THAT'S IT! I'm SO FED UP! I've been really patient for the past 3-4 weeks, maybe taking some of the "shine" I've put on this time will help so that I can FINALLY get some respect, maybe an iota for my feelings and anxiety of having this little boy on the 27th-30th. I feel like I'm right back at 3 years ago with people telling me all this stupid stuff about how I should feel and what I *should* do and be and they're making this time WORSE for me. **IF YOU HAVE NEVER HELD YOUR CHILD WHILE THEY DIED THEN CARRIED THEIR BODY TO THE MORGUE DON'T TELL ME HOW I SHOULD FEEL. DON'T MAKE A PRESCRIPTION FOR WHAT WOULD MAKE IT 'EASIER'.** I *AM* trying to be fair to this boy...he shouldn't have to contend with that...and Avery has the right to his time too. They are BOTH my sons. I don't want ONE overshadowing the other, NOR competing. So PLEASE STOP TELLING ME IT WOULD MAKE THINGS BETTER TO HAVE JR IN THAT TIME. If you hold your kid everyday, then leave ME alone. I do enough to make one of the hardest things for my family to endure a Grace for others. Please just respect what you don't want to understand. I AM trying to be happy about this baby coming, but it's not helpful when I turn to people for some validation and support and all I get is "you should...." look...if I didn't ask "hey, how should I feel??" then it's none of YOUR business to tell me. Sorry for the rant...and I have some beautiful friends who get it and I love everyone for being well intended. The point isn't to "forget" Avery, nor is it to invalidate anyone's feelings over this time...it's to allow both boys to have their separate times, one for grief and one for celebration without forcing one into the other and vice versa.
Grief cycles are easily identified by everyone else. I get that. I know people want to just say "snap out of it" and want us all to just quit remembering or validating something bleak in our pasts. It doesn't help to invalidate grief in that way. It invalidates the breath of the relationship lost, it denies the investment and thus the reason to miss. Grief doesn't necessarily have to be all consuming. I completely think around anniversaries that an individual has a full right to mourn and miss without people saying they need to go to therapy. Granted if you stop living and get sucked into it where nothing else your world is able to function, perhaps some different coping mechanisms are needed. However, if you're simply caught up in the memories of the time, and pained by the loss and separation, you're mourning the miss. Personally, I want my time to reflect on the life of my son, it's totality. Denying any part of it is denying part of him. His death is a tiny part of his life. Most of it was healthy and full of hope. And I relish those memories! But I am also granted time to weep and mourn that I can't feel the warmth of his hug, watch him grow and the memories I would have with him. And allowing myself to feel through those emotions during the bleak time of his life I don't see a problem with that. If it was all I ever considered then yeah, get me to counseling. But I can fondly remember being pregnant with him, laboring him and having him, so I can bleakly grieve him too. Let's face it. Although I'm very proud of all that Avery has done and continues to do, I have the right to miss him too. We did offer him to the world and allow his life to continue where we could have gone home and shut the door, and frankly sometimes Jared wishes we had. But we allowed his life to continue in the way that it had been offered to us by our Lord and Avery...in hope. We decided to not just let him be a memory marked by grief and a bronze and marble slab. So if we need time to be honest in our miss, people should understand and respect that. If we had gone home and shut down then tell me I need therapy, or a "baby would help"....but we didn't do that. Jared and I plunged right into our grief, we held on to each other where 90% of marriages and relationships fail after child loss, I started blogging and we agreed to do something great with our son and continue the hope and not the sorrow. But when it does come up...the only way *we* have been able to survive is that we grant each other our hurt. I don't try to push him when he gets upset about piles of AAGF stuff around the house "making him constantly remind him that Avery isn't here...and other people get to have their babies." I don't tell him that we're able to be part of that...the way we wished someone could have been for us. That's not fair, his hurt is in his loss. I know his intentions aren't for me to stop, it's to respect his place in his grief and he will respect mine. I don't pressure anyone to *feel* what I do, I just expect them to respect my feelings.
And I'm done. I think if I get one more response or post about what I should feel and do, a comment a text I will just turn everything off until we get through and do what we need to....
Monday, July 23, 2012
Wednesday, July 18, 2012
July 30th
I had a brief meeting this morning (really a "good to finally meet you, here are our fliers!") with another Patient Advocate/Foundation CEO and it got my mind thinking on why I do what I do.
And I think it's particularly important to put this out there as we near our Awareness Day (July 30th) and what that means as well.
No, I do not do this because it eases the pain of loosing my son. No I don't do this for kudos and accolades, because I want to capitalize off my son or because I particularly get anything out of it. If we find the cause, it will be wonderful and scary at the same time...it will provide validation on some levels and guilt on others. I do this because it's the right thing to do. No it's not easy retelling and living some of the saddest moments of my life, and no I do not expect everyone to be able to do so, and not everyone can. But for those who can give voice to various conditions and issues around the world for all those who can't, that's what it's all about. I don't think any parent wants to go home from the NICU and say...let me see how many times I can go back voluntarily. Or, let me rehash the worst moments of my child's life...as often as I possibly can. Life is about moving forward with a healthy understanding of where you've come from. My motivation for any of my activism is "well that was tough...and I'm not quite sure why that happened to me...but if I can help make one person feel less lonely about enduring the same journey, it will make part of that hurt a little less and worthwhile."
I have an incredibly big mouth. There's not much I don't share, or talk about or even rant about. "You've got to stand for something or you'll fall for anything" I totally get, part of it is personality, yes I have friends on all sides of all issues, and I completely respect those who are intellectual about their standings, and no one is confused about my own convictions. People can live quietly, and I respect that too. I, for whatever reason of God's hand over me, am not able to be very quiet about things I'm passionate (or angry) about.
That being said, there are several things I've gone through that people don't like to talk about or confront, no one likes to think especially how tiny little babies can be born into the world with problems and need so much and suffer so much. It's why you see children and adults on commercials, and not often babies with tubes and wires coming out of them. But it happens, one out of every 33 babies in the US. And not all of them make it. And who wants to think about that either?
But you should...it could be you...someone you love...someone you know. And no you don't have to live in constant fear that the cheese on your pizza can cause cancer or a birth defect...but we should be aware to improve the quality of compassion that exists in the world.
So again....why do this? Well, I am Avery's mom. I always will be. So in the same way I will advocate for his sister and his little brother, I advocate for him. Personal agenda in all this? That parent's have options, that they have the right to be educated on everything that their child could come to in this disease, to help parents realize the journey of the NICU isn't a destination of home but health, to create a community for gastroschisis, and especially to get the attention of the medical world that 1) it's not "OK" because the survival rate happens to be on the higher side 2) it's existed long enough without research being done as to why and how best to treat it. Those are personal "I get a kick out of..." things.
But beyond that....why do this? Why did I name it Avery's Angels? Why do I continue to be part of it....(when I said 4 years ago I never wanted to be in charge of anything ever again)?
I named it Avery's Angels to empower survivors and families here...that carrying on scars and sharing stories and building a community didn't carry over the worst moments of people's lives...it provided hope and battled the odds for others. Angels on earth that can save more Averys.
Why is the Awareness day on the day Avery passed? Who would want to remember and celebrate that at all?
Yes that day is incredibly painful, but also there is much hope in what transpired that day. Between the lactation consultant coming in and helping me stop my supply with cold cabbage leaves, the hospital sending us the condolence cart, all the paper work to fill out for autopsy, where the "body" was going, the death certificate, preparing to try and set up some sort of fund for Avery and gastroschisis, various team and care members coming by to share their tears, finding an outfit, finding a funeral home and a burial plot, who to contact....and then that night where we finally got to hold him again after 16 days, finally take him outside to feel the fresh air on his cheeks.... only to say goodbye, and carry a body to the morgue....there's so much finality to the ink, the words and the moments...but there buried in all of it is hope....there existed a great family who came together for this boy. A medical team who loved him beyond what I think anyone of them thought they would, a team of people around the country that had no idea who we were but prayed, donated blood in his honor and followed emails, a family of a mom and a dad and various people who loved them that saw them through, emotionally, physically and financially 107 days of life all because there was a little boy. Yes he happened to be mine, and he happened to be named Avery, but Avery's life came to be more than that to me, and what I hoped people would remember. For however short it was, everyone was fighting for the life of one tiny individual and those people who loved him. People sacrificed, contributed and invested. And while it would seem it was for a loss, it wasn't at all. He lived and loved and changed us all....brought us all together for 107 days. And that could be anyone.
