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.

Tattoos

I'm seeing a lot of 'In Memoriam' tattoos around. I have one planned, for my children. It's a nest, with a cracked egg/baby bird and the outline of a little bird flying off into the distance.

I'm not sure about this anymore. I don't need a tattoo to show my love for my son.

I all ready got one - on the day that he was born, the first time I saw him. This is going to sound incredibly corny, but, my heart is tattooed. When I first saw him, I was filled with such overwhelming love. And then the fear took over. How long would we have with him? Was he okay now? How will we actually handle this? Will we make it out of the operating room?

It was like a thousand needle stabs into my core, deep into my heart. Piercing through the love and true happiness that I felt when I first saw his perfect face. It's still there. Anyone who has had ink done understands the swelter of a fresh tattoo - the smoldering heat that you feel radiating from the area, the beautiful pain. It's a satisfying pain.

I feel that now, and every day. I feel the pain from losing him - the joy of having so much time with him. The anger that it couldn't have been fixed, that this happened to him and us in the first place. The love that will never go away - not like I'd want it to. The absence I feel, the emptiness, is like a vast chasm in the back of my mind. It's like I'm missing a few ribs. My family should be four people, going through life, loving and learning with each other. I should be laughing at my toddler while trying to get my infant ready for the day. I'm so angry that there was nothing that we could do. I'm happy that he's not in pain. I pray that life support wouldn't have helped anyway - yes, I doubt myself every day. If we had put a feeding tube, a breathing tube, regulated his hormone levels.. would he still be here? I would trade anything to hold him again. To kiss his soft blonde curls. To look into his eyes and tell him that I love him, and always will.

It's a steady burning in my heart. Sweet, pain, and constant.

I don't need any ink right now.

Between Silence

During the rain - in the silence that follows each raindrop - I hear a memory. I hear my husband whispering "He's gone." 

Raw. We're still so raw. 

I think I keep on tearing my heart out here so I won't do it in reality. In public, I can hold it together until I can write it out. Then it's a river. 

Raindrops. He's gone. Raw. 

It's a pain like.. When you hold your breathe until your chest burns. That's the closest feeling I can think to relate.

Music

I'm slowly recovering in all aspects of my life. Physically, mentally, emotionally. 

I'll never be the same. And some wounds will never heal. I wonder if I will still feel flares of anger over betrayals that should (by then) be long over?

I'm using music for my therapy in between therapies. When I'm in the car with others, it's on MPR. With Amelia, it might be on one of her CD's. 

When I'm alone.. The volume is up, and the music always has a heavy bass line. Like a heartbeat. I can instantly lose myself, detach myself from my own life, and just be. I can concentrate on driving, extend my sense of awareness, and just become part of the Jeep. 

Cars don't feel. My heartbeat is the heavy beat of whichever song is on. Cars don't cry, they don't miss people. In this state, I don't have issues with accepting help without expectations of reciprocation. I don't have to be "on". I can just be, just react. 

But then I pick up the little girl I've missed on a deeper level all day, and MPR is back on, and we're back into real life. 

But for a few miles, I felt relief. 

Words

Words save our lives, sometimes.

I finished reading Neil Gaiman's new book, The Ocean at the End of the Lane. In the final acknowledgements, he thanked Stephen King for reminding him of the joy of writing every day. I feel like I can relate. In happier times, escaping and creating your own little worlds, your own little reality.. it helps. Now, I can escape into my own feelings and really evaluate them. I can put them to words and really understand how I feel, and why I feel that way. It's helpful, especially when nothing else eases the pain.

Speaking of pain. I had my gall bladder removed yesterday. What a simple process - it was four hours, in and out. I was under general anesthesia (so I was intubated - yuck!) for about ninety minutes. When I awoke, I was sans gall bladder. Everything went fine. I just look like I was stabbed a few times. But the gall bladder rests just below your ribs - they punctured me in three places there, and then pulled it out through an incision in my navel.

Modern medicine is wonderful. It really is. Today, I'm sore. But that's about it.

Amelia spent another night in her toddler bed. I only had to sleep on her floor for about an hour, before sneaking out to my own bed. It's the first night in months that I've shared a bed with *just* my husband. I didn't get kicked in the face, I didn't get farted on. It was pretty darn magical.

Today I feel better about Henry. I think I'm passing the guilt phase. I'm more and more reassured with our decision to not put him on life support. Especially after being intubated myself - I don't want my children experiencing that unless absolutely necessary.

We're planning his memorial service to be on May 28th, next Friday. I think it's going to be at my church, rather than the Arboretum.. it just feels right. As much as I love the Angel of Hope statue (and he will have a brick there!) -- I just feel like a picnic atmosphere isn't right. And it'll be easier to have a structure to the service/open house. Just a few words, a prayer or two, and I'd like to do a balloon release. I'd like people to come prepared to write down their hopes/wishes for my son, and then we'll release them with the balloons. I think I need to look into a permit for that..

