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.