I met with Dr. Helmrath and Cutler Andrews on Monday of this week and have some very exciting news to share with the Gastroschisis Community and as SOON as I get through this VERY busy week with the worship band concert tomorrow (http://www.godbepraised.info/) then I will let everyone know the details.
PLEASE keep in touch via my email at meghanhall07@gmail.com NC is at the epicenter of what the Medical Community is calling the "gastroschisis belt" and I believe what will be in the works is a Center for Gastroschisis Care and Support. I'm going to be utilizing a wonderful resource to get non-profit funding and we're going to start here at UNC Chapel Hill Hospitals. There will be a support group and information for all gastroschisis pre-natal care, mommies, daddies and families, educational material and funding for research for the causes of Gastroschisis.
Dr. Helmrath specializes in gastro-intestinal repair and reconstruction. He gets around 5 million a year just to research how best to repair the bowel of our babies. This research is PIVOTAL in the reconstruction of gastroschisis babies. In the case of Avery, if we had more research and far more advancements with stem-cell and gastro-intestinal reconstruction he would have had a chance to survive. Our focus will be on repair and prevention.
In the mean time get the word out, let's start a mailing/emailing list and get united. meghanhall07@gmail.com Encourage ALL women to take a supplemental Folic Acid Vitamin AS SOON as they find out their pregnant. If you're NOT on any pregnancy prevention and you're under the age of 20 please note you are at an increase risk, your statistic makes up for around 90% of the gastroschisis cases. So make sure you're healthy and ALWAYS choose safe sex.
Also, if you're not actively practicing safe sex, you should know you're almost guaranteed to carry a child with any sort of fetal developmental issues if you are smoking, drinking and/or engaging in drug use.
Moral of the story, if you're not ready for babies, then make sure you're taking appropriate measures. If you are pregnant, make sure you discontinue all questionable activities, take pre-natals, folic acid supplements and your health very seriously, especially if you're a young mom. Apply for WIC and eat healthy foods.
You may think like I did, that what worked in my Grandmother's day would work for me. Times are very different, the air quality, the foods and the water that we're consuming is very different that Grandma's. We don't know exactly what causes all these fetal issues, but your health is intrinsically linked to your baby's health.
Spread the word. We're going to get families supported, taken care of and babies delivered healthy and ready to go home. We're going to get education out there, funding to find out what and why and we're going to make a difference.
In Avery's name I promise these things. =)
Thursday, October 29, 2009
Monday, October 19, 2009
A break
After the October15th event, with the Worship Concert at the end of this month, rehersals, church, work......lots and lots going on. I'm going to hide a little bit for a little while. If I come of as short, I'm just really tired and have a lot on my heart.
Friday, October 16, 2009
I don't know what to say/do
Here are things NOT to say to a person who has lost a child;
"I understand, I lost a parent/sibling/spouse/grandparent/best friend."
Nope! Not the same AT ALL.
Just don't say "I understand." Just steer clear of that totally.
"Well he's in a better place."
Extremely hurtful and not helpful.
"God needed....." fill in the blank there.
God doesn't need anything. So leave that be.
The moral is there is no right words here. There is nothing but time and love. Don't ignor the pain, ask often how they are. Don't ask "are you OK?" because it's going to take a long time for them to get anywhere close to "OK." Just ask "Hey, how are you today." Be prepared for honesty.
The phrase that helped me the most was;
"I can't even imagine."
Or
"I don't want to even think of what you're going through."
It justifies the pain it justifies the miss ache and hurt.
Even months/weeks/years down the line let them know that you haven't forgotten and they're not forgotten and their baby hasn't been forgotten. Tell them "Hey, I want you to know that I still think about baby and you're an amazing mother/father."
Meals are helpful. Gift cards to resturants with Carry out are helpful. Grocery shopping is also helpful.
Ask about Sympathy cards and momentoes. Be PREPARED that they may not want that "beautiful" plaque that you think is just "perfect," or the card that you think might just have the "perfect words." Remember, it's not about what you think would be helpful. It's about what they need.
