The Joy of the Lord is My Strength

Discussions on grieving infant death & stillbirth; only the strength of the Lord makes it possible to tell the tale...

Saturday, September 30, 2006

Hanging in There...

Today was rather obnoxious. It was emotionally draining and exhausting. I did a little debate writing with some voluteer staff at one of my loss sites. They think they're supportive, but they've done nothing but add to my heartache. Figures. I was hormonal and pms'y. I need a vacation from life. I got my headers done for the new October threads. I updated my other blog and now I'm left spent without much else to say. Ben's home this evening. It's nice to have him here. Ah well, almost Mad TV time.

Friday, September 29, 2006

US Mountain Time

Central Europe

East Australia

Thursday, September 28, 2006

Thursday the 28th--A Very Special Anne Day

Just closing the day with some Thursday the 28th blessings. My sweetie Anne was born on a Thursday the 28th, 17 months ago this very day. My how she took my breath away (and has hardly given it back since her departure 15months ago, also this very day. I pray her rainbow presence sparkles upon everyone this very special Anne Day

Tuesday, September 26, 2006

Bedtime and Butterflies

Setting up my photo features. So many new Internet options to make life easy to publish. I've started blogging on -- I like it. I like it here too. I need to work on Isaiah Twentyeight and get some Bible study lessons done. So much to do, so little time. I posted a bunch of pictures of Maggie--I call her Magnolia, Lily's sister. I can't wait for her to arrive. I had a huge argument with an ebay seller over a broken angel earlier today. People suck! Oh well, karma's a bitch--thank goodness I'm saved by grace! off to bed before it gets later.

Monday, September 25, 2006

Double Diamond

Headstones. I own TWO of them. Their overall value is worth more than my car. I've gone without finer things and fancy vacations in order to buy them. I spend the money I would have spent on them had they lived. They would have needed clothes, food, toys and health care expenses. It costs money to have kids no matter how frugal one is.

So when I hear people's excuses about how they can't afford a headstone for their child, I have to ask myself how on earth did they plan on affording the kid if it had lived??? Most mortuaries are very generous in their layaway options. There's typically a fairly broad selection to choose from, with a variety of price ranges to fit one's needs. So why would someone not have the money to buy a headstone for their "beloved" child???

Too much previous debt?
Okay. But then how would they have managed that debt if the child had lived (and ended up costing even more than a headstone)? What extraneous sacrifices in food, clothes, toys or medical care would the living child have had to cope with?

Brian & I did the math. A small to average headstone runs about $600. In an 18month layaway, that's only $33 a month--less than $10 a week. Wouldn't that have been spent on the baby if he'd have lived? I would think so. But maybe with hand-me-downs, breastfeeding and medicaid, a family might be able to get away with not spending $10 a week on the new baby.

And yet we're pretty poor, and I don't I think I would have been able to not spend some sort of money each week on the baby. This is America--land of the spenders. And if we were already spending on our other children too, it would have been really hard not to spend at least a little something on the baby as the months went by.

We've been pretty poor over the last few years. Even at our poorest, I'm positive that we could have paid off the cheapest headstone within two years time--that runs just over $5 a week--people eat more at McD's or toss it away at the video rental store. That's such a reasonable plan that anything less really makes me question how a family would have coped with finances if the baby hadn't died.

Actually, I guess I have to admit that I question the real feasibility that a headstone is too expensive for even the poorest of families. We're amongst some of the poorest people we know, and yet we managed to buy TWO headstones in less than two years time. Plus, we put the expense of a granite bench on a credit card as a contribution to the baby cemetery. We took out debt, took up donations, and just plain did without things so we could use our credit card space to get it all paid for.

In light of all that, I have to confess it bothers me a great deal when parents go off and leave their child's gravesite unfinished. It bothers me when they use the excuse that they can't afford a headstone. Quite frankly, it's my own experience with both poverty and purchasing headstones, that if you can't whittle the money out of your budget to do a two-yr layaway plan for a headstone, then you can't afford the kid in the first place. What sort of welfare lifestyle are you putting your living children through if you can't work out a layaway on a simple headstone for a child that's died? What are you doing having more children if you can't afford to buy a simple headmarker for your child who died?

I recently show'd off my headstone pics to other loss moms that I know. I was met with a terrible response in guilt whereby one mom said, "boo hoo poor me, I wish I could afford a headstone for my baby." Of course, she has since had another baby after losing her son to the grave nearly two years ago. She bemoans not being able to afford a headstone for him and how badly she wishes they were able.

Excuse me, but how unfair of her to attmept to make me feel badly for "showing off" my headstones by saying "boo hoo it must be nice to afford such lavishness." Especially when she's had nearly two years to set money away. Not to mention that she's gone on to have another baby since then--how do they manage to afford their new baby if they couldn't afford the one who died??? She got a new baby and I got another headstone, but boo hoo you're so lucky to have such nice headstones, and I wish I had one too but I can't afford it.

In my old baby stompin grounds, I don't get to sport my baby pictures. My babies are dead and I get to take pictures of two seasonally decorated headstones instead. You'd think I could at least be given enough space to enjoy the simple pleasure of posting my pictures. But no, there's always got to be someone who needs to take that away from me too.

In the end, she made it agnoizingly clear that I made her feel bad because they haven't set away money for his headstone after all this time. I made her feel like a schmuck for not being more fiscally organized. And thus, "boo hoo your pictures made me feel like a terrible parent--and thanks for rubbing it in."

