Amanda’s Story

I have tried to start this post more than once this week but nothing came.   Five years is a long time.  Today would have been Amanda’s 5th birthday.   In the last five years we have moved forward with our lives without our daughter and sister.   She is never far from our thoughts but we do move forward.  We still have bad days but after 5 years there are certainly more good than bad. 

I sit here tonight in the dark with the glow of the computer screen on my face wondering what would be different if Amanda had lived.    Most people think going down that road is only dwelling on things I can’t change.    Normally when you lose a loved one you have specific things to remember about them.   The way they looked  when you knew you were in trouble.  The sound of their voice,  sound of their laugh.  These are the things that people use to get through grief and remember the one lost.   I don’t have any of that.    Amanda never opened her eyes, she never smiled.  I never got to see her personality.   Would she be a tomboy like me or somewhere in the middle like Allison?  Would she like sports or computer games like Alex?    By 5 years old she would have sorted out most of that stuff and pretty much know who she was and who she wanted to be.  But she didn’t get the chance.  I am left wondering who she would  have been.     I usually imagine that she would have been somewhere in he middle between Alex and Allison.  They are polar opposites and she would have been the one somewhere in the middle. 

Other things would be different.. my house would be louder,  we would have less money,  that chair at the dinner table would be filled.    I wouldn’t be walking this life long journey of grief.   We would have presents to open on her birthdays instead of releasing balloons. 

Things would be very different.   I would still be the person that thought bad stuff happened to other people.   But I would have also missed the most beautiful amazing moment in my life.   The moment I held her in my arms and knew she had gone from this life to the next. 

Happy Birthday My Sweet Angel

Its November again.  I wrote last year about how much I dislike this month and why.  I made it almost to the half way point before having an freak out melt down.  I was doing so well.  I have many things planned to keep me busy and my mind off the anger and sadness that threatens to overwhelm me.   But tonight it all came crashing down on me.  In the chaos of what is dinner time.  I was trying to get Tony to help me he was being distracted by the dog, kids and what else I don’t know.  I spilled corn all over the floor and loudly said “Can I have some help please”  I yelled it yes it was not my best moment.  Then he yelled back I am helping he had yet to see the corn everywhere.  I became very upset and yelled at him to stop yelling at me.  He returned the anger and I lost it.  Kicked a gate down ran upstairs in tears where I am currently hiding out.

I never loose it like that with Tony or the kids except this time of year.   Last year I completely avoided putting the Christmas tree up because it all ways ends in a fight and yelling.  A great way to start the holiday season.   Now that the November issues (I don’t even know what to call it) has come upon me I am not sure how I am going to make it through all the stuff I have planned for the rest of the month.

I miss my baby girl and the life I was suppose to have with her!

Kim

This was posted on the Potter’s Syndrome Message board.

Feb. 26, 2006
Copyright: Las Vegas Review-Journal

STEVEN KALAS: When you lose a child, grieving is a lifelong experience

When our first child is born, a loud voice says, “Runners, take your marks!” We hear the starting gun and the race begins. It’s a race we must win at all cost. We have to win. The competition is called “I’ll race you to the grave.” I’m currently racing three sons. I really want to win.

Not everyone wins.

I’m here at the national meeting of Compassionate Friends, an organization offering support and resources for parents who lose the race. I’m wandering the halls during the “break-out” sessions. In this room are parents whose children died in car accidents. Over there is a room full of parents of murdered children. Parents of cancer victims are at the end of the hall. Miscarriages and stillbirths are grouped together, as are parents who have survived a child’s suicide. And so it goes.

In a few minutes, I’m going to address Compassionate Friends. This is the toughest audience of my life. I mix with the gathering crowd, and a woman from Delaware glances at my name tag. Her name tag has a photo of her deceased son. My name tag is absent photos.

“So … you haven’t … lost anyone,” she says cautiously.

“My three sons are yet alive, if that’s what you’re asking me,” I say gently.

She tries to nod politely, but I can see that I’ve lost credibility in her eyes. She’s wondering who invited this speaker, and what on earth he could ever have to say to her.

My address is titled “The Myth of Getting Over It.” It’s my attempt to answer the driving questions of grieving parents: When will I get over this? How do I get over this?

You don’t get over it. Getting over it is an inappropriate goal. An unreasonable hope. The loss of a child changes you. It changes your marriage. It changes the way birds sing. It changes the way the sun rises and sets. You are forever different.

You don’t want to get over it. Don’t act surprised. As awful a burden as grief is, you know intuitively that it matters, that it is profoundly important to be grieving. Your grief plays a crucial part in staying connected to your child’s life. To give up your grief would mean losing your child yet again. If I had the power to take your grief away, you’d fight me to keep it. Your grief is awful, but it is also holy. And somewhere inside you, you know that.

