A Promise to My Son ..
I will talk about and share my son,
to honor him and his memory.
Deny me that, and you will deny him life.
Deny him life, and you no longer have a place in mine.
Our son Gavin Blake Scharmer was born on 3/26/12, and passed away 12 days later on 4/7/12 due to Miller-Dieker syndrome. He changed our lives and this is where I will write and update about our lives without him, how we're picking up our pieces and where we go from here.
Wednesday, December 26, 2012
My baby should be 9 months old today, but he's not.
This should have been his first Christmas, but it wasn't.
I'm in a funk. Life isn't great right now.
I'm tired of people that claim they care when they don't.
Actions really do speak louder than words.
I'm just feeling cruddy.
I'm feeling like I've been left behind.
So has my son, by a lot of his family.
But they "care" so that's enough right?
I feel pretty alone.
A lot of things can't be undone, and I'm feeling that list getting longer and longer.
Nothing is the same. I'm not the same.
I miss my baby.
This should have been his first Christmas, but it wasn't.
I'm in a funk. Life isn't great right now.
I'm tired of people that claim they care when they don't.
Actions really do speak louder than words.
I'm just feeling cruddy.
I'm feeling like I've been left behind.
So has my son, by a lot of his family.
But they "care" so that's enough right?
I feel pretty alone.
A lot of things can't be undone, and I'm feeling that list getting longer and longer.
Nothing is the same. I'm not the same.
I miss my baby.
Sunday, December 23, 2012
It's Okay :)
I randomly copy and paste things here, mostly so I can find them again in the future if they were helpful to me. These aren't my words, but darn close!
"I spent so long feeling guilty, feeling ashamed of my sadness, and you know what? It just made me sadder. You are allowed to be sad, you are allowed to be angry, you're allowed to be depressed. We all deserve to feel our own sadness in our own time.
Something you will have heard before - you deserve to be happy. That, of course, is not always easy to hear, especially in the depths of depression - so let me add something. You deserve to be happy - but you don't have to be happy right now or all the time.
It is okay to be sad, it's okay to not be ready to be happy yet. One day you will be ready to recover - that day doesn't have to be today or even tomorrow, as long as you know and trust me that it will come.
It's okay not to be okay."
I've found that working through it is much more healing than just pretending. When you're pretending, it all comes back up again at some point and you will feel like you're starting at the beginning. All those feelings of crap need to be noticed and felt to be able to move up from them.
"I spent so long feeling guilty, feeling ashamed of my sadness, and you know what? It just made me sadder. You are allowed to be sad, you are allowed to be angry, you're allowed to be depressed. We all deserve to feel our own sadness in our own time.
Something you will have heard before - you deserve to be happy. That, of course, is not always easy to hear, especially in the depths of depression - so let me add something. You deserve to be happy - but you don't have to be happy right now or all the time.
It is okay to be sad, it's okay to not be ready to be happy yet. One day you will be ready to recover - that day doesn't have to be today or even tomorrow, as long as you know and trust me that it will come.
It's okay not to be okay."
I've found that working through it is much more healing than just pretending. When you're pretending, it all comes back up again at some point and you will feel like you're starting at the beginning. All those feelings of crap need to be noticed and felt to be able to move up from them.
Saturday, December 15, 2012
Hi.
Some of you may have noticed that this place went private and quiet for a little while.
I'm only here to talk. About myself, my boy and my life in general.
This is therapy for me.
I cannot control what people think, believe or say about me.
However, I can control what is posted here and the opinionated comments that are allowed through.
For those of you who know me personally, or have at some point in my life, you know that I've always been feisty. Sarcastic. Sassy. Bitchy, even. I've been strong-willed, bull-headed, and heavily opinionated.
For the last year almost, I've been empty.
I cry, randomly, for no good reason.
The littlest things send me totally over the edge.
My stress and emotional level is constantly at a 9.
I don't talk about things. Unless somebody else brings it up, my things are not discussed.
My systolic blood pressure for the last 9 months has been at least 150 consistently. Before, it was 118.
I am worn out. My body is tired. My mind... it's fried.
I have to set alarms and reminders on my phone to remind me when I have to work in the morning.
I'm hurting.
I'm emotionally drained.
With all of that, I had to try to save somebody else's kid who put a bullet in his head this week.
I didn't succeed.
Before you judge me, or any of the content of my brain that I post here, remember a little thing called compassion.
You may know me. You may know of the life I lead.
However.
You do not know my struggles.
You do not know what myself or my husband are living through.
You might know the loss, and if you do, I hurt for you.
But you might not know how exhausting it is to have to pull yourself together to care for someone else when you can't barely take care of yourself. I'm not better than anyone. I'm not stronger. My struggle is no greater than yours. I'm just saying - I don't walk in your shoes, you don't walk in mine.
95% of this blog experience has been so positive, and so supportive and I truly find comfort here.
5% of the time, it causes judgement and attacks and this is hopefully my last post where I have to address this crap.
If you are here to judge or twist or spread stories, just go away. Have enough decency and try to muster up enough care from your cold dead heart to just simply leave me alone. I'm trying so hard. I don't need crap from anybody. I need support. I need love. I need people who genuinely care. For those of you that provide that for me, I am so thankful for you. For those of you that don't, please use the X in the corner and do not return.
Edited to Add: My email is kscharmer5@gmail.com . For anybody who does want to read this blog and continue to follow the story of my life and my emotionally charged responses to it, please shoot me an email with your email address so that if I do have to make it private again, I can keep it open to you. Thank you, thank you, thank you for being there for me.
I'm only here to talk. About myself, my boy and my life in general.
This is therapy for me.
I cannot control what people think, believe or say about me.
However, I can control what is posted here and the opinionated comments that are allowed through.
For those of you who know me personally, or have at some point in my life, you know that I've always been feisty. Sarcastic. Sassy. Bitchy, even. I've been strong-willed, bull-headed, and heavily opinionated.
For the last year almost, I've been empty.
I cry, randomly, for no good reason.
The littlest things send me totally over the edge.
My stress and emotional level is constantly at a 9.
I don't talk about things. Unless somebody else brings it up, my things are not discussed.
My systolic blood pressure for the last 9 months has been at least 150 consistently. Before, it was 118.
I am worn out. My body is tired. My mind... it's fried.
I have to set alarms and reminders on my phone to remind me when I have to work in the morning.
I'm hurting.
I'm emotionally drained.
With all of that, I had to try to save somebody else's kid who put a bullet in his head this week.
I didn't succeed.
Before you judge me, or any of the content of my brain that I post here, remember a little thing called compassion.
You may know me. You may know of the life I lead.
However.
You do not know my struggles.
You do not know what myself or my husband are living through.
You might know the loss, and if you do, I hurt for you.
But you might not know how exhausting it is to have to pull yourself together to care for someone else when you can't barely take care of yourself. I'm not better than anyone. I'm not stronger. My struggle is no greater than yours. I'm just saying - I don't walk in your shoes, you don't walk in mine.
95% of this blog experience has been so positive, and so supportive and I truly find comfort here.
5% of the time, it causes judgement and attacks and this is hopefully my last post where I have to address this crap.
