Amanda’s Story

It is November 2nd. I am not sure how or why the flipping of a piece
of paper over that has November written at the top can make me feel so
out of sorts.  I am not sure I have ever shared this but I am going to
now.  I HATE the month of November.  October is great.  Allison’s
birthday, my birthday, Halloween, and the beginning of fall are all
wonderful things and great ways to make memories with my children.
November has Thanksgiving and the beginning of The Christmas Season. At
first glance November shouldn’t be all that horrible right?

Holidays are always difficult after you have lost a loved one and
especially a child. But usually you feel grumpy and crabby the day or
the week or month they actually died. Or I see their Birthday being
difficult. For me Amanda’s birth and death came on the same day in
July. But I don’t tend to get upset, angry or sad in July. I rejoice at
her short life and the people she touched.

Its November that is my sad depressed grumpy time of year. It comes
each year just like the flipping of the Calendar with the word November
glaring at me reminding me whats coming.

Why November you might be wondering. Well to be honest I didn’t
realize it until last year. For the past 3 years I have been a total
grump in November. I pick fights with Tony. Throw the equivalent of a 2
year olds fit when decorating the Christmas tree the weekend after
Thanksgiving. In general I am a pain to live with.

November 2003 is when we found out we were pregnant with Amanda. The
day after Thanksgiving to be exact. November 2003 is when we decided
adding to our family is what we wanted and the time was right. November
2003 was the last time I thought I had the perfect life the perfect
family.

We were so excited about adding to our family. Never in my wildest
dreams did I ever consider I wouldn’t get the story book ending.

So it seems every November a dark gloomy cloud parks itself over me
and goes away as mysteriously as it shows up when the Calendar changes
to December 1st.

So for the next 28 days if I don’t seem all the cheerful I am sorry.
Its almost like I combine all my bad days into one month and do it all
at once instead of spreading them out over the year.

Even though I know what is causing it and that its happening it
doesn’t always help me stop the irrational anger and sadness that shows
up unannounced to those around me.

To top it off this November Pastor Robb is leaving our church. He
has accepted another call at a mission church not to far from us.
Pastor Robb was with us that day in July 3 1/2 years ago. My heart and
prayers go with you and your family to your new church home. But it
makes my heart hurt to see you go.

Kim

Today, October 15th is Pregnancy and Infant Loss Awareness Day. Everyone is invited to light a candle on October 15th at 7 p.m. in all time zones, all over the world.

If everyone lights a candle at 7 p.m. and keeps it burning for at least one hour, there will be a continuous WAVE OF LIGHT over the entire world on October 15th.

The candle burns in loving memory of all babies lost through pregnancy and infant loss.

Kim

(This was posted on the Bereavement Message Board)

I am often asked to describe the experience of raising a child with a disability, or being a parent who has experienced a loss- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this:

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

– Emily Pearl Kingsley

I lurk on a Bereaved Parent Message Board. I do not post much these days but some how find comfort in reading.

I have noticed a few things in the past 3 years. There are things that the Bereaved Parents talk about that no parent should ever have to worry about much less discuss on a Message Board!

1. Did you put your baby’s middle name on their headstone?

2. What outfit did you bury your baby in?

3. Concerns over Airport Security with Cremated Remains

4. I must not be a mother, I never got to feel that Love.

5. Happy Angel Day. Instead of Happy Birthday.

6. Poems and Songs about the death of a child are everywhere on these Message Boards.

Here is one I recently found that I like

Little Snowdrop

The world may never notice
If a Snowdrop doesn’t bloom,
Or even pause to wonder
If the petals fall too soon.
But every life that ever forms,
Or ever comes to be,
Touches the world in some small way
For all eternity.

The little one we long for
Was swiftly here and gone.
But the love that was then planted
Is a light that still shines on.
And though our arms are empty,
Our hearts know what to do.
Every beating of our hearts
Says that we love you.

– Author Unknown –

Holidays are very hard, especially Mothers day and Fathers day. There are many posts about how to deal with their own pain for these holidays and also how to deal with Society not recognizing that they are indeed parents.

But whats hard for me is seeing the new names the new losses on these Boards. Moms and Dads everyday join this exclusive club that no one wants to be a member of.

Kim

July, 19 2004

3 years ago today was the memorial Service for Amanda.

This is where we are 3 years later.

