Aynslee a.k.a. Ava's baby siser

Ava wearing her "big sister" shirt. (I put on the shirt...she dressed the rest). 

Ava kissing her "baby siser"!

Jim & I talked about the mixed feelings that went with Aynslee not knowing Ava. She was not here when Ava was here. Ava very much loved her baby sister, anticipated her arrival, singing "I'm gonna be a big siser", wanting to sleep beside my tummy...ON my tummy so that she could be close to Aynslee. Did Ava know that week? Is that why she wanted to sleep so close to her baby sister? Did she know in a few short days, her daddy and I would lay in a bed with her as she went to Heaven...with her baby sister in my tummy kicking and hugging her from inside my belly? Did. She. Know??? They had not gotten the chance to learn about one another, to play dolls, to fight, to share secrets.  It broke our heart to know those things could never be, BUT she wouldn't have to grow up with the missing that Jim and I felt...or would she? 

I have some vague notion that one day, when Aynslee is possibly nine, or twelve, she would come to me and say “So, Mom.  This Ava person?  Tell me about her.”  And I would sit down and tell her about a sister she had...sweet big sister Ava. I’d  show her the special things. Perhaps open those creaky chester drawers and pull out some faded dresses, her shoes, some old pictures. And how, against all I believed possible, we survived losing her.  Maybe she’d sit quietly and absorb and feel a pain of missing she may not have had before. I don’t really know but the hazy reel played something like that.

It still scares me.  I don’t want Aynslee to miss Ava...bad...like we do. I don’t want a day where she cries, I mean really cries, for the yearning of her big sister.  I don’t want to have to explain where she went, and why. I don’t even know why.   I feel so guilty that she will grow up with even a little bit of the wishing and wondering that we carry.  I see her alone and it makes my heart hurt.  To look at her, to see how very, very much she resembles Ava, to imagine two of them – so similar – side by side.  My heart hurts all over again.  To think of my own life, growing up with a constant playmate, a confidant, almost a part of my self, called sister...my best friend...

There is a place in my grief that belongs to Aynslee alone, and some days it’s just so much bigger than the rest.

The "missing"

On such a "normal" night..sunglasses, kicks, pull up, watching t.v....the messy room. i.miss.this.

The last video of her...playing with her much loved "bitty baby". 

I struggle to explain why some days I float, and some days I don’t.   Today,  for no definable reason, the yearning and the missing cloud the normalcy of a regular summer day that would have looked something like this: 

• Wake early
• breakfast
• watch t.v./get dressed
• go swimming (pool, lake, whatever)
• McDonalds drive thru
• Dinner
• Bed

But, from the inside, filtered through hazey grief, my day looks this:

I’ve not even opened my eyes but I can feel the clouds...I’m already missing and I remember the last video of her, the one of her playing with bitty baby...and it reminds me how she will never know motherhood

and

I disbelieve, still, while I start my coffee and wonder how the making of coffee and breakfast for just me can leave me feeling so empty

and

a little while later...I walk down the hall and I catch a glimpse of her room and I wish it were messy...and the t.v  was on...Dora, Kai Lan, Mickey Mouse clubhouse... 

and

then I pick Aynslee up...give her a big kiss.....but I can only think about the lovely princess who isn’t on my other hip

and

who isn’t ordering her own hamburger and apple juice and all I want to do is tell the cashier that today, just like yesterday and tomorrow,

I am missing my sweet Ava.

and

I eat dinner...with one chair empty...looking at the crumbs on a pink placemat...and I miss. 

and 

I lay one child down to sleep instead of two... I close my eyes...realizing I should never have to breath without my sweet girl...but I do, and I miss...in all the corners of my soul...

I am missing my sweet Ava. 

Somewhere over the rainbow

The double rainbow seen by friends when we were saying our goodbye's to Ava on 3/21/10.

I am waking up to your footsteps on the floor.   Making cinnamon rolls for breakfast.   Putting bows in your hair.   Making strawberry milk.      Buying things that sparkle.      Taking you to dance.    Showing you off.    Watching you swim.     Hearing you sing.    Taking your pictures.     Blue m&m's.      Laughing at your laugh.     Princesses. Reading "Big Sister, Little Sister".    Kissing you goodnight.    Breathing you in.      Marveling.   Adoring.   Expecting a tomorrow. 

Somewhere over the rainbow.

fear(less)

"Ava's silly face" as she called it...oh how i miss this!

No one ever told me about the fear that comes with grief.  It is a terror beyond anything I have ever known.  The moments of that night....waking up with Ava, knowing instantly that we might lose her, then waiting for 48 hours at the hospital until we did… and then facing a lifetime without her.   I am scared...so very scared.  I hear myself saying “I’m just so scared that this is real“.   We are actually living our worst nightmare! 