July 30th is the day my son left me to go Home. He left to be free and healthy and whole. But he did not leave the fight, he never left the hope. He left them behind in us to carry on. When I stood back from all we had gone through and the pain we were steeping in....I couldn't believe how incredibly blessed we were by all the individuals who picked up various fibers to spin and weave a strong rope to throw to us in our darkest moment. For Avery. And that was what motivated me to say "this is something everyone needs....this needs to be standard."
I also remembered how I had no idea, no matter all the searching I had done, what to expect, who to turn to for answers beyond our own medical team, and how powerless I felt....and after coming through, I realized, it didn't have to be that way for anyone else...that someone needed to collect the info and put it in one place...and granting the numbers...many many people could benefit. That people could come together for community, for fight for a voice and to fight to save and prevent more angels being handed wings.
We....those left behind, those here, we could be angels here to someone else.
So the 30th, while I surrendered my son in this life....I never gave up on what he stood for, and what his life meant and stood for. What the power of 107 days could do to a family, an institution, a community and hundreds of people who didn't know each other. Just one tiny little life, a statistic in a "normal world" and the brunt end of that statistic. Avery didn't have to end as a patient, a number and a tragic margin, he didn't have to be something people avoided in conversation, that pictures didn't need to come down and memories forgotten...because he truly was beautiful, amazing and in his short time here gave us joy and love beyond what we had known before. We could carry forth all of that, and share all of that and perpetuate all of that for the rest of the world and the rest of our lives.
Yes the 30th is hard in the sacrifice it marks for our family. But it's not hard in the love and hope he was, that we're now trying to share with everyone else. The 30th is about remembering, but it's about remembering why...and that is hope. In the losses, in the tragedy of the continuation of this disease, in that battle that babies have endured and children and adults continue to go through, there is still hope, and there is now an incredible community weaving a big rope to hold us all together.
The 30th is about surrendering to hope.
And hope is my business. That's why I do what I do. I want to be part of the best thing I learned from my son....and that is hope.
And I think it's particularly important to put this out there as we near our Awareness Day (July 30th) and what that means as well.
No, I do not do this because it eases the pain of loosing my son. No I don't do this for kudos and accolades, because I want to capitalize off my son or because I particularly get anything out of it. If we find the cause, it will be wonderful and scary at the same time...it will provide validation on some levels and guilt on others. I do this because it's the right thing to do. No it's not easy retelling and living some of the saddest moments of my life, and no I do not expect everyone to be able to do so, and not everyone can. But for those who can give voice to various conditions and issues around the world for all those who can't, that's what it's all about. I don't think any parent wants to go home from the NICU and say...let me see how many times I can go back voluntarily. Or, let me rehash the worst moments of my child's life...as often as I possibly can. Life is about moving forward with a healthy understanding of where you've come from. My motivation for any of my activism is "well that was tough...and I'm not quite sure why that happened to me...but if I can help make one person feel less lonely about enduring the same journey, it will make part of that hurt a little less and worthwhile."
I have an incredibly big mouth. There's not much I don't share, or talk about or even rant about. "You've got to stand for something or you'll fall for anything" I totally get, part of it is personality, yes I have friends on all sides of all issues, and I completely respect those who are intellectual about their standings, and no one is confused about my own convictions. People can live quietly, and I respect that too. I, for whatever reason of God's hand over me, am not able to be very quiet about things I'm passionate (or angry) about.
That being said, there are several things I've gone through that people don't like to talk about or confront, no one likes to think especially how tiny little babies can be born into the world with problems and need so much and suffer so much. It's why you see children and adults on commercials, and not often babies with tubes and wires coming out of them. But it happens, one out of every 33 babies in the US. And not all of them make it. And who wants to think about that either?
But you should...it could be you...someone you love...someone you know. And no you don't have to live in constant fear that the cheese on your pizza can cause cancer or a birth defect...but we should be aware to improve the quality of compassion that exists in the world.
So again....why do this? Well, I am Avery's mom. I always will be. So in the same way I will advocate for his sister and his little brother, I advocate for him. Personal agenda in all this? That parent's have options, that they have the right to be educated on everything that their child could come to in this disease, to help parents realize the journey of the NICU isn't a destination of home but health, to create a community for gastroschisis, and especially to get the attention of the medical world that 1) it's not "OK" because the survival rate happens to be on the higher side 2) it's existed long enough without research being done as to why and how best to treat it. Those are personal "I get a kick out of..." things.
But beyond that....why do this? Why did I name it Avery's Angels? Why do I continue to be part of it....(when I said 4 years ago I never wanted to be in charge of anything ever again)?
I named it Avery's Angels to empower survivors and families here...that carrying on scars and sharing stories and building a community didn't carry over the worst moments of people's lives...it provided hope and battled the odds for others. Angels on earth that can save more Averys.
Why is the Awareness day on the day Avery passed? Who would want to remember and celebrate that at all?
Yes that day is incredibly painful, but also there is much hope in what transpired that day. Between the lactation consultant coming in and helping me stop my supply with cold cabbage leaves, the hospital sending us the condolence cart, all the paper work to fill out for autopsy, where the "body" was going, the death certificate, preparing to try and set up some sort of fund for Avery and gastroschisis, various team and care members coming by to share their tears, finding an outfit, finding a funeral home and a burial plot, who to contact....and then that night where we finally got to hold him again after 16 days, finally take him outside to feel the fresh air on his cheeks.... only to say goodbye, and carry a body to the morgue....there's so much finality to the ink, the words and the moments...but there buried in all of it is hope....there existed a great family who came together for this boy. A medical team who loved him beyond what I think anyone of them thought they would, a team of people around the country that had no idea who we were but prayed, donated blood in his honor and followed emails, a family of a mom and a dad and various people who loved them that saw them through, emotionally, physically and financially 107 days of life all because there was a little boy. Yes he happened to be mine, and he happened to be named Avery, but Avery's life came to be more than that to me, and what I hoped people would remember. For however short it was, everyone was fighting for the life of one tiny individual and those people who loved him. People sacrificed, contributed and invested. And while it would seem it was for a loss, it wasn't at all. He lived and loved and changed us all....brought us all together for 107 days. And that could be anyone.
July 30th is the day my son left me to go Home. He left to be free and healthy and whole. But he did not leave the fight, he never left the hope. He left them behind in us to carry on. When I stood back from all we had gone through and the pain we were steeping in....I couldn't believe how incredibly blessed we were by all the individuals who picked up various fibers to spin and weave a strong rope to throw to us in our darkest moment. For Avery. And that was what motivated me to say "this is something everyone needs....this needs to be standard."
I also remembered how I had no idea, no matter all the searching I had done, what to expect, who to turn to for answers beyond our own medical team, and how powerless I felt....and after coming through, I realized, it didn't have to be that way for anyone else...that someone needed to collect the info and put it in one place...and granting the numbers...many many people could benefit. That people could come together for community, for fight for a voice and to fight to save and prevent more angels being handed wings.
We....those left behind, those here, we could be angels here to someone else.