Here's why, I'm going to use my example, sorry for the selfishness;
The day when "100% brain dead" sank in was awful. We were so torn between giving our son peace and wanting just to keep him around forever. There are details that will rip your heart out. But it comes down to Jared and I took our beautiful son out to the butterfly garden and they took the breathing tube out and we sat there in the dark as his little heart stopped beating. We watched the color ebb from his face, his little lips turned blue, his body became heavy. I was so beside myself I carried him all the way up to the morgue. I heard the refridgerator door shut. I saw the toe tag. And then I had to sit in a funeral home and figure out how to put that tiny body in the ground. The tiny body I carried for 9 months.
Any gift I get that commemorates the fact that my son is dead takes me to that day. Those moments. It doesn't remind me of my wee laddy laughing of his mobile. They come because of his death. And when I get them I remember 1) he's dead and 2) what that looked like.
I don't know that that's what your loved one goes through with every gift per say. But I'm begging you to consider that. We got lots of very nice gestures. But they were not helpful to our healing. Maybe the givers. But not to our comfort. The dates are so hard to see. The fact that they're coming because he was dead is was hurtful. The messages about angels watching over just added to the ache. We don't want him watching over us. We wanted to watch over him.
Ask those loved ones who have lost to close their eyes and imagine what they would see, feel, smell, hear that reminds them of the goodness that their baby brought to them. If they don't know what that is, then just wait for their signs. Just love on them.
There are so so so many bills! Some of them will want to spend some time in the home away from work and that's costly. There are light bills, electricity, gas, cars, insurance, rent/mortgages, water, phones, school, food, credit cards. The last thing they really want to think about. I know it sounds rude, but money takes a huge stress away and puts the energy back on the healing.
It was the greatest gift when combined from Jared's family, Journey Church, my school friends and Little Stepping Stones rose up and helped take care of our bills for a whole 2 months. We got to spend a few weeks in our little hole being with each other and healing with out worrying about the landlord calling and the lights being shut off.
Trips are helpful and healing. Time to get away. Time to heal together. Try and start. One of the most amazing things we did after Avery passed away was go to the Biltmore House with Jared's parents. It gave us something to look forward to and be with the people that we love. Be careful to not send them to a place that will just remind them of what they lost.
Little stepping stones decided to do a butterfly garden at the daycare so that Avery can look after and play with the children there. That's amazing, that comemorates his life.
I can't tell you how many rose bushes and trees people are going to give. So ask first. Asking is the best. Don't try and be a mindreader. Don't "take it upon yourself" to do things without being directed.
Please please please know that your love is so appreciated. Your aching for the ache is God in you. Just listen for how that energy should be directed. I can't say it enough. Don't be a mind reader.
I hope this helps. I know how helpless it must feel to watch someone go through this. Just loving on them helps more than you know. You don't have any answers and that's OK. It's the shoulder, the ear and the support that you do have that is more helpful than anything you may say.
"I understand, I lost a parent/sibling/spouse/grandparent/best friend."
Nope! Not the same AT ALL.
Just don't say "I understand." Just steer clear of that totally.
"Well he's in a better place."
Extremely hurtful and not helpful.
"God needed....." fill in the blank there.
God doesn't need anything. So leave that be.
The moral is there is no right words here. There is nothing but time and love. Don't ignor the pain, ask often how they are. Don't ask "are you OK?" because it's going to take a long time for them to get anywhere close to "OK." Just ask "Hey, how are you today." Be prepared for honesty.
The phrase that helped me the most was;
"I can't even imagine."
Or
"I don't want to even think of what you're going through."
It justifies the pain it justifies the miss ache and hurt.
Even months/weeks/years down the line let them know that you haven't forgotten and they're not forgotten and their baby hasn't been forgotten. Tell them "Hey, I want you to know that I still think about baby and you're an amazing mother/father."
Meals are helpful. Gift cards to resturants with Carry out are helpful. Grocery shopping is also helpful.