“You never recover from the loss of a child“.  I hear that oh so much from so many who have lost. To my newly grieving, terrified self, those words are sometimes unbearable.  I can’t fathom never recovering!   But I also can’t fathom life ever being any different.  So, I’ve  been wondering...what is  “recovered”?  What does that even mean?  That you should return to the griefless, untouched self you once were?  Well of course you don’t!  How can you hold your lifeless, adored, child and cry and beg God to give her back and not walk away changed? I have to  face overwhelming sadness throughout my every day and have to learn to incorporate it into a life that doesn’t like to pause...a world that didn't pause for my loss.  Of course I am different.  But, from what I can see now, I come from a place of total devastation, and somehow find a way to open my eyes, breath,  and face another day without my beautiful baby girl. Recovered?  I don’t know...if that is possible...   Altered?  Without doubt.

 It isn’t enough to just remember Ava with smiles and fond memories.   I need the tears.

I'm still learning

Ellie and Ava

Some of the things I have learned so far through this horrible grief journey: 

* Grief is hard work! Nearly all my energy is consumed by this thing called "grief". I have little energy for anything else. 

* Life is not fair!!!

*Bad things happen to good people.

*It’s up to me to make a decision to become better, not bitter.

*Everything I have experienced in this life has had an impact on me.

*My life is a work in progress.

*I need to talk about Ava. It keeps her memory alive.

*It’s o.k. to be mad at God, - God can handle it. He is a bereaved parent too, so He truly understands my pain and sorrow.

*God knows how long you will live even before you are born. (there is a "master plan")

*How great Heaven must be! 

*I can love my child as much in death as I loved her in life. 

*I should share my experience, strength, and hope with other bereaved parents. 

* Life can change in a heartbeat. 

*I have very little control over events in this world.

*It simply takes too much energy just to dress in the morning, to make the simple decision to eat, to stifle tears in public, and to keep my anger from inappropriately erupting...

So my journey continues....I will let you know when I can add to this list.  

No one "gets" it.

Well, I have to say....3 months after the worst of the worst, I am still going. I get up everyday, take care of my precious infant, and do what is needed for me to "make it" in this world. Nothing more, nothing less. But I have to say, people are "adding" to my pain...No, not on purpose, they don't mean too. People are telling me, "You HAVE to find joy in life again", "You NEED to be  happy again". Ok, really?? How can anyone tell me what I "NEED" unless you have been there? Don't get me wrong, I have had many and MOST people be of great support. Many can sympathize with me, many cry with me, and many grieve the loss over Ava as well. Most of these people have not "been there", but they can offer me words of comfort, a shoulder to cry on and an ear to talk to....But then, I have a few who think my sadness should be replaced by joy, ALREADY? REALLY?? Please, please read on...this is taken directly from a blog of a mother who lost her 16 year old daughter...after her years of training as a psychotherapist. She is a mother/Christian, and therapist. She has a great perspective on a mothers/parents grief. I feel that educating people on child loss grief is important...it is important that they know how to handle me, us, and it is important that they understand what we feel and how we doing our "grief work" seems to be the "NORM" in child loss grief...so please, read on! 

Failure to mourn impairs a life. Most people's problems with mourning are not caused by compounded losses; their problems are caused by other people's desires to get mourning over with.

Family, friends, and medical staff want accommodation of the loss as quickly as possible. Only through mourning can we find a life on the other side of loss.

We need to grieve losses and find people who will accept that grieving. To grieve well is to value what you have lost.

~Arthur Frank At the Will of the Body

Mayo Clinic’s Definition of Complicated Grief:

Mental health experts are still analyzing how complicated grief symptoms differ from those of normal grief or other bereavement reactions. During the first few months after a loss, many signs and symptoms of normal grief are the same as those of complicated grief. However, while normal grief symptoms gradually start to fade, those of complicated grief get worse or linger. Complicated grief is like being in a chronic, heightened state of mourning.

American Psychiatric Association's Evolution of Assessment of "Complicated Grief":

One group of researchers... is examining factors that identify people at risk for complicated grief, (Robert) Neimeyer (of the University of Memphis) says. The researchers are objectively assessing risk factors by reviewing the circumstances surrounding deaths.

Chronic and unremitting grief is typically associated with sudden, unexpected and traumatic death, the loss of children or young people, and the relative closeness of the bereaved person to the deceased, the report says. Particular risk factors include excessive dependency in the relationship with the decedent or a history of mental illnesses such as depression in the bereaved, Neimeyer says.

********************************************

In my opinion, the norm for any grieving parent who has been thrown into a parent’s worst nightmare of the loss of one’s child is a state of grief that physicians would call “Complicated Grief.”

Any loss of a loved one will throw a person into grief for weeks, months, and to a milder degree through the years.

But the loss of a child is a whole different kind of loss.

So please do not call this depth and degree of grief a “disorder.”

Please do not say these parents are people who are “stuck” in their grief.