So the 30th, while I surrendered my son in this life....I never gave up on what he stood for, and what his life meant and stood for. What the power of 107 days could do to a family, an institution, a community and hundreds of people who didn't know each other. Just one tiny little life, a statistic in a "normal world" and the brunt end of that statistic. Avery didn't have to end as a patient, a number and a tragic margin, he didn't have to be something people avoided in conversation, that pictures didn't need to come down and memories forgotten...because he truly was beautiful, amazing and in his short time here gave us joy and love beyond what we had known before. We could carry forth all of that, and share all of that and perpetuate all of that for the rest of the world and the rest of our lives.
Yes the 30th is hard in the sacrifice it marks for our family. But it's not hard in the love and hope he was, that we're now trying to share with everyone else. The 30th is about remembering, but it's about remembering why...and that is hope. In the losses, in the tragedy of the continuation of this disease, in that battle that babies have endured and children and adults continue to go through, there is still hope, and there is now an incredible community weaving a big rope to hold us all together.
The 30th is about surrendering to hope.
And hope is my business. That's why I do what I do. I want to be part of the best thing I learned from my son....and that is hope.
Saturday, July 14, 2012
July 14th 2012
Today is July the 14th. It's the last day I saw my the deep blue eyes of my Avery boy.
Today was the day where they were finally going to figure out why things weren't getting from point A to B. We had been in the NICU since April, and with only a replogal line and a PCCC line even the treatment team was getting tired of us living as a family in the NCCC at UNC.
Avery was around 13 pounds of serenity. He was "the best baby in the NICU." Never needed much, just push the TPN line when it beeped, and his mobile when he was up and he would just entertain himself. I remember walking in one day with his head caught between railings and he was just staring at his buddies going around and around gurgling like "Well...if I cry about my tummy no one can do much for that so what's the use bothering with my head?" He didn't "cry" he would putter...he would turn up his little lip and just "ehhh....ehh...." and if nothing changed...he'd go to sleep. I have one horrible memory of them putting him on the board with his arms strapped over his head while they did the barium XRays. He was screaming...and I couldn't do anything. The nurse came and stood by me while the doctor was rotating him and moving the tube up and down his throat to get more barium here and there..."It doesn't hurt him Ms. Hall." I turned to her and said "Let's strap you to a board with your arms over your head and a tube down your throat and then you can tell me it doesn't hurt." Her eyes welled up too.
We would hold him and he would spend his moments staring above our heads and all around. We would make all these faces infront of him...and he would calmly look at us like "really mom? You were reading the Odyssey to me when I was in your tummy....I get out and you want to talk about poop and make baby voices? Ok...whatever makes you happy." We would just laugh and say "O Avery, are you looking at the angels...." I didn't know....I had no idea.
You often wonder why in the moment, why things are particularly so strange in the moment..."Why is he not bothered and why am I sobbing?" Avery was that kid....I watched them place a central line after one fell out (yet again) and he was just watching around him like it was an everyday thing. They would draw labs from his toes and heels....and nothing. Not a peep...he wouldn't even draw back his foot. Just chomp down on a paci and stare up at his mobile. And I would just...pause...."you're so much stronger than your mommy, Avery boy." Angels had him then....they had him always.
He never belonged to me. He came for but a while to shake my whole world and change it. I don't look for reasons any more....I hope they're bigger than anything I could understand here. I've always said God has a lot of explaining to do...and He does and He will. There were early signs that he was on "loan" and had to go home....nothing in his health....but in who he was.
July 14th we got to the hospital early early. They had said they wanted to take him back right away....it would be an exploratory GI surgery, and Dr. Helmrath was hesitant to do it because that type of surgery is dangerous....but they had to figure out what was going on. He was delighted to see his parents so early, babbling and bubbling at us, grinning and kicking. We held him until they loaded up his "big boy" bed to take to the OR. We held him in the OR waiting room too until the green-clothed Anastisologist team and Ped Surgeons came back to say "hi" to him and wheeled him away. We watched him go until we couldn't any more and went upstairs to wait. About 4 hours later we got word he was coming up and Dr. Helmrath met us before Avery did. He was beside himself...it had gone so well! They had found the dead spot making the tummy difficulty, cut it out and given him an ostomy, placed a central line for home TPN and a GTube. Around a week before he saw our boy going home....3 days recovery in the NICU, transfer up to the 7th floor to meet the GI doctors then home for home care. It had gone really well. While he was talking they wheeled him into his spot in Pod C in an incubated open bed...following with is crib. As he wheeled by me I could see him struggling against the anastetic, he was sheet white and his ostomy site was bleeding...a lot. Something wasn't right. Dr. Helmrath saw my face "Meghan, he's OK, that ostomy site will bleed for a bit because of how vascular it is." "Hmm....something doesn't feel right..." "Well his stats are low, he just came through an intensive surgery, give him some time." Didn't quell my heart. I looked at Jared and he was thinking the same thing.
We had plans to go to the movies that night with Jared's sister....to get out of the NICU and refocus. But I looked at Jared and said as we scanned the screens and watched Avery struggle to keep his blood pressure up and his stats level and normal "I don't think so." I turned to his primary nurse and said "can you up his pain meds? He isn't comfortable." She looked at me like I had said I was going to birth a cow and a duck, because after his initial surgery and how addicted to the pain meds he got and what a horrible first 4 days he had coming off of them I had asked them to keep him comfortable from then on but not out of his mind and I was very much on top of his pain med regiment following. So me asking to up them was surprising to them. I just didn't want to see those eyes flickering open like that...I could see the hurt. Something wasn't right.
And it wasn't. Those flickers of blue were the last time I saw him open his eyes. That night things went from bad to worse, and for the next 9 days we didn't leave the floor. They set us up in one of the sleep rooms and we went back and forth, brush teeth, check Avery, eat, check Avery, sleep for an hour, check Avery. He had 3 emergency bedside surgeries, coded twice and we spent the days watching limited cable, going to his bedside, I would clean his dressings, we would rub the lubricant into his eyes, and I would read him stories and tell him all about what we would do when he got home. He had 2 nurses round the clock for about 5 days, and a resident dedicated to only him. His crib stayed outside the pod just waiting for him with a handmade sign that said "Baby Avery" on it. But they couldn't move him out of the open incubated bed, even though he was almost too big for it. Finally he started to level out. Stats were being maintained at reasonable levels, they took the oscillator away (a big vent that would blow a constant stream of are into his lungs to keep them open and full so his swollen belly wouldn't push his lungs up into his shoulders, then shoot the oxygen down into his lungs.) And I went back to work very little for about 3 days. They were going to start weening him off the comatose agent and bringing him back around. I was so excited to see those blue eyes again.
But something wasn't right. Sophia, one of his doctors called me at work and said "Meghan, he's off the meds and not responding...we're going to take him down for a CAT and EEG." Jared called me and said "Don't worry mama, I'm with him, he's fine...this is just routine." But my heart said it wasn't.
They wouldn't tell us results right away so Jared came home and we made plans to go back that night. It was July 27th. We walked in that evening and the resident was on. She looked at us like she was being asked to shoot her puppy. I knew it wasn't good. She said...."Well, the results show no brain activity." I crumpled to the floor. Jared was in disbelief.
July 14th was the last day I saw my little boy's eyes flicker open on their own. Those moments before he went into the OR, and the moments he came up. The last time I saw his blue eyes.
Avery, I don't know when this month will get any easier, when I won't watch dates pass and remember what I was doing, what was happening....I just don't know.
I do know that I look around at the world you left me and while I ache desperately for you....I can see why you wanted to come and fought to stay for just a little bit. I grant all my courage, my fortitude and my hope in you and what God did through you.
Today is a sunny July 14th. Your baby brother is still in my belly and I'm exhausted. Your sister is sleeping in the bed with her Daddy....just came from a dear friend's own baby boy's baptism. And while I ache and hurt more for you than any deep physical discomfort from being 9 months pregnant...I can look around and see your hand prints on everything in our world. I wonder what you would be doing if you were here....I know you're happier than any of us where you are. Someday I will know that too....and while it's sometimes difficult to not feel robbed of time with you....I know we will have an eternity to hold onto.