Besides, this way we can have coffee and food in the kitchen. And bathrooms. Bathrooms are always a plus.

And my church feels like home. My heart is calm there - not necessarily because of the people. It's just I've associated this particular building with safety and love. I've watched specks of dust floating through streams of light in the stained glass, and felt comforted. I find comfort in the quiet moments. I want to share this comfort, and I want to seek it out again.

I'm going to go have a nap. I forgot how much I needed to sleep after the cesarean. My body is wiped out.

Anxiety

Amelia seems to be going through another round of separation anxiety. 

I'm nervous that it's due to me. That, because of my depression, she's being affected on a deeper level. Maybe I'm becoming a hover-mom. I don't want to be a helicopter parent, holding her back!

I'm not sure what to do about this. 

There's nothing on the Internet. 

Do I look for a child psychologist?!

Static

Grief is a static state of being. It's a constant buzz in the background, on the good days.

Today was a good day. It might be due to pain medication -- I had a gall bladder attack yesterday. First ambulance ride from Urgent Care back to the hospital. Recommending removal sometime next week. I'm never planning on going through that pain again - it felt worse than childbirth. Well, maybe not entirely. But the fear that accompanies it makes it a lot worse.

With childbirth, you know there's an end. The pain will stop, and you will have a beautiful baby in your arms to hold and to love. With gall stones, there is no end in sight. It's not a definite thing. And it came come back whenever it wants. This attack has lasted 24 hours. If take a full breath, I can feel the pain still - even on Percocet.

Hence, somebody, anybody! Take my gall bladder! It's nice, though, because I won't have to take any additional time off, since I'm all ready on leave.

We went to a carnival today. Amelia got to pet a kangaroo. She loved the animals - except the llama and alpaca. They were too tall, and too eager for the pellets we were feeding them. Unnerved her. But she adored the turtle! It was moving fast, too!

I'm ready to make peace. I'm working on setting up Henry's memorial service. We have paid for his cremation, and are just waiting for our urn to arrive. He's going to be in a pirate ship! My little boy, so much like his father, would love that. I just know it.

I went back to my psychologist yesterday. It was wonderful to talk to her - and to sort all of these situations out in my mind. Ultimately, I'm doing "well" with my grief process for Henry. I'm learning to live without him here with me. But, I keep on having situations come up to complicate my feelings and emphasize my pain. Like burial assistance, or the fight with my mom. Financial distress and being abandoned. Not exactly helping my mental state.

Jason's grandma died last week. I'm going to miss her. I hope she's finally at peace - she was very negative, because people constantly took advantage of her. But she had a wonderful, loving heart. She was a great, loving woman. I really am going to miss her, but at least Amelia was able to know her for at least a short time.

Yesterday, when I was having my gall attack.. I thought I was dying. I knew it wasn't anything I had ever felt before. I thought we'd never make it to urgent care. Earlier this week, I've been so depressed between Henry and my mom.. that -- I'll be honest, because I want to be completely truthful here -- I was weighing suicide in my mind. Just to escape the constant pain, the feeling that my heart has been shredded.

This experience was a blessing, because I don't want to die. I was terrified. I begged and pleaded with my God to help me, to just keep me going to see my daughter grow up. I couldn't leave her, I couldn't leave my husband.

So that's it. I'm glad I got snapped out of it, and I'm glad to finally be able to rid myself of an organ. Ha!

The truth.

I was putting the bed back together, after washing all of the linens. I had all ready sorted through two storage cases, vacuumed the dining room, living room, foyer, staircase, and hallways. I've done four loads of laundry. I prepared dinner. I watched an episode of Game of Thrones. I read a book. I'm like Rapunzel in Tangled.. just keep on going.

Still, I am restless. I can't do enough. I can't stick to one task. I am bouncing between things. Except vacuuming. I vacuum constantly - dissapearing things.

I was putting the bed back together, and I had to go around the giant suitcase Jason and I brought to the hospital. So I opened it, and started putting things away/in the laundry.

I got to Henry's little suit, his tiny tie, his Sweetheart quilt, and his hat. And then I lost it.

I raged. I cried. I screamed. I begged. Anything. Please. Just give him back. Anything. I clutched his little hat as hard as I could back to my heart. If only an essence of him remained, I wanted it in me. I don't know how long I stayed like that. My eyes are swollen, and my lungs hurt. I hurt everywhere, but it's not physical - it's not from overuse. It's from the pain. The constant feeling that part of me is missing.

I don't know where his little Whale jammies are. It's what he wore for his entire life. I want them. I need to hold them, I need them. I don't know if they ever brought them back from when he went away, down to the organ surgery. Maybe they are at the funeral home. My little boy.

He's still at the funeral home. We were denied burial assistance from the county, despite being flat broke. So now we wait for either a surprise amount of money to come to us, or for his life insurance to come through. I just want to bring him home to me. I need him close by.