Great. So in response, you're going to make ME feel terrible for posting my pictures. The way I see it, if poor pathetic me can get multiple headstones paid for, then anybody in the poorest of families can pay for one. If you can't get it done it's because you have your head in your butt--especially after two years have gone by. I've seen the sort of cars people drive when they stop by the cememtery. I've seen with my own two eyes the types of people who bury their baby and then go off and leave a temporary marker to rot in the ground for multiple years. There's no excuse.

Sunday, September 24, 2006


Convinced of my deception
I've always been a fool
I fear this love reaction
Just like you said I would

A rose could never lie
About the love it brings
And I could never promise
To be any of those things


If I was not so weak
If I was not so cold
If I was not so scared of being broken
Growing old
I would be...
I would be...
I would be...

Blessed are the shallow
Depth they'll never find
Seemed to be some comfort
In rooms I try to hide

Exposed beyond the shadows
You take the cup from me
Your dirt removes my blindness
Your pain becomes my peace

If I was not so cold
If I was not so scared of being broken
Growing old
I would be...
I would be...
I would be...


It's A Dream

It's A Dream
Neil Young

In the morning when I wake up and listen to the sound
Of the birds outside on the roof
I try to ignore what the paper says
And I try not to read all the news
And I'll hold you if you had a bad dream
And I hope it never comes true
'Cause you and I been through so many things together
And the sun starts climbing the roof

It's a dream
Only a dream
And it's fading now
Fading away
It's only a dream
Just a memory without anywhere to stay

The Red River stills flows through my home town
Rollin' and tumblin' on its way
Swirling around the old bridge pylons
Where a boy fishes the morning away
His bicycle leans on an oak tree
While the cars rumble over his head
An aeroplane leaves a trail in an empty blue sky
And the young birds call out to be fed

It's a dream
Only a dream
And it's fading now
Fading away
It's only a dream
Just a memory without anywhere to stay

An old man walks along on the sidewalk
Sunglasses and an old Stetson hat
The four winds blow the back of his overcoat away
As he stops with the policeman to chat
And a train rolls out of the station
That was really somethin' in its day
Picking up speed on the straight prairie rails
As it carries the passengers away

It's gone
Only a dream
And it's fading now
Fading away
Only a dream
Just a memory without anywhere to stay

It's a dream
Only a dream
And it's fading now
Fading away
It's only a dream
Just a memory without anywhere to stay

It's a dream
Only a dream
And it's fading now
Fading away

The Cure - Love Song

No matter how far away...
I will always love you!

Saturday, September 23, 2006

Saturday's Suffering Sorrow

I've had a hard time shaking the bummers. I posted a little bit in my buddy group, but then a new pgcy announcement overshadowed my pity party, so I rather sulked back into my corner. I swear there's only a couple that even read my posts anyway. But I don't want to whine about my feelings of isolation and abandonment. I've been pouring my loneliness into the girls. I found a wonderful site for free website hosting, so I've been getting those up & going.

This morning gave off a distinct autumn vibrance--the season of Abigail has arrived. The sound of the drying leaves blowing in the chill grey breeze; the pipe organ chimes up high in the trees capturing the voice of winter on its way; the grey hazy color of the sky; the musty fragrance of summer heading south, and the chill of frost on its way...

She was supposed to come and bless our lives. Her precious dark haired little self was supposed to come in time for Christmas and give us a gift from God Himself. But He took that special Christmas package back and kept it unto Himself. He left us with the autumn winter and the cold grey chill of a season forever engraved upon my heart as Abigail Weather.

Friday, September 22, 2006

Begin the Season of Abigail

I'm invisible. I've made journal posts and several board posts; ignored. I've sent many cards; ignored. Nothing comes in the mail for me. No one responds with any praises to my posts. I'm utterly astonished that people can be so whooooosh; over your head. I'm hurting. CD15

my baby girls' new pages--putting my attention into them instead of they who would ignore me.

Tuesday, September 19, 2006

Thought of You Today

We thought of you with love today,
but that is nothing new.
We thought about you yesterday,
and days before that, too.
We think of you in silence
and often speak your name.
Now all we have is memories,
and your picture in a frame.
Your memory is our keepsake
in which we'll never part.
God has you in his keeping.
We have you in our hearts.

Monday, September 18, 2006

I Will Always Love You

Photobucket - Video and Image Hosting

I miss her soft fuzzy head upon my lips
The velvet softness of her skin
The precious sound of the coos & squeaks that she spoke to me
Oh my goodness and the sparkle in her eyes
And her stubby, chubby legs

I miss her incredible spunkiness and how hard she tried
I’ve never known anyone more brave or strong or more determined
Or patient & mellow & sweet
It’s amazing how badly she wanted to participate with life;
to be part of her family
Her will to live is what shone so brightly
What a priceless soul
I still can’t grasp how I’ll ever live without her

The cool of the last many mornings remind me vividly of our routine we once had together
The nighttimes when I go to bed I weep because it’s as if it were yesterday
And she should be here too
The memories of her are thick in the warm summer air

The seasons are so noticeable now
Vibrant and expressive
Abstract elements have become more concrete
How it smells and feels and sounds at different times of the year
The lighting of the landscape brings flashbacks here & there
Spring/summer is for AnneAutumn/winter is for Abigail
Seasons capture the fragments of my broken heart

I can’t tell you how badly I wish it could all be different
That makes no sense since in due time it will all fade into an obscure dream anyway
Did it ever even happen? It’s hard to remember
That’s what will become of it all in due time—that’s what becomes of us all
I hate that some parts vanish so quickly
While other aspects linger on forever
Time flies so fast and yet it hasn't budged
Life is a time warp in the most astonishing way

Seasons hold it all together
There really is a Plan
Somehow it’s the way it’s supposed to be
Lucky me
No really; I am truly blessed

Even in the tears--great giant oceans of tears
The story I have, such an incredible story
It seems custom-made to help others through their stories
It would appear He designed it this way on purpose

It's hard not to be furious
What’s so special about me that I got this plan? If I only knew
I kick against God’s plan like a spoiled rotten toddler
And yet if I only knew all He would do...

