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.

Back to Reality

I'm going back to work on Tuesday. It's a whole week early. I just need to get back to some semblance of normalcy. 

Nothing will ever be the same - this I know, and accept. I am fully devoting myself to allowing myself the time and patience to learn how to function as a mommy to my sunshine girl and my angel baby. 

I will be patient with myself. I won't punish myself for having bad days. I'll step away/out when I need to. I'll cry when I need to. And that's okay. 

I will keep on reminding myself that I'll never be just magically "over it" - Henry will be with me forever. I'm thankful that I'm not expected to just forget him. 

I will continue to indulge myself. I will continue to work out in ways that I can -- usually heavy cleaning. I will find time to get to the gym, because I'm happier when I'm active. 

I will continue acting like I'm a stay at home mama. I love having meal plans and home cooked dinners -- I love being able to control what we eat. This will not change. 

This isn't the end. This is a beginning of another phase. I'm taking control - but I'm not going to punish myself if I do lose control or poise. It's to be expected. 

I'm going to fall. But I depend on myself and my husband to pick me/us back up. That's just the way that we have to get through this. 

Memorial - Recap

The memorial was beautiful. 

My husband spoke just before the end. It was perfect. He was able to say what I could not - that we feel cheated, alone, and hopeless at times.. but our son lives on, changing people's lives with every day.  His heart will go to help someone else bring their baby home. 

Our pastor spoke eloquently about losing Henry. He spoke about hope, and comfort. 

I only lost it.. well, a few times. I tried. I did the best that I could have done. 

I have to constantly remind myself that it's not bad to laugh. That I can breathe in every new day and it's okay to be amused, or amazed. It's okay to live. I may be suffering, but life continues even when it should just stop. It should just stop until I can get back to myself, until I can comfortably tell people about our journey in person. It's obscene that life continues when you feel so much loss. Like a chunk of my chest is gone. 

I miss him so much. But he's finally home with us - his urn is in our bedroom. I can talk to him all day long. He stays with us when we sleep. He belongs with us - and I'm relieved to finally - finally! - have him with me. 

Our turnout was spectacular. There were between 80-100 people throughout the evening. We felt so supported, talked to so many different people. We felt loved. We know our son was loved by so many people, and they share our pain and grieve along with us. It's just hard to remember in the quiet moments when your eviscerated by sadness. 

But I can see how my life is changing. I'm learning to live in a whole different way. It's not a life I would have wanted for myself - one where I'm wondering how to explain brother to Amelia when she's older, how to tell future (?) children about him, how to keep his memory alive without scaring people. His holoprosencephaly was a rare fluke - we hope - but we're going to do our best to help other couples facing this situation. 

Ultimately.. We've made the best of it. Henry is my angel baby. He's in the stars, in the rainbow on our drive home, in my heart. He's everywhere. When we die, and meet again.. We'll get to have the life we never got here. We'll be able to see him grow in Another Place. Crawl, walk, run. Ride his first bike. Throw the opening pitch in a baseball game. Just not here on Earth. 

Memorial

It's been over a month since we met, and lost, our little guy.

His memorial is tonight.

Jason's writing a speech to give at the service. We've both had a lot of tears all ready this morning.

5pm visitation.
6pm service.

We'll be there until 8pm.

St. Paul's Lutheran Church in Osseo, MN.