Ask about Sympathy cards and momentoes. Be PREPARED that they may not want that "beautiful" plaque that you think is just "perfect," or the card that you think might just have the "perfect words." Remember, it's not about what you think would be helpful. It's about what they need.
Here's why, I'm going to use my example, sorry for the selfishness;
The day when "100% brain dead" sank in was awful. We were so torn between giving our son peace and wanting just to keep him around forever. There are details that will rip your heart out. But it comes down to Jared and I took our beautiful son out to the butterfly garden and they took the breathing tube out and we sat there in the dark as his little heart stopped beating. We watched the color ebb from his face, his little lips turned blue, his body became heavy. I was so beside myself I carried him all the way up to the morgue. I heard the refridgerator door shut. I saw the toe tag. And then I had to sit in a funeral home and figure out how to put that tiny body in the ground. The tiny body I carried for 9 months.
Any gift I get that commemorates the fact that my son is dead takes me to that day. Those moments. It doesn't remind me of my wee laddy laughing of his mobile. They come because of his death. And when I get them I remember 1) he's dead and 2) what that looked like.
I don't know that that's what your loved one goes through with every gift per say. But I'm begging you to consider that. We got lots of very nice gestures. But they were not helpful to our healing. Maybe the givers. But not to our comfort. The dates are so hard to see. The fact that they're coming because he was dead is was hurtful. The messages about angels watching over just added to the ache. We don't want him watching over us. We wanted to watch over him.
Ask those loved ones who have lost to close their eyes and imagine what they would see, feel, smell, hear that reminds them of the goodness that their baby brought to them. If they don't know what that is, then just wait for their signs. Just love on them.
There are so so so many bills! Some of them will want to spend some time in the home away from work and that's costly. There are light bills, electricity, gas, cars, insurance, rent/mortgages, water, phones, school, food, credit cards. The last thing they really want to think about. I know it sounds rude, but money takes a huge stress away and puts the energy back on the healing.
It was the greatest gift when combined from Jared's family, Journey Church, my school friends and Little Stepping Stones rose up and helped take care of our bills for a whole 2 months. We got to spend a few weeks in our little hole being with each other and healing with out worrying about the landlord calling and the lights being shut off.
Trips are helpful and healing. Time to get away. Time to heal together. Try and start. One of the most amazing things we did after Avery passed away was go to the Biltmore House with Jared's parents. It gave us something to look forward to and be with the people that we love. Be careful to not send them to a place that will just remind them of what they lost.
Little stepping stones decided to do a butterfly garden at the daycare so that Avery can look after and play with the children there. That's amazing, that comemorates his life.
I can't tell you how many rose bushes and trees people are going to give. So ask first. Asking is the best. Don't try and be a mindreader. Don't "take it upon yourself" to do things without being directed.
Please please please know that your love is so appreciated. Your aching for the ache is God in you. Just listen for how that energy should be directed. I can't say it enough. Don't be a mind reader.
I hope this helps. I know how helpless it must feel to watch someone go through this. Just loving on them helps more than you know. You don't have any answers and that's OK. It's the shoulder, the ear and the support that you do have that is more helpful than anything you may say.
Message to the Searching
I'm going to work on this post and at too it.
First of all, please know that you're not alone. We don't want to add anymore families to the ranks of Parents of Angels, but you are among a good people. And we love you.
You won't meet all of us, but we share a very special part of heaven. We share a very special hope.
And some of you may not be ready for the word hope yet. You might be fresh or still very angry and hurt about it and that's OK. There's no prescription or time limit for you to start gathering some peace and start looking for hope, just know that some day you'll start seeing hope again.
It will peak out at you in very small ways. Quietly steeping back into your life. It won't ever be reason enough to cover the deep gash in your heart that burrows through to your soul. But it will give you a small balm to ease the pain.
Some of you maybe like me. The hope for a family was in the child that is now gone. You're left with empty arms and searching new faces for some fiber of a family. You've learned, as I, that during the toughest of times, true colors are not only shown, they're flaunted.