I want to help others to know life more intensely
To help them make alternate choices
To think about Heaven’s perspective more intently
To see life more preciously
To know love more deeply

Please Lord fill the hole that’s left within my heart
It’s God-sized, ya know!
Only YOU can fill it
Tho so many wonderful people have done a wonderful job in helping
It’s a hole that YOU created the day my girls grew wings and flew to their new Home

I'm counting on YOU
Make me patient as I wait through the Homesickness
Fill the gaping wound with YOU
That I might overflow it to others
To remind them that she is NOT dead
She has simply moved
That we WILL be together again, YOU, me, them
Only time & rainbows keep us apart

Please tell them how much I miss them
But don’t tell them about such sadness or how much I still cry
They don’t need to know that part
Tell them that my tears are great liquid drops of joy
For it’s so wonderful that they exist, that YOU made them just for me
It's so wondeful that they wait for me and help YOU build the Mansions of YOUR Kingdom

Remind them to play nice as sisters, and to do each other’s hair
So much beautiful hair
Tell them lots of stories of their mama
And how much they are deeply loved
Tell them how lovingly their daddy tends to where their bodies rest
And teach them eager patience in waiting Resurrection
Tell them how strongly we’ve come to believe YOUR Promises
And how thankful we are that they wait for us to join them

Yes, I miss the cuddly warmth of her body on my arm
I miss the roundness of her cheek and her sweet & sparkly charm
I miss the servant’s tasks of bath, bottles and diapers
I miss scrubbing out her crusty eye and bugging her with wipers
I miss loving her
I miss her loving me
Please Lord, don’t ever let me get over that

Catching Up from Yesteryear


This is a photgraph I took of a framed print that was on the wall in my hospital room when Anne was born. It’s the Northern Lights; Aurora Borealis---a shattered rainbow seen only in the darkened night sky. I found this bittersweet information on the Internet not long ago...

The Northern Lights and Folklore

Since time immemorial, through different cultures and whenever they occur, there have been many beliefs about the Northern Lights. The Inuit around Hudson Bay had the following explanation of what they saw:

The sky is a huge dome of hard material arched over the flat earth. On the outside there is light. In the dome there are a large number of small holes, and through these holes you can see the light from the outside when it is dark. And through these holes the spirits of the dead can pass into the heavenly regions. The way to Heaven leads over a narrow bridge, which spans an enormous abyss. The spirits that were already in Heaven light torches to guide the feet of the new

These torches are called the Northern Lights. In Middle-Age Europe, the Northern Lights were thought to be reflections of heavenly warriors. As a kind of posthumous reward, the soldiers that gave their lives for their King and country were allowed to battle on the skies forever. The Northern Lights were the breath of these brave soldiers as they resumed their fight in the skies.

It's just silly folklore, but the Aurora Borealis has touched me quite profoundly since the day the colorful lights of my rainbow were shattered. Anne is on the other side of the Rainbow now. But she has left my heart with a poignant reminder of how spectacularly brilliant she really was; how astonishing her sister must have been. They are both even more astounding than Aurora Borealis--a shattered rainbow seen only through the darkness...

Moody Monday

Ellie's Photo Journey with Trisomy 18...

wishing my baby was alive too...

Sunday, September 17, 2006

Sunday's Sweetie

Friday, September 15, 2006

Substance Abuse & Abortion Study

New Study Finds Higher Substance Use Rates Among Pregnant Women After Abortion

Springfield, IL (July 11, 2005)-- A new study published in the British Journal of Health Psychology has found that women with a history of induced abortion are three times more likely to use illegal drugs during a subsequent pregnancy. The study supports a growing body of evidence which suggests that later pregnancies may arouse unresolved grief over prior abortions which women may seek to suppress by increased reliance on drugs and alcohol.

Researchers from Bowling State University, the University of Texas, and the Elliot Institute examined data from a study sponsored by the U.S. Department of Health and Human Services and the National Institute on Drug Abuse. The data included 1,020 women who gave birth in one of eight Washington, D.C.-area hospitals during 1992. Analyses of the data revealed that while women who had induced abortions were significantly more likely to engage in substance use during subsequent pregnancies, women who had experienced miscarriages or stillbirths were not.

Previous studies have found that women with a history of abortion are subsequently at increased risk for depression, generalized anxiety disorder, suicidal tendencies and psychiatric hospitalization. At least 21 previous studies have linked abortion with increased rates of subsequent drug and alcohol abuse.

"Most women have deeply conflicted feelings about their past abortions," said Elliot Institute director Dr. David Reardon, one of the authors of the new study. "Later pregnancies may arouse or aggravate unsettled emotions. Some women will experience increased anxiety, perhaps about the health of their unborn baby. Others are so awed by the life within them that they begin to question their past choice and feel drowned in self-blame.

