Monday, November 24, 2008

our sisterhood

To give credit where credit is due, the following essay is borrowed from a great cyber-friend and sister. Reading this really touched me and made me think of those of us who've been touched by preeclampsia/HELLP and the long-term effects it can have on our lives and our children.

To You, My Sisters

by Maureen K. Higgins -

Many of you I have never even met face to face, but
I've searched you out every day. I've looked for you
on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well
worn. You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with
your very heart and soul. You are compassionate beyond
the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority. We are special. Just like any
other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for
months or even years. Some of us even tried to refuse
membership, but to no avail.

We were initiated in neurologist's offices and NICUs,
in obstetrician's offices, in emergency rooms, and during
ultrasounds. We were initiated with somber
telephone calls, consultations, evaluations, blood
tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things
were fine. We were pregnant, or we had just given
birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything
was fine. Then, whether it happened in an instant, as
it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn't
quite right. Then we found ourselves mothers of
children with special needs.

We are united, we sisters, regardless of the diversity
of our children's special needs. Some of our children
undergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable
to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against
those mothers whose children's needs are not as
"special" as our child's. We have mutual respect and
empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with
whatever materials we could find. We know "the"
specialists in the field. We know "the" neurologists,
"the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know
"the" degenerative and progressive diseases and we
hold our breath while our children are tested for
them. Without formal education, we could become board
certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school
boards to get what our children need to survive, and
to flourish. We have prevailed upon the State to
include augmentative communication devices in special
education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait
trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities
to have our children properly classified so they could
receive education and evaluation commensurate with
their diagnosis. We have learned to deal with the rest
of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during
"tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have
tolerated inane suggestions and home remedies from
well-meaning strangers. We have tolerated mothers of
children without special needs complaining about
chicken pox and ear infections. We have learned that
many of our closest friends can't understand what it's
like to be in our sorority, and don't even want to

We have our own personal copies of Emily Perl
Kingsley's "A Trip To Holland" and Erma Bombeck's "The
Special Mother". We keep them by our bedside and read
and reread them during our toughest hours. We have
coped with holidays. We have found ways to get our
physically handicapped children to the neighbors'
front doors on Halloween, and we have found ways to
help our deaf children form the words, "trick or
treat." We have accepted that our children with
sensory dysfunction will never wear velvet or lace on
Christmas. We have painted a canvas of lights and a
blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And
all the while, we have tried to create a festive
atmosphere for the rest of our family. We've gotten up
every morning since our journey began wondering how
we'd make it through another day, and gone to bed
every evening not sure how we did it.

We've mourned the fact that we never got to relax and
sip red wine in Italy. We've mourned the fact that our
trip to Holland has required much more baggage than we
ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport
without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never
stop believing. Our love for our special children and
our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and
extra points and home runs.

We visualize them running sprints and marathons. We
dream of them planting vegetable seeds, riding horses
and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes
smeared with watercolors, and their fingers flying
over ivory keys in a concert hall. We are amazed at
the grace of their pirouettes. We never, never stop
believing in all they will accomplish as they pass
through this world.

But in the meantime, my sisters, the most important
thing we do, is hold tight to their little hands as
together, we special mothers and our special children,
reach for the stars.

Bless you, my sisters, and a special Happy Thanksgiving to you and to your very special miracles. Keep on holding tightly to their hands..........

Tuesday, September 09, 2008

Post Traumatic Stress

About a month ago, I found out that the wife of one of my coworkers had developed severe preeclampsia 34 weeks along into her fourth pregnancy. She had never had preeclampsia before, but there it was...the nasty, horrifying preeclampsia monster attacking again. I made a mental note to pray for his wife, and hope for the best.

Well, nearly four weeks have passed since then, and today, I saw my coworker. His wife popped into my thoughts immediately.

"Hey! How is your wife? And, how is baby?" I said unsure if his wife was still pregnant.

As he turned his face toward me, I saw it...the post-preeclampsia stress, the realization of how close "this close" actually came and landed on his wife and child. For the next half an hour, he walked us through the events leading up to severe preeclampsia. Unfortunately, his wife suffered from severe pulmonary edema and subsequently developed congestive heart failure. He rushed her to the ER after her obstetrician blew off three times of reporting she felt she couldn't breathe. In fact, breathing had become an effort just standing still, and the OB never bothered to listen to her breath sounds. The ER physicians took her seriously and eventually treated her with Lasix to relieve the severe edema.

While my coworker's wife's story was scary and horrifying, what was such a big reveal for me is that as he recounted her story, post-traumatic stress took over within me. I kept a relatively calm appearance, but I had an overwhelming urge to go crawl in a dark spot somewhere and curl up in a ball. I wanted to yell, shout, scream, and cry at my outrage toward the Preeclampsia Beast and all that it does to unsuspecting women and their families.

I'm confident that I had an anxiety attack, but I worked through it with some relaxation music...yay for iTunes and some slow breathing. I guess this entry is just me letting some more of it out so I can keep on going. I march one day at a time now to stay ahead of my survivor issues...for now.

Friday, May 09, 2008

not everyone feels like we do

If you're a preeclampsia survivor, you likely have hyper-sensitive hearing now when it comes to that word..........preeclampsia. If you hear it, ears perk up and you instinctively react and start listening. You want to know what's being said, whether it's on the news, in a movie or TV show, or in a live conversation that you overhear......which is what happened to me this week.