My blue-eyed angel boy. Bend close to me and just hold my heart and hands. I love you more than my feeble command of the English language allows me to say. Look over us all. And thank you for all that you've given us through God's plan in you.
-Mommy
Today was the day where they were finally going to figure out why things weren't getting from point A to B. We had been in the NICU since April, and with only a replogal line and a PCCC line even the treatment team was getting tired of us living as a family in the NCCC at UNC.
Avery was around 13 pounds of serenity. He was "the best baby in the NICU." Never needed much, just push the TPN line when it beeped, and his mobile when he was up and he would just entertain himself. I remember walking in one day with his head caught between railings and he was just staring at his buddies going around and around gurgling like "Well...if I cry about my tummy no one can do much for that so what's the use bothering with my head?" He didn't "cry" he would putter...he would turn up his little lip and just "ehhh....ehh...." and if nothing changed...he'd go to sleep. I have one horrible memory of them putting him on the board with his arms strapped over his head while they did the barium XRays. He was screaming...and I couldn't do anything. The nurse came and stood by me while the doctor was rotating him and moving the tube up and down his throat to get more barium here and there..."It doesn't hurt him Ms. Hall." I turned to her and said "Let's strap you to a board with your arms over your head and a tube down your throat and then you can tell me it doesn't hurt." Her eyes welled up too.
We would hold him and he would spend his moments staring above our heads and all around. We would make all these faces infront of him...and he would calmly look at us like "really mom? You were reading the Odyssey to me when I was in your tummy....I get out and you want to talk about poop and make baby voices? Ok...whatever makes you happy." We would just laugh and say "O Avery, are you looking at the angels...." I didn't know....I had no idea.
You often wonder why in the moment, why things are particularly so strange in the moment..."Why is he not bothered and why am I sobbing?" Avery was that kid....I watched them place a central line after one fell out (yet again) and he was just watching around him like it was an everyday thing. They would draw labs from his toes and heels....and nothing. Not a peep...he wouldn't even draw back his foot. Just chomp down on a paci and stare up at his mobile. And I would just...pause...."you're so much stronger than your mommy, Avery boy." Angels had him then....they had him always.
He never belonged to me. He came for but a while to shake my whole world and change it. I don't look for reasons any more....I hope they're bigger than anything I could understand here. I've always said God has a lot of explaining to do...and He does and He will. There were early signs that he was on "loan" and had to go home....nothing in his health....but in who he was.
July 14th we got to the hospital early early. They had said they wanted to take him back right away....it would be an exploratory GI surgery, and Dr. Helmrath was hesitant to do it because that type of surgery is dangerous....but they had to figure out what was going on. He was delighted to see his parents so early, babbling and bubbling at us, grinning and kicking. We held him until they loaded up his "big boy" bed to take to the OR. We held him in the OR waiting room too until the green-clothed Anastisologist team and Ped Surgeons came back to say "hi" to him and wheeled him away. We watched him go until we couldn't any more and went upstairs to wait. About 4 hours later we got word he was coming up and Dr. Helmrath met us before Avery did. He was beside himself...it had gone so well! They had found the dead spot making the tummy difficulty, cut it out and given him an ostomy, placed a central line for home TPN and a GTube. Around a week before he saw our boy going home....3 days recovery in the NICU, transfer up to the 7th floor to meet the GI doctors then home for home care. It had gone really well. While he was talking they wheeled him into his spot in Pod C in an incubated open bed...following with is crib. As he wheeled by me I could see him struggling against the anastetic, he was sheet white and his ostomy site was bleeding...a lot. Something wasn't right. Dr. Helmrath saw my face "Meghan, he's OK, that ostomy site will bleed for a bit because of how vascular it is." "Hmm....something doesn't feel right..." "Well his stats are low, he just came through an intensive surgery, give him some time." Didn't quell my heart. I looked at Jared and he was thinking the same thing.
We had plans to go to the movies that night with Jared's sister....to get out of the NICU and refocus. But I looked at Jared and said as we scanned the screens and watched Avery struggle to keep his blood pressure up and his stats level and normal "I don't think so." I turned to his primary nurse and said "can you up his pain meds? He isn't comfortable." She looked at me like I had said I was going to birth a cow and a duck, because after his initial surgery and how addicted to the pain meds he got and what a horrible first 4 days he had coming off of them I had asked them to keep him comfortable from then on but not out of his mind and I was very much on top of his pain med regiment following. So me asking to up them was surprising to them. I just didn't want to see those eyes flickering open like that...I could see the hurt. Something wasn't right.
And it wasn't. Those flickers of blue were the last time I saw him open his eyes. That night things went from bad to worse, and for the next 9 days we didn't leave the floor. They set us up in one of the sleep rooms and we went back and forth, brush teeth, check Avery, eat, check Avery, sleep for an hour, check Avery. He had 3 emergency bedside surgeries, coded twice and we spent the days watching limited cable, going to his bedside, I would clean his dressings, we would rub the lubricant into his eyes, and I would read him stories and tell him all about what we would do when he got home. He had 2 nurses round the clock for about 5 days, and a resident dedicated to only him. His crib stayed outside the pod just waiting for him with a handmade sign that said "Baby Avery" on it. But they couldn't move him out of the open incubated bed, even though he was almost too big for it. Finally he started to level out. Stats were being maintained at reasonable levels, they took the oscillator away (a big vent that would blow a constant stream of are into his lungs to keep them open and full so his swollen belly wouldn't push his lungs up into his shoulders, then shoot the oxygen down into his lungs.) And I went back to work very little for about 3 days. They were going to start weening him off the comatose agent and bringing him back around. I was so excited to see those blue eyes again.
But something wasn't right. Sophia, one of his doctors called me at work and said "Meghan, he's off the meds and not responding...we're going to take him down for a CAT and EEG." Jared called me and said "Don't worry mama, I'm with him, he's fine...this is just routine." But my heart said it wasn't.
They wouldn't tell us results right away so Jared came home and we made plans to go back that night. It was July 27th. We walked in that evening and the resident was on. She looked at us like she was being asked to shoot her puppy. I knew it wasn't good. She said...."Well, the results show no brain activity." I crumpled to the floor. Jared was in disbelief.
July 14th was the last day I saw my little boy's eyes flicker open on their own. Those moments before he went into the OR, and the moments he came up. The last time I saw his blue eyes.
Avery, I don't know when this month will get any easier, when I won't watch dates pass and remember what I was doing, what was happening....I just don't know.
I do know that I look around at the world you left me and while I ache desperately for you....I can see why you wanted to come and fought to stay for just a little bit. I grant all my courage, my fortitude and my hope in you and what God did through you.
Today is a sunny July 14th. Your baby brother is still in my belly and I'm exhausted. Your sister is sleeping in the bed with her Daddy....just came from a dear friend's own baby boy's baptism. And while I ache and hurt more for you than any deep physical discomfort from being 9 months pregnant...I can look around and see your hand prints on everything in our world. I wonder what you would be doing if you were here....I know you're happier than any of us where you are. Someday I will know that too....and while it's sometimes difficult to not feel robbed of time with you....I know we will have an eternity to hold onto.
My blue-eyed angel boy. Bend close to me and just hold my heart and hands. I love you more than my feeble command of the English language allows me to say. Look over us all. And thank you for all that you've given us through God's plan in you.
-Mommy
Thursday, October 20, 2011
So this post comes after some study of psychotherapies and a proposed scenario by our learning team in my class. The scenario had to do with a marriage and our discussion followed.
Let's talk about Marriage in today's world. Unfortunately even though the American politician and voter claims to "value" marriage the statistic and mentality for marriage is "if it doesn't work out then there's divorce" clearly reflected in our very high divorce rate (I believe the last statistic was around 50%?) **Let me clarify** I am not trying to make a political statement here on rights, gay or otherwise, I'm speaking about defining what; I'm presenting some statistics to be thought of when approaching the issue of "marriage" and relationships in the American context.