"Still others may find that they have a lot of unmourned grief related to a past abortion that is interfering with their ability to enjoy and bond with their new baby. Whatever the individual experience, it is clear that pregnant women with a history of abortion are at greater risk of trying to suppress their turbulent emotions by relying on more alcohol, cigarettes, or illegal drugs."

Substance use during pregnancy is an increasing public health concern. Alcohol and drug use has been linked to numerous problems in infants such as congenital birth defects, low birth weight, developmental and learning problems, and death.

This new study confirms a study recently published in the American Journal of Obstetrics and Gynecology that also revealed higher rates of substance use during later pregnancies among women with a history of induced abortion.

"Medical professionals should be aware of these issues so they can more easily identify which pregnant women are at greater risk of substance use," Reardon said. "Referral to post-abortion counseling and substance abuse programs may not only help protect the unborn child from exposure to dangerous substances, it may also help the mother to resolve issues related to the traumas of a past abortion."

Source: Priscilla K. Coleman, David C. Reardon, and Jesse R. Cougle, "Substance use among pregnant women in the context of previous reproductive loss and desire for current pregnancy," British Journal of Health Psychology (2005), 10:255-268.

MISSing You Both to the Depths of My Soul

This is a cut 'n paste from my introductory post on the MISS grief support site.

I guess I'm coming up on the season when we were at our happiest back in 2003 when we expected Abigail to bless our home & family. It's hard to believe so much time has lapsed when I feel like it was yesterday. The autumn will always belong to Abigail. I guess my heart has been so crushed and I'm struggling to find happiness again.I could make our story very very long, but in a quickie nutshell, here's a beginning:

I was dx'd with pcos at the age of 13--a very long time ago. They told me I'd have no children at all, as my case is very severe. And mostly true to their predictions, PCOS infertility did in fact keep me barren most of my life. Our living son was a true miracle.

After 17 yrs of secondary infertility, we finally conceived Abigail after I'd been on metformin for my diabetes for nearly two years. We didn't know that we should watch for improved ovulation since I was taking the metformin to manage my glucose levels. Of course we were thrilled to find out we were pg again!

I was 41 and diabetic, so Abigail was monitored closely, otherwise my pgcy was routine & uneventful. But sadly, she died in utero after failing a routine NST (nonstress test) just before her due date. The dr was indifferent to her obvious struggles, and sent me home rather than delivering her immediately. She was delivered dead after three days of induced labor. We left without her that cold chill day in December, but we left with a hope that if we could get pg with her, we could try again. And try we did. And then we learned FAM and tried with more efficiency.

Miraculously, we conceived again nine months later and guarded my pgcy like soldiers. We took our care to the university teaching hospital where they specialize in diabetic, high risk pgcies, and we had enough ultrasound monitoring to put anyone's broken heart at ease. We went in for our scheduled induction on the evening of April 27, 2005--cluelessly thrilled about the arrival of our new baby girl.

Fortunately, Anne was born by c-section after experiencing some dangerous cardiac decellerations during early labor. We discovered upon her birth that she had VSD--a heart murmur that ultimately took her life--that would have taken her life during labor if we'd continued along that plan. But after careful review, they suspected trisomy 18 had caused the VSD. A week later, her tests came back positive for trisomy 18. After that, she was deemed a non-candidate for any cardiac care thanks to her trisomy dx--political incorrectness in how they allocate medical spending & attention brushed her off as insignificant. We would have had to leave the state to find a pediatric cardiologist who would work with us. Her life, while spunky and strong, was too frail to be traipsing across the country trying to find a trisomy 18 expert--heck, we don't even have a MISS support group in our state!!!

So they sent us home with hospice with the expectations that she would die--and quite frankly, they didn't care one way or the other. And yet she thrived and grew in spite of their medical indifference and poor medical attention. She grew and enjoyed life without issue until her VSD couldn't maintain her life any longer. Actually, it was the hospice nurse who took her off the cardiac medication the pediatrician had rx'd that was to her demise. Anne ultimately died of congestive heart failure at 11:03pm on June 28th. She went peacefully as she slept in my arms--I'll never forget the look in her eyes as she was being taken away. She wasn't quite ready to go and her face said, "wait, not yet mama; don't go..." But I know she is happy in Heaven even though she misses me--tho not nearly as much as I miss her.

She was our Rainbow Baby and is missed with a grief beyond telling. She plays with her sister in the butterfly meadows of Heaven where we will all be reunited in the not so distant future.

I wish I'd learned about charting and FAM in all my years of barrenness because we could have caught a few more eggs along the way had we known how to catch them. Depending on drs in my life of pcos obesity has not been fun, so seeking help with my barrenness hasn't been something I've felt comfortable doing. It's bad enough the lectures I get about my pcos problems somehow being all about my failures in diet & exercise. Drs have been mistreating me for years, and then they out-right robbed me of my Abigail by not helping her in her time of need. And they may have well taken Anne too for as little as they cared whether she lived or died. Any other baby with the same VSD would have had an appointment with the cardiologist the day after she was released from the hospital. Life's not fair in about a gazillion different ways.

They say that time heals a broken heart ...... ________________________________________
.... problem is: time has stood still since you went away ~~Van Morrison

Monday, September 11, 2006

When Hospice Does More Damage Than Good

You know that movie they play over & over at Christmas with Jimmy Stewart? I’m going to take this opportunity to re-write it....