I was at my son's school, volunteering for a luncheon being given for teachers (Teacher Appreciation Week). We're relatively new at the school, and I don't yet know a lot of the other parents who are active in PTA, etc. We had some down time after we got it set up and were just waiting for teachers to come by and fill their plates. A couple of the other moms were chatting and they apparently already knew each other, so I was just standing nearby and half-way listening to the conversation since it didn't include me. Until I heard that word. She said something like "and then she's going to the doctor twice a week because of the preeclampsia".

I'm truly a pretty shy person, if you meet me in real life. Not very good at meeting and talking to people I don't know; I almost have to force myself to break out and be social, etc because it's not very comfortable to do so. And I wasn't a part of this conversation at all......but after she said this, and I was standing right beside her, she paused a minute and nothing was said. So the power of that word drew me in, and I said "ooh, you said the magic word to me, preeclampsia, because I had that with both of my babies".


Wait for her to say something like "oh, really? What was the situation? Were they preemies?" etc etc etc etc.

Nope, nothing. Just an awkward pause, then she resumes her conversation with the other lady, almost as if I'd not even spoken. The other lady says "when's she due again?" and the first lady says "the 19th". So this tells me that she's about 38 weeks, which is a good thing of course, and quite different from my situations. But something about the way they were discussing this gave me the impression that they didn't think that the PE was all that serious or a very big deal. They immediately went off into giggling over an "argument" about on which day the baby would actually arrive.

I was just mildly irritated at the time, but now that I've had time to think it over, I feel more sad than mad. The words "kindred spirit" come to mind, because as weird as it may sound, that's how I almost instantly feel when I run across another PE survivor, or even hear someone talking about one. The connection of a shared experience, shared understanding of something that a big majority of the world doesn't even know exists. And yet when I reached out to this woman, shared something of myself, it was basically ignored and treated as if it was no big deal instead of as an instant connection and bond.

I just thought that everyone who'd been touched by PE would feel like I do, but apparently not. The community of people who understand is small enough already; it's sad to think that even among the PE survivors and their families, some don't seem to have been touched in quite the same way. Kind of a lonely feeling.

Wednesday, April 09, 2008

A flashback moment

Let me set the scene for micropreemie (700 grams), now age 4 and feisty, was in his carseat eating fast-food "hash rounds" for breakfast. Healthy, huh? ;) I was in the front seat, but turned around to look at him and talk to him......yes, the car was parked, LOL! In his other hand, he's clutching the latest in a string of stuffed animals he's become attached to......a gray cat Beanie Baby with a red ribbon on its neck.

I gave this to him last night, mainly because he's lost/misplaced most of the other "snuggly friends" as he calls them. So I pulled this one down from a shelf in his room, and told him about it: This is the very first stuffed animal you ever had! You had this with you when you were a "baby in the hospital" which is what I call the NICU time when talking to them. He instantly loved it, snuggled up and went to sleep. This morning, he asked to take it to school to use for naptime, so I agreed.

Anyway, fast forward past the car trouble and other drama of our the parking lot of the fast food place. He's holding "my kitty" and saying that he loves it, etc, and then something caught my eye.......on the kitty's tail are two small pieces of white adhesive medical tape. Well, it used to be white, anyway. You know, the kind that they use to make sure IVs or bandages stay attached.

When the Beanie Baby was given to him, it was the same size he was! We took it with us to our hotel room at night to sleep with it, as the nurses instructed. That way, it would get our scent onto it, and then it could be inside the isolette with him....for comfort, reassurance, etc even when we couldn't actually be there. Once he came home, I basically put the Beanie away so that it could stay "safe" since it was an extra-special one to us. It hasn't really been played with at all......and now, I'm shocked right back to 2004 when I see those pieces of tape on there. I reached out to pull them off, and then thought "no, those pieces represent something, and I'm gonna let them stay on".

Funny, though, how something as tiny as that can transport you through time, and bring back memories that are so fresh it's as if they just happened. Oh, and we're going to the NICU reunion this Saturday too, so that's another chance to bring it all back......but also a chance to show off my big boys and how wonderfully they're doing today. :)

Monday, March 31, 2008

Mixed Emotions

Preeclampsia survivors often experience post-traumatic reactions during the times of year when the initial onset of their preeclampsia/HELLP symptoms surfaced. As mothers we celebrate the births of our children, but those emotions are often bittersweet. Denise, a HELLP survivor, recounts those feelings in this poignant post on her blog, A Woman with Hobbit Feet:

Sunday, February 10, 2008

The Fake Cure for Preeclampsia/HELLP

Today, I was reviewing my personal blog's site meter. I often read the referring URLs to see how someone happened upon my blog. Readers often find my blog using Google, which happens to own Blogger where I blog, and this blog is hosted. Since Google now includes its blogspot sites in searches, someone happened upon my blog by entering these search words:

HELLP pre eclampsia

In the results which Google brought back with those search words, I found a fraud, fake, incredible lie, untruth, falsehood...whatever you want to call it. There in the results was a blog, which is hosted by Wordpress, which purports to have a diet which prevents preeclampsia or HELLP. I refuse to name that blog here, which doesn't deserve to exist.

I serves to prey on women who are dealing with a serious medical condition and are feeling distraught and upset at what is happening or has happened to them. Preeclampsia and HELLP have no cure.

Delivery of the baby begins the process of stopping the progression of the symptoms, but there is no cure. Magnesium sulfate helps, but there is nothing you can eat or not eat which stops it. There is no proven, medical research that has a cure.

When it happens, it will be the biggest breakthrough in obstetrics and gynecology. It will make the national news. It will be celebrated by ALL preeclampsia/HELLP survivors.

Monday, January 21, 2008


Preeclampsia bubbles up for me again...

Jen, mom of Grace & Meghan