A Beautiful Day

State of the union

Have I mentioned lately that I'm still in therapy?  And that I'm making great strides in understanding what drives my mood and behavior?  The work we've been doing has been intense and, at times, very difficult, but I am quite better off for having processed it.  I have found a therapist who is truly an amazing, smart woman who is not only an accomplished professional but gets me (hell, she even sews and knits) and that really, really helps. She's opened my mind and encourages me to go deep - to really explore ideas and feelings - and also has me on a sort of 12-step program, only I don't drink or do drugs.  Instead, I am addicted to a semblance of control over things, and when there are things I can't "fix," I resort to my "original hurt."  Which, in short, means I can become super insecure and confused and feel unlovable when life forces me into situations where I'm not the one calling the shots or making things happen.  It has a lot to do with not being able to really trust people, which was hardwired into me when I was a little girl.

And I don't tell you this because I want you to feel sorry for me - oh no - I share rather because it may be helpful to some of you and I am quite happy that I'm making all these discoveries.  It's making me better...you can't change the past but you can change the way you deal with it.  This is long overdue.  

June is coming up in a few months and there is a small fear in me that the warmer weather - springtime - will trigger some postpartum PTSD flashbacks again, like last year.  These flashbacks are horrible - I can only liken them to perhaps a panic attack (which I've never had, but have witnessed and have several close friends who've suffered them) in that it really physically feels like I'm going through the delivery aftermath all over again.  The worst ones are ICU-related, though the one when I'm waking up from surgery too early runs a very close second.  Last week I had to have a CT scan for some shortness of breath (PNH makes me prone to clots so my hematologist errs on the side of caution whenever I have breathing complaints, especially to rule out a pulmonary embolism) - anyway, the scan itself mentally brought me back to THAT TIME, and I must say I did an excellent job of avoiding a meltdown.  I wanted to scream and resist but instead I breathed and thought of good things and made it through with a smile, and that says something because I frickin' HATE CT scans - if you've ever had to endure the dye, you know why ;-).  My lungs came back negative but sneaky Dr. Cutting Edge threw in a whole body scan while I was there and they found a softball-sized cyst on my ovary.  Long story short - one ultrasound later, the cyst was going down and is functional vs. complex, so it should go away on its own.  I feel better.  And I feel good knowing that I'm at the point where the smells/procedures/IVs/beeps of a hospital aren't freaking me out like they did perhaps less than a year ago.  I'm getting better.  

***

In other news, I received two orthopedic-related reports this week: one from Smacky's ortho who diagnosed the femoral anterversion, and the other from his physical therapist at the school.  It's amazing how differently two professionals can see the same situation, and, as far as I'm concerned, they're both on equal ground given the fact that the PT spends several hours a week with him and the doc, though more qualified to expound on medical issues, saw him once for a mere 15 minutes. 

In short, the doc mentioned autism three times in his report...though not all gloom and doom, he basically deferred the issue as one that needs the attention of developmental experts.  The PT, on the other hand, raved about how Smacky loves Gross Motor Group and is a quick study.  She clearly adores him and is very optimistic about his prognosis, even if he were to receive only minimal intervention.  She feels that he is the type of kid who, with the right attention, can easily overcome his developmental deficits.  She is so darn rosy about his future I sincerely want to HUG her and let her come live here and stay in the guest room.  I'd cook for her while she kept telling me how Smacky is usually the first to volunteer to try new therapy activities and I'd bake her her favorite cake as she raved about his remarkable ability to JUMP (with two feet! at the same time!) on his own or how he's THIS CLOSE to alternating feet while descending stairs. This PT has done wonders for him in a relatively short time and therefore, she's got some street cred with me.  I'm learning that the school, for legal and financial reasons, certainly leans toward minimalizing developmental issues so I need to take what she says with some salt, but damn if Ms. PT isn't the bright spot in my day lately.  She's got me so pumped that I up and signed Mr. Smacky up for some swimming lessons.  And before you think I'm dumber than a bag of hammers, know that long ago I nominated the hubs to be The One in Charge of Teaching the Boys to Swim...what better way to indoctrinate him than with sensory-challenged Mr. Smacky?  Heh.  I'm kidding...they'll have a ball (I hope).

***

J now says "butterfly" and "go downstairs."  Z has been throwing A LOT of hissy fits involving purple-faced screaming when he doesn't get his way.  And Smacky is urgently trying to master the art of the knock knock joke.  If you have any good ones, please leave a comment!

Happy weekend!

It can happen to anyone

Tonight a friend called to relate that friends of his are undergoing an emergency C-section tonight.  Their 28 weekish baby boy is failing to thrive due to placental issues.  The couple is devastated and scared out of their wits.  He currently weighs a pound and a half.

At the news, my brain got hot and my heart pounded a little.  And I heard the words coming out of my mouth: 

They will be okay.  The NICU is a place for miracles.  It will be a long couple of months, and the baby may have some developmental issues, but in the end they'll all be okay.  

I think back to Smacky and the nec and how one day you're high and the next very low, only to rebound again.  I can visualize the splint on his tiny arm they used to stabilize all the IV tubes.

I keep going:

Our pedi told me just two weeks ago that nowadays, babies born prior to 25 weeks are now the ones they really worry about...that the NICUs and infant care has evolved so much in the past few years that those born afterward generally do really well.  

S overhears and adds:

An hour after Smacky came I felt so much better...I saw how much care he was getting and how many people were attending and watching over him and I knew then that he'd be okay.  