If you are here to judge or twist or spread stories, just go away. Have enough decency and try to muster up enough care from your cold dead heart to just simply leave me alone. I'm trying so hard. I don't need crap from anybody. I need support. I need love. I need people who genuinely care. For those of you that provide that for me, I am so thankful for you. For those of you that don't, please use the X in the corner and do not return.
Edited to Add: My email is kscharmer5@gmail.com . For anybody who does want to read this blog and continue to follow the story of my life and my emotionally charged responses to it, please shoot me an email with your email address so that if I do have to make it private again, I can keep it open to you. Thank you, thank you, thank you for being there for me.
Wednesday, November 28, 2012
Tuesday, November 27, 2012
Removed.
Edited to Add:
Let me know if you would like the link. I've removed it because instead of getting opinions on the topic itself, I'm getting opinions on my life, which is not exactly what I was asking for.
I appreciate that people come here to read, BUT, if you're going to read just pieces and pick out the parts that you want to spin into rumors to pass around town, please just go the hell away.
I'm not asking whether anybody believes we need money or not. It might appear that our life is great. We have new-er vehicles, just bought a house (that we don't need, or deserve apparently), we do own an older boat and have two older snowmobiles. Apparently, I should get rid of absolutely everything and live in a home that haunts me every single day so that if our attempts at growing our family fail, I will have nothing. But that's what people around here want, isn't it? For nobody to have more than them? To not offer support or kind words when somebody is hurting? It's the small town way to talk shit and break down and spread their jealousy and nastiness as far as they can. I am so sick of being bullied. I'm sick of being ripped apart by people who have so much misery that they can't stand it. I mean seriously... I don't deserve a baby because I have too nice of a car and house?
I guess what makes me the most sad, angry, and a million other emotions is the fact that Nate and I literally help people for a living. I sometimes work for 36 hours STRAIGHT. It's not out of the question for me to put in 50 hours in a single weekend. And in the 10 hours I sometimes get off between Friday night and Saturday morning, I respond to VOLUNTEER ambulance calls instead of sleeping. I see people die. I try to help them in the absolute worst moments of their lives. I go home sweaty, sometimes covered in the blood of someone else, and occasionally in tears. I beat myself to a pulp to help others. For what? To not deserve something?
Judge me on my character. Judge me on my heart. Judge me for my husband - nobody in the world can say he's not a great person. Walk a day in my shoes, and then judge me. Feel free to judge yourself first. What do you do for others? Anything? Do you do any single thing to improve the life of someone else?
I may not need the things I have, (and I may not be keeping them, how the hell would you know?), but I do know that I don't need anybody in my life who is not supportive, who constantly bullies, or pretends to care but then runs to the bar to flap their lips. I do not need you. What I do need is for you to get the hell away from me. I'm not doing this anymore. Stop commenting here or to others. We will have a discussion in person because I am sick of your misery and hate and I will not continued to be bullied by you. See you soon :)
Edited to Add:
Let me know if you would like the link. I've removed it because instead of getting opinions on the topic itself, I'm getting opinions on my life, which is not exactly what I was asking for.
I appreciate that people come here to read, BUT, if you're going to read just pieces and pick out the parts that you want to spin into rumors to pass around town, please just go the hell away.
I'm not asking whether anybody believes we need money or not. It might appear that our life is great. We have new-er vehicles, just bought a house (that we don't need, or deserve apparently), we do own an older boat and have two older snowmobiles. Apparently, I should get rid of absolutely everything and live in a home that haunts me every single day so that if our attempts at growing our family fail, I will have nothing. But that's what people around here want, isn't it? For nobody to have more than them? To not offer support or kind words when somebody is hurting? It's the small town way to talk shit and break down and spread their jealousy and nastiness as far as they can. I am so sick of being bullied. I'm sick of being ripped apart by people who have so much misery that they can't stand it. I mean seriously... I don't deserve a baby because I have too nice of a car and house?
I guess what makes me the most sad, angry, and a million other emotions is the fact that Nate and I literally help people for a living. I sometimes work for 36 hours STRAIGHT. It's not out of the question for me to put in 50 hours in a single weekend. And in the 10 hours I sometimes get off between Friday night and Saturday morning, I respond to VOLUNTEER ambulance calls instead of sleeping. I see people die. I try to help them in the absolute worst moments of their lives. I go home sweaty, sometimes covered in the blood of someone else, and occasionally in tears. I beat myself to a pulp to help others. For what? To not deserve something?
Judge me on my character. Judge me on my heart. Judge me for my husband - nobody in the world can say he's not a great person. Walk a day in my shoes, and then judge me. Feel free to judge yourself first. What do you do for others? Anything? Do you do any single thing to improve the life of someone else?
I may not need the things I have, (and I may not be keeping them, how the hell would you know?), but I do know that I don't need anybody in my life who is not supportive, who constantly bullies, or pretends to care but then runs to the bar to flap their lips. I do not need you. What I do need is for you to get the hell away from me. I'm not doing this anymore. Stop commenting here or to others. We will have a discussion in person because I am sick of your misery and hate and I will not continued to be bullied by you. See you soon :)
Tuesday, November 20, 2012
Letter to Bereaved Parents
Letter to Newly Bereaved Parents
By Sarina Baptista
"You will survive this. It might feel like you won't right now, but you will." Those were the words told to me by a lady at my son's viewing. I later learned that her 4 year old son died about 9 years prior. You never would have known it. I asked her in the following weeks, "Are you happy? I mean really happy?" She knew what I meant. You feel li
By Sarina Baptista
"You will survive this. It might feel like you won't right now, but you will." Those were the words told to me by a lady at my son's viewing. I later learned that her 4 year old son died about 9 years prior. You never would have known it. I asked her in the following weeks, "Are you happy? I mean really happy?" She knew what I meant. You feel li
ke there will never be another happy day, another smile, another joy. She said, "Yes, I am. Of course there are days when I am not, but most of the time now, I am."
I hung onto those words with all my hope and strength. I knew that she had been heaven sent and that she would lead me to happiness again, or at the very least, to a day when I could smile at my other children, who so desperately needed me.
I am now over five years on this journey. I can say with a full heart that I am happy again. I have found joy again. This happened not by running away from my grief, but by falling into it. I had to fall into that deep darkness, just as Steven Curtis Chapman writes, "So deep and dark that I could barely breathe". I tried to escape it, but it just made it worse. So I succumbed. I learned fairly quickly that by succumbing to it, giving in, as horrible and frightening as it was to be in that pit,
I was not there alone. There were many others there with me -- other family who had met J.T. when he passed from here to heaven, the many angels who hold us up when we feel like we just cannot take another breath, and, of course, God. God was there in that pit too. I didn't recognize it was him until much later, but now looking back, I know he was there holding my head above the muck.
I cannot explain it very well, but I keep trying because I really want other parents to understand this. It is only by truly BEING in your grief that you are able to rise above it. I found that each time I
would feel that wave come over me, I would just let go and let it carry me wherever it may. Sooner and sooner, I was carried to the top of the pit, able to climb out and breathe again. We humans don't like to be "uncomfortable". We don't like to be in pain. Losing a child blows that all out of the water. There's nowhere else for us to go. We HAVE to be in the pain. Try not to run from it, escape it, numb it or postpone it. It will just come back again. You must deal with it.
