What I shared

Here's what I shared last night at the event. It was really long winded, I realized that amongst the snot and tears. =) I don't know why I was moved to share so much but I did. I was horribly self concious about it but the spirit moved me to speak so I did. I apologize if I stole anyone's thunder or distracted from the event. It was not my intension!

I ad-libed at the beginning a little. I was really amazed at how comfortable I felt crying and speaking infront of people. Truly the Spirit holding me.


Psalm 91
1 He who dwells in the shelter of the Most High
will rest in the shadow of the Almighty. [a]

2 I will say [b] of the LORD,
"He is my refuge and my fortress,
my God, in whom I trust."

3 Surely he will save you from the fowler's snare
and from the deadly pestilence.

4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.

5 You will not fear the terror of night,
nor the arrow that flies by day,

6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.

7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.

8 You will only observe with your eyes
and see the punishment of the wicked.

9 If you make the Most High your dwelling—
even the LORD, who is my refuge-

10 then no harm will befall you,
no disaster will come near your tent.

11 For he will command his angels concerning you
to guard you in all your ways;

12 they will lift you up in their hands,
so that you will not strike your foot against a stone.

13 You will tread upon the lion and the cobra;
you will trample the great lion and the serpent.

14 "Because he loves me," says the LORD,
"I will rescue him;
I will protect him, for he acknowledges my name.

15 He will call upon me,
and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.

16 With long life will I satisfy him
and show him my salvation."

This was by your beside my little love. And I still cling to this promise.

Dear Avery-

I just want you to know that I would never have done anything different if I had known that you weren’t going to come home. I would do it all again. No reservations, no hesitations.

I miss you everyday. There isn’t a second that goes by in a day that I don’t think of you. I can’t keep myself busy enough. It’s a miss and an ache that I’ve never known.

The 107 days that you were with us were the most amazing days of my life. No matter how complicated or difficult a NICU family was, it was the most beautiful time of my life. I fell in love more than I thought possible with you.

You are amazing Avery. You would have been 6 months old on Tuesday. And it’s been over a year since we began to share a life. You have changed me from a girl into a woman. Your life has taught me so much. I can’t list them all here, I will say that I did learn that family does not always turn out to be those who share your name or blood. Family and home turns out to be where God loves you through the people around you, some who barely know where you lay your head at night. And that alone helps me get through these days; seeing God’s love in the faces of those who have come forward and given so much.

Avery, I hope you know 2 things, beyond a reasonable doubt; that Jesus is the Lord and Savior and that your father loves you in the most incredible and mighty way. I hope you know that your father is one of the best father this world has seen. No man has ever reflected the love, protection and selflessness of our Father in Heaven more. Even now, his anger and pain are a mighty reflection of a holy pain and anger. Avery John Rauen, your papa bear would have stopped at nothing to save your life. Your father is the most incredible, gracious, generous, giving, selfless, genuine man, and I am proud to be with him and love him so much. Those mornings when I can’t get up, when God’s whisper seems so far, I look to him and I can do anything. I hope you can see that. You are a lucky little man to have him call to you “Hey Buddy.”

It goes without saying he comes with an amazing family, your Grandpa and Grandma Rauen, your Uncle Nathan and Aunt Courtney. My brother, your Uncle Bryan sent and sends you up music, Avery, he misses you so. We all miss you.

I whisper secrets to you everyday. You know what I’m wishing for and hoping for. I hope you’re precious lips have found God’s ear to put in a good word. I’ve learned to stop being angry with God, because I don’t want to understand in this body and mind, this doesn’t make any sort of human sense, so I’m content to wait and hear what He says when I can comprehend the depth and truth in a more Godly state.

I’ve learned to stop asking “why is this happening to me” and just ask “why is it happening?” I’ve looked the whole Bible over, and those whom give themselves to God don’t get an easier path here, but with God, they do overcome.