Over time, the inclusion of divorce as an "OK" route by many religions has allowed for truly dysfunctional relationships to retire for the benefit of the couple. However, the strange phenomenon is that now culturally accepted, it also became an *aspect OF marriage.* Meaning, a while ago the fear of cultural ostrization was an added deterrent from entering into a divorce, in combination with a religious duty. Now both are gone and it has become an option and an aspect *of* marriage.
I'm not placing blame; I'm merely stating we need to rehash our definition and understanding of the modern culture and mentality surrounding marriage and even relationships.
Additionally there are the technological advancements that make "instant gratification" a click and a fingertip away. Think of the times of World War I and II and even further back where couples were separated for months on end. Trust was something corner stone, tested and true. Now there's no concept of trust. Trust is a 1-5 min delay, there's no delving into or development. It can be instantly obtained or instantly erased. 50-80 years ago, tt was a cultural fact, an aspect of relationships and cultures; it was cultivated, retained, matured and grown. There wasn't a perception of another way. Their means of communication in those times were letters that took possibly months on end to reach their object of affection. In that time the parties had to trust, imagine and know that the other person was not only truly in love, but faithful and waiting.
Consider not only our grandparents of WW II, but our parents who would be cross country at colleges in their youth. I know that mine had a long period of time where one was in Pitt and the other in Va and they had a once a week or once every other week phone call. That was it, maybe an occasional letter, where thoughts were developed. We don't have any conception of that. Can many of us go for a whole week or two without hearing from their spouse or partner?
Additionally if there is ever any issue, where at one time matters were resolved in the home or selectively shared with a tight group of a few friends, now a frustrated spouse or partner can blast issues to the viewing public of 200+, nothing is private or sacred, your identity can be publicly devalued if you upset your attentatively posting partner. Issues become a community spectical, with people weighing in, judging and possibly even influencing. A relationship involves more than 2 parties now, and more than just the immediate family, it involves all of the viewing public.
**As a side note, a person who still claims that "Facebook is personal" makes me laugh. Personal and private mean that there is a limited and small number of people who are close and intimate access to the person and their life. Most all Facebook pages have 200+ friends, nothing is personal or private when share beyond 2-3 people! That's very much a public opinion!**
Here now if a couple doesn't receive a text or phone call back within minutes we assume the worst. Our culture has changed and therefore the culture and aspects of marriage and our views and beliefs on it needs to change and also considered.
Most pivotal to this consideration is that a couple lacks the innate trust building mechanisms that thrived during those times, again because there was simply no other way. Our trust isn't always being built or gaining, its being constantly sought, proven and in constant peril. It's no wonder that men and women grow weary of each others' company, they're now constantly in communication and in beckon call. Let's say a father went on the golf course, just for those 4 hours of true time away and relaxation, his phone in his pocket could go off multiple times, for work, friends, family and otherwise. Additionally a woman who has gone out shopping with friends can get calls for reminders from the home, from work and friends. In other-words, our relationships, across the board are garnering more of our immediate attention and asserting themselves into more and more corners of our lives. Here comes stress. While a job has always been a part of an identity, it now saturates lives in ways that no one can understand. Where as Stan from 1950 could get a weekend call from his boss and if he wasn't home there wouldn't be any character traits in question, in 2011, when Stan is called on his cell phone on the weekend, immediate fault and judgment is made off is dedication to work and his abilities. So to with the modern relationship. If a member of a relationship doesn't answer the phone immediately, it may reinforce a negative view established by a prior relationship that "all men cheat" or "all women cheat" and when the explanation is rendered "I was in the bathroom" or "I was taking a bath" the natural course of thought is "That's just an excuse" instead of "I need to exercise more restraint." Consider again, if a mate called a land line even in 1980, a natural list of "alternative" places would come to mind. Now the list is much more condensed, there for the brain has less to consider viable.
Couples have also this attitude that if the partner doesn't want to spend every waking moment with the other person, that there is something wrong. Now initially in relationships going through the honeymoon phase or where one or more couples has natural or built up trust issues, it maybe more understandable. But technology plus culture have replaced "quality time" with "all the time." We have been all given speeches about the TV and gaming being problematic but we haven't really considered that while they may be problematic, they're a source of enjoyment for people. We need to figure out how to create a healthy balance and not force our 21st century families into valuing the same things as our parents, grandparents in the 1950-1970s. Times have changed and the culture has changed. We look at black and white photos and sigh, when in essence we just need to understand that we can do the same, just differently with what we have now. I don't see any difference in picture of a father reading the paper, a mom darning socks, a brother playing with a truck and a girl playing tea in one room, and then I do with a father watching sports, a mom reading a nook, a brother playing a PS3 and a daughter playing on a laptop. Both pictures do not depict families necessarily interacting, but the pictures do show the families enjoying there own entertainment in the same room.
What I'm hammering at is that the dissolve of marriages and relationships is far more an expected part of our 21st century and instead of forcing ideals that are no longer culturally stable or applicable is archaic.
There are other factors, the increase of women working dually, in the public sector and at home, the cultural norm of father's being in the home as well.
Additionally, we now have changing roles and expectations of desirable and undesirable characteristics in a partner. Expectations have changed; where a woman 50 years ago stayed at home, now she has to balance the home and the job. Where as a man 50 years ago was expected to provide the stability and consistency of the home, now the woman is suppose to bring something other than herself to the table and provide some as well.
So here you have it, the issue of developing trust, quality time apart and together in the 21st century, a healthy dialogue, and a re-evaluation of roles and functions. The modern day marriage is not the same at all of the one from 80 years ago.
Essentially the trust factor, the cultural implications of working and living in a 21st century world, the movement and changes in our religious sects, there's not a whole lot of factors supporting the "older" definition and constructs of marriage. While I believe that it is still possible to be married once for a long time, I think we have to set parameters and a new understanding both as therapists and as members of this society that we have to change the way we understand marriage and divorce.
Let's talk about Marriage in today's world. Unfortunately even though the American politician and voter claims to "value" marriage the statistic and mentality for marriage is "if it doesn't work out then there's divorce" clearly reflected in our very high divorce rate (I believe the last statistic was around 50%?) **Let me clarify** I am not trying to make a political statement here on rights, gay or otherwise, I'm speaking about defining what; I'm presenting some statistics to be thought of when approaching the issue of "marriage" and relationships in the American context.
Over time, the inclusion of divorce as an "OK" route by many religions has allowed for truly dysfunctional relationships to retire for the benefit of the couple. However, the strange phenomenon is that now culturally accepted, it also became an *aspect OF marriage.* Meaning, a while ago the fear of cultural ostrization was an added deterrent from entering into a divorce, in combination with a religious duty. Now both are gone and it has become an option and an aspect *of* marriage.
I'm not placing blame; I'm merely stating we need to rehash our definition and understanding of the modern culture and mentality surrounding marriage and even relationships.
Additionally there are the technological advancements that make "instant gratification" a click and a fingertip away. Think of the times of World War I and II and even further back where couples were separated for months on end. Trust was something corner stone, tested and true. Now there's no concept of trust. Trust is a 1-5 min delay, there's no delving into or development. It can be instantly obtained or instantly erased. 50-80 years ago, tt was a cultural fact, an aspect of relationships and cultures; it was cultivated, retained, matured and grown. There wasn't a perception of another way. Their means of communication in those times were letters that took possibly months on end to reach their object of affection. In that time the parties had to trust, imagine and know that the other person was not only truly in love, but faithful and waiting.
Consider not only our grandparents of WW II, but our parents who would be cross country at colleges in their youth. I know that mine had a long period of time where one was in Pitt and the other in Va and they had a once a week or once every other week phone call. That was it, maybe an occasional letter, where thoughts were developed. We don't have any conception of that. Can many of us go for a whole week or two without hearing from their spouse or partner?