I've learned so much since J.T. left, and I wanted to share it with you. I AM on the other side of that pain. I DID survive, and I DID make it. You can, too. Life will never be the same without your child here, but you CAN make a new life, a new normal, and truly function.
Be easy on yourself. Don't expect ANYTHING from yourself for at least a year. Do what you can for your other children, as much as you can give, but don't feel guilty about not being able to engage with them or stop their hurt. It just doesn't work that way. Their grieving is different than yours and may need professional help down the road. I put both of my children into grief counseling -- one was fine and we stopped the counseling, the other one is still going and probably will for some time. You will know what and when to do that. The biggest thing is to not think it's your responsibility. You have a lot to deal with yourself.
Take all the help you can get right now. I had people offering to clean my bathrooms. Ordinarily, I would have said no. But, it made that person feel like they were helping me, and it was not the time for pride, so I took them up on their offer. Take the help. It makes others feel like they are doing something for you.
I want you to also know something very important. Our children do bring us signs that they are OK. Watch for them, but try to not obsess on them. Sometimes, grieving parents try to look too hard and then miss the obvious ones, like a butterfly landing on your shoulder, or pennies and feathers in random places in the house. You might hear "Mom" spoken in your child's voice, look around and no one is there. That really is him, and he wants you to know he's OK. They are not truly gone, as I have learned in depth since J.T. left. And they will not leave us. Right now, it is your child's job to see you through this, and he will. So take the signs and hold them in your heart. Know they are real.
Don't second guess yourself. These gifts will get you through those tough nights when everyone leaves and goes back to their normal lives.
In the beginning, I had to have someone come sit with me at night. I called them my "mommy sitters". I was terrified to have the house quiet. I would have panic attacks, and I never had them before. I had plenty of them those first few months. Don't think you are being "weak" or not dealing with things if you have to have someone come over to talk with you, or just watch the kids while you have a meltdown. It is part of this wilderness we are in now. There are no rights and there are no
wrongs. Don't judge yourself thinking you should be done by now, or why this again? It just is.
I wanted to say a couple of things about siblings. I received so much advice on what to do and what not to do with my children as far as "letting them see you cry" or "keeping them from the pain." I learned some very important things. First, you do need to let them see you cry initially. I found, though, that after the first month, they kept trying to comfort me and wanted to take away my grief. Definitely not something a child should have to do. So I spent more time at the cemetery without them. It's a great place to scream, yell, beat the ground, throw things, etc., but not have the kids see it. I don't want to say to hide your grief from them, because they know more than we think they do. But I did have to limit it. Your children might be different. You will know what is best -- go with your instincts and forget what everyone else says.
Whether we wanted it or not, we are on this road. There are many of us on this road and we hold onto each other with all our strength. We are all at different stages of this journey. There are many who feel they are helping by sharing their story with you, but you may find it just brings you down. It's OK to limit that kind of support. They mean well, but sometimes it would leave me more depressed than when I came in! Do what you feel is right.
You are loved. You are loved by many in your community, by your child, by God. You did not do anything to deserve this -- it is not a punishment. I know this for a fact. There is meaning in this, even though you cannot find it right now, know it is there. You may find that meaning one day, or you may not. But it has nothing to do with judgment, condemnation, past sins, etc. I hope you know that. You are loved, and you are never alone. In the depth of the pain, I know you will feel that hand reach down to you, those arms holding you, just like I did. Hang onto that love, and know that it is real.
My family and I are praying for you, with all our hearts.~Sarina Baptista
I hung onto those words with all my hope and strength. I knew that she had been heaven sent and that she would lead me to happiness again, or at the very least, to a day when I could smile at my other children, who so desperately needed me.
I am now over five years on this journey. I can say with a full heart that I am happy again. I have found joy again. This happened not by running away from my grief, but by falling into it. I had to fall into that deep darkness, just as Steven Curtis Chapman writes, "So deep and dark that I could barely breathe". I tried to escape it, but it just made it worse. So I succumbed. I learned fairly quickly that by succumbing to it, giving in, as horrible and frightening as it was to be in that pit,
I was not there alone. There were many others there with me -- other family who had met J.T. when he passed from here to heaven, the many angels who hold us up when we feel like we just cannot take another breath, and, of course, God. God was there in that pit too. I didn't recognize it was him until much later, but now looking back, I know he was there holding my head above the muck.
I cannot explain it very well, but I keep trying because I really want other parents to understand this. It is only by truly BEING in your grief that you are able to rise above it. I found that each time I
would feel that wave come over me, I would just let go and let it carry me wherever it may. Sooner and sooner, I was carried to the top of the pit, able to climb out and breathe again. We humans don't like to be "uncomfortable". We don't like to be in pain. Losing a child blows that all out of the water. There's nowhere else for us to go. We HAVE to be in the pain. Try not to run from it, escape it, numb it or postpone it. It will just come back again. You must deal with it.
I've learned so much since J.T. left, and I wanted to share it with you. I AM on the other side of that pain. I DID survive, and I DID make it. You can, too. Life will never be the same without your child here, but you CAN make a new life, a new normal, and truly function.
Be easy on yourself. Don't expect ANYTHING from yourself for at least a year. Do what you can for your other children, as much as you can give, but don't feel guilty about not being able to engage with them or stop their hurt. It just doesn't work that way. Their grieving is different than yours and may need professional help down the road. I put both of my children into grief counseling -- one was fine and we stopped the counseling, the other one is still going and probably will for some time. You will know what and when to do that. The biggest thing is to not think it's your responsibility. You have a lot to deal with yourself.
Take all the help you can get right now. I had people offering to clean my bathrooms. Ordinarily, I would have said no. But, it made that person feel like they were helping me, and it was not the time for pride, so I took them up on their offer. Take the help. It makes others feel like they are doing something for you.
I want you to also know something very important. Our children do bring us signs that they are OK. Watch for them, but try to not obsess on them. Sometimes, grieving parents try to look too hard and then miss the obvious ones, like a butterfly landing on your shoulder, or pennies and feathers in random places in the house. You might hear "Mom" spoken in your child's voice, look around and no one is there. That really is him, and he wants you to know he's OK. They are not truly gone, as I have learned in depth since J.T. left. And they will not leave us. Right now, it is your child's job to see you through this, and he will. So take the signs and hold them in your heart. Know they are real.
Don't second guess yourself. These gifts will get you through those tough nights when everyone leaves and goes back to their normal lives.
In the beginning, I had to have someone come sit with me at night. I called them my "mommy sitters". I was terrified to have the house quiet. I would have panic attacks, and I never had them before. I had plenty of them those first few months. Don't think you are being "weak" or not dealing with things if you have to have someone come over to talk with you, or just watch the kids while you have a meltdown. It is part of this wilderness we are in now. There are no rights and there are no
wrongs. Don't judge yourself thinking you should be done by now, or why this again? It just is.
I wanted to say a couple of things about siblings. I received so much advice on what to do and what not to do with my children as far as "letting them see you cry" or "keeping them from the pain." I learned some very important things. First, you do need to let them see you cry initially. I found, though, that after the first month, they kept trying to comfort me and wanted to take away my grief. Definitely not something a child should have to do. So I spent more time at the cemetery without them. It's a great place to scream, yell, beat the ground, throw things, etc., but not have the kids see it. I don't want to say to hide your grief from them, because they know more than we think they do. But I did have to limit it. Your children might be different. You will know what is best -- go with your instincts and forget what everyone else says.
