Thursday, October 15, 2009

October 15th

Avery was 6 months old on Tuesday. Jared brought it up on Weds morning and it took my breath away. I wonder what we would be doing if he was still here. How he would look? What would he be getting into.

Today is October 15th. If you haven't read my previous posts about it, it is National Pregnancy and Infant Loss Day. www.october15th.com or www.october15thraleigh.com

The Raleigh event has been moved due to the weather. It's now at Journey Church, the NorthEast location go to www.takeajourney.org for directions or mapquest 5808 Departure Drive - Suite 105, Raleigh, NC. 27616. The event starts at 7pm but registration and doors open at 6:30.

Please let anyone and everyone know about the event. If you can come show your support please do. If not, please light a candle at 7pm for an hour. The International hope is that there will be a wave of light across the Earth. Signals to heaven of love.

I'm going to try and say a few words at the Raleigh event tonight. Pray for me and but especially Katy Moyer who has put the whole event here locally together.

Monday, October 12, 2009

Another Angel Avery

Baby Avery: Our Story

Why?

Why am I so gun-ho about getting so much done?

What am I going to tell Avery when I get to heaven when he asks, "So what did you do Mommy, with what I left you?"

I want to tell him I made the most out of every last day that he gave me. I took the 107 days he was here and made them last forever. I took his life and did something with it, I did something for it and made the world a better place. In his name, for the Kingdom, from God.

I can't imagine just telling him, "Well, I cried a lot. And then we had more children. And now we're here."

I won't. I can't. It's not fair to my beautiful little boy. It's not enough. I'm not going to stop. Ever. Don't give me his dates, don't give me his stone. Don't put the period on his sentence. Our Avery lives forever. He is going to do great things. I promised him and I promise you that. He will.

We're going to get the parking situation changed at UNC. No more admission charges to see your babies and children.

We're going to make so much progress with gastroschisis that there's going to be a 99% chance of a wonderful outcome when babies with the disease are born by the time the angels call me home. People are going to march, babies are going to be saved, mommies, daddies and babies are going to know and know what to do when the doctor tells them "It's gastroschisis." They're not going to worry, deal with the unknown, there's going to be a real chance. And maybe, maybe we'll find out what we can do so that gastroschisis never happens ever.

Avery's Angels is going to be known. And every family with a gastroschisis baby or angel is going to rise up and join. And everytime someone sees a "Joe's Angels" they're going to know they're in OUR fight to end gastroschisis.

I promise you Avery. I promise. You're Mommy's not going to stop.

Friday, October 9, 2009

UNC University is a Crook

Please read this and respond. Pass it on and let me know who I can contact to get the word out. This is another campaign that I said I would take up in Avery's name. Please make grammer suggestions and others! I wrote it for the Daily Tarheel but I want to forward to many many other news sources.

Dear Friends-

I’m writing as an Alumni of this wonderful University with the most tragic news about our campus. Let me tell you my story;

While I attended UNC Chapel Hill from 03-07, I worked with Dance Marathon and helped with the dinners for the parents at the PICU and of course fund raisers. I never anticipated that less that 2 years later someone from the campus would be returning the favor.

Our son, Avery John Rauen was born on April 14th, 2009. It was the happiest day of my life. We had known since December of 2008 that Avery would need very special attention. He had gastroschisis, a disease that affects one out of 2,000 babies born in NC. Gastroschisis is where parts of the bowel don’t make it on the inside when a baby is being formed. His prognosis was good, and we knew that he would be staying at the NICU for at least a month or so while a series of operations were done to his tummy.

No one should or can imagine the pain of giving birth and leaving your baby in the hospital. I was inconsolable but knew that this was required of me to be able to bring him home. The pain and helplessness of not being able to do any mommy-like duties, being needed in the most basic needs is heart-wrenching and devastating.

I’m a teacher’s assistant in Johnston County at an Elementary and my fiancé is a manager and bartender at a local nightclub in Raleigh. We knew that we were going to have to return to work, for financial reasons and to also help pass the time while Avery was getting his plumbing corrected, as my fiancé liked to say. I was religiously pumping, which was bitter-sweet, as Avery couldn’t eat and had to have a PCC line in place for nutrients until they could correct his bowels.

Our stay at the NICU was an amazing journey filled with all the normal fights anyone would have learning a new relationship with multiple people. Our helplessness as parents was always in a weird limbo as we would find out about transfusions, new medications and other such “normalities” for the medical practitioners sometimes after they had happened. The Dance Marathon did supply us with meals that I had once delivered myself which was truly amazing to see. I must say, that the Marathon does a marvelous job with the PICU, but don’t forget the NICU mommies and daddies too!