Additionally if there is ever any issue, where at one time matters were resolved in the home or selectively shared with a tight group of a few friends, now a frustrated spouse or partner can blast issues to the viewing public of 200+, nothing is private or sacred, your identity can be publicly devalued if you upset your attentatively posting partner. Issues become a community spectical, with people weighing in, judging and possibly even influencing. A relationship involves more than 2 parties now, and more than just the immediate family, it involves all of the viewing public.
**As a side note, a person who still claims that "Facebook is personal" makes me laugh. Personal and private mean that there is a limited and small number of people who are close and intimate access to the person and their life. Most all Facebook pages have 200+ friends, nothing is personal or private when share beyond 2-3 people! That's very much a public opinion!**
Here now if a couple doesn't receive a text or phone call back within minutes we assume the worst. Our culture has changed and therefore the culture and aspects of marriage and our views and beliefs on it needs to change and also considered.
Most pivotal to this consideration is that a couple lacks the innate trust building mechanisms that thrived during those times, again because there was simply no other way. Our trust isn't always being built or gaining, its being constantly sought, proven and in constant peril. It's no wonder that men and women grow weary of each others' company, they're now constantly in communication and in beckon call. Let's say a father went on the golf course, just for those 4 hours of true time away and relaxation, his phone in his pocket could go off multiple times, for work, friends, family and otherwise. Additionally a woman who has gone out shopping with friends can get calls for reminders from the home, from work and friends. In other-words, our relationships, across the board are garnering more of our immediate attention and asserting themselves into more and more corners of our lives. Here comes stress. While a job has always been a part of an identity, it now saturates lives in ways that no one can understand. Where as Stan from 1950 could get a weekend call from his boss and if he wasn't home there wouldn't be any character traits in question, in 2011, when Stan is called on his cell phone on the weekend, immediate fault and judgment is made off is dedication to work and his abilities. So to with the modern relationship. If a member of a relationship doesn't answer the phone immediately, it may reinforce a negative view established by a prior relationship that "all men cheat" or "all women cheat" and when the explanation is rendered "I was in the bathroom" or "I was taking a bath" the natural course of thought is "That's just an excuse" instead of "I need to exercise more restraint." Consider again, if a mate called a land line even in 1980, a natural list of "alternative" places would come to mind. Now the list is much more condensed, there for the brain has less to consider viable.
Couples have also this attitude that if the partner doesn't want to spend every waking moment with the other person, that there is something wrong. Now initially in relationships going through the honeymoon phase or where one or more couples has natural or built up trust issues, it maybe more understandable. But technology plus culture have replaced "quality time" with "all the time." We have been all given speeches about the TV and gaming being problematic but we haven't really considered that while they may be problematic, they're a source of enjoyment for people. We need to figure out how to create a healthy balance and not force our 21st century families into valuing the same things as our parents, grandparents in the 1950-1970s. Times have changed and the culture has changed. We look at black and white photos and sigh, when in essence we just need to understand that we can do the same, just differently with what we have now. I don't see any difference in picture of a father reading the paper, a mom darning socks, a brother playing with a truck and a girl playing tea in one room, and then I do with a father watching sports, a mom reading a nook, a brother playing a PS3 and a daughter playing on a laptop. Both pictures do not depict families necessarily interacting, but the pictures do show the families enjoying there own entertainment in the same room.
What I'm hammering at is that the dissolve of marriages and relationships is far more an expected part of our 21st century and instead of forcing ideals that are no longer culturally stable or applicable is archaic.
There are other factors, the increase of women working dually, in the public sector and at home, the cultural norm of father's being in the home as well.
Additionally, we now have changing roles and expectations of desirable and undesirable characteristics in a partner. Expectations have changed; where a woman 50 years ago stayed at home, now she has to balance the home and the job. Where as a man 50 years ago was expected to provide the stability and consistency of the home, now the woman is suppose to bring something other than herself to the table and provide some as well.
So here you have it, the issue of developing trust, quality time apart and together in the 21st century, a healthy dialogue, and a re-evaluation of roles and functions. The modern day marriage is not the same at all of the one from 80 years ago.
Essentially the trust factor, the cultural implications of working and living in a 21st century world, the movement and changes in our religious sects, there's not a whole lot of factors supporting the "older" definition and constructs of marriage. While I believe that it is still possible to be married once for a long time, I think we have to set parameters and a new understanding both as therapists and as members of this society that we have to change the way we understand marriage and divorce.
It's been a while....
I suppose I need to comment on a few things about my absence.
One, I'm a full time, and over full time working mom. I drive a special needs bus in the morning and then I teach a full day in a special needs classroom.
I'm also working on my MS/PhD in Clinical Psychology.
I also run an International NPO.
I also have a 10 month old daughter.
So, sometimes, things like blog writing get a little offset. Because I'm busy being alive.
Needless to say I've had a year of news and a year of firsts and a year of growing to reflect upon. I feel like adulthood is beginning to sink in...yes at 26, but either with the onslaught of motherhood or the settling in of time, things are beginning to take on some wisdom. Not too much because I have to maintain some immaturity to survive my day to day.
At any rate there are things that I know to be absolute truths in my life that it's time to reflect upon. I'm not expecting many people to read and have their immediate lives changed but it may at least contribute slightly to the way people know and feel about me. Either your opinions will change or they will stay the same.
I'm going to start blogging about Facebook and relationships in the 21st century, motherhood, loss, Christianity, the US and Christianity and coping. A lot of what I say maybe offensive, but it's not intended to to tell you you're a horrible person for living your life the way you see fit, which I totally support, I'm just imparting my observations and what I hold to be valuable and true in my life. If you asked me my opinion on how you conduct your day to day then I would respond in this manner. Otherwise, as long as it's happening on your lawn and not mine, I have no beef.
Now some of you may feel like I'm talking about you, and if you know me, you know that if I have an issue, a real issue, I will call your attention to it. If I haven't already done so then there's no reason to self reflect. However, if that happens, you need to explore your own sources of that guilt, meaning, if you feel like I'm talking about you and I haven't called you out, then maybe you have your own issues to resolve with it yourself. But please don't feel like I'm being passive aggressive in what I post. I do not believe in that aspect of the internet, blogging and facebook at all. And you'll find that out in my commentary about it.
Be warned be ready and as always, if something appears marginally humorous it is. So laugh.
One, I'm a full time, and over full time working mom. I drive a special needs bus in the morning and then I teach a full day in a special needs classroom.
I'm also working on my MS/PhD in Clinical Psychology.
I also run an International NPO.
I also have a 10 month old daughter.
So, sometimes, things like blog writing get a little offset. Because I'm busy being alive.
Needless to say I've had a year of news and a year of firsts and a year of growing to reflect upon. I feel like adulthood is beginning to sink in...yes at 26, but either with the onslaught of motherhood or the settling in of time, things are beginning to take on some wisdom. Not too much because I have to maintain some immaturity to survive my day to day.
At any rate there are things that I know to be absolute truths in my life that it's time to reflect upon. I'm not expecting many people to read and have their immediate lives changed but it may at least contribute slightly to the way people know and feel about me. Either your opinions will change or they will stay the same.
I'm going to start blogging about Facebook and relationships in the 21st century, motherhood, loss, Christianity, the US and Christianity and coping. A lot of what I say maybe offensive, but it's not intended to to tell you you're a horrible person for living your life the way you see fit, which I totally support, I'm just imparting my observations and what I hold to be valuable and true in my life. If you asked me my opinion on how you conduct your day to day then I would respond in this manner. Otherwise, as long as it's happening on your lawn and not mine, I have no beef.
Now some of you may feel like I'm talking about you, and if you know me, you know that if I have an issue, a real issue, I will call your attention to it. If I haven't already done so then there's no reason to self reflect. However, if that happens, you need to explore your own sources of that guilt, meaning, if you feel like I'm talking about you and I haven't called you out, then maybe you have your own issues to resolve with it yourself. But please don't feel like I'm being passive aggressive in what I post. I do not believe in that aspect of the internet, blogging and facebook at all. And you'll find that out in my commentary about it.