Whether we wanted it or not, we are on this road. There are many of us on this road and we hold onto each other with all our strength. We are all at different stages of this journey. There are many who feel they are helping by sharing their story with you, but you may find it just brings you down. It's OK to limit that kind of support. They mean well, but sometimes it would leave me more depressed than when I came in! Do what you feel is right.
You are loved. You are loved by many in your community, by your child, by God. You did not do anything to deserve this -- it is not a punishment. I know this for a fact. There is meaning in this, even though you cannot find it right now, know it is there. You may find that meaning one day, or you may not. But it has nothing to do with judgment, condemnation, past sins, etc. I hope you know that. You are loved, and you are never alone. In the depth of the pain, I know you will feel that hand reach down to you, those arms holding you, just like I did. Hang onto that love, and know that it is real.
My family and I are praying for you, with all our hearts.~Sarina Baptista
Wednesday, November 14, 2012
The bad, the ugly, and... the good?
I've written A LOT about the crappy people in and around my life. Unfortunately, I let them occupy my time and bring me down more often than I'd like. So now, for a change of pace... I shall highlight the GOOD!!
My Nater.
That boy, he loves me. And he loves our boy. He doesn't say much when it comes to emotions, but I noticed awhile ago that he was being more "attentive". Usually when we're both home we are together, in the same room, doing the same things. But he had become almost clingy for lack of a better word. (sorry, babe.) I asked him what the deal was and his response went something like this:
"I'm sorry, I just built up enough love for two people, and now I only have one to give it to"
Seriously... just shattered my cold little heart to pieces!
I realized that I can't lock myself in my own world, and I need to be more attentive to him as well. Crappily, we have learned how to grieve and grow together and are stronger in ways we never imagined we would have to be. He tries so hard to fix me and make me happy, and even though it sometimes fails through no fault of his own, he keeps trying. I just love him.
My Sister.
She was a proud auntie from the day she found out that the "Nugget" existed. She has always seemed to have everything together, always seeming perfect. I've always been the hot mess sister. I never realized she had grown up so much and become an amazing person until she went with me to one of my rarely-good-news Level II ultrasounds. We heard the news that day that Gavin had some fluid on his brain. Short story was, he might not have been normal. My hole was getting deeper and deeper, and she just kept watching him going "He's hiccuping! He keeps opening his mouth! That's so cute!" We left that day and were driving through the cities and I was holding back tears, and voicing frustration. Something along the lines of a pity party. I stopped and there was silence for a little while. Then Anna piped up, "Well, I'm going to love him anyways." She said it with such conviction and love for my little boy that my frustrations were instantly gone. She was right.
And love him, she did! She was Gavin's most frequent NICU visitor, coming up daily for a cuddle, and she would pester him and pester him until he would open his eyes. She was strong, even when I wasn't, and I couldn't have asked for a better person to love my boy.
My Parents.
They were pretty darn excited for Nugget. I often joked that mom was hoarding baby stuff. They loved little Gavin, and I know their hearts were broken for him, and us and themselves. I know it was and probably is still hard for them to lose him and watch my pain, and I wish that they didn't have to be in pain either.
Anna's new husband has two kids, who have become the highlight of our family. I don't know that I've ever expressed this to anyone other than Nate, but I'm so thankful for them. I'm thankful for their role in our family, and the role they have given to my parents. They're proud grandparents, and that brings me so much peace. I often worry that our future will lead us to adopt. I don't worry about us, I would do it in a heartbeat- I've been worried about others. My parents have settled my fears (not that I was worried about them, it's the other side that gives me adoption anxiety) that they don't have to share DNA to be loved. I know that I don't have to be afraid that my children won't be as loved or as special as biological grandchildren would be, and that's a huge gift.
My Close Friends and Family.
Some have bailed, but the ones that are left are some of the most amazing people I know, and I'm so lucky to have them. They don't automatically change the subject if I talk about Gavin. They love on me when I'm having a bad day. They invite me out over and over again - even when I'm not being much fun.
Some have come out of the woodwork, quite a few that I haven't talked to in far too long, to join in my support system. To let me know that Gavin, Nate and I are so very loved. They keep me afloat. They make me cry quite often with their kindness.
My Gavin.
The little human that changed my world. I've had losses in the past, and I have absolutely no idea what is to come in the future, but my little boy made me a mom, and that's the most amazing thing I've ever experienced. I'll always be his mom, but instead of parenting him and watching him grow all I can shoot for is living a life that would have made him proud of me. I love my little boy more than anything else in the world, its a feeling that truly can't be understood until you see yourself in a teeny little person. In that moment you are changed forever. It is the deepest, most instant and all-consuming type of love that is just so impossible to describe. He was amazing, and I love him for always.
They're all my people, and I wouldn't trade them for anything.
My Nater.
That boy, he loves me. And he loves our boy. He doesn't say much when it comes to emotions, but I noticed awhile ago that he was being more "attentive". Usually when we're both home we are together, in the same room, doing the same things. But he had become almost clingy for lack of a better word. (sorry, babe.) I asked him what the deal was and his response went something like this:
"I'm sorry, I just built up enough love for two people, and now I only have one to give it to"
Seriously... just shattered my cold little heart to pieces!
I realized that I can't lock myself in my own world, and I need to be more attentive to him as well. Crappily, we have learned how to grieve and grow together and are stronger in ways we never imagined we would have to be. He tries so hard to fix me and make me happy, and even though it sometimes fails through no fault of his own, he keeps trying. I just love him.
My Sister.
She was a proud auntie from the day she found out that the "Nugget" existed. She has always seemed to have everything together, always seeming perfect. I've always been the hot mess sister. I never realized she had grown up so much and become an amazing person until she went with me to one of my rarely-good-news Level II ultrasounds. We heard the news that day that Gavin had some fluid on his brain. Short story was, he might not have been normal. My hole was getting deeper and deeper, and she just kept watching him going "He's hiccuping! He keeps opening his mouth! That's so cute!" We left that day and were driving through the cities and I was holding back tears, and voicing frustration. Something along the lines of a pity party. I stopped and there was silence for a little while. Then Anna piped up, "Well, I'm going to love him anyways." She said it with such conviction and love for my little boy that my frustrations were instantly gone. She was right.
And love him, she did! She was Gavin's most frequent NICU visitor, coming up daily for a cuddle, and she would pester him and pester him until he would open his eyes. She was strong, even when I wasn't, and I couldn't have asked for a better person to love my boy.
My Parents.
They were pretty darn excited for Nugget. I often joked that mom was hoarding baby stuff. They loved little Gavin, and I know their hearts were broken for him, and us and themselves. I know it was and probably is still hard for them to lose him and watch my pain, and I wish that they didn't have to be in pain either.
Anna's new husband has two kids, who have become the highlight of our family. I don't know that I've ever expressed this to anyone other than Nate, but I'm so thankful for them. I'm thankful for their role in our family, and the role they have given to my parents. They're proud grandparents, and that brings me so much peace. I often worry that our future will lead us to adopt. I don't worry about us, I would do it in a heartbeat- I've been worried about others. My parents have settled my fears (not that I was worried about them, it's the other side that gives me adoption anxiety) that they don't have to share DNA to be loved. I know that I don't have to be afraid that my children won't be as loved or as special as biological grandchildren would be, and that's a huge gift.
