First Annual Angel Day. GET INVOLVED!

Our First Annual Angel Day is planned for July 30th 2010.

On July 30th, 2009, Avery John Rauen left to be with the angels in the UNC Butterfly garden from his parents, Jared and Meghan's arms. His beloved family and amazing medical team looked on. He had fought heroically for 107 days against gastroschisis and his life has provided much unity, support and hope for a disease affecting many babies and many families all over the world.

We plan on honoring Avery and other gastroschsis survivors and victims every year on July 30th to raise awareness for the birth defect now affecting every 1 out of 2500 births in the US.

The event is to promote support and raise awareness of the members of your local community affected and how simple little gifts can mean so much.

There are events planned (location TBA) for the RDU area. They are listed below along with suggestions for events to promote, sponsor and put on in your area.

• Blood/Platelet/Plasma drive at area hospitals with NICU's (contact Meghan for NC area hospitals)

1 adult donation of plasma or blood saves 12 babies and gastroschisis babies require much during their surgeries.

• Please support the Ronald McDonald House by purchasing a Happy Meal or bringing your change in to a location or our planned potluck/picnic on the 30th.

The Ronald McDonald house provides access for parents to their children while they struggle through difficult diseases. However, they need your support! The houses tend to fill up quickly, while babies come in and have families who struggle to be by their side.

• On July 30th, Location TBA, at 5:30/6pm we will have a potluck/picnic.

Some food will be provided but please bring a dish to share.

• At 7pm we will do a butterfly release. (Suggested $2 donation to be part)

• At 8pm EST we're asking all families to light a candle or pause for a moment of silence to honor all survivors, victims, expecting parents and families enduring the journey.

You can also:

Promote and come up with a walk/marathon

Create a musical/family event

Promote your own blood/plasma drive at the hospital where your child was

Restaurant Promotional Event

If you would like to donate, get involved, volunteer your time or need help with suggestions please email us at meghanhall@averysangels.org

11,000 babies born today, 4.4 were born with gastroschisis. Let's do something about this. Let's take a moment to honor those families.

We hope you'll join us in our celebrations or have your own all over the world!

Love and blessings
Avery's Angels

Long time

So it's been long time for me to post.

Several activities since last time.

I miscarried in Febuary and was absolutly devestated. It rocked my world and I would spiral and not be able to grasp onto anything around me to pull me out. With some counseling and some meds I pulled through but was feeling very broken and alone.

I also was confronted rather sharply by a religious community I was part of devotedly through Avery's days and it also rocked my world. Jared's dad eventually told me, even through his own disappointment at the situation that "Don't let people who hurt you to rent space in your head or heart."

It's so true. I preach on it all the time. It doesn't matter how many hugs or kicks you did or didn't get, it's about this moment right now and what you're going to do with it and how you're going to live the rest of your life. I'm so glad that God took that moment to use him for those words.

Like everything in my life it's given me more fuel, more of a message and more passion. I was never lucky enough to be born into a Christian community and have always felt the brunt and coldness of the self-riteous who unknowingly look down upon those who aren't saved and speak with such condination and so little experience from being out of that world. I struggle, like anyone else who comes from my "outsider" experience of not feeling "good enough." Churches feel clichey often, and a place full of cookie-cutter people. I hope one day to grow a church where people genuinly can walk through the front doors and be taken in love at their pace in their lives with no strings and no expectations. I hope one day I can be the place where if it takes 80 years or 2 weeks to go down the journey, that you feel comforted and loved every step. Where God isn't the only person calling out, and you don't slip through the cracks, but that there are people consistantly calling and watching out for you. Just like I hope Avery's Angels to be.

I'm happy to say I am officially 12 weeks pregnant and due in Jaunary. It feels so very surreal and like a dream. I'm frightened and freaked at every cramp and pain and twitch. Jared laughs at me and tells me I'm a nut but I guess, granting my experience that it's normal and Mid-Carolina OBGYN has been so accomdating.

Avery's Angels finally has a functioning website! www.averysangels.org and we're growing in leaps and bounds. We suffer from lack of funding and have so many different families in need. I wish that we could strike it rich and get it all done.