Please do not call this “prolonged grief.”

Complicated Grief in the case of grieving the death of a child IS JUST parent-grief, normal, ordinary parent-grief when parents lose the heart and soul of their life in the loss of a precious child.

COMPLICATED GRIEF DOES NOT DIFFER FROM “NORMAL” GRIEF FOR CHILD-LOSS PARENTS. COMPLICATED GRIEF IS THE NORM FOR CHILD-LOSS PARENTS.

Please rewrite your books.

Please rewrite your manuals.

Please revamp your antiquated studies.

Child-loss brings a whole different kind of grief to a person.

The closest description I can find to date that best captures this grief might align somewhat with what you would call “complicated grief.” And yes, it is complicated. And yes, many times, it can also be called "traumatic grief" because it very often brings its own trauma into a parent’s life.

BUT THIS TRAUMATIC GRIEF, AND THIS COMPLICATED GRIEF, IS NOT ABNORMAL FOR ANY HEALTHY GRIEVING PARENT!

And none of these symptoms should be signals of anything “unhealthy” or “problematic” for the grieving parent; in child-loss, they just ARE.

You might better use these “symptoms” of Complicated Grief in your manuals as “landmarks along the way” for the "grief of child-loss" to help that grieving parent know they are not crazy; they are not losing their minds; they are not abnormal – they are just dealing with the worst loss life could throw them, and these symptoms are just hurdles along the way that they might expect to undergo…

(Mayo Clinic)

Signs and symptoms of complicated grief can include:

Extreme focus on the loss and reminders of the loved one (You know what? That is what it takes to work through a grief of this nature! You professionals just need to deal with it!)

Intense longing or pining for the deceased (We love our children! We miss them! We want to hug them again! We want to talk to them again! We are normal human beings who miss our children deeply. This is a healthy component to parenting! And therefore, this is a healthy part of processing through our grief of losing our precious child!)

Problems accepting the death (Who can immediately accept their child’s death? Having trouble accepting the unacceptable seems pretty normal to me.)

Numbness or detachment (Well, you try having a 2-ton weight on your heart all day, and see if you don’t get a little numb or feel a little detached every once in awhile for at least a little breather! You aren’t really numb, you just don’t have anything left over for anybody else, so you may just appear to be numb and detached while you are very attached to your own need for healing, thank you very much!)

Preoccupation with your sorrow (Yup, that’s just the nature of the beast. Sorrow over your child’s loss is there, waiting to be dealt with, like it or not. To NOT focus on it in order to help to relieve it would be abnormal and unhealthy in my opinion.)

Bitterness about your loss (Well, you and I might have a different definition for bitterness. Bitterness is anger that never gets resolved; can you give us a little longer than 2-3 months, or 2-3 years, or maybe even 2-3 lifetimes if need-be to get our hurt and anger resolved?)

Inability to enjoy life (Are you telling me you could? Then I would say maybe you aren’t in touch with your emotions!)

Depression or deep sadness (You’d better believe it, and it ain’t going away any time soon, I can promise you that. I would just have to ask you, “Do you even have a child? Are you emotionally connected to them at all? Do you feel a responsibility for their love and safety and health?" Well then you should understand our depression setting in and staying for quite awhile…quite a long while, if not for an entire lifetime!)

Difficulty moving on with life (See description for next symptom below)

Trouble carrying out normal routines (Well, yes, these "normal routines" have been pushed aside to make room for the heart to find some way to survive and breathe, much less thrive in the midst of pure hell being dropped in your lap. "Trouble carrying out normal routines" would be like saying to the tsunami victim, "You just can’t seem to move on with life in any normal way!” Of course not! He simply cannot! Life is NOT normal!)

Withdrawing from social activities (This is perfectly normal I would say. When your heart is so raw, it would be tantamount to walking around in public with no skin on; wouldn’t you as a physician wisely recommend “withdrawal from social activities” so as to avoid any potential toxins along with affording yourself private intensive care to heart, soul, mind, spirit, and body in the privacy of one’s own home? I certainly would hope so; that is what you do for a patient in the hospital when all of his skin is ripped off!)

Feeling that life holds no meaning or purpose (Well, come on now, our hearts have been shot out of us—a little difficult to ascertain life’s meaning or purpose when you’re trying to find your heart, get it repaired, and get it put back into place, knowing it will take a lifetime of comfort to even approach some healing for it.)

Irritability or agitation (You better believe it – and you professionals might want to watch out for our irritability and agitation.)

Lack of trust in others (Pardon me, but would you not be somewhat mistrustful of others when you know they may, and I say may, be able to sympathize (feel pity or sorrow) with your grief, but they can in NO WAY empathize (understand and share the feelings of another) with your grief because they have never "been there"; they cannot possibly "get it" – until you have been thrown into it hook, line, and sinker (mostly sinker...).