My Close Friends and Family.
Some have bailed, but the ones that are left are some of the most amazing people I know, and I'm so lucky to have them. They don't automatically change the subject if I talk about Gavin. They love on me when I'm having a bad day. They invite me out over and over again - even when I'm not being much fun.
Some have come out of the woodwork, quite a few that I haven't talked to in far too long, to join in my support system. To let me know that Gavin, Nate and I are so very loved. They keep me afloat. They make me cry quite often with their kindness.
My Gavin.
The little human that changed my world. I've had losses in the past, and I have absolutely no idea what is to come in the future, but my little boy made me a mom, and that's the most amazing thing I've ever experienced. I'll always be his mom, but instead of parenting him and watching him grow all I can shoot for is living a life that would have made him proud of me. I love my little boy more than anything else in the world, its a feeling that truly can't be understood until you see yourself in a teeny little person. In that moment you are changed forever. It is the deepest, most instant and all-consuming type of love that is just so impossible to describe. He was amazing, and I love him for always.
They're all my people, and I wouldn't trade them for anything.
Wednesday, November 7, 2012
I'll get there.
The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons h
ave an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.
-Elizabeth Kubler Ros-
-Elizabeth Kubler Ros-
Think.
"You haven’t slept in years. You spend every day around people in massive crisis. You lose your ability to judge what’s normal… in yourself, or anyone else. And yet people are constantly asking you to tell them how they’re doing. How the hell are you supposed to know? You don’t even know how you’re doing. Don’t wonder why people go crazy. Wonder why they don’t. In the face of all we can lose in a day… in an instant… wonder what the hell it is that makes us hold it together."
"That knowing, is better than wondering. That waking, is better than sleeping. And that even the biggest failure, even the worst, most intractable mistake, beats the hell out of never trying."
""I had a terrible day." We say it all the time. A fight with the boss, the stomach flu, traffic... That's what we describe as terrible when nothing terrible is happening..."
Today, I'm sad and frustrated and filled with a million annoying emotions that I would rather not have.
I'm so sick of facebook.
I'm sick of reading the posts about how it is the worst thing in the world to leave your child at daycare for 8 hours. "A mama shouldn't have to be away from her baby for 8 hours!" "It's so awful" "I gave birth to him, I should get him all the time" *Smash head into wall*
There are a million mamas that would KILL for their kid to only be away at daycare for 8 hours. It's so awful? 7 months. I've been away from my baby for 7 months. That's just the beginning.
I'm sick of reading how people are having the WORST DAY EVER because they lost their keys, or were late for something, or got yelled at or some other stupid little crap that does not matter and surely does not equal a WORST DAY EVER.
I get it. They're obviously exaggerating.
I'm not exaggerating.
I'm not saying people shouldn't feel the ways they do, but I'm saying they should think before they speak. And no, I'm not simply being selfish. I'm trying to survive. What doesn't kill you does not make you stronger... it makes you dead inside. It makes you so fragile and easily breakable and I am SO sick of crying over other people's stupidity and ignorance. Think before you speak. That's all I'm asking. Think of someone other than yourself, and for the love of all things holy, if you say "it's a two way street" or "when will you be back to yourself" or anything other than I'm sorry- I'm done, no matter who you are, and I get to have that choice. I do everything I can to keep myself above water, and your stupid statuses about how hard life is are just killing me. I LOVE seeing my friends babies, I LOVE sharing their happiness with them, but I cannot keep spending all of my energy loving on other people when they can't take two seconds to think of me or the million other people who are without their babies or are facing their absolute worst days and worst nightmares. Lost your keys? Wow... do you remember my son, Gavin? I lost him. Keys can be made. Sorry you're having a hard day, but what a crock of shit.
I've tried to speak up, Nate has tried to speak up. Those have been my nice reminders but apparently my message hasn't gotten through. Here it is. The last one. YOU ARE HURTING ME.
Your worst day ever? Pathetic. Your worst nightmare? Try mine out. Try anyone's out. Did your house just get swept away by the ocean? Did you just lose everything you have? Did your husband die because I couldn't save him? Did you have to watch as your baby stopped breathing? I'm in pain. A constant, agonizing, crippling pain. Your nephew died, and your worst nightmare is losing your keys. Over-exaggeration or not, I can't do it anymore. You're hurting me, and I'm letting you. I've always been the type to burn bridges, and I'm not sure at what point I changed and lost myself while protecting others... but it's time I take care of myself. I don't even mind if I end up with 5 people left in my life- because at least I'll know who cares. Right now I'm not so sure.
Tuesday, October 23, 2012
Warning. Angry.
Warning: This post may contain a lot of anger. If you are offended by cuss words, turn back now.
Nate and I have chosen to not share every single little detail about our son. Not even just about him, but also about us. It has come to my attention that since people are uninformed on certain things about our son (and us) that they are just making things up and spinning a story of why my son died.
I am horrified to even have to think about writing this post. Horrified. Disgusted. Pissed off.
You want the truth? Here it is.
My son died. He died. Everyone's aware of that. Everyone knows that he had Miller-Dieker Syndrome. He had Miller-Dieker Syndrome, and he died. Read more about it HERE. Seriously, educate yourselves. You will find that Miller-Dieker comes from having messed up chromosomes. Chromosomes are GENETIC. Gavin's problem was GENETIC. The information you will also find, is that it can be a total fluke, or it can be inherited. Ready for this bombshell? Gavin wasn't a fluke.
Gavin's death happened because one of his parents was unknowingly a carrier. You will notice I did not place either Nate or I's name into that sentence. Here's another truth: It's none of anybody's fucking business. Want to know the really sad part? We feel we can't tell anybody which one of us it is. Because truthfully, one of us can have perfect living children. The other can't. And we are surrounded by a few judgemental assholes who would spit out something along the lines of, "Why do you stay if you can have kids and the other one can't?" Seriously, WHAT KIND OF PEOPLE do we have in our lives that we have to be worried about bullshit comments like that?! Sad reality.
Here's the other truth. There was nothing, NOTHING, in the world that could have changed Gavin's life. I followed my doctors orders (minus the being hospitalized in the cities thing), I checked with them before doing really anything. If you research caffeine and pregnancy you will find that (GASP) you CAN have some- in moderation! If you would like to do further research, pregnant people CAN be on airplanes!! OMG!
Yeah, there were some things I could have improved on, but who the fuck thinks they have the right to insinuate, talk about, or even THINK IN THEIR FUCKING BRAIN that anything I did killed my son.
Yeah, re-read and process that.
I was "enlightened" today that people think of me that way.
People think that my actions killed my son.
It makes me SICK, fucking absolutely SICK to even think about having to write this.
But here is what I have to say to those people:
FUCK. YOU.
Go fuck yourselves.
Go fall in a hole and die.
I don't care how you do it, just get the fuck away from me, my husband and my life.
Gavin died because of his DNA. DNA can not be changed, altered, swapped, damaged, etc, etc, by me or anybody else. Unfortunately, neither can Nate or I's. We are now facing the horrible decisions about the rest of our lives. This could happen again. Still think I did it? Am I plotting to kill the next one too? How about any after that? If I stay in bed and do nothing but eat and use the bathroom for 9 months of a pregnancy and my baby STILL dies, what will be the reason then? Surely I will have done something!
