clutched in my hands, staring out the window as dry sobs rack through my chest. I'm very aware that I'm wearing eye makeup, and I try to stop.

The only way I can stop is to write this down. Is that insane? Once it's to form, it can be analyzed -- it doesn't live in my head anymore.

Amelia's birthday is one month away -- from yesterday. She'll be turning two. I'm going to concentrate on that.

I go back to work tomorrow. Phew. Finally.