We will have a Pepsi Refresh Project to vote on in August and God willing it will finally answer all of our funding needs!! Keep an eye out for posts and updates on voting and links to do so! It will only happen by vigelent people doing all the button pushing they can!!

Patience.......I'm learning again.....

Parenting, Venting in a quazi logical way

Pouring out the heart

As a teacher I get to see the product of many different things that a child has come into. First, every baby is a product of itself, meaning, it has a father and a mother and may have such tendencies that relate to their character. But they also possess their own identities and abilities for self thought and creation. The parent’s objection is to love, nurture, educate and impart wisdom upon their children so they may better survive the world around them. A parent cannot expect to with hold life, experience and the autonomy from a child. They will become who they are regardless of the amount of parental pressure.

Kahlil Gibran says this about children:

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

Truer words have never been spoken about the parent to child relationship. There is no prescription for happiness. What determines ones desires and values is based off their experience and their past, an others is completely different. There maybe similarities in values but the expectations and dreams will vary greatly from child to child, generation to generation.

I look in my own line of work and see children born with tenacity, they’re able to see over their circumstance and strive for what they can and dream of. I see others that are overwhelmed and deterred by their circumstance and need coaching and support to love themselves as they are. The truth is as Americans, we have lost value in the individual. We think that all persons should desire greatness and access to wealth and opportunity, when in reality, being and individual means that we each value different things in different ways.

As a teacher I don’t want my children to be anything but happy. The same as in my relationship. There’s nothing monetary or legalistically that hands you the keys to fulfillment, that can only be realized in your own sense of accomplishment, and everyone has a different understanding of what that is.

Some say accomplishment is doing great things of heroic nature, saving millions of lives and accruing great sums of money. Erecting large buildings and putting a legacy with their name. Others view accomplishment as being a good friend to someone who has never understood the humanity that truly exists in the world.

Parents suffer from this in to opposing ways . Some come from without, have suffered greatly from their struggles and seek at all costs to protect their child from that hardship. They dream of greatness and accomplishment for their children and push them under the guise of “you don’t know how good this is for you or how important it will be to your future.” I’m not talking about encouraging homework, I’m talking about placing value in the extra curricular and their focuses on Ivy League schools and incredible dreams of greatness and success. Then when the child veers off the past, the disappointment and anger from the parents berates the child and makes them feel their uselessness. You see, when we ingrain in our children the value of who they are as individuals is their level of accomplishment, their short comings appears to them as themselves being useless.

On the other hand we have another type of self=absorbed parent who feels that “it was good enough for me so it’s good enough for them.” Was it really? Was it the best for you? And here is a brand new life with the capacity and ability to do something better. Should we keep our lives and our society as “good enough?” Should we not encourage more and better?

Education is a gift, a precious one that no one can take away. It’s perfectly acceptable to build value in education because you’re building value in self worth and self esteem. A child’s ability to problem solve, know the world around him and understand better the world around him equips him with the ability to make self sustaining autonomous decisions. Building the ability to discern wisdom and folly is also a way to insure positive self success.

And here we enter moral values. Plain and simple there are several different moral values, not intentionally causing harm to another person or yourself , respecting others (which in turn builds understanding) being benevolent and kind, standing true to yourself and valuing the good are all important. However, as we educate and build our children with the capacity for independence, and not just the “I know how to do laundry” independence, but the capacity to discern what is right and wrong we should never once condemn their well established and founded believes in opposing theological positions. How can one love God if they haven’t truly made and understanding of Him. He is Sunday school songs and stories, but He is also alive and acting. You may perceive Him in all that you do while others perceive these things as “luck” or “life.” In other words, it is rare that any 2 people have a shared experience, and a parent’s job is to continue to love with in their values and lead by their drawing in and demonstrating how well their own life functions with the set of beliefs they value.

Gibran said :

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
For life goes not backward nor tarries with yesterday.

