Friday, November 27, 2009

Beautiful words...

Beautiful words I stumbled upon and brought comfort today.  I like the poems but I have to say, I believe that God doesn't let Marie see how we're hurting now.  I think she's sleeping peacefully waiting for us to join her and when we're there she won't realize that there's been a moment we were apart...

My Mom is a Survivor

My Mom is a survivor,

or so I've heard it said.

But I can hear her crying at night

when all others are in bed.

I watch her lay awake at night

and go to hold her hand.

She doesn't know I'm with her

to help her understand.

But like the sands on the beach

that never wash away ...

I watch over my surviving Mom

who thinks of me each day.

She wears a smile for others ...

a smile of disguise!

But through Heaven's door

I see tears flowing from her eyes.

My Mom tries to cope with death;

To keep my memory alive.

But anyone who knows her knows

it is her way to survive.

As I watch over my surviving Mom

through Heaven's open door ...

I try to tell her that angels

protect me forevermore!

I know that doesn't help her,

or ease the burden she bears.

So, if you get a chance, go visit her.

Show her that you care.

For no matter what she says ...

no matter what she feels.

My surviving Mom has a broken heart

that time won't ever heal.


Copyright 2001 Kaye Des'Ormeaux

My Dad is a Survivor

My dad is a survivor too...
which is no surprise to me.
He's always been like a lighthouse
that helps you cross a stormy sea.

But, I walk with my dad each day
to lift him when he's down.
I wipe the tears he hides from others.
He cries when no-one's around.

I watch him sit up late at night
with my picture in his hand.
He cries as he tries to grieve alone,
and wishes he could understand.

My dad is like a tower of strength.
He's the greatest of them all~!
But there are times when he needs to cry...
Please be there when he falls.

Hold his hand or pat his shoulder...
And tell him it's okay.
Be his strength when he's sad
Help him mourn in his own way.

Now, as I watch over my precious dad
from the Heavens up above...
I'm so proud that he's a survivor...
And, I can still feel his love~!

~Kaye Des'Ormeaux
October 16, 1998
Dedicated to the dads who have lost a child.


Wednesday, November 25, 2009

Three months...

My sunshine girl.  Bright eyes, big smiles. Beautiful, beautiful, perfect princess.  Daughter of a King.  Now she's a princess in Heaven and I'm here with empty arms and a broken heart.  I think it was all worth it though, for just a moment of Marie...  I miss you Mama...  I am saving all those kisses for you... just you wait until I'm there...

The Lord is close to the brokenhearted and saves those who are crushed in spirit...
Psalms 34:18

Monday, November 23, 2009

Vote for UMDF!

Chase Community Giving will be giving research grants to the winner of this contest. You have to become a fan of the United Mitochondrial Disease Foundation on facebook... I encourage you to click. Hopefully someday this disease doens't have the power to steal another child from it's mother's arms.


Saturday, November 21, 2009


It's coming and I am not looking forward to it.

Of course I have many, many things to be grateful for this year... Sarah's here, my Josie is amazing, I have a wonderful husband, good family, amazing friends, Jesus,a beautiful home, a nice car, a (mostly) good dog... so much to be grateful for... I just can't get into it. 

Because something happened this year.  Something I never fully believed would happen.  Something that I cannot get over...

I miss her.

I'm grateful.  I know just where Rie Rie is.  She's safe, warm, happy, loved...  She's just waiting for me in God's big house and someday I'll go in the front door, pick her up, hug my Father and enjoy being home... Someday.

It just seems like a really long time from now.  Three months gone this week, Thanksgiving this week, and I blow kisses to Heaven instead of placing them on the softest cheeks you've every felt, instead of kissing that little freckle on her forehead.

I have a lot to be grateful for, most of all the gift of Jesus' salvation.  His conquering sin, death, and the devil.  Our promise of life eternal and knowing someday "He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain..." Revelations 21:4.  I really finally get it now.  I understand. 