The goal is not to get over it. The goal is to get on with it.

Profound grief is like being in a stage play wherein suddenly the stagehands push a huge grand piano into the middle of the set. The piano paralyzes the play. It dominates the stage. No matter where you move, it impedes your sight lines, your blocking, your ability to interact with the other players. You keep banging into it, surprised each time that it’s still there. It takes all your concentration to work around it, this at a time when you have little ability or desire to concentrate on anything.

The piano changes everything. The entire play must be rewritten around it.

But over time the piano is pushed to stage left. Then to upper stage left. You are the playwright, and slowly, surely, you begin to find the impetus and wherewithal to stop reacting to the intrusive piano. Instead, you engage it. Instead of writing every scene around the piano, you begin to write the piano into each scene, into the story of your life.

You learn to play that piano. You’re surprised to find that you want to play, that it’s meaningful, even peaceful to play it. At first your songs are filled with pain, bitterness, even despair. But later you find your songs contain beauty, peace, a greater capacity for love and compassion. You and grief — together — begin to compose hope. Who’da thought?

Your grief becomes an intimate treasure, though the spaces between the grief lengthen. You no longer need to play the piano every day, or even every month. But later, when you’re 84, staring out your kitchen window on a random Tuesday morning, you welcome the sigh, the tears, the wistful pain that moves through your heart and reminds you that your child’s life mattered.

You wipe the dust off the piano and sit down to play.

Steven Kalas is a behavioral health consultant and counselor at Clear View Counseling and Wellness Center in Las Vegas. Contact him at skalas@reviewjournal.com.

This week Steven Curtis Chapman released his latest Single to radio.   It is a song he wrote before Maria’s passing with an added verse he wrote after.

This was an amazing song when first released on the This Moment album back in October.  Now with the new verse its heart breaking and uplifting at the same time.

In the 4 years since we placed Amanda in the arms of Jesus I have never been able to accurately express what that experience felt like.   I am not a writer I search for the right words but they don’t always come out how I mean them to, or they seem to be missing something.    Well in these few lines added to this song Steven has managed to put into words exactly how I felt and feel.

“Yours”  (new verse)

I’ve walked the valley of death’s shadow
So deep and dark that I could barely breathe
I’ve had to let go of more than I could bear
And questioned everything that I believe
But still even here
in this great darkness
A comfort and hope come breaking through
As I can say in life or death
God we belong to you.

Steven and Mary Beth Chapman will be on Good Morning America tomorrow morning and then on Larry King Live on Thursday night.   Praying so hard for them this week as they open their aching hearts to the world.

Kim

We spent a quiet day at home.  It stopped raining just long enough for us to do the balloon release.  We also had cake.

Last year I wrote a series of blog post Entitled “3 years ago”, they recounted our journey from the ultrasound on March 16, 2004 to Amanda’s Birth on July 13, 2004.   I have not done the same thing this year as I  didn’t feel the need to completely revisit the entire journey.

Amanda would have been 4 years old this summer.  The old cliche says “Time heals all wounds”  or  the less caring one “Give it some time you will get over it” nice huh?   I don’t particularly like any of the sayings people come up with when trying to comfort someone after they have lost a loved one.   But there is some truth in them.   The more time goes by the easier it is to get out of bed everyday.  The easier it is to see a pregnant woman with out a stabbing pain in my gut.  But its not easier because I miss her less, love her less, or think about her less.

The best way to describe it is the grief and pain is like an open wound.  In the beginning it hurts like Hell and all you can do is think about how much it hurts.  As the wound begins to heal the pain is less but it is still very sensitive and any little nick will open it up again.  Like seeing a pregnant woman or a newborn baby.  Each time the wound opens again it heals just a little faster then the time before.  Then as more time goes buy the scab gets a bit stronger and it takes more to open the wound again.  And eventually the wound heals leaving a scar as a reminder of your journey.

I am to the point where it takes a good bit to open the would but it is not healed over yet.   To this end I have taken a step back from a few things I was involved with.   I was very active in Angels in Atlanta, a service organization that helps families dealing with childhood cancer.  In the beginning my wounds were open all the time and these families pain didn’t add to my own.   But as time went by every time we heard about or read about a child losing the battle and the struggle the parents were going through to pick up the pieces my wounds would open again.  I have reached a point where I can’t handle the constant pain and suffering mine and the families we were helping.   I need to heal.  I still keep up with the Angels in Atlanta website but haven’t volunteered for anything since before Christmas. I don’t know if this is a temporary break I do hope I can continue my support for this wonderful organization at some point in the future.