It’s a Miserable Life
By Vickie Bacon

It was the best of times; it was the worst of times...

no wait; that’s a different book...

Okay so the memorial yesterday was a total bust. It was so hard to get there---gushing like a menstrual fountain and feeling like a mack truck had run me over. But we got there and walked through the doors (being thoroughly ignored by the greeters, I might add).

When up comes our social worker who proceeds to tell me that Anne’s name is NOT in the program afterall because she never got my rsvp. HUH??? I rsvp’d on the 31st of August; what do you mean you didn’t get it??? The whole reason why I went was for that stupid program to add to her scrapbox. I felt like I was in a clueless fog; I didn’t understand what she was saying...

So I choked back my tears and asked her to explain it to me again---why was Anne’s name forgotten from the list again??? I told her that the whole reason we made the attempt to come was for Anne’s name to be in the program, and that I didn’t know if I could stay through the pain, fatigue & disappointment. She apologized profusely, but too little too late seems to be the story of my fucking life!

So she pointed me in the direction of the guest book, and scurried off seeing that she’d royally screwed up by not following up with me sooner[td] And then up walks Anne’s nurse---the one who took her off the lasix and made sure that she would die sooner than later.

She was a bundle of excitement (and actually seemed to expect me to be too). And of course, she looked like a million bucks I might add--total makeover and about 75lbs of weight loss. While I, on the other hand, have gained those 75lbs she lost, so I rather look like a disheveled beached whale (swelling in its decay, enveloped in rotting sea weed & sand crabs).

She took note of how distressed I was and asked how I was doing---that tone of pity that just sends shivers down your spine I couldn’t even muster an answer as I attempted to choke back the tears. I just wagged my head and attempted to sign the quest book. Thankfully, she just walked away without saying another word. I still had my sunglasses on, so gratefully much of my deeper distress was masked.

I guess I didn’t realize how angry I’d feel in seeing her--even though I was prepared to feel some anger. I’d not seen her since that June 29th when she came to pronounce my little sweetie officially dead. Her newfound beauty didn’t help any. It would appear that she got a great new lease on life while I get to be a walking swollen corpse. Great! I didn’t realize how crushed I’d feel not having Anne’s name on the program either. It just never occurred to me that they’d screw that up so badly. It never occured to me that they'd be instrumental in letting her die either, but that fact has sunken in more clearly now.

So we couldn’t decide to stay or go. Brian was upset and hoped that I’d want to leave, but didn’t know how to express his own feelings with so many people mulling around. I felt so freakin’ flustered by it all, but I figured I’d try. So we took a program and went & sat down, but in looking over the brochure, I just started to come apart. There was Katrina’s name and Melanie’s name and D’ana’s name, and several other names from the baby cemetery. All their names were there, but what about mine???

And then I read the "featured poem," a common poem on death & grieving that I utterly despise, and that was the very last straw. I just couldn’t stay a second longer. I whispered to Brian that I had to leave before I came unglued. I could sense his relief as I gathered my purse, got up and left. The social worker and the nurse just stood and watched us leave.

Brian was so upset in the car as we drove off that I cried all afternoon---I cried for us both. He just kept saying “this is the last straw; those people better not ever contact us again for anything, ever...” over and over he expressed words of hurt & frustration while I wept the tears of sorrow & sadness that accompanied his words. It was like a duet; a chorus for grieving parents---a song that no man & woman should ever have to sing with each other.

I was going to sit at the computer and write the rest of the afternoon away, but he bugged me go come away from typing and go to the cemetery while the afternoon was still nice. The man finds solace in his lawn trimmers. He was so pissed when they finally died right in the middle of tending to Katrina’s edging. I’ve been nagging him all summer to go buy new ones, but tight wad that he is they had to completely die before he’d shell out the $40bucks for new ones.
He took the day off today and was over at the Lowe’s first thing when they opened. You’d have thought it was his favorite Christmas toy the way he's pined over those new clippers. Already he’s bugging me to hurry up and finish this so he can go try them out.

It must be approaching the season of Abigail because I’ve been quite moved by my husband’s open expression of his feelings and speaking of the girls so often. He comes home filled with stories of children and babies that captured his attention throughout his day. When we're out & about, he even sees ones that I don’t--and I thought my baby radar was pretty keen.

It’s been emotionally rough, but at least we have each other. At the very least we’re on the same page. I’d die if I had one of those husbands that expected me to be my old self again--a lot of husbands are like that. Many of them never talked openly about their feelings and few have a similar obsession with babies & toddlers like mine does. Thank God Brian & I have that together. He lets me cry on his shoulder whenever I need to--which is almost daily. And he lets me be broken & fragile and pampers me through my recovery. He never puts pressured expectations on me to do better than I have---in fact, he praises me and commends me for doing as well as I have. Even Ben commended me to my niece the other day in his tirade about how his mom had strength the likes of which she’d never begin to understand. It made me feel good to know that amidst my shattered, broken, fragile tears, they have seen God's strength and mighty faith prevail. Thank you God for that!

Roses in Heaven

If Roses grow in Heaven,
Lord please pick a bunch for me.
Place them in her arms and tell her they're from me.
Tell her I Love her
and miss her,
And when she turns to smile,
Place a kiss upon her cheek
and hold her for awhile.
Because remembering her is easy
I do it every day.
But there's an ache within my heart
that will never go away.
~~Author Unknown

Saturday, September 09, 2006

Being Torched in the Refiner's Fire

Well, the software was true to dat, and I actually started my period as scheduled. Once that stupid ovulation happens, it’s all predictable from there. I’m a wreck though. Exhausted, cramps, mess; the tears have finally let down like a hurricane nightmare from hell. I don’t recommend 80day cycles to anyone.

