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