I feel awful every single fucking day of my life that my son died. But here is the one thing I do know: my actions did not kill my son or aid in his death in any way, shape or form. Fuck you if you think otherwise. I do not have room for you in my life, and you do not deserve to have me in yours. Go to fucking hell.
Nate and I have chosen to not share every single little detail about our son. Not even just about him, but also about us. It has come to my attention that since people are uninformed on certain things about our son (and us) that they are just making things up and spinning a story of why my son died.
I am horrified to even have to think about writing this post. Horrified. Disgusted. Pissed off.
You want the truth? Here it is.
My son died. He died. Everyone's aware of that. Everyone knows that he had Miller-Dieker Syndrome. He had Miller-Dieker Syndrome, and he died. Read more about it HERE. Seriously, educate yourselves. You will find that Miller-Dieker comes from having messed up chromosomes. Chromosomes are GENETIC. Gavin's problem was GENETIC. The information you will also find, is that it can be a total fluke, or it can be inherited. Ready for this bombshell? Gavin wasn't a fluke.
Gavin's death happened because one of his parents was unknowingly a carrier. You will notice I did not place either Nate or I's name into that sentence. Here's another truth: It's none of anybody's fucking business. Want to know the really sad part? We feel we can't tell anybody which one of us it is. Because truthfully, one of us can have perfect living children. The other can't. And we are surrounded by a few judgemental assholes who would spit out something along the lines of, "Why do you stay if you can have kids and the other one can't?" Seriously, WHAT KIND OF PEOPLE do we have in our lives that we have to be worried about bullshit comments like that?! Sad reality.
Here's the other truth. There was nothing, NOTHING, in the world that could have changed Gavin's life. I followed my doctors orders (minus the being hospitalized in the cities thing), I checked with them before doing really anything. If you research caffeine and pregnancy you will find that (GASP) you CAN have some- in moderation! If you would like to do further research, pregnant people CAN be on airplanes!! OMG!
Yeah, there were some things I could have improved on, but who the fuck thinks they have the right to insinuate, talk about, or even THINK IN THEIR FUCKING BRAIN that anything I did killed my son.
Yeah, re-read and process that.
I was "enlightened" today that people think of me that way.
People think that my actions killed my son.
It makes me SICK, fucking absolutely SICK to even think about having to write this.
But here is what I have to say to those people:
FUCK. YOU.
Go fuck yourselves.
Go fall in a hole and die.
I don't care how you do it, just get the fuck away from me, my husband and my life.
Gavin died because of his DNA. DNA can not be changed, altered, swapped, damaged, etc, etc, by me or anybody else. Unfortunately, neither can Nate or I's. We are now facing the horrible decisions about the rest of our lives. This could happen again. Still think I did it? Am I plotting to kill the next one too? How about any after that? If I stay in bed and do nothing but eat and use the bathroom for 9 months of a pregnancy and my baby STILL dies, what will be the reason then? Surely I will have done something!
I feel awful every single fucking day of my life that my son died. But here is the one thing I do know: my actions did not kill my son or aid in his death in any way, shape or form. Fuck you if you think otherwise. I do not have room for you in my life, and you do not deserve to have me in yours. Go to fucking hell.
Sunday, October 14, 2012
A little bit of change
I always write when I'm angry or sad or frustrated... for once, right in this moment, I'm none of those. I shouldn't say that, they're always there, but none of those are my primary emotion at the moment. Confused? Yeah, me too.
I had a good week. There. I said it. My emotions of the last few weeks have taken a back seat, and I've been able to accept the good things that have happened. Almost without feeling guilty for not feeling bad! That's a big step! I realize how stupid that must sound. Why the hell would I feel guilty for feeling good? Because the second a big smile takes over my face, I am instantly aware that I'm feeling good without my baby here. A huge step in the grieving process is allowing yourself to realize that sadness does not equal love. (FYI, I'm not there yet.) I believe that we equate our grief with our love for our child and if we lessen or stop grieving, we stupidly think that we also stop loving them as much and remembering them.
Anyways, a list of the good things this week:
1. I cross-trained at a new base and loved it. The people were great, and really made me feel comfortable and accepted, which is something that had been lacking at my current place.
2. I started my new schedule consisting of more day shifts at my current station. I was nervous about this based on what had been missing here: a sense of fitting in. Turns out I was a little wrong. 2 of my partners and a couple people I don't even work with on the trucks told me how much they liked working with me. I could have cried. 18 months of not feeling comfortable here, and I finally feel like I am liked and appreciated. That is HUGE. Now I feel a little bad for applying for another job position. Oh well.
3. A paramedic I worked with at my old job came into the ER here with a patient and told me how much I was missed over there and he really wished I would come back. Seriously! 18 months, and I get it piled on in one week! I feel pretty good work-wise.
4. I received a dragonfly card and keychain in remembrance of Gavin, and also an awesome candle with his name, picture and a little saying and poem. I love it. The last few weeks have sucked, and I really needed something or somebody to acknowledge his life- and people did!
5. Last and largest... we are officially moving! We haven't sold our house yet but have some promising options so we decided to go ahead and set a closing date on our new house. There's a little bit of anxiety, but I'm so looking forward to being able to be comfortable in my own house again and hopefully being able to start to heal in some small way.
I found this today... now I do not wish to be dead in any way, but this does ring true.
Not only do I not have Gavin for the holidays, but Halloween was the due date for baby #1.
(baby #2 was also due in October)
How weird is it to think that I should have a 4 year old. And a 3 year old.
And Gavin.
Halloween is hard.
Wednesday, October 10, 2012
I would still choose you.
Most of the time I don't have the right words to say how I feel.
This column is one of the closest things I've read.
From CarlyMarie's article in Still Standing Magazine:
"If I could go back and endure the pain of your death and the sorrow of your loss, I would, because I would get to experience the love that you gave me all over again"
"I would still choose you, for you chose me, so therefore I would and will always choose you, my darling son"
Thursday, October 4, 2012
Dear baby boy,
I miss you.
Mom is having a rough week,
a lot of tears,
a lot of frustration,
a whole lot of sad.
I selfishly wish you were here
instead of just your pictures.
It's been almost 6 months since I've seen your face,
since I've held you,
since I've given you kisses.
6 months since life as I knew it ended.
I can't tell if time is crawling or flying,
but either way... this sucks.
6 months is far too long for a mama to be away from her baby,
and it's only a fraction of what it will be.
My only source of real happiness comes from
the fact that I got to be your mom.
I'm so lucky to have had you.
I love you.
Mom is having a rough week,
a lot of tears,
a lot of frustration,
a whole lot of sad.
I selfishly wish you were here
instead of just your pictures.
It's been almost 6 months since I've seen your face,
since I've held you,
since I've given you kisses.
6 months since life as I knew it ended.
I can't tell if time is crawling or flying,
but either way... this sucks.
6 months is far too long for a mama to be away from her baby,
and it's only a fraction of what it will be.
My only source of real happiness comes from
the fact that I got to be your mom.
I'm so lucky to have had you.
I love you.
Wednesday, September 26, 2012
6 Months. Looking Back.
I wasn't scared.