The most sickening thing about our stay in the NICU was what we found out shortly after we left our baby boy the first day.

We lived around 5-10 miles short of being able to stay in the Ronald McDonald house, which financially wasn’t an option for us as we both had to work. The drive was still a good 45 minute to hour long from our home to the hospital; it averaged about $20 a day in gas alone for us to see our baby boy. And we never missed a day. How could we?

The additional expense shocked all of our family and friends. The parking deck charged us $6 a day (because we would most assuredly stay well over 4 hours when we came) to see our son. It felt like paying admissions to visit our own child. Their solution was for us to by “discounted” passes at $5 a day. Now parking has jumped to $8 a day and they no longer offer the discounted passes!

Can you imagine the real life Robin Hood battle the University has set up? Every single parent of a child or baby has to deal with the same issue. Paying admissions to see their children as they battle for their lives.

Sure we can park in the park and ride, but as a mother to a new born I was known to get up at 2am and drive out to hold my baby boy. No need to state that I wasn’t comfortable parking and riding in the wee AM hours. Many times I would stay from one evening to the next morning, well into the twinkling dawn and didn’t want to leave to begin with but certainly didn’t want the hassle of the parking deck, much less waiting for a bus.

Not only that, the entire medical staff has to pay to park as well. The medical practitioners that save lives daily have to pay to get to their jobs. Now, I know that we all envision ourselves working our dream jobs, but how many of us dream about paying a parking attendant to get to our jobs? And of all employees, does anyone think that people that save lives daily should be charged to come to work?

I’m sharing this with you friends because the University owns the parking decks. They charge the sick and healers to get to the places that they need to be. They charge admissions to parents of sick children; they charge neurosurgeons, surgeons, doctors, ER teams and nurses that battle for our loved ones lives to come do their job.

There simply is no logical reasoning that I, nor any other parent should be inconvienced in any sort of logistical or monitary way to be with their children. Ethically speaking, I cannot see how such an esteemed University can justify charging parents admissions to see their children. And children in the hospital are not hanging out. Most of them are in a true battle for their lives. Moments are precious, seconds and days. How much more pathetic can you paint the scenario? Any basic Ethics class will ask you to use examples of babies and children to consider the basis of good and evil. And yes, I am saying that what the University is justifying in allowing this “admissions” scenario to go on is evil, unethical and unjust.

Our brave boy lost his battle on July 30th 2009 unexpectedly. He had gone in for his 3rd surgery to finally bring him home and by all indications there would be a bouncy little boy in our home in a few short weeks. The doctors operated but Avery wouldn’t stop bleeding. For 3 weeks we didn’t leave the hospital as our beautiful boy who had just been smiling and laughing at us slipped away.

Our story isn’t a unique one. We were at a hospital, these things happen everyday. So I’m asking you, can you imagine how many parents have to pay $5-$6 a day to be with their children. They know, as we knew, that life was precious, and any moment could be the last moment.

One of the most disturbing events came on the 4th of July. As on all holidays, the gates were up, but the deck was slammed full of people who were there to watch the fire works. While my baby slept in his crib, I had to circle the deck looking for a spot. The one night they could have truly made a justifiable profit, they were letting people park for free in the deck. Frustrating doesn’t encompass my emotion. Fighting the crowds to get to my baby was intolerable. I got to his bedside already in tears.

Further, the doctors informed me that they are allowed to park in the Dean Dome parking lot but on nights that there are events there they have to move their vehicles for event parking!!! Can you imagine?! The men and women that spent 24-48 hours at my son’s bedside trying to fight for his life weren’t allowed to park in the Smith Center parking lot for a basketball game?! I know we love our Tarheels and I never miss a game myself, but can we truly say that the value of a game and game day parking is worth kicking doctors out of their parking spots?! The ones that administered transfusion after transfusion of blood to my son should have been worried about moving their car for a game?

The reasoning that other institutions do it isn’t good enough for me. Their plight is the same as UNC Hospitals. I charge that all parking decks profiting from the sick and dying are on severely shaky moral grounds. Further, that an institution could hold such little regard for the nature and intent of a hospital, it’s patients and practitioners is just amazing to me. Can you feel proud of attending a school that does this?

I’m asking you friends, to start talking amongst yourselves. Start talking out, take up our banner and make a change. I am embarrassed that school that I love so truly would stand to profit in such a disreputable and dishonorable way. Our school bottom line steals from the poor and the sick. They profit from people that are trying to heal them, people that are tying to help parents of sick and dying children and babies.

I get that times are hard. But this still doesn’t justify the burden that the University is adding the people that are hurting the most.