The problem is someday isn't today.  I miss my kid, I want her now...  I have a lot to be thankful for but this year I'm just not feeling it.  This year a bad dream came true.  My sweet Marie isn't here, so our family isn't really together and we won't be until someday... 

I don't like this.  Not one little bit.  Not at all. 


Thursday, November 19, 2009

It's all about Sarah...

Lounging in big sister Marie's bouncy seat...

She loves it when Josie pays attention to her!

She also loves the sling!

She loves her rabbit (this is the favorite toy of the moment)...

She is adorable in her bear suit all ready to go outside!

She makes me smile and keeps me company.  She has a temper.  She loves her bottle (a first for us, Josie and Marie both refused to take bottles).  She is snuggly.  She won't sleep unless she's swaddled.  She likes to be held, almost all the time.  She does not like being on her tummy.  She's not sure what to think about the dog.  She's has fat rolls on her thighs and cankles and they are beautiful.  She likes looking at pictures.  She likes watching tv (too early!).  She can blow raspberries.  She's loved by everybody.  She has a lot of Marie's expressions.  She has so much less hair than her sisters did but hates hats.  Mommy makes her wear them anyway.  She's just Sarah... she's pretty wonderful.

Wednesday, November 18, 2009

She did it!

Teeny tiny flowers sparkle on my big girls ears... so brave, so proud of herself, so pretty...

Friday, November 13, 2009


I have so many questions... almost all of them contain the word why.  Why did the Lord take Marie when she did?  Why that day?  Why did she go?  Why couldn't my girls have been together longer than 20 minuets?  Why couldn't we have taken a picture?  Why, why, why, why, why.

I know I won't get answers now, I have to wait for someday.  Then He'll tell me, or He won't.  Perhaps I'll need to know as I kneel before my Lord, perhaps I won't care anymore.  Perhaps He'll hold me while I cry in His arms, or He'll smile while I laugh for joy and cover my Marie with all the kisses I'm saving for her.  Just for her...

I will tell you that we had no idea that Marie was leaving...  She was teething, she had a bit of an ear infection.  Two year molars are rough.  She had cut one of them, the one on the lower right...  I snuggled her all day Wednesday.  She didn't feel good and wasn't sleeping well, but she was teething.  She was still smiley.  I bought her a new book, a pop up version of Princess and the Pea because she was such a trooper at the doctors that morning.  Thursday we left at 4 am after a sleepless night with Marie.  I had to check in to be induced to deliver the baby...  I sobbed when I left Rie.  I almost couldn't go, I couldn't stop crying and I could not bear to leave her.  It was the first time I had left Marie for the day for a long, long time.  Our good friends Marcus and Andrea were with her... they texted me a picture of her smiling later that morning. 

That afternoon my wonderful friend Christy came to be with Marie.  She was the perfect one to be there.  She loved Marie so much, she still does... She kissed, cuddled, played, read stories, loved all over Marie just as I would have.  I can't tell you the peace I have knowing Christy was there.

Princess Marie was surrounded that day by people who loved her.

Luke went home late afternoon, to get the girls.  He called to say Marie was really tired, she hadn't napped all day.  He was going to lay down with her, try to get her to sleep, then bring her to the hospital later.  I was stuck therewith a brand new Sarah, it was so hard for me not to run home...

She wouldn't sleep.  He told me over the phone that he didn't think she was doing very well... He brought Josie and Marie to the hospital to meet Sarah.  Our family doctor was there.  He looked her over, had no suggestions.  Teething is rough, particularly for Marie.  We had 20 minuets of being together, being a five family on earth.  I held Marie the entire time, I fed her butterscotch pudding.  It was precious... I will remember it for the rest of my life.

Luke took the girls home, he bathed them, he loved them.  He put Marie right next to him in our big bed, her favorite place... finally, she fell asleep.  We prayed that night, that Marie would have peaceful, healing sleep.  That she would wake refreshed.  Some time in the early morning she flew...

Our prayers were answered.  She slept peacefully, she was healed.  She woke in Jesus' arms refreshed and perfect.  I know that.  I just didn't expect our prayers to be answered in that way...