You're learning to let go and trust. You're heart was probably already plenty bruised, and now this scar is taking the very breath out of your body. But there are hands reaching into yours, there are shoulders waiting to be soaked. Please allow them to come and hold you. Forget your pride. Fall and let them catch you. Pick up the phone and ask for the stranger who you barely know who has offered come and sit with you on your couch, in your car, on the park bench and cry, scream, yell.
Make no apologies. None will be accepted because they are unnecessary.
Some of you have amazing support around you, built in and you're nesting in a burrow of love. How very special that is. One day you will look back and see God's face and love in the faces that tenderly took your heart and tried to help.
When you get those God forsaken sympathy cards don't read the shallow words that Hallmark has prescribed to you. Look at the names and write them down. It's not the card, its the person who sent it. It's something tangible that they're trying to reach to you.
It's OK to toss them still sealed just looking at the return address. This is your pain this is your loss. Grief is something that others feel for you as the Spirit turns in empathy. But it's not up to you to give the closure to others. Don't be responsible for the grief and closure of others.
It's OK to tell your friends "I just can't be a good friend right now. I can't listen to your problems because even though I don't want to, I'm going to compare them to mine and it's just going to be impossible for me to give to you what you need."
It's honest, it's the truth.
It's OK to turn your phones off. It's OK to not check your email. It's OK to want to sleep all day and cry all night. It's even OK to want to share your story with every stranger that you're moved to speak to.
People will speak to you of loosing their parents, spouses, uncles and aunts, grandparents, siblings and best friends. It's OK to say "It's not the same at all." It's OK to tell them, "I just can't listen to this right now. You don't get it." You don't have to explain why, and it's OK if you want to explain "This was my child, my hope, this is not the natural thing, for a parent to bury their child. It's not the same at all."
It's OK to tell people "You don't understand" because they don't.
I'm telling you be honest. Be true. If you can't deal with the words, the rest of the world dealing with you then don't! It's not up to the rest of the world.
No one is a mind reader. You will find that those who you relate to the most are parents that lost children too.
Some of you will find even still it's hard to relate to those who have children; parents who lost a twin but still have a child. You come home to an empty nursery and nothing to pour those motherly and fatherly instincts into at all. You don't want to re-learn your life.
Some of you will find it hard to be around twins that both survived. Around mothers that had easy pregnacies, deliveries and then went right home.
You'll long for the abilility to be exhausted trying to take care of a newborn, an infant a child. Wanting the stress of having both twins with you, or just any baby. You'll get mad at people who say that "Man! If I could just get a break!"
You'll find you can't be around pregnant women, you can't be around babies, children. It will make you sick to your stomach.
People will complain about their children, and it's OK to say "I would love to have that in my life." You'll just be reminding them of the gift that they have.
It's OK to be mad at God. It's OK to be mad for a long time. It's OK to watch one of you heal faster than the other. It's OK for one to take a really long time. It's OK if you both take a very long time.
It's OK if one of you jumps back into work, if you both do. It's OK. It's even OK to take a very long time to go back to work. Just support each other and what each other needs. Don't feel like you have the answers for the other, or knows what the other needs. Each is dealing with it in their way, as a mother and the person, as a father and the person.
It's OK if you can't speak of it for years.
It's OK to hate watching the person you love go through this and not know what to say. It's OK to hurt watching them hurt. It's OK to hate not knowing what to do. You do have empathy and love. You understand because you were there too. And you have love. Listen, listen and love.
There's no right or wrong way to deal with this.
I can't visit Avery's grave site. It's too much for me. Some will go every day. Some won't go at all. It's OK.
Here's what's not OK;
Not asking for help.
Not being honest with yourself, God and those around you.
Holding in any emotion. Trying to rationalize why you shouldn't feel hurt.
Trying to "brush things off."
Try with all you have to heal whole and not heal in bitterness. If you can't find your faith in all this, that's OK. Just keep yelling at God that you're angry and frustrated. Yell at Him to send answers. Be ready when some of them come as whispers.
