Ongoing Damage part 2

Over a year ago, my preteen girl was diagnosed with mono or a malady very like it.  It was almost impossible to wake her for school.  I had to dress her like a doll and still often couldn't wake her afterward.  Every day felt like the improv game of dead bodies where I had to manipulate a floppy person who was almost as tall as I am.  I finally just let the school know she was not coming or coming late every morning we couldn't wake her.  Summer couldn't come soon enough.  Over the summer, she got better but not all the way.  She showed every sign of chronic fatigue. 

Recently, I called the doctor's office to get some ideas of how to help my girl through these symptoms, which still haven't faded entirely.  I figured she still had the mono, which I had heard could become chronic.  When I talked to the nurse and told her my perception of the situation, she suggested good vitamins and getting her walking in the sun for vitamin D.  But the doctor said these symptoms are psychosomatic, that they have their root in psychology.  He recommended we get a therapist and/or have her work through a kids' therapy workbook. There's no pill to fix her.  There's no easy fix.  And it all started with the early trauma and tragedy of losing her sister on which the trauma of a bully, of a teacher that created an emotionally damaging environment, and other life events have only built to change her from an extreme extrovert who trusted the world to an extreme introvert drained by too much "peopling." 

On one level, she's done a lot of healing since her traumas.  She's gained a lot of confidence and self-assurance in her gifts and abilities.  On the other hand, it's hard to know how far she has to go and what being healed looks like.  All I can do is be there for her, give her those workbooks the doctor recommends since she has no interest in therapists, and help her turn toward God for the healing the atonement offers. 

Ongoing Damage

                                                               (Tummy time for three)

I'm no psychologist, but I'm pretty sure my kids' emotional fragility is somehow connected with wounds from losing their little sister early in life.  My girl was three, and my boy was five when their little sister was just gone.  But I'm pretty sure the insecurities created then still play into their subconscious.  The damage festers on, whether they know it or not. 

(A boy and his baby sister)

My boy never really bonded.  They would do tummy time, but he was upset from the beginning he was getting yet another sister instead of his longed-for brother.  He wished her away...then she was gone.  He had been asking for a pacman frog just before we lost Alli, then the YouTube videos of pacman frogs eating just about everything small and weak figured heavily in his dreams after my angel died.  He no longer wanted one.  His own bed terrified him.  We had to get a new one, one he's had ever since.  He woke at 5 every morning for weeks and couldn't get enough sleep.  He finally got settled into better sleep patterns with the help of his doctor, but it was rough.  I think the bigger damage was guilt and fear became part of him, deep down inside.  Guilt that he had somehow caused her loss.  Fear that he could be next. 

(A girl and her baby sister)

For my girl, the damage was catastrophic.  She adored her little sister.  Her whole life circled around the little bundle of pink, the little sister she'd dreamed of, hoped for, and felt a bond with long before Alli came.  The day before I even knew I was pregnant, my little girl came and said, "My sister is coming," and nothing could shake her conviction because she just KNEW.  Then, for all of Alli's life, she wanted to be right there with her, comparing toes and fingers, asking about what "me-baby" was like.  Then, her heart was ripped out when her sister was just gone.  She knew without us telling her how Alli had died.  We were vague with the kids because we didn't want them afraid to go to sleep, but Alli had told her before she left.  Their bond was strong to the end. 

(Mourning)

Now, she doesn't remember her sister, really.  Neither of them do.  We look at Alli's picture book and talk about her sometimes, at least on her birthday and Angelversary.  But every time I cried, the kids would get scared and upset.  My girl would never want to talk about her sister, even at the time, claiming anytime she cried, it was for her cat that died a short time later.  I shared with them my sadness as openly as they would let me.  They worked hard to distance themselves from my mourning and from their own.  We took them to therapy, but the therapist had ulterior motives for all she did and really did not interact with the kids much.  She was eager to fish for evidence against us for the state's fraudulent case, so anything we said or did would show up as "evidence," even objecting to an early morning appointment so the kids could get enough sleep.  Despite our best efforts, they got no real therapy.  Due to this bad experience, I am in no hurry to subject any of us to more "therapy." 