And to top it off, I worry that it very well may interfere with my plans for tomorrow. When I get to gushing from every orifice, I can’t go but a few feet away from my bathroom. And yet, there’s a memorial service for Anne and the other NICU grads that didn’t make it through their first year. Missing it seems out of the question. I don’t get recitals or graduations. All I get is a scattering of memorial services with a program mentioning her name as one of the honored saints.

Do you know how infrequently I get to see her name mentioned in real life?
Do you realize how rarely I get to have my daughter acknowledged by the “real” world around me?
Do you have any idea the excruciation of having such an incredibly important part of my life ignored and abandoned by those who live around me?

This memorial service is all I get. I have to take it any way I can get it---especially since I’ve not been invited out to any type of social event in such a long time. I just worry that I’ll be too much of a bloody disaster trying to get there, and that [i]staying[/i] there for the two-hour event will be impossible.

I worry that the hospice people who may be there will bring on a flood of emotional heartache & anger that will send me over the edge. Moreover, I’ve been a sobbing wreck for days and I don’t really want to be with people, even though I do so desperately want to attend an event that honors my sweetie. Such a miserable Catch-22!

And then there’s my sweet Scarlett Jayne’s second birthday tomorrow. I pray she and my girls will go with me to the memorial tomorrow and help get me through it. I pray she sprinkles rainbow sparkles on her daddy’s birthday, and blesses her mama’s aching heart with her butterfly kisses from Heaven. My heart’s been all in a pinch, but I get like that over love’s sentimental journey.

I had lunch with my mom, sister & nieces yesterday. I hadn’t met with them in a few weeks. I was in utter misery by the time we parted company. My sister is one of these clueless idiots that actually fails (refuses) to grasp that this situation of grieving & heartbreak is not something that came & went with the funeral. She literally refuses to realize that my girls are forever etched upon my heart & mind, and there is NO getting over them. She met me several times yesterday with an attitude that very much reeked of “nothing lost/nothing gained and I don’t know what your problem is.”

So rather than try to actually express myself with her, I sat in silent sadness for most of our lunch--a most typical way of taking my meals with my family. She, my mom and nieces all made small talk about stupid trivial things they’d seen on TV through the week. I wanted to run screaming from the room.

So when my sister got up to take Elizabeth to the bathroom, I then made my attempts to talk to my mother about the memorial service. But then my sister came back entirely too quickly, and expected me to repeat everything I’d been saying to my mother. It was as if she just couldn’t stand that I would dare tell my mother anything that didn’t include her.

So I proceeded to repeat all I’d been sharing with my mom about Anne and the service, but then my sister was rather exasperated when she realized that the subject matter was about baby death & grief. She then proceeded to make several trite remarks about her own exhausted life--as if she can compare her selish exhaustion to my living prison. It was as if she was trying to say in a not so subtle a manner that, she’s got it rough too, if not rougher cuz I'm so lucky to have my "me" time--and I swear her attitude when it comes to stillbirth is that it's a nothing lost/nothing gained situation, so why do I keep on harping on missing someone who never even really existed??? it's not like she was 10 or some "real" age or anything--and she's even said outloud to me that, "they're in Heaven, so I don't know what the problem is" (yea well, let's send Elizabeth to Heaven and see how she feels).

I actually wondered if she didn’t want to tell me that she’s tired of me trying to talk about my girls cuz they’re not "real" anyway, and I’m just using them to get attention. She didn’t say that, but I felt it. I felt it like a locomotive plowing me into hamburger as it speeds through a dark tunnel.

My family sucks. My friends in real life suck. No problem. I've known for years that I’m just a door mat for feet-wiping whenever it’s convenient--as long as I'm not too sad or pathetic or ugly to be around. God forbid any of them actually know what it means to extend a supportive shoulder for all the bullshit I live through. Talk about people vanishing after the funeral--try having TWO funerals and see how many are left...

Alone! Life after baby death is very alone. Friends vanish. Family gets fed up and frustrated. No on in my family grieves my children but me. And how many IRL "friends" even remembered to wish me a happy birthday, let alone remember that my heart & mind are always focued on my children (their minds are focused on their children, why wouldn't it stand to reason that my focus is in the same direction). Morons.

You end up paying good, hard-earned money to have someone so-called over educated specialist sit and listen to the same old story---cuz when the child only lived sixty-one days, the story doesn’t change much. It’s like that finite set of photos---there aren’t any more, so you just recycle the ones you have. It's the same with a listening ear--they hear the same song over & over until they wish you'd go away. Finally, they leave instead. So you pay someone to sit and listen since no one else will. But at the end of their 45-minute hour do they really care??? What’s to care about as long as they get paid?

And I hate to sound like a gloating, vengeful bitch, but Ben had a chance this week to give my niece an ear full. It made me feel better to know that he’d had the courage to tell her off. Of course, last time I did that with my sister I got cut out of the entire family for three years, and have to have two kids die in order to be let back in. Ben expressed years worth of pent up crap about how she, my sisters and mother have hurt us literally to death---especially since Elizabeth was born and they cut us off at the knees, not letting us even know she was born, and then not letting us meet her until after Abigail was dead & three months buried, and then being told by my other sister that I got what I deserved. And then, how they’ve rubbed even more salt in the wounds since Anne died too. sigh

Of course, that obviously had no impact on anything since all my niece did was defend how right she feels like they were, and how stupid we are to feel so hurt (and that in some ways we did get what we deserved). I could barely look at her at our lunch yesterday, and it was clear that nothing has really changed after all these years.