He'll send His calling card as small bits of hope. You'll get to where you start seeing it.
Then there will be days where you've started to live without and you'll be going along and all of a sudden, in the library, in the mall, in the grocery store, you'll reach for something and just burst into tears.
Cry. The tears that fall from your eyes have fallen from His eyes first.
It's no comfort, but God knows, He sent His perfect and only son to die for sinners. He watched his baby boy be born into a cold world with no crib to spare. He listen to the suffering as he laid on the cross. He watched as those whom His son was saving jeered and laughed at His baby boy suffered.
And Mary was there too. She gave birth to a Son she knew would live to die. A son she would bury while she was still living.
As did David. As did Job. As did Adam.
It doesn't help. I know some of these words don't help. But I want you to think of this;
God asked Abraham to sacrifice Issac and stopped him. In that moment, I want you to think of this. I've often wondered if in that moment, God thought; I can't put my child through this deep pain. It's too much and I must take it as my own. I will send my son. I will sacrifice my son because this is pain is too much for my child. I will take on this pain for him. He has proven his faithfulness. But the pain of loosing his long awaited son, I don't want that for him. That pain is too much.
God knows.
Remember we are created in his image. This includes some of the emotions we feel.
Through all this, when you're ready, give God a chance. I know some of you are saying "Well, He didn't give me a chance." You're right, it certainly doesn't seem that way. I'm not saying give Him a chance, I'm saying give Him the opportunity to heal you.
It will come from those around you. It will come from things you find. There little love notes from God saying "I love you. I know you're hurting and angry and I can't explain right now, but I Love you."
But when you're ready to listen to His whisper. Don't rush. Be honest with Him.
I will tell you that the miss will stay. But you will find some peace. Some day peace will come. Time, which this hurts and sucks to hear in the abyss that you feel like you're spiraling in, time will heal. Time will teach you that there was greatness in the loss, that in some way it was a blessing.
That may sound so back handed to you. Some of you will find hope in that. It's all OK.
Look for the resources. Don't be afraid to ask for counselors. Don't be afraid to get some sleep aides, some anti-anxiety medication. If your pastor tries to tell you "Hey, this is what's going on." Um yes, he/she's wrong. Find the one that says "There's no words for what you're going through right now. I'm so sorry. I don't have the answers." Because that's the truth.
Loving on you is all that anyone can do for you.
Please go to these sites http://www.october15th.com/ and http://www.october15thraleigh.com/ because there are resources there for all sorts of grieving. Seek them and you will find the right balm for you.
I can thank;
Jared
Jared's family
My little brother
My Journey Church family; Lisa and Dave, Janice, Paul, Jimmy, Smooth, Rusty, Karen, Paul and Blaire, Steven and Sheri
My Cooper Family; Cynthia and the 1st grade team, Barry, Kristy, Kimberly, the 3rd grade team and Mrs. Rao, Mrs. White, Anthony, Julie Taylor, Dani, Trisha, Jackie, Star, Mrs. Jones, Mrs. Fontaine, Mrs. Lebo, Ranae and Debbie.
Anthony and Sherri Clayborne,
My wonderful Little Stepping Stone's Family; Beth and Tracey especially
Bonnie Wetzel
Malia and Jessica
Lillian
Biby Shapiro
Jessica Holmes
Aunt Jonie, Aunt Kim
Ashley Carter
Ashley Saddock
These people are my family. Those who gave more than they could. Those who give more than I could ask. Find your family. Let them hold you. Let them soak your tears.
If you need me meghahall07@gmail.com
First of all, please know that you're not alone. We don't want to add anymore families to the ranks of Parents of Angels, but you are among a good people. And we love you.
You won't meet all of us, but we share a very special part of heaven. We share a very special hope.
And some of you may not be ready for the word hope yet. You might be fresh or still very angry and hurt about it and that's OK. There's no prescription or time limit for you to start gathering some peace and start looking for hope, just know that some day you'll start seeing hope again.