One Missing

Two little children
Sitting side by side
Posing for a photo
Our emotions collide

Beautiful smiles
Happiness abounds
But someone is missing
One child’s not around.

Her smile can’t be seen
Her face no one knows
One sweet baby girl
Died three years ago.

So as everyone else looks
At the picture they see
We remember the one
That would have made three.

Mommy and Daddy Love and Miss you

July 16, 2004

Leaving the hospital with out a baby after having a baby was probably the hardest thing I have ever done.  Even though we left Amanda in the care of the staff at 11 am on July 13th, I don’t think it really truly hit me that I was going to walk out of that hospital with out a baby until I had to do it.   Alex was still at Nana and Pawpaw’s house and Tony and I left the Hospital alone.   Leaving that place knowing she was not coming home with us was so difficult.

From the time we got home that Friday afternoon until Monday afternoon after the Memorial service I don’t remember much of anything.  I was in shock, numb and completely just a walking Zombie.  Which totally makes me glad that we made all the arrangements ahead of time.

Tony’s family came in town at some point and went home after the service.  We did go to church on Sunday.

The thing I remember doing is becoming very protective of Alex.  All I wanted to do is sit and hold him all day.  And thankfully he was a fairly cuddly kid and let me do that as much as I wanted.   At 2 years old he didn’t understand anything that was going on, but on some level I think he did understand that Mommy was sad.

Kim

Yesterday we had a small party for Amanda’s Birthday. I made a cake which tasted good despite the fact that it was slightly lopsided. I might need to stick to cookies.

We also did a small balloon release in her memory. We did this last year also. Alex and Allison really enjoy playing with the Balloons so this is a fun part of her birthday. Oh they like the cake too!

Balloon Release

Kim

Today Amanda would have been 3 years old! Has it really been 3 years? It seems like it was just yesterday but also seems like a diffrent lifetime.

I have been posting the 3 years ago posts leading up to today. I am not going to rewrite the Birth story. It is here if you want to read it again.

Today’s post will be 3 years later! How are we doing? We are doing ok. When I think about that question I always come up with the answer OK. Never great or wonderful, we are just ok. But Ok is not a bad thing. We get up everyday we have 2 beautiful children to drive us crazy. After 3 years I can say I think we have found our new normal. The day to day things seem to come easily. We don’t dwell on the sadness. We laugh and enjoy our children and our lives.

I do however still see a toddler not yet preschooler running around the house. I have moments where Alex and Allison are playing and I imagine what it would be like if all 3 of my children were laughing and playing together. I wonder what kind of chaos that would add to our home.

I miss her with every fiber of my being. My heart hurts for her! And my heart hurts for Alex and Allison who will grow up knowing they have a sister but won’t get to know her.

I remember weird things about Amanda. How soft her skin was, how tiny she was but she still looked chubby because she was short, and how she had Tony’s dark curly hair.

I remember her trying to cry when she was born. How she never opened her eyes. I have no idea what color her eyes were.

I remember how the hat I made for her fit perfectly. It wasn’t to big it wasn’t too small. It was perfect! She was perfect!

I found this poem a few days ago. I fell in Love with it!

Celebration
by Gail Fasolo

This day will be a celebration
Of the short time you were here.
You will always be remembered
With great love and sometimes tears.

But only to feel pain and sorrow
Would not be quite fair to you.
Your life meant much more to me
More than I ever knew.

You were here so briefly,
I wonder if you know
All the ways you’ve touched my world
Since the day God called you home.

Now, my child, you’re with
our heavenly Father above.
I see not only what I’ve lost
But my capacity of love.

There will always be a big void
My soul will grieve forever.
Will I forget or stop loving you?
No, not now, not ever.

As this sad day is upon me
Oh! How my heart still hurts.
But even as I mourn your death
I celebrate your birth

Happy Birthday Amanda Rose! Always my sweet Angel

Love Mommy

3 Years ago today I had my final regular doctor appointment. Little did I know in 6 days I would be giving birth to our perfect Angel. The last month of Amanda’s pregnancy was very emotional, both good and bad.

Dr B. wanted to do the C-section at 39 weeks. I wanted it earlier as I was getting concerned with loosing her before she was born because she was growing so well despite all the problems. He was going to be out of town during my 37th week which really concerned me but there was nothing I could do. I wasn’t going to ask him to reschedule his vacation. So we agreed on doing the c-section around 38 weeks. This was 1 week earlier then he wanted to do it and 1 week later than I wanted to do it.