(Fragile peace.)

But I see it in their fragility, especially my girl's.  Her immune system is terrible.  Part of that was she caught mono over a year ago, but part of that is she's always been that way.  It's almost like she feels guilty deep down inside that she lived, while Alli did not.  While her brother, the preemie-born child, was going strong, rarely sick, she's caught everything from strep to several colds and flus a year to that case of mono.  Emotionally, she's just as fragile.  She acts strong, confident, like she's healed, but since Alli's loss, she's wanted me there every night to watch over her as she went to sleep.  When she's sick or tired, she reaches for mommy to comfort her even during her preteen years.  She can't stand being around those in pain and in mourning because she has the kind of empathy where she senses others' emotions and is often strongly influenced by them.  She's gone from being an extrovert, eager to interact with others, to being an introvert, unwilling to let most people in.  Losing her sister broke her, and she's still trying to put the pieces back together.  She had a bullying situation and a teacher that was overbearing that damaged her further, but it all started when her world was shattered on one bright day in late June almost 8 years ago. 

(Healing hearts)

I'm thankful for the healing both kids have undergone.  I'm grateful for the times they have been willing to share their pain, when we could cry together.  I'm thankful for the cat that Alli sent her at the time my girl was most fragile, a cat that has helped her through much of her healing process.  I'm thankful for the healing power of the Lord in all of our lives.  Overall, both kids are doing well, are mostly happy.  But deep inside, I can still see broken hearts struggling to heal the rest of the way. I will continue to pray that their loss and healing makes them stronger than they otherwise may have been. 

Too much Death

I don't know if it's just me, but it feels like I can't hop on FaceBook or even the news without hearing about world-rocking loss hitting someone I know.  One day, I spent about five minutes online and found news of three deaths, all in rapid succession. A friend of mine posted a news article of how her niece and her niece's best friend were hit by a truck, which killed one of them.  Another friend is reeling from the death of a cousin.  Another friend's mother unexpectedly passed away.  And so on.  Then, of course, were the loss of the three-year-old I wrote about last time and the loss of my good friend's beloved husband I wrote about some time ago.  They all break my heart because they were so sudden and unexpected.  Each of them broke multiple hearts.  And the list of loss rolls on.  For the sake of one of my friends, I looked up a FaceBook support group for mothers of angels.  Now, I get the stream on my FaceBook wall of pictures of babies mourned.  It's almost a shock to see a baby who is still alive and well. 

I don't actually know most of those who were lost, but I feel their pain.  It's so hard to be living life, feeling like everything is okay when someone calls or something happenszx, and your world falls apart.  I run into constant reminders of how fragile life is and how precious the moments are.  I know families can be forever, but loss is so hard in the here and now.  I fell into the trap of self-blame, and I can only imagine that's a very real struggle in the lives of many of those who have lost those they love. 

It's such a helpless feeling to hear about someone's pain when you can't do anything.  All you want to do is take away their pain, yet you know it's not possible.  All I can do in many cases is pray for their peace.  Healing is hard.  I know my prayers and others' prayers softened the pain.  I know the Lord carried me when I could no longer walk.  I just hope and pray those with such fresh pain are blessed with the same.

Paranoid

When a mom has lost a baby--or maybe I should just say since I lost a baby--everything that may harm or endanger one of the remaining children is terrifying.  Many people identify with this Disney princess or that Disney prince.  At one time, I identified with Belle and Mulan.  Now, I'm Marlin from "Finding Nemo" and its sequel.  Well, Marlin and Dory since one of the symptoms of mourning is forgetfulness.  A helicopter parent is more standoffish than I usually feel when I take my kids into public.  I'm a fighter drone parent, hovering as close as it's possible to my kids without riding their shoulders.  My greatest fear is more loss.  I've read John Douglas's FBI perspective on violent crimes.  Some part of me fears that the second I leave my kids unguarded, they'll become another headline, another statistic.