I hope that you find it in your heart to print this as an article and see that something is done. If Dance Marathon wants to pick up a real issue, this should be at the top of their list. Currently the funds that they raise cannot be used to pay for any parking. And every nurse, medical specialist and doctor affiliated with the hospital has to pay to be in the deck. They have to pay to save lives and we have to pay to see the lives of our beloved heal or slip away.

Walk in truth,
Love and blessings
Meghan Hall
Class of 2007
Philosophy and Political Science

Wednesday, October 7, 2009

Sun peeks out

It's been rainy here in NC for weeks now. It feels like. Gray and icky and cold. Sometimes it rains hard, sometimes it just drizzles all day.

The sun is peaking out for a minute here. Pouring through one of my two windows. I'm thinking about all the things I have to take care of and how much I'm just not ready to start it.

I need to get organized about how I'm going to attack fundraising for Avery's fund. What I'm going to do, what time line I'm looking at.

I'm also needing to figure out everyday logistics. Violin issues. Scheduling issues.

Schooling, money, bills bills. Times to mourn, times to plan. Times to figure out how to take care of me and Jared.

I'm trying to strategies on how to get the gastroschisis community rallied and together. I'm trying to figure out who to ask for a special but hard favor. I can't visit Avery's grave site, it's just too difficult for me. But I want to make sure it's well taken care of. I don't know what to do.

Getting a blog started for gastroschisis, I don't even know how to do that. No computer genius in me at all. I can navigate my way around well enough. But I want to make it an umbrella of all the little grassroots projects out there but at the same time something that can really generate something even larger, get bigger and make a financial difference.

Sleeping? Sometimes sleeping? I don't know. Feels like there's so much to get done before the end of the year and I don't know why I'm running so fast!

Avery helped me save a kitty that was hours old yesterday. I was walking out of the building to my trailer and heard what I thought was a bird cry. Then Avery said "Mommy, stop." So I did, and I heard it again. So truly the plea of a wee kitty. So I waved for help from one of the classrooms and Dani and I hunted out the weest of wee kitties that was hours old and ice cold and drenched to the bone. Unfortunately Jared is wicked allergic to cats, so Dani took her to the vet where she was "on the fence" (a term I've learned to hate from this summer, that and "out of the woods") all yesterday. I named her Lil Bit and am her honorary Mommy. Dani is just smitten. Mrs. Fontain found two of her brothers in the air conditioning unit yesterday, Fred and Cupcake. It's a little too much for me. Helpless feelings of such wee life held in such a balance. Innocence suffering. Dani fortunately keeps me abreast of the progress and ate lunch with me yesterday. That woman truly has a niche carved out all ready for her in heaven. She's amazing.

Avery speaks with me regularly. I see his wee face and hear him say things all the time. Maybe it's crazy but I do. He tells me when to listen, when to share, when to stop, when to think about things. Sometimes he shakes his wee head at me or just laughs at my attempts. But I hear him and see him well. I wish I could hold him and watch him grow. But I keep my prayer line open.

Friday, October 2, 2009

Hope

Everywhere this is hope, but not always do I have patience.

God's timing is ever present, but I am not ever mindful.

Everyday He leaves me little love notes to let me know He cares, but sometimes I'm too much in a hurry to pay them the mind they really deserve. That I really deserve.

Jesus told Peter to walk on water, Jesus believed that Peter could but Peter didn't think he could. But Jesus knew, and Peter walked on water. Jesus knows, but I don't always remember that I can.

God made man and woman two different beings from His image. Each carries a unique part of God in them. Each fulfills each need unto themselves but supplies their part to the other. We each have a puzzle piece we fit into. And I adore the one I fit into.

My little Avery looks exactly like his Daddy. Sometimes it makes me miss him more and sometimes it helps so much.

Things happen and you gain perspective. Mountains shrink into mole hills and life becomes more full and you become more aware. However, life is an individual and not a shared experience. Some people will always have mole hills they see as mountains, and some people will just always see that they have mole hills because they've already had the Himalaya Mountains.

God give me patience for people who you've blessed to only have mole hills they see as mountains.

Time is a finite resource. I need to remember that.

Life is a mission field. So do your part. God lend me the courage to always remember that.

Thursday, October 1, 2009

Don't be fooled

I had a really dark moment last night. Really dark. Don't think for a minute that all this is easy or coming easier or I'm somehow so enlightened. I kept wondering how did I get here? Why did I drag Jared in to all this mess? What happened? What did I do?

It's not what I did. It has nothing to do with any of that. It just is and it's done and that's all there is to that. Life isn't about making it into a book, it is the story that it becomes. Things aren't suppose to have a "natural" way, they just are.