I went in thinking my non-stress test was no big deal, that in 30 minutes I'd be out the door, going home to take a needed shower and nap.
What happened next was not exactly what I had planned.
They placed the monitor on my belly to hear the baby's heartbeat and the nurse couldn't find it. She searched and searched and searched and just as I was about to freak out, Gavin gave me a swift kick in the rib to let me know he was just being funny. Hide and Seek, apparently.
Once she took my vitals, it alllll started to go downhill. My diastolic blood pressure was 112, I think. In a pregnant lady, that's cause for some serious concern- from everybody but the pregnant lady! I wasn't worried, but the nurses started moving faster. One got me a gown and had to start an IV, another was just watching Gav on the monitor, there was a 3rd in charge of small talk. Out of nowhere, my OB showed up. She went over the paper spilling out of the monitor. "Well, my dear, I know you won't like this, but it's time to go to the cities."
Shit.
I argued, tried to reason with her, if she would just let me go home and get some stuff I would go right after! Surely I could wait for Nate or my mom to come pick me up and take me there.
"We already paged the ambulance." Fuck!
I should have been nervous, but I was mad. At that point, I started to whine and beg. I'd go, but please, not with my co-workers! My other option, she said, was a helicopter. Fine, I'll go in the truck. But call downstairs and tell me who is working today so I can at least pick. I was horrified and embarrassed. "Too late, they're waiting outside the door." I demanded my pants. If my coworkers were going to see me like this, like the patient instead of the paramedic, they were not going to see my bare ass!
My nurses and doctor left to go talk to them and I could hear them outside my room arguing. It will be fine, the Mag is running and she's only at a 1. Just go fast. But we want a nurse to ride along! If there are complications, we will need extra hands. At that point, I quit listening and turned my attention to Gavin.
You better stay in there, little boy. Just two more hours, please. We'll be okay, but you need to hang out for awhile. He gave me a good kick and I knew he would be fine.
My coworkers entered with the cot I have put many other people on. They had looks of terror and pity on their faces. I was their transfer nightmare. I was wheeled through the ER and tried to avoid eye contact with the nurses and doc there. It didn't work.
Then my Mag Sulfate drip started to kick in, and I started to feel like shit. I was unbearably hot and had to have ice packs on and around my face. I felt like I had the world's worst hangover- straight from hell. Luckily, the ride was uneventful and my paramedic/coworker was great, even though she was nervous and not hiding it well.
We arrived and got situated and they did a really low-quality ultrasound. I learned how awkward it is to attempt to maneuver an IV pole around a bathroom. I had to work hard to convince the new nurses to even let me go to the bathroom unattended. As much as I begged and pleaded, I could not get anybody to sneak me some water. Nate got there, and they started talking about consent forms and birth options. Baby is coming tonight, they said. Turns out, I was at a serious risk for having a stroke.
I had decided earlier in the day that I wasn't going to think about it, about what could go wrong. I knew, and I ignored. I knew that Gavin would be okay, I had researched and researched and researched, and 32 week preemies were almost always okay. We would live in the NICU for awhile, but he would be fine. So when they said it was time to prep for a c-section, I didn't argue. I didn't shake, my heart didn't race, nothing. I had spent the last 14 or so weeks of my pregnancy being scared. I was going to meet my son, and we were going to be okay. I finally felt a little bit of peace.
I went through all the unpleasantries of prep: cath, spinal block, meds... ready to go. I felt them start cutting, and then I got upset. Nate wasn't there yet. I told the nurse I wasn't ready, that Nate wasn't there. She said it's okay Honey, he will be in here soon! I quietly yelled that I needed him and they needed to wait, and then he finally appeared. He held my hand and talked to me and I tried really hard to not think about what was happening. At 9:08, Gavin was born. As soon as he was out, it was quiet. I'm still not sure what the NICU team was doing with him. After a few moments of silence, I heard a squawk. It was little, but he was making his arrival statement! The entire day hit me at that point, and I threw up. Probably mostly from the meds, but partially from relief. We had made it, my Gavin and I.
I have no idea what was being said behind closed doors that made people so scared and nervous for me... I'm sure it was the situation itself, it's life-threatening and my case was severe. A few months after, Nate and I were talking about it and he told me he was so proud of me for being so strong, I said it really wasn't a big deal I just had to get through it for my boy. He said he didn't know who he was more scared for- me or Gavin. He thought I was going to die. I'm not sure why, but I just wasn't scared.
Fast forward 6 months, and I'm scared now. Not that I'll die, but that my children will. Straight-up terrified.
Gav,
You'd be 6 months old today. Sometimes I think my heart stopped when yours did. Some days I feel dead inside. Some days are fine. I always miss you, though. I miss your cute little face and big old feet. I miss watching you scoot yourself around your isolette, only stopping when you crammed yourself into a corner and then being mad about it. I miss seeing myself and your daddy in you. I miss our midnight meetings, and I miss holding your hand. I miss just holding you. I miss being Mommy and having that purpose in my life. I miss all the things we are missing out on. I loved you from the start and I'll love you until I end. I miss you, little bug. xo
I went in thinking my non-stress test was no big deal, that in 30 minutes I'd be out the door, going home to take a needed shower and nap.
What happened next was not exactly what I had planned.
They placed the monitor on my belly to hear the baby's heartbeat and the nurse couldn't find it. She searched and searched and searched and just as I was about to freak out, Gavin gave me a swift kick in the rib to let me know he was just being funny. Hide and Seek, apparently.
Once she took my vitals, it alllll started to go downhill. My diastolic blood pressure was 112, I think. In a pregnant lady, that's cause for some serious concern- from everybody but the pregnant lady! I wasn't worried, but the nurses started moving faster. One got me a gown and had to start an IV, another was just watching Gav on the monitor, there was a 3rd in charge of small talk. Out of nowhere, my OB showed up. She went over the paper spilling out of the monitor. "Well, my dear, I know you won't like this, but it's time to go to the cities."
Shit.
I argued, tried to reason with her, if she would just let me go home and get some stuff I would go right after! Surely I could wait for Nate or my mom to come pick me up and take me there.
"We already paged the ambulance." Fuck!
I should have been nervous, but I was mad. At that point, I started to whine and beg. I'd go, but please, not with my co-workers! My other option, she said, was a helicopter. Fine, I'll go in the truck. But call downstairs and tell me who is working today so I can at least pick. I was horrified and embarrassed. "Too late, they're waiting outside the door." I demanded my pants. If my coworkers were going to see me like this, like the patient instead of the paramedic, they were not going to see my bare ass!
My nurses and doctor left to go talk to them and I could hear them outside my room arguing. It will be fine, the Mag is running and she's only at a 1. Just go fast. But we want a nurse to ride along! If there are complications, we will need extra hands. At that point, I quit listening and turned my attention to Gavin.
You better stay in there, little boy. Just two more hours, please. We'll be okay, but you need to hang out for awhile. He gave me a good kick and I knew he would be fine.
My coworkers entered with the cot I have put many other people on. They had looks of terror and pity on their faces. I was their transfer nightmare. I was wheeled through the ER and tried to avoid eye contact with the nurses and doc there. It didn't work.
Then my Mag Sulfate drip started to kick in, and I started to feel like shit. I was unbearably hot and had to have ice packs on and around my face. I felt like I had the world's worst hangover- straight from hell. Luckily, the ride was uneventful and my paramedic/coworker was great, even though she was nervous and not hiding it well.