I'm right now reading Jenny Hess's In His Hands,  a book about an LDS mom's loss of her little boy.  They went sledding on a family vacation, and the boy and his dad hit a tree.  The boy died of the impact.  I'm going to have a hard time letting my kids go sledding after this.  I feel empathy for that mom.  I can't imagine losing a child at the age of four or later when you've actually had the time to get to know them.  But I really get what it is to have all the trust, all the safety you imagined there to be in the world, shattered over loss.  Most people who haven't lost children walk through their lives imagining a safety bubble around their kids.  It's not possible to lose a child because they haven't yet.  It's not even a possibility.  That was me before I lost Alli.  Now, I imagine horrors behind every corner.  I would do almost anything to avoid loss again.

My girl is napping in the other room with flu.  It's all I can do not to shake her awake because I've heard the phrase "flulike symptoms" altogether too many times in those articles about sudden and medically flukish deaths.  I know she needs her rest.  But I don't rest well when there is any danger at all to my kids.

I'm sure I'm not alone.  My logical side knows all the fear, all the worry, in the world won't protect them.  I know only the Lord can protect them, and only He can decide whether they stay or go.  When my girl was three--just after Alli died--she had a seizure on the beach.  I was so freaked out that loss was happening again.  I got a priesthood blessing that told me my kids had missions on this life, that they had a higher purpose.   I've come back to that many times when I've been overcome with fear for any reason.  I keep telling myself they will be fine.  But I still have to fight off that fear, that understanding one loss means there can be others.  It would be nice to go back to a trust that my kids have a safety bubble.  But I can't.  All I can do is pray and move forward, hoping whatever their missions are in this life will take a very, very long time.

Easter

I got to share my testimony today of the death and resurrection of Jesus Christ with the three-to-four-year-olds I teach in church.  Usually, teaching children of this age is a bit like herding kittens.  If you're entertaining enough and bounce around enough, you'll catch and keep their eye.  If you sit still for any length of time, you've lost them.  They're off to bat at something more interesting.  Today, I talked about one of the topics they know and love most of all: Jesus.  They know His picture as a baby or as a big person.  They love to talk about or act out the Christmas story.  Everything beyond that gets a little hazy.

But then I pulled out a picture of my baby and told them that because Jesus suffered and died for us, he paid the price for our sins.  He suffered all our pains, so He would understand them and comfort us when we hurt.  He overcame death, so I can hold my baby again.  We can have our families forever because of the atonement.  They were transfixed, but their reaction went beyond that.  I cried, so they cried tears of empathy.  Their spirits listened and understood my pain and my joy.  Shortly after, they were back to acting like kittens again.  By the end of the class, when I wasn't telling them stories anymore and after they were done with their snacks and structured games, they were tackling each other and playing loudly like any good kittens [or small children] would.  But for that moment, we all understood and felt the power of the Spirit, confirming the truth of my words.  I will ever cherish the beauty and strength of that moment.

Gratitude

I have had some hard days recently.  But I know that I have to focus on gratitude for what I do have rather than on sorrow for what I don't or for what I've lost.  When I think back over all we've been through with my baby's death and five years of miscarriage, I'm tempted to fall into a dark place of pain and sadness.  It would be easy to do.  

However, this week is Thanksgiving in the US.  It's a time to reflect on all we've been given.  It's time to invite joy in by showing my living children how much I appreciate them by spending more time with them.  It's time to hold my husband and those two sweet kids close to my heart and focus on the joy that comes with counting my blessings.  Thanksgiving is about more than food.  It's about cherishing the moments with those we love.  It's about making memories.  And this week, I am determined to cherish every moment and make wonderful memories.   