I was excited to see this part of our journey end but not so excited to start the next phase. With about 3 weeks to go until the planned C-section date a part of me had come to accept what the outcome was going to be. In my heart I knew there was a chance the doctors were wrong and she would be born perfectly healthy. But I also knew after all the many ultrasounds  that possibility faded every time we got the “no change” response from the Doctors.

At this point in the pregnancy I became almost obsessed with her being born alive. During the first weeks and months after we found out she was sick I prayed for the miracle everyone wanted for her to be healed and healthy. As time went on my prayers changed to wanting and needing her to be born alive. I needed to hold her say my hello’s and goodbyes to a living breathing child. Inevitability this was the prayer that was answered she was born alive.

At this last and final doctors appointment we scheduled the C-section date. When I got home and received the phone call with the confirmed date and time July 28, 2004 at 8am I hung up the phone and had the worst (maybe the only) panic attack I have ever experienced. I suddenly realized I just scheduled the day my child was going to die. That completely freaked me out. So much so that I now believe my stress over scheduling the C-section sent my into early labor. Over the next few days I started to have contractions in increasing frequency. My stress level just continued to climb. I was so worried about how I was going to handle the next 3 weeks of knowing almost to the hour when my child was going to die that my body completely rebelled. Which in retrospect was a good thing. Though the few days of contractions and calls to the doctor were scary and unnerving to say the least, I was given a reprieve. I didn’t have to wait 3 weeks. She came on her time not mine not the doctor’s. I did not schedule the day she was going to die. She chose her Birthday and chose the moment she would leave this earthly existence and enter a Heavenly one.

I am not sure how I would have handled the next 3 weeks had I not gone into labor early. Though I would give anything to have had more time with her, stressing for 3 weeks would not have been calm quality time. It is so much better that it happened this way.

Kim

Three years ago this week we had an ultrasound scheduled to find out the gender of our second child. March 16th started like any other day, rushing around to get everyone dressed and ready so we were not late! We expected to leave the doctor’s office with happy news of a boy or girl. We didn’t have a preference either way. The most tragic thing we thought could happen was that they wouldn’t be able to tell us because the baby wouldn’t cooperate.

Instead we left the doctor’s office in a whirl wind of confusion. Though at that time we didn’t realize how serious things were. We were told something was most likely wrong with the baby’s kidneys. You will need to see a specialist to confirm. There was no amniotic fluid and very difficult to get a good picture of what was going on.

The appointment for the specialist was set up for March 19, 2004. For the next two days I drank more water than I thought humanly possible praying that the problems were as simple as being dehydrated. I was on self-imposed bed rest with the hopes that when we got to the specialist that she would say everything looked fine.

March 19th came and I truly don’t remember anything before the ultrasound. I am sure I was nervous but I didn’t know what to expect. I knew kidney problems could be serious but I wasn’t willing to think about that. When the doctor told us that our baby was missing one kidney and there was no blood flow to the remaining kidney. We were thrown into a world of questions with very few answers.

We were given two options

1. Continue the pregnancy and the baby will most likely die before born. If the baby survives the pregnancy he/she will die shortly after birth.

2. End pregnancy now.

Neither option was an acceptable one to me! I could not imagine spending the next 5 months carrying a child that was going to die. Nor could I even consider being the one to decide when this child would die. I wanted a 3rd option but there was none.

We spent the next few days talking, crying and praying! We had a follow up ultrasound on March 26th. Though our prayers were for the first ultrasound to be wrong and everything would be alright. Either way we had made our decision. We would carry the baby as long as God would allow. If this meant I would miscarry in the next few weeks or that we would carry the baby to term, we knew we would give this child the chance at life he/she deserved.

Kim

Edited to Add:

I remember that day well. On that day our courage was tested, our marriage was tested, and our faith was tested. On that day when so much could have suddenly gone *wrong* in our life, so much was solidly *right* with our life.

I believe that God knows our name before we are even conceived. Sometimes the name our parents give us is not the same name as God’s name for us. In our case, I believe God made His name for our child known to us. Amanda means love, worthy of love, and precious.

On that day our life could have unraveled. On that day God weaved a new thread into our life that made our family stronger. And that thread had a name.

Tony