God has given your children life. He already gave you life, now these are their own. Their future is different and will be different from your own because change is always happening. We say that history repeats itself, but in very different ways and very very different capacities. The experiences you have had are in the past, and “life goes not backward nor tarries with yesterday.” There are lessons to be learned from past experiences, and ideas to make not of, but inflicting these values and warning as inevitable is “tarring with yesterday.”

Gibran illustrated the role of a parent beautifully, you are the strong bow, and God places the arrow and aim into the future. You are not the archer, God is, in His infinite wisdom and knowledge, he bends you back and takes aim. But as Gibran points out, the bow must bend graciously and with joy so that the arrow will fly far and aim for the target that God has intended as He is the archer.

Many parents forget this. Their child’s life is not their own, through conception and birth you labored them into this world, but it was God to gave them life, dreamed of them coming and created them. He gives them their heart and plans out their road before they are even thought of by you. And although they may suffer and make meandering trips towards directions that you would not wish for them, they do not belong to you and their life is not yours to dictate. Your place is to love them and protect them as to your ability and not dream for them.

Be a flexible bow and trust the great archer. Although they are your children they do not belong to you, their souls are not for you to maintain. You impart the wisdom, love and education that you can, you support them unconditionally as Christ washed the feet of those who would hang him on the cross, but you cannot direct the aim of their life. There is only one person who caused that movement and allowed it to come to be. Beseech the archer, love the arrow and surrender to your shortcomings. You are a parent, to help love, lead and gently persuade. Not to dictate and self determine. No matter the fact that the arrow and bow may have been cut from the same tree, their function, their grain and their density is much different.

All parents, love on your children, encourage their wild dreams and their not so materialistically bound endeavours. The truest bliss and happiness to God is when those whom he has set forth act in a full heart with great joy their truest talent and are really thankful for their abilities. Not when they are just happy they covered their bills and their lights are still on.

Here’s another warning:

Be quick to think before you take and emotionally charge opinion on anything. Breath and rationalize your truths and think about the answers to the dissension

Just a philosophy trick. Arguments are much more effective and well “fought” when not based in emotion. Emotion has the capacity to cloud judgement

Avery's Angels Update

Hello Friends-

The good news is I now have a computer and wireless! So I can work on more things!!

First off; we need funding! Kasey Butler is running an AVON eparty to benefit our cause! Contact her at kbutler810@gmail.com

Also, we need some English majors for 2 projects: re-reading over any stories that we are accruing from members and also to re-read over any literature we're looking to put out. Need our best foot forward.

We also need more area volunteers to help with childcare for those in the NICU, bringing food to families going through the NICU exprience or just volunteering their time/phone lines for people who may need the support.

We also need someone else to help support our amazing June scower the internet looking for new friends and people who may benefit from our support.

Help now and get involved! Email me at meghanhall@averysangels.org

Dear Friends!

So Avery's Angels friends and family browsers you're probably scratching your heads as to why the delay? Where is Meggo? What's going on?

Lots and lots. I felt extremely overloaded for the past few months, by life. Life happened in very cruel ways and it has taken me more time then normal to jump back on my feet.

I had a very personal and tragic health issue happen in February, it has made me take a bit of a "Jesus sabbatical" which some of my friends are having a tough time wrapping their heads around. I don't blame them but it's all true to my personality. I'll explain:

I've been shoved around and hurt a lot. I am "Suzie Sunshine," a "Pollyanna" of sorts. People have always said "You're too nice" or "You let people walk all over you." Which is funny. How are you "too nice?" And a close friend of mine put it best "I treat others the way I wish this whole world treated people." Perfect. There's no point in adding to all the "thick skin" and "apathy" in the world, so many admit that as a problem. Plus, who doesn't love being around the person who always inspires a smile and hope? I absolutely loved the "Pollyanna" story/movie when I was a little girl and I remember hoping to grow up and be just like her; persevering always and blinded to all the wrong in the world and only able to see the sunshine and "rainbows on the wall." She was someone that made the grumpy smile, the invalid want to live, the broken hearted whole. Who doesn't want to live a life like that?