Be warned be ready and as always, if something appears marginally humorous it is. So laugh.
Monday, May 2, 2011
Avery's speaks
I'm sure people I've never meat think I'm some strong, well formed individual with a firm handshake, a soft spoken, well thought out word, a sturdy frame and a commanding presence. I don't suppose when I whirlwind into a room I'm anything anyone expects. I don't really know who I would imagine myself to be if I didn't know me...I do suppose I would be more to-the-point and professional then I am...
Never the less, here I am. A mess. I talk too much, and too loud, and laugh too often and in the wrong places. I'm a nerd and passionate about things in and around my life. I think quite often I can relate to most things...I probably can't.
I'm nothing special then a energetic whirlwind. A mess of pieces of a little bit of everything. I wouldn't be a beautiful romantic stain glass mosaic depicting some uplifting moment in religious history or a beautiful bird or flower, I'd be some colorful jumble and collection of glass and polished stones mortared together in some exotic pattern.
I reckon I should have more grace and poise then I do. My mother sent me to etiquette classes and both my parents were very guarded in speech and picked their words, presence and clothes very particularly. For some reason, I didn't learn to keep my experiences to myself, check my speech or water myself down. I live my life outwardly, knowing my experiences as lonely and pointless if not to bring or progress humanities position further towards a better world.
I know I possibly disappoint those whom I speak to online or through text or via messaging all the time. I don't get to organize my thoughts the way I do when I write, subtract some of the florally metaphoric crap and leave something raw but slightly polished for those to respond to. I just am.
I don't really know how else to be. I met the love of my life this way, my excuse is God made me this way and He loves me...so why change? He also has allowed me 2 beautiful children....I guess I'm made of the right stuff....?
I look though at my kids, and think, how did I get to be part of this life? My son's life continues to amaze me, wear me out, but truly amaze me.
I'm sure everyone thinks I get up with pep in my step, a smile and a Santa like to-do list and a mug of Dunkin coffee and some sort of plan to my day. O, and my makeup is done and my outfit is coordinated.
In all honest, waking up in the morning is no fun. I think I purposely stay up late so I can put off the bittersweet of the alarm. I stumble often into things I know are there, set off half a dozen baby toys and buzzers on my way to the shower and don't really have much to say until around 2 hours after I've gotten up.
Around 1pm I'm struggling for reasons to stay focused on anything...often I'm overwhelmed because my phone has rung probably 25 times and my inbox has 22 messages...my OCD is not happy with life at all. If I get on a roll I feel rather accomplished and get amped up. If for some reason I'm off that day....I look at the little inbox warning and sigh "What did I get myself into?" crosses my mind.
Yup, pretty human. Sometimes remembering the hardest times in Avery's life is hard for me. I know...surprise? And I'm not amazing, and I know it...I'm a "I'm happy I got blush on my face" type girl and having a full time job, a baby, a foundation and school gets overwhelming.
There's a reason we have 3 different 'project managers' and assistants....I would be lost, the Avery's Angels email monster would eat me up.
And Avery hasn't gotten any better. He won't, he's my son and I should have a 2 year old bounding all over my house and wanting to wrestle with his sister and not wanting her to drool on his toys...I should have 2 baths to get done and blue mixed in with the pink laundry.
So I need a pep talk quite often. The daily messages about "I'm so happy I found you all" are nice and a good reminder to "keep on" but every now and then people find/do things that are truly amazing for me.
Like people who want to do fundraisers around the world, work with/for me, send gifts, small or large, hand written notes, speak on us, send me stories about butterflies they've seen or how Avery came to wake them up or motivated them to various things....or name their babies after my son.
That he has become to everyone else what he meant to me....something to be proud of, something to aspire to...yes aspire to as his mother...I want to be more like my son. I want to be wide eyed to the world, trusting and believing in all, and ready to laugh at the little things like my mobile. I want to be able to know that crying isn't going to make it easier, that it hurts but it will eventually get better. That love is worth having no matter how short or long. And a smile is the most amazing gift you give yourself and others as often as you're able.
And he is that to others. So much so that people want to name their children after him....that people reach out from corners of the world, email us inquiries and think I'm some dame that I'm not.....
My son has put rose glasses on others...I'm slowly changing into a much more graceful mother because of him...and he's inspiring others to have their best lives.
And he speaks, he tells me everyday at 2pm to put my head down and get through. "Mama, crying isn't going to do anything, just get it done." A song pops on the radio, a rainbow catches some random object and flashes up, a butterfly spends a few hours flitting in and out of a corner of the yard or window. "Hey Mom, remember when I got my 3rd PCC line in and you freaked out and I was like 'what's your deal mom?'"
So I put my head down and muscle through, and look up intime to see a butterfly pass me by, and hear someone tell me, "Avery came today...." And Avery says "hey Mom...remember when you freaked out then and I told you "eh, no biggy..."
Not much has changed, son. Except you're changing everything.
Never the less, here I am. A mess. I talk too much, and too loud, and laugh too often and in the wrong places. I'm a nerd and passionate about things in and around my life. I think quite often I can relate to most things...I probably can't.
I'm nothing special then a energetic whirlwind. A mess of pieces of a little bit of everything. I wouldn't be a beautiful romantic stain glass mosaic depicting some uplifting moment in religious history or a beautiful bird or flower, I'd be some colorful jumble and collection of glass and polished stones mortared together in some exotic pattern.
I reckon I should have more grace and poise then I do. My mother sent me to etiquette classes and both my parents were very guarded in speech and picked their words, presence and clothes very particularly. For some reason, I didn't learn to keep my experiences to myself, check my speech or water myself down. I live my life outwardly, knowing my experiences as lonely and pointless if not to bring or progress humanities position further towards a better world.
I know I possibly disappoint those whom I speak to online or through text or via messaging all the time. I don't get to organize my thoughts the way I do when I write, subtract some of the florally metaphoric crap and leave something raw but slightly polished for those to respond to. I just am.
I don't really know how else to be. I met the love of my life this way, my excuse is God made me this way and He loves me...so why change? He also has allowed me 2 beautiful children....I guess I'm made of the right stuff....?
I look though at my kids, and think, how did I get to be part of this life? My son's life continues to amaze me, wear me out, but truly amaze me.
I'm sure everyone thinks I get up with pep in my step, a smile and a Santa like to-do list and a mug of Dunkin coffee and some sort of plan to my day. O, and my makeup is done and my outfit is coordinated.
In all honest, waking up in the morning is no fun. I think I purposely stay up late so I can put off the bittersweet of the alarm. I stumble often into things I know are there, set off half a dozen baby toys and buzzers on my way to the shower and don't really have much to say until around 2 hours after I've gotten up.
Around 1pm I'm struggling for reasons to stay focused on anything...often I'm overwhelmed because my phone has rung probably 25 times and my inbox has 22 messages...my OCD is not happy with life at all. If I get on a roll I feel rather accomplished and get amped up. If for some reason I'm off that day....I look at the little inbox warning and sigh "What did I get myself into?" crosses my mind.
Yup, pretty human. Sometimes remembering the hardest times in Avery's life is hard for me. I know...surprise? And I'm not amazing, and I know it...I'm a "I'm happy I got blush on my face" type girl and having a full time job, a baby, a foundation and school gets overwhelming.
There's a reason we have 3 different 'project managers' and assistants....I would be lost, the Avery's Angels email monster would eat me up.
And Avery hasn't gotten any better. He won't, he's my son and I should have a 2 year old bounding all over my house and wanting to wrestle with his sister and not wanting her to drool on his toys...I should have 2 baths to get done and blue mixed in with the pink laundry.