Our Avery was born 4/14/09. He passed away in the butterfly garden of UNC Chapel Hill Hospitals on 7/30/09. We finally got to take our little hero outside as he left to be with the angels. Avery was the apple of the NICU’s eyes for the 107 days he stayed there. He rarely cried which the nurses thought was amazing considering the stomach condition he had, and they regularly fought over his assignment. He was known to wakeup without anyone knowing and be found cackling at his mobile. He would stare for hours at his mobile without making any sound except for the occasional giggle. His own voice apparently startled him. Whenever we picked him up and held him, he was always staring around us and above us. I used to joke with him that he was “looking at the angels.” I never figured it to be true.

I’d like to give some reason, some small reason, but not reason enough that you, Avery, blessed us for such a wee while so that we could do something with it. Gastroschisis, the condition Avery was born with, affects one out of ever 5,000 babies in the US and one out of every 2000 in NC. The numbers are rising here in the Tarheel state and nothing is known about the causes of the disease. I like to say here that our son was no Quasimodo. He was a beautiful blue eyed angel, with the longest eyelashes ever and just a buddah belly, as his father called it. By all visible appearances, Avery was an adorable, laid back baby boy.

Gastroschisis is where during a fetus’s growth, part of the stomach doesn’t make it inside the body. The medical community has no information on what causes this to happen and there is still very little known on what to do about it or to prevent it. Still, our diagnosis last December was very “positive.” Just a few simple procedures and he should be “good as new.” And until the day that Avery passed, every medical practitioner at UNC Chapel Hill had the fullest belief that Avery would be coming home. No one had anticipated in the slightest that he would never open his blue eyes again and we would be among the 10% of those who don’t make it.

I’m telling everyone about our baby boy because I can’t just carve his dates in stone and learn to deal with the loss. Avery’s little journey can save the lives of so many. If our baby boy passing can do anything, it is that it can make it so that there are less angels and more survivors. We are working on establishing the first hospital fund for gastroschisis research in the nation. It is headed up by Dr. Helmrath who operated on our son and around 90% of all gastroschisis cases in NC. This isn’t a new disease, this is one that has been around for thousands of years. It’s not going any where unless we do something about it. I buried my son, but I didn’t bury the hope that Avery had for a life with parents and a family. I won’t bury that hope for others.

Also, the University owns the UNC Hospital parking deck and is charging parents of all NICU and PICU children and babies $8 a day to park there. It’s admissions to see their children fighting for their lives. My fiancé and I never missed a day, and Avery lived for 107 of them so you can do the math and figure out how much we were being charged to see our son. We weren’t going to the movies, we were going to the hospital to hold the moments we had with our son. I’m not going to let my son’s life be in vain. Something has to be done.

I won’t let my son’s life be in vain. He fought so hard with such a sweet spirit, and I won’t just let that be for nothing. I will fight for parents and primary care takers to be able to see their loved ones without having to pay admissions and I will do whatever it takes to see that Gastroschisis doesn’t add any angels, but babies and children at picnics, Thanksgivings and Christmases. No mother and father should ever have to plan a funeral before they plan a first birthday.

Everyone here should know that you can make a difference in a baby’s life. We all have that can give life and hope to a baby. 1 adult donation of blood, platelets or plasma saves 12 babies. UNC Hospitals and many hospitals in our nation need platelets and plasma badly.

Save a life. The goodness in us and the hope that we can give others. Yes there is hope in the pieces our angels left behind with us. That hope is the God in all of us. No matter how much we each ache and long for a “why,” there is still hope. Not all of us are able to gather our bits and wave a banner, and that’s OK, but don’t, please don’t forget the hope. Yes it’s heart wrenching to be around the small fingers and toes of another’s baby. But there are smiles in the faces of those who love you, there is the morning, there’s the rain, the sun, and occasionally there’s some laughter. There’s hope for me in the love I share with Avery’s father. There’s hope in the family that we now have. There is still always hope. Hope is the little love notes that God leaves us, sometimes in others when He knows that we’re frustrated and angry with him and his plan. It’s his way of saying, “I know, and I can’t explain to you right now, but I still love you.” You don’t have to be happy with him, but please don’t forget to see the hope, and pass the hope on. However you can, pass the hope on.

My little love. I wrote you a poem I want to close with. There are many since then, but I want to send away with this;
Friday, August 28, 2009
A Mother's Poem (Under the August blogs.)