I put together the shadow box, with a few flowers and his and his sister's handprints. I need another one for his footprints. I put his hat in the shadowbox, because I needed to have it someplace safe. I kept clutching it to my heart. If I pressed hard enough, it felt like my heart was whole again.

I finally screamed in the basement. Collapsed across the dryer, my face in our comforter. I screamed. It felt good. I screamed until my lungs emptied and I felt a moment of peace. And then the world started to move again, and my life went back to feeling as bleak as ever.

I know that it's not. It's just the grief. It'll lighten someday, but the pain is still there. I wish there were a shortcut I could take to healing. But I don't think there's ever a healing in this. My baby is gone. Part of my soul is missing.

I made an appointment with my psychologist for Friday. I'm finally ready to see her. It'll be the first time since Henry left us.

I'm interested to hear what she has to say about my experience so far. I need advice from someone who has no interest in my family - I'm struggling so hard with that. I don't know what to say to her anymore. I don't know if I can forgive that.

I don't know if I can ever write what happened. My soul is missing, my heart is broken, and I am in pieces. This will all change once Jason brings Amelia home. My husband soothes my pain, and my daughter delights my spirit. They're my reason.

Tuesday - Cleaning.

Just when I'm about to sit down.. a song comes on shuffle and I'm bawling. Currently it's Held by Natalie Grant. "If hope is born of suffering - if this is only the beginning..?"

I know that this is only the beginning of the rest of my life. The life that I have to continue on with, without my son. Will the suffering ever.. lessen?

Back to cleaning. I stopped this blog post to actually go hang frames and other stuff. Jason's going to be pissed - nothing is in line. Levels are for wimps. I just needed these things hung!

I can feel my cesarean stretching - but I can't stop. When I stop, something sets me off. I hate Tuesdays.

My house is chaos - I have pulled nearly everything out and am just trying to breath and cool off before re-homing it all.

Henry

This is my gorgeous boy. Henry Alan Butler, born at 10:03am on May 21st. He passed at 11:56pm on the same day - he was a fighter! We had fourteen beautiful and unexpected hours with him.

 We were prepared. At 20 weeks, we found out his brain wasn't developing. The radiologist saw "cystic images" and wanted to repeat the general ultrasound with a full level two. When the tech got to his brain.. she stopped talking. We went on to get a fetal MRI - and it was confirmed. Alobar/semilobar holoprosencephaly, and Dandy Walker Syndrome. My world stopped. I don't know if it's every restarted, or if it ever will. We decided to carry him to term, and pray and hope that it was all just a mistake. 

 Henry developed hydrocephalus. His head was measuring at nearly 16 inches at my 34 week ultrasound. We delivered him the next week, because of my increasing contractions, and my physician's fears that I would go into natural labor and require an emergency cesarean.

We had a prenatal hospice nurse to guide us through the last eight weeks of my pregnancy. She helped prepare us, got us organized (in this huge room - we had so many people with us! The hospital was like a Hilton!) and prepared. We had the organization Now I Lay Me Down To Sleep send an amazing photographer over to document our son's life. Our pastor was in the operating room with us, and performed a baptism immediately after he was born.

My dad and my husband were able to take Henry outside. My son felt the sun on his face, the wind, he heard birds. He got so many kisses from so many people who loved him. His big sister (nearly two) screamed like a banshee whenever someone else would take him away from her to hold him. She still talks about him - baby babble, but she knows. My boy passed in his daddy's arms shortly before midnight. My husband and I have never cried that hard, have never felt so deeply and keenly this loss.

My world still hasn't restarted. My beautiful boy, with his golden angel curls and his daddy's eyes, isn't with us. The fact that we were "prepared" doesn't make it any easier. The genetics came back "clear" - but there's always a chance that any following pregnancies may have the same diagnosis. Terrifying.

If anyone has the option or time, we really recommend Now I Lay Me Down To Sleep. I really didn't even realize our photographer was there. Here's our photos from that day - http://henrybutler.shutterfly.com.

Running Away

Just when I think I'm finally going to get through a day without crying, my arms start to ache. They're empty. It's June 8th, and I should be 38 weeks pregnant. I shouldn't be waiting to bring my son home from the funeral home. I shouldn't be sneaking out of my own bedroom to go sob on the staircase. I should be able to sleep.

I'm trying not to take any pills. I'm relying on my tea currently.

There are times that I just want to pack my family up and move away. Far away where people won't ask me where our baby is. Far enough away so I won't have to face the awkward pauses, the stilted conversation. Far away, to the point where I won't throw up my walls when someone tries to hug me.

I started to watch Juno tonight. I relate all too much to her. I had to turn it off after a few minutes, but I relate so easily to a wise-cracking tough girl. Especially when all I want to do is be held and cry.

I want to run away from all of this. I wish running would help.