So I need a pep talk quite often. The daily messages about "I'm so happy I found you all" are nice and a good reminder to "keep on" but every now and then people find/do things that are truly amazing for me.
Like people who want to do fundraisers around the world, work with/for me, send gifts, small or large, hand written notes, speak on us, send me stories about butterflies they've seen or how Avery came to wake them up or motivated them to various things....or name their babies after my son.
That he has become to everyone else what he meant to me....something to be proud of, something to aspire to...yes aspire to as his mother...I want to be more like my son. I want to be wide eyed to the world, trusting and believing in all, and ready to laugh at the little things like my mobile. I want to be able to know that crying isn't going to make it easier, that it hurts but it will eventually get better. That love is worth having no matter how short or long. And a smile is the most amazing gift you give yourself and others as often as you're able.
And he is that to others. So much so that people want to name their children after him....that people reach out from corners of the world, email us inquiries and think I'm some dame that I'm not.....
My son has put rose glasses on others...I'm slowly changing into a much more graceful mother because of him...and he's inspiring others to have their best lives.
And he speaks, he tells me everyday at 2pm to put my head down and get through. "Mama, crying isn't going to do anything, just get it done." A song pops on the radio, a rainbow catches some random object and flashes up, a butterfly spends a few hours flitting in and out of a corner of the yard or window. "Hey Mom, remember when I got my 3rd PCC line in and you freaked out and I was like 'what's your deal mom?'"
So I put my head down and muscle through, and look up intime to see a butterfly pass me by, and hear someone tell me, "Avery came today...." And Avery says "hey Mom...remember when you freaked out then and I told you "eh, no biggy..."
Not much has changed, son. Except you're changing everything.
Wednesday, December 15, 2010
Amazing Grace
Avery's baby Sister was born on Dec 10th 2010.
She was one month and a day early....due Jan 11th 2011. But here she is and how amazing she is.
My fears going in were obvious 1) a healthy baby. Always and forever, a healthy baby. Each passing week would mark off one paranoia and add a new one....early and late miscarriages, cord and fluid fears, chromosome fears, size and growth concerns, early labor, still birth....you name it. It was all weighing on me like a stone; one growing in my belly and the other growing on my heart and mind.
You're both scared to grow close to the life inside of you and also guilty of feeling scared to grow close to the life inside of you. You're worried you hope too soon, or you enjoy too late, you love too little or feel too much with so little guaranteed.
You feel the pressure of producing a healthy baby, all eyes on you, because all eyes fell on you when your prior had such heartbreaking issues "What did you do?" and you hear and feel in your heart "How did I fail my baby."
She kicked and I would cry, scared of her, scared for her, then wishing it was Avery, and then feeling like an awful mother for feeling all those things.
At month 3 I put in my mind that no many how many times I ran to the doctors to make them let me hear her heartbeat, there would be nothing I could do if God put my stars in alignment for something other then what I saw to be best; I couldn't stop life from happening the way that God intended it to. I stuck to it and surrendered. It didn't so much ease the fears out of my heart, or off my mind, it did take my responsibility to those worries and fears away.
And then I was worried that she would make people forget Avery. And I threw Avery projects up everywhere. I felt guilty like I was choosing or spending more time with one child and not enough on the other. Would people remember Avery? Was I spending too much time on Avery or too much on her?
She's my daughter, she has my heart as much as my son does. She's here because of my son. And they both know and will know that I love them very much. One here and one in heaven and there's nothing more then being a mommy and worrying about loving them that I need to do to prove I love them both.
And Avery can't be forgotten, because his life lives on here in how we have all changed our lives and live our lives because of him. All the movement he has stirred and put into motion in his life here and continues to do so, no, he won't ever be forgotten. His miss doesn't ever go away. I cradle my little girl and still miss my angel boy.
But my life is because of him and my life is because of her.
Did I truly enjoy the pregnancy, did I feel a glow and a precious grasp on my body? No, I was petrified of my body. Did I love the hope of my baby girl any less, no, because no matter how much I tried to distance my heart from what was happening, she was, like all babies are, alive in my heart and my life from the moment I knew she was on her way.
Doctors would ask me "so do you feel more comfortable now?" No, no I don't. I hear "normal" and I hear "OK" but I don't understand or believe you. I've heard that before. I have yet to see it.
I knew I was pregnant, but sometimes it would take me off guard. It felt like a dream, a complicated one. Notice I didn't say nightmare....it was an enigma, but never a mirage or a night terror.
I would do all I could to get myself excited; little projects to decorate her room and bathroom, trying to get excited about her parties and obsess about her registry and stuff. I refused to wash any of her new clothes until after she was born, and I felt guilty for that.
Then she came early; and those dreaded words "NICU" "monitor" "too much/too little" came up again. And I was furious and scared. Furious at my body for giving out again, scared to have my hopes of a "normal" delivery and experience yanked away from me.
I just wanted to hold her after she was born. I kept saying that over and over. I just want to hold her, we just want a "wireless baby." We want to take her home.
And then she came, 2 pushes and she screamed and I cried and everytime she screamed I cried. I could have jumped up to Heaven with all the love that flooded my heart and all the hope that rained into my spirit with every cry, every furious motion of her wee hands and feet. It grasped my body and pulled the breathe out of me.
And she didn't go to the NICU and she didn't need to be monitored. She stayed with us in our room until we went home.
Did I sleep? No, I was afraid she would gag and I wouldn't hear her. I still will peer at her while she sleeps and touch her head or body to make sure. Do I want to sleep? No, I don't want to blink and I want to the world to see her, to tell me how beautiful she is so that it all feels more like my life and less like a dream.
Then the word "jaundice" came into our worlds. And the gastroschisis mommy in me laughs at me "really? that's what you're worried about?" We've been through so much worse. But the word "Hospital" came with that "jaundice" word (which I thought ridiculous and let people know) and I felt disheartened and frightened again. They came with her glow blanket and when Jared showed the Home Care lady to the door and my child had a long tube coming from her blanket I lost it....there was that damn wire again, tethering my child to machines or medicine because my body failed her. Something was wrong with her and it was my fault. And now her perfect heels are going to have to be poked and she's going to have to go through all these not so nice baby things and it's just not fair. Why can't she just sleep, eat, poop, pee and worry us about how tiny she is and how big her clothes are.
Because that's life. And if it wasn't jaundice and a glowie blanket, it would be something else.
And this is perfect. It's perfect and wonderful; like the angels in the Bible, frightening and fearsome, a display that makes all who have caught glimpse cower and be afraid. But yet they bring great hope, inspiration and the reflect the power, mercy and deep love of the Father.
Such is life; frightening and fearsome, yet perfect and full of hope and love of the Father.
I want to wake up in this good dream and grab on so that it feels real. And then I don't because it all feels so deliciously wonderful. The exhaustion, the mistakes and the learning curb, the stress, the confusion.
The ability to roll over and kiss her wee self where ever and when ever I want to. All the little things that I never got to do but can do with so much passion and so present and so amazed and so gifted now, how every breathe, every motion is a treasure. How each experience is like Christmas. How she continues to take my breathe away.
Things were like this with Avery, where your heart beats stronger with each bat of the eyes, each coo, each cry and each motion, and now it's even more precious because it's new again, and at home.
Home, which suddenly feels full and fulfilled. It feels like home. The nails, the carpet, the molding, it all comes together into a sacred place to try and contain the beating hearts and elated spirits of the residence inside.
How was life/pregnancy/second chance after gastroschisis and loss? It was amazing. A trip I strongly recommend. Was it always beautiful? no it wasn't. But it was well fought, well lived and well worth the battle. Will I do it again? I hope so. Will anything be different...
probably...but then again, everything always is.
So she's here, my amazing daughter; Breanna Grace Rauen. Breanna means "strength, noble." My Strong Grace is here. Her older brother is here too. And life...life continues to amaze, frighten and inspire me. And I'm grateful for each breathe exactly as it is.
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