Why?  I have my theories... Only He knows...  I try to pray for peace rather than asking questions... I try to be grateful rather than sad...  I try.  Sometimes I succeed, sometimes I fail miserably.

We did not get much chance to celebrate Sarah's birth.  We were too busy, to overwhelmed, to broken hearted... we snuggled and loved on Sarah, but there were no blissful first weeks.  I am sometimes angry that time was robbed from us... we celebrate Sarah now.

There are some things that have been mentioned to me and I feel the need to set them straight.  I don't know who reads here, if it makes a difference, but I need to put it in writing for me.  Because I want everyone to know...

I do not believe that the pain of Marie's passing was lessened in any way by the arrival of Sarah.  If timing had been different we would have been just as upset, just as broken hearted.  Sarah's being here had/has nothing to do with Marie's being gone.  They are two different people.  One does not replace the other.  I love Sarah as much as my heart can, but she is not Marie and I miss Marie.  I miss everything about her.

I do not believe that God called Marie when He did because we could not have handled three children.  I would have had a lot to do, it would have been a lot of work but I was prepared.  I was ready, I was excited.  I do not think that it would have made a difference to any of my children's care.  Marie's needs were great, but she also had a lot to give.  It is the worst part for me, not getting to see her be big sister.  She would have been great at it.

I do not think that my ability to mother my girls is in any way compromised by my grieving and grieving hard.  It would be worse to act as though it was okay.  Someone told me not long after Marie passed that I needed to be strong for Josie and Sarah, to pick up the pieces, one foot in front of another and soldier on.  There is no soldiering on through this.  I hug my babies and we cry together.  There is no being tough or sucking it up.  This is like nothing else and I pray that no one reading this must endure it.  Unfortunately this is a broken and sinful world so it happens.  Babies die...  Perhaps my words will help someone.  If nothing else, perhaps they will help others to appreciate their children.

Why today?  Why am I spilling these words, telling this part of the story?  I don't know.  I had to get it out, write it down, set it free.

We never saw Marie as anything less that perfect.  To us, she was not a sick or disabled child.  She was beautiful, she was funny, she was naughty, she was adored.  We chose not to live as though she were dying, we chose to LIVE...  and I think she benefited from that.  She was just a kid, a kid who had a terrible disease but that disease was not who she was.  She fought it hard and it did not defeat her, God just stepped in and healed her in the only way He could... because He loves her so much. 

Our world is shattered but we are rebuilding.  I am dreading the holidays.  I am upset that the world goes on and I know it must...  I hate getting used to Marie being gone.  I am sad for Josie in her loss, I hate that Sarah will grow to know Marie through pictures and stories and not by her being around.  What can I do?  It's my life, it is the way it is.  We have to make the best of it, move forward and all of that.  It is not easy.  It is not fun.  It is so painful...

Still life does go on.  Sarah smiles and coo's.  Josie reads words.  Cooper the super dog ran around with a chunk of cement in his mouth this morning and made me laugh.  I watch movies, I read books.  I try new recipes, I try...  Life is still beautiful, but it is hard...


Wednesday, November 11, 2009

Thinking... of kindness.

I am thinking about a lot of things.  Trying to adjust... sugar beets are nearly over but then corn harvest begins...  I miss Luke being around all the time.  Sarah is becoming more demanding.  She sleeps through the night but doesn't nap well.  I walk the dog a lot.  It's nice, it gets me outside.

Last week was tough, maybe one of the hardest.  Josie had a hard time... one of the children in her class had a tragedy.  It hit close to home and hurt my heart to see my baby in pain again... life is so cruel, how can it be so beautiful?  So grateful that this world is not all there is.

This week I'm thinking a lot about a special little boy.  I didn't get to meet him, but I will someday.  His Mama told his story so well that I know him, she keeps him alive in her words and her awesomeness, her strength and her spirit.  I am glad she is my family.  Her little boy, he is keeping company with my girl in Heaven... it would hurt your eyes to see how beautiful they are.  In my minds eye they look alike, Marie and Quin, dark haired, smiling eyes.  Chubby fingers, tiny baby toes and bigger two year old toes.  She is probably teaching him to be naughty and bossing him around.