I guess I didn’t really expect it to change. It was just nice that Ben got a chance to speak his mind over how hurtful they’ve been the last four years--he got to let some of it go so he can move on.

In the end, our challenge of practicing Biblical forgiveness has been one of the hardest tests of faith we’ve ever had to endure--burying my girls and "counting it all joy" has, of course, been the hardest test. Truly we have been refined in the Refiner's Fire these last many years!

Anyway, my life’s a total drag and my attitude is complete shit. But at least I’m finally being beaten to death by [oaf] and in a few days hopefully my attitude will improve as the hormones readjust themselves.

In the meantime, for my lurking critics, I just want ya’ll to know that I’m fully aware that my outlook sucks. I’ve had a lot of crap on my shoulders and on my heart--more than most deal with in an entire lifetime--and I've dealt with it all with limited resources & stuggling support systems---and I’ve not even touched on the debilitating chronic pain or fatigue. I think a vent is about due and seemingly acceptable. I'll work on being more encouraging as the saline ocean drains from my bleeding heart.

Friday, September 08, 2006

Amazing Grace Photo Page

Trisomy 18 Foundation
What a special babygirl! Nearly as special as my sweet baby Anne.

Photobucket - Video and Image Hosting

Photobucket - Video and Image Hosting

Photobucket - Video and Image Hosting

Photobucket - Video and Image Hosting

Photobucket - Video and Image Hosting

The Amazing Grace Foundation

Trisomy 18 Foundation:
The 2nd Annual Amazing Grace Charity Golf Tournament

Getting Over the Impossible

Words, Words, Words
by Darcie D. Sims, Ph.D.
Louisville, KY

"He's in a better place."
"At least you have other children'
"She's better off now/not in any pain."
"Where's your faith? You should be happy for him"
"God needed another flower in His garden."
"Time heals all things. "
"You'll be better tomorrow."
"You can't stay sad the rest of your life."
"Your loved one wouldn't want yon to be so sad."
"You can have another baby"
"You were so happy together. Be grateful for that."
"At least he didn't suffer."
"She was so young. You didn't really get to know her that well."

Words; just words. Often spoken in an attempt to ease the pain of grieving the death of someone we love. But, instead of bringing relief, those words just seem to add to the hurt, the confusion, the anger, the grief. There are no words that will make it all right that someone we loved has died.

But there are words that can soothe the hurt, ease the loneliness and add to the healing. I don't think people are trying to hurt grievers. They just seem to engage their mouths before their brains. Or maybe what they were planning on saying sounded pretty good in their heads, but by the time those words of hope made the journey from their minds to their mouths, something happened. And those words came out, sending hurt instead of hope across the space between us.

What are you trying to say? Are you trying to fill the silence between us, show how much you care or how much you know? Do you think words will help when a heart is broken? Why do we hide behind words, any words, when a hug or a simple touch on the arm would say so much more? Have we forgotten the power of presence? Do we fear silence because it might mean we have nothing to say? Why must a moment between friends be filled with noise or empty platitudes or meaningless sounds of hollow comfort? Why can't two people simply be in the presence of each other, allowing that great strength to flow between them without any words to interrupt the message?

"You can have another baby"
"You were so happy together. Be grateful for that. "
"At least he didn't suffer. "
"She was so young. You didn't really get to know her that well." ARRRGGG!

Words! Words! Words meant to help that only add to the hurt. Give me silence, please! Not emptiness ... silence. Not loneliness ... Silence. Don't not come, but come silently. Sit on my couch, hold my hand, share a cookie, hand me a tissue. Come, but leave your words of hollow hope behind. No words can speak more eloquently than the shared silence of presence. Come sit beside me. Hold me. Touch me. Be with me, but leave the noise behind.

Are we afraid that silence will kill us? Are we afraid that we will say "the wrong thing"? (What is the right thing?) Are we afraid that we will "remind" the bereaved of their loss? (Do you think we will ever forget it?)

"Time heals all things."
"You'll be better tomorrow."
"You can't stay sad the rest of your life. "
"Your loved one wouldn't want you to be so sad."

If only I could think of something to say in return! But my mind as well as my body and soul have gone numb. I am frozen and I can't think of anything to say. Sometimes I am so shocked that I cannot believe I heard what you said, or maybe you don't even realize what you said.

"Be happy she's healed now."
"Why are you so sad?"
"We have gathered here to not to mourn the loss of. ... but rather to celebrate his life."

Words. Just words. You'd think they wouldn't hurt so much, but they do. Sometimes it really is better not to say anything. That doesn't mean don't do something ... it means don't use words to fill up the space that sadness occupies. By all means, do something!
Bring flowers,
a casserole (not tuna, please),
chocolate cookies,
paper towels.
Come help with the laundry,
the childcare,
the mail,
the dusting.
Drop off a ham,
a turkey,
a hug.
Send a note,
a lemon meringue pie,
a donation to my loved one's favorite charity.
Slip a note into my pocket,
a card in my mailbox,
a hand into my empty one.
Share a memory,
a laugh,
a moment.
Tell me stories of the past;
bring me pictures from your scrapbook.
Speak of love, not sorrow.
Remember the life, not just the death.
Give me hope, not meaningless words.
Hug me, hold me, love me, leave me,
but don't shower me with words that are meant to soothe, but sear instead. Your presence really is the healing touch. No words need be spoken between friends and family when love is the weaver of the threads.