The Rainbow Fades

So far, I've mostly written blogs about the early days of loss.  If you'll pardon me for stepping out of my pattern, I'd like to fast forward to today.  I lost another baby this week, a very early pregnancy.  This is always a hard thing, but this one is particularly hard.  Almost everyone who loses a baby looks forward to their rainbow, the baby born after the loss.  This week, after 13 early pregnancies, the latest at ten weeks and the earliest at just over four, I'm finally facing the apparent fact that my body will not carry another baby.  I'll go into some detail at a later date on individual miscarriages.

But for now, I'm just processing the thought that I will not get a rainbow.  It's not a pretty thought, but I don't think there's anything we can do about it.  Some suggest artificial insemination.  What good would that do if my body just won't carry them for whatever reason?  Some might suggest adoption.  I'll get to that in a later blog post, why that is not likely to happen aside from the expense and our age.  I'm nearly forty.  My husband is nearly 50.  It doesn't even make any sense that we have been trying like we have.  But we just felt like there was another one waiting.  Now we see that it is not to be.  My body just will not do it.  I've done the testing, and the doctors come out without any answers for me.  I tried some pills I was given to try to keep my next pregnancy, but they did not help.  

In the beginning, all I wanted was a warm body to fill my empty, cold arms.  I don't think I could have then survived the thought that my arms would remain empty of another baby.  Now, I know I will survive.  It's been a long journey.  I will focus on my gratitude that I have a wonderful husband and two beautiful children I can still hold.  That won't make repeat loss any easier nor the fading rainbow in my imagination any less sad.  It still hurts.  Sometimes, it hurts so badly I still cry like my heart is bursting.  I dread the day very soon when I will let my baby clothes and toys I've held onto for all these years go.  

But I know that there will come a day when I can hold my babies.  I will live for that day, the Second Coming, when I can fill my arms with them again or for the first time, and that reunion will be forever.  And it will be very sweet.  

my Eclipse

The Mother's day before we lost Alamanda, I got a voice mail that told me my brother was dead.   He'd been my best friend all through my childhood, youth, and early adulthood.  But for a couple of years before he passed, we hadn't been talking to each other.  It is a long, ugly story.  But then, without warning, he was gone entirely.  He had been gone for a while from my life, really, uninterested in contact.  But the news shocked me, really sent me into shock.  Until that point, I hadn't lost anyone closer to me than a beloved pet, all of my grandparents, who were ailing and not particularly close to me when they passed, and an uncle I didn't see much.  These were all significant losses, and I don't mean to diminish anyone's experience who goes through these pains.  But I'd never lost anyone truly close until I lost Brent.  It hurt that we had lost the closeness we had once shared.

The news of my brother's death had not truly sunk in when just over a month later, I called home after work to find out my baby was not breathing and had been rushed to the hospital.  To lose loved ones with whom I had little contact was hard, at times devastating.  The losses of some of my favorite pets had left me reeling.  But the pain of all of these losses before did not prepare me for the loss of my baby, the center of my existence.  My older children and husband were and are incredibly important to me.  But anyone who has been a mother to a small infant knows that your world revolves around that infant.  You wake [several times a night] for that baby.  Your first thought in the morning is to tend to the baby.  Half of your brain is always occupied on taking care of that baby.  Your body, especially if you're breast feeding, is keenly aware of his or her existence and the baby's needs at all times.  To have that closeness ripped away is beyond a physical agony.  In fact, I'd rather undergo physical torture than the loss of a child.

I can't speak for all parents.  But I can speak to my experience.  There is nothing worse than the loss of a child.  Nothing.  Here is another poem written a month after the first.  The pain had become slightly but only slightly less acute.  But in my experience, there's no such thing as getting over such a loss.  Only getting through and surviving it.

"A month has passed"

A month has passed

Since I held you in my arms.

Already, the image of your large,

Blue, curious eyes peering at me

Around the breast,

Already the sense of your round warmth

Is fading from my memory

Until you are only a series of pictures

And an aching, sometimes gushing, heart

And a spirit watching me, cheering me on.