And I end with this:

When they're ready to talk, they can call anytime.  It's going to suck, but it gets better, promise.  It's just that it's the polar opposite of the welcome to the world anyone wants for their baby.  Really.  Tell them they can call us.  

If you consider odds, they're likely to all be okay.  It's just knowing that someone we know (of) is enduring that drama that leaves a big giant lump in my throat.  I tried to stay positive with our friend but man, there is plenty to make those parents terrified right now.  Not happy times for them. 

Please, if you would, send good thoughts to a tiny baby and an agonized couple to northeast Massachusetts tonight...it would be so sweet to be able to post a happy update in a few days, wouldn't it?

A rant, of sorts.

See this picture?  See it?  Any of you C-section gals out there have a visceral response to it like I did?  I don't know why but this has haunted me since I found it via a new blog linking to  A Beautiful Day.  This graphic punched me in the gut and made me want to sob in fits of PTSD all over again.  Because this is how I feel.  This is exactly how I feel after two C-sections gone terribly wrong.  This is how I feel after 3 years of c-diff.  After a tummy that's never felt right since.  About the fact that my twins were a week old before I could meet them, or that it took a month to be able to care for any of my babies. 

Platitudes such as "at least you have a healthy baby" are what has kept the ugliness I feel pent up inside.  It's been hurting me and my psyche.  I need to be able to rage about how violated I feel without any healthy baby crap being thrown at me.  What happened sucked and still does - daily I am faced with reminders of the trauma, and I have spent a solid 6 months now coping with and facing the craziness it's caused in my head.   And here is this pic - one I didn't seek but rather found me - and well, if a picture says a thousand words, this one conveys millions in meaning to me. It validates.  

I do have an opinion on VBAC and VB in general and this will be the first and last time I ever state it here and I say it non-hysterically:  whenever, however possible, if only to avoid the potential for complication, use your vagina to push your babies out.  That said, any contraindication, in my book,  is enough to warrant a C section - there's no way in hell I'd take chances with the life of my baby either.  But women choosing (or being forced into) this route need to know they may very well end up feeling violated in any number of ways - and physically is only the beginning of it. 

As infertiles focusing on the prize, we tell ourselves over and over again that in the end, it's only healthy baby that matters.  I'm finally in a place where I can assert that that, my friends, is a bunch of crap.  It does matter -but what I've realized is that the whole thing matters.  In my case, I was stripped of any remaining dignity...I felt so lucky that I was actually having children that it didn't occur to me to be picky about how they came or the fact that because of PNH I never had a choice.  It never occurred to me that the entire process ransacked my womanhood; the fact that they took my uterus is simply a metaphor for what it did to me emotionally.  And yes, my fine doctors wound up saving my life and that of my sons.  But IT STILL SUCKED.  

My girlfriend S is the only one I know who's had a general anesthesia C-section (terrifying) followed by an epidural C-section for her second baby.  Turns out the second C-section was even more frightening for her.  And bless Ms. S...she talked not only of her own experience but wondered about our mothers and grandmothers, who did this stuff without any information, back in the day when no one talked about any of this.  Imagine how they must have felt.  

We've come a long way, but we've got a long way to go.  A long, long way.  

Ah, I feel the anger pouring out of me as I write.  My therapist - she would be so proud!  

Thanks ICAN of Jackson, MS.  Your linking me has helped me in more ways than you know.  I know your efforts will help others, too.  Thank you.  

postscript:  I found out today that one of my doctors will be published soon with his report on PNH and Pregnancy Outcomes in an upcoming NEJM.  My case is studied in contrast to my friend who had the benefit of Soliris treatment prior to delivery (and nary a complication).  I'm the "when things go wrong" portion of the paper.  I honestly don't know how I feel about that. There was a time I'd be proud that others could learn from my experience...that others could be spared a similar fate.  Lately, I'm not feeling so generous...perhaps it's because my sons suffered as well.

Can I borrow a cup of sugar?

It's a funny thing, this therapy thing. Dr. R is an amazing listener and very perceptive...she's easy to release to and yet at the same time she makes me work. Most often, I leave her sessions not only exhausted but also with food for thought or curiosity or reason for heavy reflection. Today wasn't much different in that sense. But today I was also hit with a realization of sorts - that in my quest to be sunny - in my quest for optimism and healthy emotion in the face of what Dr R has assured me has been monumentally challenging negative crap, I have become a master at covering up the bad feelings it's caused. In order to cope and move forward and be okay in my day-to-day, I deftly intellectualize my sadness and hurt and move on. I am a top-notch coper. I have become a master processor - the lemons come in, I add some water and sugar and voila: it's all good. Problem is, it's all been backing up. My psyche is sick from too many lemons. And I'm all out of water and sugar. And there is no quick fix for this.

This was my first session since vacation, and I thought I had it beat. I felt good, relaxed, okay. And when I sat on the couch and we got through a cursory update about happy times and sand and sun, Dr. R asked the dreaded question: have you had thoughts about the ICU? Instantly, tears welled up and came pouring out- apparently even the mere mention still wields enough of a wallop to break me. My chest felt hot, my throat tightened. What's this about? I asked her when I was able relax again. Wait - I'm supposed to answer that, aren't I? Indeed. When I'm ready.

At the end as I prepared to leave, she asked me to consider my dark side - I don't have to think happy thoughts all the time. It's okay to explore what makes me feel badly - what makes me hurt - when I'm feeling distressed or aggitated, to be curious about it for a while instead of breaking out the happy broom to sweep it away. I find this...excruciatingly hard. This really is work.