"He's in a better place."
(I thought right next to me was a pretty good place)
"At least you have other children. "
(Yes, but I really loved that one, too.)
"She's better off now... not in any pain."
(She may be out of pain, but I'm not!)
"Where's your faith? You should be happy for him"
(My faith may help my heart feel better, but it's my arms that are empty and aching.)
"God needed another flower in His garden."
(What about MY garden?!)
"You can have another baby"
(Maybe.., not all can, but no one can replace someone anyway)
"You were so happy together. Be grateful for that."
(I am grateful, but I want more!)
"At least he didn't suffer."
(Yes, that's true, but I am suffering now.)
"She was so young. You didn't really get to know her that well."
(Since when does age have anything to do with how much someone is loved?)
"Time heals all things."
(Time does nothing except pass. It is what you do with the time that might change things.)
"You'll be better tomorrow."
(Perhaps, but what about today?)
"You can't stay sad the rest of your life."
(Oh yes I can)
"Your loved one wouldn't want you to be so sad."
(How do you know? I have told my loved ones that I expect at least three days of heavy grieving. After that, they can do whatever they wish. But I do want them to be sad... at least a little bit!)
"Be happy she's healed now."
(That may be true, but it is still my heart that is broken ... my arms that are empty. What about me?)
"Why are you so sad?"
(Oh, I don't know ... maybe it's because someone I loved has died.)
"We have gathered here to not to mourn the loss of. .. but rather to celebrate his life."
(The thought here is nice, but the timing seems a bit "off." I am not quite ready to celebrate. I think I need some grieving time, too.)

Words. Just words. Let them fall to the wayside when you hear words that do not quite touch the pain or hit the mark. Realize that someone is tying to reach you, soothe you, comfort you. So what if their choice of words falls short of the goal or even brings a moment or two of pain? At least someone cares enough to keep trying! And the sounds of silence are even worse than the words that come wrapped in good intentions and tied with a silly looking bow. I'll take your comfort any way you can share it with me. But maybe the best words to say are simply, "I'm here and I don't have a clue as to how to help, but I'm here, and together we'll figure this thing out."

Come. Bring your gifts of memories, your arms with chocolates and your presence. Leave the words behind and just come. I'll hear what you mean, not what you say.

From Grief Digest, Centering Corporation, Omaha, NE

Thursday, September 07, 2006

Getting through the Grief

It's been a miserably sad week. It's been a hormonal cycle of events as well, so that doesn't help. I've been so terribly sad--doing lots of grief research and being comforted by the fact that I'm normal. This is life now. I wish upon wishes it was all different.

What's had me agitated today was a conversation my son conveyed to me about his confronting my niece about the family rejection. I'm having to come to grips with the fact that my family is insensitive and clueless. I've got to put on the "all good" mask and pretend like there really isn't any problems between us. Goodness gracious how I'd like to come apart and give them all a piece of my mind--as if my heart hasn't been broken enough. Aaah well. Give it all to God and let Him be the vindicator. Recompense is mine, says the Lord. I just wish they could have their own clueless rosy glasses slapped off their face like I've had mine. In due time. No one can live that clueless for long before Jesus wants you to get real. If she's chosen, then she'll have Him tap on her shoulder in due time. I don't even need to wish it on her cuz it will happen. I just feel so very isolated--the odd man out in my family; no one to relate to. I guess I should feel honored that He singled me out and set me apart. Being set apart by God is a good thing, even if the means He uses really suck!

Other than that, my days have been so stinkin' sad. My heart just yearns to weep and weep. In fact, the days have been many since my last good sob, so I'm in need of one very soon.

I finished reading Mike Frazier's book, "Surviving the Storm." It was very good. I found him through Tyler Perry's video play, "Meet the Browns." Mike Frazier is Tyler Perry's band director. He lost both his parents, 11yo nephew, 2yo daughter and his baby's mama in a flash flood accident back in 1995. I've known his grief; I know it still. I've buried two little girls and there are some days when the whole world is just thick & black. I feel like I've been smothered by a wet soggy carpet. I just hurt all over my body, mind and soul. Such grief is a lifetime of agony, and Heaven can't come fast enough. I was inspired by Mike in that if he can survive then so can I.

It's just a drag that survival is so hard, and that's all it is: "survival." To soar and really enjoy life again seems like a real impossibility. One can only hope. The grief may be too big to heal from here on earth; I'm hip to that. If nothing else, we can cling to the hope of the Rainbow and the life we're promised on the Other Side. The miracle of the whole thing is that I still love the Lord and I'm still persuaded that He loves me. Truly No Thing can separate us from the love that is in Christ Jesus.

And so it is true that His mercy endures forever. I can live with that if that's all I have left to hold onto. He's given me the gift of knowing a very deep definition of what He meant when He said that His grace is sufficient. To have such a gift shared with me is truly the only gift necessary to have in this life.

Thank you Lord. No matter what leprosy should seek to devour me, please don't ever let me be one of the nine who forgot to come back and worship You. Always hold me as the Apple of Your Eye; as the one who came back to thank You. Thank you for forgiving me when I fail.

Sunday, September 03, 2006

Ladybug Languish & Dragon Fly Dreams