Do something kind for someone this week...  too many people carry crosses that we don't see.  Too many hearts hurt, too many are burdened, too many feel alone.  Join me in Random Acts of Kindness to remember a special little man...

Blowing kisses to Heaven...


Friday, November 06, 2009

Meet Cooper...

He is doing his best to support Luke in the guy department as they are outnumbered.  He is 8 months of not really a puppy not quite a dog.  He is wiggly, wet nosed, follow his girl around fun.  He is funny, he's a pain in the neck.  He loves milk bones, fetching tennis balls and his stuffed pheasant.

These two are rather fond of him...


Wednesday, November 04, 2009

Laying low...

I've been laying low.  Unsure of what to say about my life because I'm not sure about my life... so different now.  Lots of thoughts but I'm holding them close.  Two months out and it feels like two years or two seconds depending on the time.  Josie and Sarah demand my attention as they should, we're all sort of muddling along together.

Every morning I no longer wake up and have to rationalize the fact that Marie's being gone is real, it was not a bad dream.  It was a hell, reliving it every morning, I seemed to forget while I was sleeping.  Now, I no longer have to go through that, but I still have to deal with her being gone and that is the hardest thing I've ever had to do.

I've been spending time with good friends, people who feel the loss and that is good.  I joined a bible study... I've got a lot of questions about my walk with God, I'm working on answers.  Struggling to accept His will something that must be done moment by moment... growing in my faith I guess one could say.

I bought a new cookbook and got Sarah a snowsuit for winter.  I make meals, do laundry, do the shopping, clean the house, cuddle my babies and yet part of me is missing.  The part that was Marie's.

What are you when you are no longer the mother of a special needs child?  Isn't it amazing how much our identity is defined by our children?  I am a mother of three... but one's gone Home and I only have two here.  How do you be a mother to a child in Heaven?  All the love with Marie's name on it is still here, how do I send it there?  Who was I before?  Did I loose her?  And then there's being a wife and that's a completely different ballgame.  Does anyone else struggle with stopping being a mother to be a wife?

I was told once that for life to be in order the priorities must be God, myself, my spouse, my children.... I am so often out of that order.

And these are the thoughts in my head while I pick up from school, wander the grocery store, fold that never ending laundry...

All is well here though, the girls are growing.  Josie has some hard days still.  We remember Marie together... she is angry because she "wanted a five family".  I just tell her that I'm a little angry about that too.  We were so looking forward to being a "five family".  She likes to visit Marie's site.  It is beautiful there.  She gathers fall leaves into piles, leaving them just so.  Kisses blown up to Heaven... my heart aches for her.  She is so strong and brave with her child's faith.  A faith I often wish I had.  Josie is doing well in school and loving it, beginning to read.  It is amazing to me to hear the words of books from her mouth and I often stand struck dumb, to hear my child read to me.  It is so simple, but what an amazing gift of God.  To understand, to speak, to read the words, others thoughts.  A door opened to the world of books and an escape from day to day... to hear her read.  I am blessed in that.

Miss Sarah is so chubby.  At her two month appointment she was in the 75% for height and weight.  Still, from my days with Marie I detest those standards of measuring progress.  Still, she thrives.  She smiles, she coos, she makes us laugh.  She wants to stand all the time.  Her exploration of the world is so serious and she is strong willed already.  To see her hold her head so strong, to use her hands to do her bidding.  My heart soars and breaks at the same time.  To see Sarah do what Marie could not for most of her life, just to hold up her head.  I am so glad that Little Mama is free from her broken body in Heaven... we delight in Sarah's progress.  I will tell you she is just beautiful and her eyes are getting lighter.  They will be blue, like her sisters.  I don't think they'll be that amazing turqoise sky blue of Marie's though, and that's just as well.  Sissy is her own person, she is totally unique and I am loving getting to know her.

We are going slow and being gentle with ourselves, really, there is no other way.