I constantly stop myself mid ramble to say "I'm going to stop because I'm being ugly." I had to do it on Weds night. There's a difference in venting and "being ugly." Being ugly is when you get swept up in the emotion of what you're saying and feeling, your body tenses, your face darkens, your thoughts obsess, and it turns in to a voo-doo-mama-joojoo bashing session. Not good, for your spirit or those previe to the shpeal. Venting is when you release tension in a private setting to one or a couple people, it usually ends in some sort of cathartic release and or realization on the sore spot and a solution to fix the issue. Being ugly just makes the whole thing uglier.

So I spend a lot of time fighting the urge to be "ugly." So many people get swept up in venting and don't realize that they've stopped looking for rainbows in the issue and have started heaping on the poop. It's ugly.

When you're at a sensitive and bruised part of your life there's a lot of venting to be had and then there's a lot of ugly to be swept up into. I went through a lot of venting and was sore. So it made me more previe to being ugly. I saw it in myself last week and think now I'm on the upswing to being back to "Pollyanna." I'm nursing a lot of bruises but I'm getting back there.

This is a long explanation but you'll see where I'm going.

I was watching one of the "Forensic Files" from I think A&E last night and the sister of a murder victim said "The person who said 'Time heals all wounds' has never experienced something like this. Because time doesn't heal this wound. It makes it more tolerable, but it doesn't heal. There isn't an hour in a day that goes by that I don't think of her." BINGO! Time doesn't heal my Avery wound, and I don't expect it to. There isn't an hour or minute that goes by that I don't think of Avery. How can I, even in death I am still his mother. I won't ever stop being his mother and he won't ever stop being my son, in death or otherwise. Time hasn't made anything any easier, it has made it so I don't cry all the time, but it wouldn't take much to get me there.

There's an expectation in just people's faces and demeanors around me to "give it up." "Get better," "Focus on the positive." I am focused on the positive. I always smile, I always seek the hope, I always shine in the sun. But I will always miss my baby boy. That hurt has no resolution until the day I can ask Jesus "Why" face to face and get an answer. That means a life time of living with the question.

Yes I always talk about Avery, don't you always think or talk of your kids? Doesn't your heart jump into your throat when their school or day care calls? Or when there's something not OK with their health or well being? Or when they're teenagers and all of a sudden that sweet child is replaced with a rambling, fumbling and often times hurtful teenager? Well, Avery is my son, my child, and he will always be in my mind in that way because he was born "sick" and died. There wasn't a time I got to spend with him outside of my body that he wasn't attached to wires and machines. So that "worry" is present inside of me in a very different but real way. And his death magnifies that. No matter the prayer, therapy and time, I will always feel that I failed him as a mother, I couldn't protect him and preserve his life. That's just the sheer nature of being a mother or a father, that is my biological function, to preserve his life. So yes, Avery walks with me every day and he's on the forefront of my brain and on the tip of my tongue.

He will be 1 year on April 14th 2010. Don't expect a pretty, sunshiny Meghan on that day. I have been dreading that day and July 30th for a long time. I have no expectation but I do have worry.

So when I ran in to health obstacles in February, as I was on the upswing on my grief "cycle" from a very difficult holiday, I again found myself flat on my back. It felt like I was just beginning to tread water and I got a tsunami dumped on my head.

And I walk closely with God all the time. And I wasn't happy with Him at all. I can't figure out why He picked all these things to happen to me before I was born. Enough is enough. There's a whole theological discussion and ranting I had, but I'll spare you the details because it's very bleak and dark and no fun.

My roots were shaken. I've already been in two abusive relationships and have my "cut off" point. When I get hurt, I shut down. Literally. I don't respond, I get very apathetic and I turn inward. I shut the aggressor out, I "run away" and I make myself unreachable. And I look at God the same way.

Some may think, like a lot of my friends "Whoa there lady! You can't be that way with Jesus." Here's my charge to you.

