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