So 4 years later I am still healing but everyday gets easier and harder at the same time.  The realization that Amanda would be 4 years old this summer is mind boggling to me.  It seems like a life time ago but at the same time seems just like yesterday.

When a baby is destined to die

The link above is to an MSN article about Poor Prenatal Diagnosis.  This article does a very good job of describing what its like and how the world around you looks upon you when you choose to carry a baby to term that is destined to die.  The questions the looks of not understanding our choices.  Along with the support and compassion for our choice.

This is the one section of the article that speaks volumes.

Both options — to terminate or continue the pregnancy — are heartbreaking.

“It’s the worst news that anyone could get — that your child is going to die,” says Schoonveld. “These horrible feelings aren’t going to go away with a termination. But the flip side is that they’re not going to go away after a baby is born either. … For many families it’s their first real parenting decision.”

Many have family and friends who are mystified as to why a couple would continue a pregnancy knowing their child will die. Loved ones often fear that by continuing on, the parents are simply delaying their grief or torturing themselves. What will they say to strangers who casually ask if the nursery is ready? And what if bringing the baby into this world causes the child suffering?

But for some, the pregnancy feels precious because it may be the only time they’ll get to be with that child, says Schoonveld. “I think most people who have continued want to experience as much time with the baby as possible and want to hopefully meet the baby.”

Other families may have religious reasons that guide their choice. Sometimes parents may hold out a hope that somehow the terminal diagnosis was wrong. And others just don’t want to be the one who decides when their baby dies.

“Don’t assume we’re Luddites or religious fanatics,” Kuebelbeck says. “Don’t assume we’re saints. We’re just parents doing the best we can.”

We experienced ALL of the above!

Initially I was very torn about our decision.   I didn’t think I could carry a baby for 5 more months knowing he/she was going to die.  But on the flip side I also could not be the one to make the decision to end her life.

So many times Tony and I were told how strong we were and how amazing a job we did and how we were such an inspiration.  We really didn’t understand and still don’t.  So many people told us they didn’t think they could do what we did.  My response to that is “You do what you have to”.  We didn’t make our journey alone.  Our faith carried us just as our Lord carried Amanda to heaven that day in July.

I am encouraged that carrying a terminally ill baby to term is becoming more accepted.  And hospitals and birthing centers are becoming equipped to deal with this situation in a compassionate way, because I know not everyone has a positive experience like we did when Amanda was born.

Kim

The kids have been at my Moms for the last 2 days.  We go to pick them up this afternoon.  It is awful quiet around here with out them running through the house.

Last night we attended a Steven Curtis Chapman Concert at a church that’s not too far from here.   As always he puts on a great show.  We had a lot of fun.   This particular leg of the Live in this Moment tour has a by request section.  You could send in your requests via his website and he would sing as many as he could.  Well both Tony and I requested songs and he sang my request and attempted Tony’s request.

I requested “With Hope”.  This was one of the songs we played at Amanda’s Funeral.  And also the song I used for her video.  I had never seen him sing this song live and with the opportunity to make a request for him to do so I just couldn’t pass it up.

I videoed it with my small digital camera. It’s not great but it’s clear enough. I missed the part that he said “This is for Kim” started it right after that.  Oh well.

Tony’s request was “See the Glory” I wish I had videoed this one because it was hysterical, Steven forgot the words had to start it twice and finally gave up.

Kim

Oh How much I hate this question. Almost as much as I hate the “How many children do you have?” question.

For some reason if you have a child between 1 and 2 years old people ask this all the time. To answer this question its a BIG FAT NO. We are not going to have anymore babies. Problem is people can’t take no for an answer. I get “Ah why not you make such cute kids”. Yes but they are not always healthy! The risks of loosing another child are too great for us to consider going down that road again.

I always wanted 3 kids. I will always dream of having 5 people at the Dinner table. When we go to restaurants and they ask how many, though I speak the number 4 there are really 5 of us.

In my heart I am the Mother of 3 children. My heart Aches for Amanda everyday. My arms don’t get to hold her. My eyes don’t get to see her. However I dream of her, of what kind of baby and toddler she would have been. I also dream of what kind of person she would have grown up to be.

Tony and I have discussed adoption and it comes up every now and then. Nothing serious yet and won’t be until Allison is a bit older. I think Tony is content with our family as it is. I would like to adopt but still not sure if its a need to fill that spot at the Dinner table. Or the belief that I have enough to give another child.

Whatever the out come of the adoption discussion I will not be having anymore babies. If when we adopt it will be a slightly older child between ages 3-5 (why we want to wait until Allie is older).

I think this was my mini vent preparing for the many times I will be asked this question over the next few months with the upcoming holidays.

Kim