The memory of what was

Hides behind the present,

But in quiet moments,

The agony revisits with a twisting sword.

Words cannot convey the pain of your departure.

I strain for the sound of your name

On anyone’s lips but my own.

Your warmth and the glow of your smile,

The happy giggle at my silly face

Seem like a pleasant dream,

The image from my mind

Rather than a reality from my past.

I miss you more than words can say

Even as I wonder how it can be

You were ever part of my life.

Come back.

I've come a long way from when I wrote these poems and early entries.  But I know I have a lot farther to go.  Which is one reason I'm writing these blogs.  Because of so much loss piled on loss, I don't know that I can claim I've really processed or healed from my brother's death.  Often, it hardly seems real, like he just hasn't gotten around to writing recently.  Maybe I'm still in shock from both of these losses.   I struggle to find a meaning for the word "healing" when it comes to loss, at least a meaning I like.  I guess that's because, for everyone, it means something different .  

How to begin?

I found a draft from the post I made for this blog, one I never published from five years ago.  I explain what happened in the next post.

A week ago today, our four month old baby girl, Alamanda, died. I left her on the bed, seemingly far enough from the edge that there shouldn't have been a problem, and buffered from the edge by a firm pillow, then I went to work. She somehow found a way to get off the bed face first into a pillow and smothered. My husband was home and found her. He called 911 and performed CPR, but it was too late. My husband, my children, and myself are all devastated but trying to find a way to pick up the shreds of our lives and move forward.

It's hard to describe the emotional roller coaster we've been through over the last week. Everything from exquisite agony to the peace of knowing without a doubt that we will one day hold our little girl again. This blog will reflect not just my experiences but those of my husband in this impossibly difficult situation. So many others have been through this kind of pain, the loss of a child, before, but everyone's experience is different, and this is our pain. This journey is uniquely ours, but will hopefully help someone else along the way.

We are LDS, of the Church of Jesus Christ of Latter-Day Saints. We believe in forever families. But that doesn't always make things easy.

Today, at the week's anniversary, I marked the hours. I checked my clock and marked the hour when a week ago I was feeding her as I held her close, safe and warm in my arms. I marked again when, a week ago, I went to work, something I don't do often and won't do again for a while. I marked again when, a week ago, my husband walked in to check on her, and she was fine. Then again when he walked in and found his world had shattered around him. Then again when I called after work, and my life shattered around me as I rushed to the hospital.

The scenes are all a blur in my mind, doctors coming in to tell me they were doing everything to revive her, the doctor who came in to tell me there was nothing they could do. Then a flurry of counselors, police detectives and CPS workers whose job it is, as a matter of course, to investigate a child's death. It still feels like a nightmare in my mind. People embraced me; members of my church came to support me; my husband came to hold me up. But everything people said to me felt useless next to the aching knowlege that my baby was gone. My husband and I got to hold her lifeless body tight one last time, to kiss her face. But the pain was greater than any we have ever known.

I wrote a poem after that day:

Pain
Blinding, numbing
Burning like a volcano
And clouding out everything
From my vision.
Everything tastes like dirt or salt.
I choke it down to fill the emptiness
But the real emptiness remains.
Everything I see, touch, think about
Links back to chubby toes,
Chunky little legs
Soft little cheeks,
Bright blue eyes
Staring at me from around the breast,
Peach fuzz across the soft head,
Round little bum
Aimed at me for a change
Preparatory to eating.
Where are you, my angel?
I long for you.
My every thought is for you,
Wondering how yesterday could have gone
If I’d have been just a little more careful
With your fragility.
My only comforts,
Your older brother and sister,
Your daddy
And above all knowing one day
You will fill my arms again.

There is more, so much more. The last week has felt more like five years, and my baby sometimes like a fond dream rather than a sweet reality. But for now, this is all I can write.

Tami