Your pastor probably talks all the time about a personal connection and relationship with Christ. No one knows that better than myself. God isn't up there in the clouds or in the steeple somewhere. He is everywhere, in everything, part of me, part of everyone. God is my husband, my best friend, my confidant, my Father, my God, my ruler. Everything. But as my husband, best friend and confidant, why wouldn't I be honest with him? That does no justice to our relationship. I wasn't happy with Him at all. He could chase me with words of "sorry" and "I love you so much" all He wanted and I just told Him "Hey! Let's see it, stop talking all this jumble bumble and let's start seeing it buddy." Just like I have other relationships.

We spoke about how in earnest I look for Him everyday. How I turn my life over to his bidding everyday. How I search His word, pray and turn my problems over to Him. How I try to serve Him always and put Him first. How I am honest but turn to Him in my times of need. How I hold my success and goodness to His glory. How I surrender.

And I told Him, I come crawling into your lap and you hold me for a moment then let me tumble right out and I come crawling back. Not going to any more. I love you, but I don't like you at all right now. I'm taking a "sabbatical," we're taking a break. I'm not going to talk about Your love to others, because I'm struggling to see it in my life, we're not going to be shinning any Glory because, I don't like you right now and I need some time. No glory right now, not going to give it. You love me? Come find me. I'm open but I'm not going to be running after You. I've been chasing after you for a while and you're making me feel like a fool. It's your turn in this relationship to start making some real movement of healing and progressing this stuff forward. You're Jesus...

Sounds a bit audacious doesn't it? Well, He's God, and He can take it. The truth is, He loves me, He made me the way He loves me, so why wouldn't I be honest with Him? In our relationship, this is how I feel.

So I'm in a "halfway house" with Jesus right now. Our relationship is real and I can tell you that He is real, but right now, I'm not speaking in such a loving tone with Him. He's big time in the dog house.

He's been very patient with me. For a week or so I had some heavy hitters pushing Him on me and I suppose He gave me the right words to space out their desires for me and let Him come through. I've taken a break from worship team because if I can't get on stage and help lead others to His praise wholeheartedly and undistracted then I'm not going to. It's not responsible. I'm not ever going to put on an act.

He speaks in great volumes through Jared. I live in a very protected and provided for world where Jared sees me through, he's always honest with me and he's always loving. He provides, protects and loves me. The cards and words he picked out to "spoil" me with on my 25th birthday (March 9th of this year) were perfect and amazing. He is the closest thing to God's love in my life. Unconditional and real. He gets annoyed with how "gushy" I get, but when you haven't ever felt all the aspects of true, unconditional love in your life ever, you're continually amazed by it. And yes, I really am.

I also have an animalistic response that has been conditioned in me from my life experience that I work against daily; my mind sometimes convinces me that everyone has left me (sometimes I start to think it's my fault, something is wrong with me) for one reason or another and that Jared will too. But in his love, in his trust and truth and self, I know that's not true. I know quite clearly that is a lie that the devil uses to weaken me and distract me. To put fear in my life, to shackle me.

So there's my long reason to the delay. I shut down. I was introspective and trying to breath. I had a lot of "life" in my lungs, I was drowning and then tired from the struggle. I am Pollyanna and I'm getting back to sunshiny. God is pursuing me and working in my life. I'm letting Him, like I said I would, but like all relationships it is constant work. We're coming together but it takes time.

Jared doesn't like that I think about it as much but my prayers constantly turn towards another baby. Those around us wish for other things but let me tell you: a child represents hope and future. When it is taken away from you, there's little purpose. When life constantly throws up reminders, and trust me I see every pregnant lady, I see every family, every baby buggy, every diaper purchase. EVERYWHERE I'm reminded that I'm not a mom here. I'm waiting, constantly waiting to use that part of me that has already been awakened and is just sitting innate in me. I'm waiting on a baby. Nothing will change that until I feel a small body swimming in my belly. Whether you think your prescription to what Jared and I need isn't this, you need to step into our shoes and walk a mile. We are mommy and daddy, our lives in that aspect is on hold. We're ready, we have the supplies, physical and emotional. We've been ready and waiting for over a year. No one is more prepared and wanting than those of us who are angel parents. And I'd appreciate it if your prayers and petitions would turn towards this realization as well. No peace will ever take full grasp of Avery's gap in our lives, but purpose and hope will come through only in his sibling. There's no way of you fully comprehending this if you haven't experienced it, but just trust in my experience. This is the truth. I speak from no other way.