It will peak out at you in very small ways. Quietly steeping back into your life. It won't ever be reason enough to cover the deep gash in your heart that burrows through to your soul. But it will give you a small balm to ease the pain.
Some of you maybe like me. The hope for a family was in the child that is now gone. You're left with empty arms and searching new faces for some fiber of a family. You've learned, as I, that during the toughest of times, true colors are not only shown, they're flaunted.
You're learning to let go and trust. You're heart was probably already plenty bruised, and now this scar is taking the very breath out of your body. But there are hands reaching into yours, there are shoulders waiting to be soaked. Please allow them to come and hold you. Forget your pride. Fall and let them catch you. Pick up the phone and ask for the stranger who you barely know who has offered come and sit with you on your couch, in your car, on the park bench and cry, scream, yell.
Make no apologies. None will be accepted because they are unnecessary.
Some of you have amazing support around you, built in and you're nesting in a burrow of love. How very special that is. One day you will look back and see God's face and love in the faces that tenderly took your heart and tried to help.
When you get those God forsaken sympathy cards don't read the shallow words that Hallmark has prescribed to you. Look at the names and write them down. It's not the card, its the person who sent it. It's something tangible that they're trying to reach to you.
It's OK to toss them still sealed just looking at the return address. This is your pain this is your loss. Grief is something that others feel for you as the Spirit turns in empathy. But it's not up to you to give the closure to others. Don't be responsible for the grief and closure of others.
It's OK to tell your friends "I just can't be a good friend right now. I can't listen to your problems because even though I don't want to, I'm going to compare them to mine and it's just going to be impossible for me to give to you what you need."
It's honest, it's the truth.
It's OK to turn your phones off. It's OK to not check your email. It's OK to want to sleep all day and cry all night. It's even OK to want to share your story with every stranger that you're moved to speak to.
People will speak to you of loosing their parents, spouses, uncles and aunts, grandparents, siblings and best friends. It's OK to say "It's not the same at all." It's OK to tell them, "I just can't listen to this right now. You don't get it." You don't have to explain why, and it's OK if you want to explain "This was my child, my hope, this is not the natural thing, for a parent to bury their child. It's not the same at all."
It's OK to tell people "You don't understand" because they don't.
I'm telling you be honest. Be true. If you can't deal with the words, the rest of the world dealing with you then don't! It's not up to the rest of the world.
No one is a mind reader. You will find that those who you relate to the most are parents that lost children too.
Some of you will find even still it's hard to relate to those who have children; parents who lost a twin but still have a child. You come home to an empty nursery and nothing to pour those motherly and fatherly instincts into at all. You don't want to re-learn your life.
Some of you will find it hard to be around twins that both survived. Around mothers that had easy pregnacies, deliveries and then went right home.
You'll long for the abilility to be exhausted trying to take care of a newborn, an infant a child. Wanting the stress of having both twins with you, or just any baby. You'll get mad at people who say that "Man! If I could just get a break!"
You'll find you can't be around pregnant women, you can't be around babies, children. It will make you sick to your stomach.
People will complain about their children, and it's OK to say "I would love to have that in my life." You'll just be reminding them of the gift that they have.
It's OK to be mad at God. It's OK to be mad for a long time. It's OK to watch one of you heal faster than the other. It's OK for one to take a really long time. It's OK if you both take a very long time.
It's OK if one of you jumps back into work, if you both do. It's OK. It's even OK to take a very long time to go back to work. Just support each other and what each other needs. Don't feel like you have the answers for the other, or knows what the other needs. Each is dealing with it in their way, as a mother and the person, as a father and the person.
It's OK if you can't speak of it for years.
It's OK to hate watching the person you love go through this and not know what to say. It's OK to hurt watching them hurt. It's OK to hate not knowing what to do. You do have empathy and love. You understand because you were there too. And you have love. Listen, listen and love.
There's no right or wrong way to deal with this.
I can't visit Avery's grave site. It's too much for me. Some will go every day. Some won't go at all. It's OK.
