The hardest day of my life

Yesterday was the hardest day of my life. We took our precious Emmaleigh Ann off of life support. She passed away at 11:58 am.

We had a wonderful hour with her, without the tubes, just being able to look at her beautiful face and spend precious time with her.

I am just heartbroken. I love her so much. I know that love is letting go, but I still can't believe that we had to make that decision. I wouldn't wish that on anyone.

Thanks everyone, for all of your prayers and support. We appreciate it so much.

We had a photographer come yetsterday and took some pictures. Those are the only family pictures we will ever have. I will post some when we get them back.

What Makes A Mother

A mom on my support group sent me this poem. It describes exactly how I feel.

What Makes a Mother

I thought of you and closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.

A Mother has a baby
This we know is true.
But God can you be a Mother
When your baby's not with you?

Yes, you can He replied
With confidence in His voice.
I give many women babies
When they leave is not their choice.

Some I send for a lifetime
And others for a day.
And some I send to feel your womb
But there's no need to stay.

I just don't understand this, God
I want my baby here.
He took a breath and cleared His throat
And then I saw a tear.

I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say...

"We go to earth to learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.

I feel so lucky to have a Mom
Who had so much love for me.
I learned my lesson very quickly
My Mommy set me free.

I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow's where I lay.

I stroke her hair and kiss her cheek
And whisper in her ear.
Mommy don't be sad today
I'm your baby and I'm here."

So you see my dear sweet one
Your children are ok.
Your babies are here in My home
And this is where they'll stay.

They'll wait for you with Me
Until your lesson there is through.
And on the day that you come home
They'll be at the gates for you.

So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start.

Though some on Earth may not realize
Until their time is done.
They'll be up here with me one day
and know you're the best one.

How Mothers Of Special Children Are Chosen

How Mothers of Special Children are Chosen
Erma Bombeck, 1980

This year, nearly 100,000 women will become mothers of special children. Did you ever wonder how mothers of special children are chosen?

Somehow I visualize God hovering over Earth. As he observes, he instructs his angels to make notes.

"Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecilia. Finally he passes a name to an angel and smiles, "Give her a special child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a special child a mother who does not know laughter?"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect.

She has just enough selfishness."

The angel gasps, "Selfishness?

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word. She will never consider a 'step' ordinary. When her child says 'Mama' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life."

"And what about her patron saint?" asks the angel.

God smiles. "A mirror will suffice."

Emmaleigh Ann

I realize that I haven't updated this in a long time.

We found out about 6 weeks ago that we are having a little girl. She has been diagnosed with Semi-lobar Holoprosencephaly. Basically that means that part of her brain didn't separate like it was supposed to.

We do know that she will be a very special baby. We don't know what the extent of her disabilities will be. I had an amniocentesis done to check for any chromosomal abnormalities, and it came back normal so that was great. Her prognosis is good at this point. However, there is a chance that she may not survive infancy. Due to the nature of this diagnosis, there is just no way to tell until after she is born. Holoprosencephaly (HPE) affects children very differently, depending on which part of the brain is separated. No two cases are the same. There are some children with HPE that do not survive, and some that do.

We are very excited to meet baby Emma. We love her so much already and she has blessed our lives in a very big way.

If you would like more information, please visit : http://www.holoprosencephaly.net/Category:Definition_Of_HPE

This is a website that was created by parents and has some great information that is easier to understand. It has been a great resource to us already.

Thank you all for your prayers and support.

Welcome To Holland

Welcome To Holland
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a
disability-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 wonderful
plans. The coliseum, Michelangelo's David. The gondolas of Venice. You may
learn some handy phrases in Italian. It's all very exciting.
After a few 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 of plans," says the stewardess.
"They've landed in Holland and there you must stay."
The important thing is you haven't landed in 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
have never met.
It's just a different place. It's slower paced than Italy, less flashy
than Italy. But after you've been there a while and you catch your breath,
you look around and you begin to notice that Holland has windmills,
Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and
they're all bragging about the 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 that pain will never, ever go away because the loss of that
dream was a 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 and lovely
things about Holland.

Craving!

Just wanted to let you all know what I am craving. Luigi's Lemon Italian Ice. Man I love those things! I bought a box the other day and there's only one left. I'm glad there's practically no fat or anything in them. I don't know why I am craving them, I think it may be the sourness that helps stop my nausea.

On a side note: Not fun to throw up in front of Nate. It kind of scares him. I can't help it, though, he follows me to the bathroom. He has to be in the same room as me, or else he starts to cry. He probably thinks I am abandoning him, lol!

My life right now

My life right now is exactly where I want to be. Ok maybe not exactly, but pretty close. We may not have everything we want, but we have everything we need.

We have a roof over our heads, we have a beautiful baby and another beautiful one on the way, and we have each other. We have our arguments and disagreements of course, but we love each more than anything.

We are sooo ecstatic to be having another baby! It is exactly what we want, and we don't care what other people think. It's our life, and we will do what is best for us and our family. Nate will be such a great big brother, and I know he will love this baby so much.

My husband is so wonderful. He works so hard to support our family. I am so thankful to him and everything he does for us. He is sweet and kind, and I love him more every day.

I love my life!