My update is simple. I needed a break from everything. Just some time to reconstruct my Pollyanna. I fell out of the tree reaching for my doll and I'm learning to walk again. There's lots to do and accomplish and I'm well on my way. The sun is peeking through, Spring doesn't happen suddenly, blooms open, slowly but graciously.

Hello!!

I'm sorry I haven't posted in a minute. I've come through some medical fun-ness. I'm sure my doctors turned into vampires for 3 weeks there. O well! At least that's done! I'm feeling much better too!

So Avery's Angels is well on it's way! We have so many new faces who have reached out for help or to help and we are getting the site up soon (look for it in a few weeks!) and UNC Hospitals has created a whole team for our medical web needs. It's very promising.

If you have been referred to this site looking for support please email me at meghanhall@averysangels.org We have a library of support available to you and whatever you may need, medical answers, hospital referrals, support, or just to talk we can get you plugged in!

(I LOVE SAYING WE!!!)

If you are an existing group or related group I want to enlist your help and support. We're taking everything out there to the next level. And we want you and your members listed to broaden your efforts, help you and also have your help with what we have going on! Put it this way, if every gastroschisis site out there could umbrella there would be a family in each county in the US with gastroschisis experience who could help another family. Let's do this!!!

I will forewarn everyone that I'm thankful that I will no longer be the sole face and spokesperson for this endeavor. The websites will be up and you will see how many thousands of families out there all need Angels (that's us!) and how we're getting to them AND how our angels and babies (some of whom are grown!) helping everyone.

(And I can start journaling again!!)

Cycles of grief are tricky and I don't want anyone who is searching for answers to be dissuaded and overwhelmed by some of the content here. YOUR PROGNOSIS IS GOOD! Our Avery boy was a little anomaly but his carepath was not. That is my motivation, our motivation (I LOVE SAYING OUR TOO!!!) That we know how alone it feels and how little there is out there that you can get to for a real answer. There's a lot, scattered everywhere, but we're getting to answers in one place to inform you and give you some of that control and power back that I'm sure you're feeling got yanked right out of your hands. Your baby is going to be on an amazing adventure. And we're here to get you through it all.

LET US HELP! I know we sound like every other website out there for right now, but the good news is we have reached their admins and hopefully soon we'll be all together. And we can offer a DIRECT LINE OF COMMUNICATION WITH ONE OF THE MOST EXPERIENCED GASTROSCHISIS COMMUNITIES AND HEALTH FACILITIES IN THE NATION! (It will come from a doctor with a UNC email address so don't believe me? Just try! hehe)

Join us! Meet us! Let us meet you! Let us help you!

Love from so so many at Avery's Angels
Meg

Forward momentum

This week we have recruited many new volunteers and the gears are turning. I'm learning how much I desperatly need a computer as my iPhone makes organizing all these folks and information increaslingly more and more difficult.

Several things-

We need more volunteers and more information. Please contact me with your name, information, talents to offer and interests to meghanhall@averysangels.org

We will be moving forward to get our websites up. I have a meeting this weekend with the webdesigner to organize and design our content. I will warn that our initial output will be a work in progress but I'm so confident that it will be a great foundation. We will be starting with our support site, averysangels.org while we allow time for the UNC Hospitals to collect the massive amounts of information for the medical site.

I'm still looking for carepath stories and belly button pictures. Please submit them too me (bear in mind we won't list names if people would rather not once they are posted.) Any medically relevant pictures or video we'd love to make accessible to our parents out there.

Let me hear from you! Contact me at meghanhall@averysangels.org any time with concerns, questions, support needs and suggestions. We are here to serve.

Psalms 91, we are here to be the angels to lift your body and spirit up so that your feet will not strike a stone. Let us help and build this organization in the way that will best benefit you.

Love and blessings
Meg