Here's what's not OK;
Not asking for help.
Not being honest with yourself, God and those around you.
Holding in any emotion. Trying to rationalize why you shouldn't feel hurt.
Trying to "brush things off."
Try with all you have to heal whole and not heal in bitterness. If you can't find your faith in all this, that's OK. Just keep yelling at God that you're angry and frustrated. Yell at Him to send answers. Be ready when some of them come as whispers.
He'll send His calling card as small bits of hope. You'll get to where you start seeing it.
Then there will be days where you've started to live without and you'll be going along and all of a sudden, in the library, in the mall, in the grocery store, you'll reach for something and just burst into tears.
Cry. The tears that fall from your eyes have fallen from His eyes first.
It's no comfort, but God knows, He sent His perfect and only son to die for sinners. He watched his baby boy be born into a cold world with no crib to spare. He listen to the suffering as he laid on the cross. He watched as those whom His son was saving jeered and laughed at His baby boy suffered.
And Mary was there too. She gave birth to a Son she knew would live to die. A son she would bury while she was still living.
As did David. As did Job. As did Adam.
It doesn't help. I know some of these words don't help. But I want you to think of this;
God asked Abraham to sacrifice Issac and stopped him. In that moment, I want you to think of this. I've often wondered if in that moment, God thought; I can't put my child through this deep pain. It's too much and I must take it as my own. I will send my son. I will sacrifice my son because this is pain is too much for my child. I will take on this pain for him. He has proven his faithfulness. But the pain of loosing his long awaited son, I don't want that for him. That pain is too much.
God knows.
Remember we are created in his image. This includes some of the emotions we feel.
Through all this, when you're ready, give God a chance. I know some of you are saying "Well, He didn't give me a chance." You're right, it certainly doesn't seem that way. I'm not saying give Him a chance, I'm saying give Him the opportunity to heal you.
It will come from those around you. It will come from things you find. There little love notes from God saying "I love you. I know you're hurting and angry and I can't explain right now, but I Love you."
But when you're ready to listen to His whisper. Don't rush. Be honest with Him.
I will tell you that the miss will stay. But you will find some peace. Some day peace will come. Time, which this hurts and sucks to hear in the abyss that you feel like you're spiraling in, time will heal. Time will teach you that there was greatness in the loss, that in some way it was a blessing.
That may sound so back handed to you. Some of you will find hope in that. It's all OK.
Look for the resources. Don't be afraid to ask for counselors. Don't be afraid to get some sleep aides, some anti-anxiety medication. If your pastor tries to tell you "Hey, this is what's going on." Um yes, he/she's wrong. Find the one that says "There's no words for what you're going through right now. I'm so sorry. I don't have the answers." Because that's the truth.
Loving on you is all that anyone can do for you.
Please go to these sites http://www.october15th.com/ and http://www.october15thraleigh.com/ because there are resources there for all sorts of grieving. Seek them and you will find the right balm for you.
I can thank;
Jared
Jared's family
My little brother
My Journey Church family; Lisa and Dave, Janice, Paul, Jimmy, Smooth, Rusty, Karen, Paul and Blaire, Steven and Sheri
My Cooper Family; Cynthia and the 1st grade team, Barry, Kristy, Kimberly, the 3rd grade team and Mrs. Rao, Mrs. White, Anthony, Julie Taylor, Dani, Trisha, Jackie, Star, Mrs. Jones, Mrs. Fontaine, Mrs. Lebo, Ranae and Debbie.
Anthony and Sherri Clayborne,
My wonderful Little Stepping Stone's Family; Beth and Tracey especially
Bonnie Wetzel
Malia and Jessica
Lillian
Biby Shapiro
Jessica Holmes
Aunt Jonie, Aunt Kim
Ashley Carter
Ashley Saddock
These people are my family. Those who gave more than they could. Those who give more than I could ask. Find your family. Let them hold you. Let them soak your tears.
If you need me meghahall07@gmail.com
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.)
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.)
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.
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
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