We arrived and got situated and they did a really low-quality ultrasound. I learned how awkward it is to attempt to maneuver an IV pole around a bathroom. I had to work hard to convince the new nurses to even let me go to the bathroom unattended. As much as I begged and pleaded, I could not get anybody to sneak me some water. Nate got there, and they started talking about consent forms and birth options. Baby is coming tonight, they said. Turns out, I was at a serious risk for having a stroke.
I had decided earlier in the day that I wasn't going to think about it, about what could go wrong. I knew, and I ignored. I knew that Gavin would be okay, I had researched and researched and researched, and 32 week preemies were almost always okay. We would live in the NICU for awhile, but he would be fine. So when they said it was time to prep for a c-section, I didn't argue. I didn't shake, my heart didn't race, nothing. I had spent the last 14 or so weeks of my pregnancy being scared. I was going to meet my son, and we were going to be okay. I finally felt a little bit of peace.
I went through all the unpleasantries of prep: cath, spinal block, meds... ready to go. I felt them start cutting, and then I got upset. Nate wasn't there yet. I told the nurse I wasn't ready, that Nate wasn't there. She said it's okay Honey, he will be in here soon! I quietly yelled that I needed him and they needed to wait, and then he finally appeared. He held my hand and talked to me and I tried really hard to not think about what was happening. At 9:08, Gavin was born. As soon as he was out, it was quiet. I'm still not sure what the NICU team was doing with him. After a few moments of silence, I heard a squawk. It was little, but he was making his arrival statement! The entire day hit me at that point, and I threw up. Probably mostly from the meds, but partially from relief. We had made it, my Gavin and I.
I have no idea what was being said behind closed doors that made people so scared and nervous for me... I'm sure it was the situation itself, it's life-threatening and my case was severe. A few months after, Nate and I were talking about it and he told me he was so proud of me for being so strong, I said it really wasn't a big deal I just had to get through it for my boy. He said he didn't know who he was more scared for- me or Gavin. He thought I was going to die. I'm not sure why, but I just wasn't scared.
Fast forward 6 months, and I'm scared now. Not that I'll die, but that my children will. Straight-up terrified.
Gav,
You'd be 6 months old today. Sometimes I think my heart stopped when yours did. Some days I feel dead inside. Some days are fine. I always miss you, though. I miss your cute little face and big old feet. I miss watching you scoot yourself around your isolette, only stopping when you crammed yourself into a corner and then being mad about it. I miss seeing myself and your daddy in you. I miss our midnight meetings, and I miss holding your hand. I miss just holding you. I miss being Mommy and having that purpose in my life. I miss all the things we are missing out on. I loved you from the start and I'll love you until I end. I miss you, little bug. xo
Monday, September 24, 2012
emotional messes.
I haven't been writing lately because I haven't had much to say. I feel like a broken record... I miss my boy... that's just my new every day life!
I've been frustrated lately and unsure of how I'm feeling. The worst feeling in the world is thinking that people have forgotten Gavin, and reality is that some have and some have not! While I can't make people feel a certain way, I haven't learned how to control the hurt that comes with that. Every time I realize somebody has deleted me on facebook or someone avoids me in public, it sucks. When the people I expect to want to remember Gavin just plain don't, I truly have to fight back tears. There are people in my life who should be front and center that I just don't want to be around anymore because I feel like a pile of crap that my son didn't and doesn't matter to them... and I shouldn't have to feel that way.
See, the broken record thing? I've talked about that before. It's still there, though.
We are trying to sell our house (going on 3.5months) to move into a bigger beautiful house that honestly isn't a need, it's just a want. We were discussing that one evening with friends and I was told maybe I should just be thankful for what I have. They went on to explain that I have a home, a man that works hard, a nice vehicle and there are people who have far less, so I should just be content. Yeah, I probably should be.
But truth is, I have a home where I wake up and open my bedroom door just to be facing another door, one that's closed. It's always closed. Behind it lies an adorable blue nursery with a stinkin cute crib that matches the stinkin cute dresser full of stinkin cute clothes that are never going to be worn. Not to mention the super comfortable papasan rocking chair that nobody sits in. There's a name on the wall that I made myself to let Nate know he had come out victorious in the naming battle, a name that barely gets used. I have a home. A nice, comfortable home. This home is full of the future that no longer exists. It's just a room... but it's Gavin's. I can't take it down, or pack it away. I can't turn it into a guest room. I can't. It's just there, life's little way of making fun of me. It got me good this time.
Also, a lot of people who have far less than me have the one thing in life I don't, and I work hard and contribute to the county fund for their 10 children ... but hey, I have a nice car. How lucky am I?!
I realize people don't get it. I get how people might think I'm being selfish. But here's the deal. I work my damn ass off to help people, and their children, and their parents, (and I love my job, don't get me wrong) and then I get to come home and be slapped in the face with that door- the one that laughs at me and points out that I can save lives, just not Gavin's.
So yeah, I want a new house. Not even a new one- just a different one. I realize that it won't make everything go away or stop hurting or make me feel better in any way, but I can at least put an end to one part of the grief. That room symbolizes a future that was totally ripped away. It makes me sad for what I don't have. It makes me hurt to have the visual reminders of where Gavin should be at any point of the day, or what he should be wearing or playing with. In this house, there's nothing I can do about it, that will always be his room full of his stuff. I want to start over so that I can remember the good part- my son. I want his pictures on the wall and his name next to a clock stopped on his time of birth, I want to remember what I had and be grateful for it. I got to be a mom, and that's still mindblowing to me, and I want to recognize the good... not have a constant physical reminder of the bad.
So yeah, have your opinion. I know part of my reasoning is probably totally irrational, I just don't care.
But don't ever tell me to be content with what I have, when I am living in one big reminder of what I don't.
I've been frustrated lately and unsure of how I'm feeling. The worst feeling in the world is thinking that people have forgotten Gavin, and reality is that some have and some have not! While I can't make people feel a certain way, I haven't learned how to control the hurt that comes with that. Every time I realize somebody has deleted me on facebook or someone avoids me in public, it sucks. When the people I expect to want to remember Gavin just plain don't, I truly have to fight back tears. There are people in my life who should be front and center that I just don't want to be around anymore because I feel like a pile of crap that my son didn't and doesn't matter to them... and I shouldn't have to feel that way.
See, the broken record thing? I've talked about that before. It's still there, though.
We are trying to sell our house (going on 3.5months) to move into a bigger beautiful house that honestly isn't a need, it's just a want. We were discussing that one evening with friends and I was told maybe I should just be thankful for what I have. They went on to explain that I have a home, a man that works hard, a nice vehicle and there are people who have far less, so I should just be content. Yeah, I probably should be.
But truth is, I have a home where I wake up and open my bedroom door just to be facing another door, one that's closed. It's always closed. Behind it lies an adorable blue nursery with a stinkin cute crib that matches the stinkin cute dresser full of stinkin cute clothes that are never going to be worn. Not to mention the super comfortable papasan rocking chair that nobody sits in. There's a name on the wall that I made myself to let Nate know he had come out victorious in the naming battle, a name that barely gets used. I have a home. A nice, comfortable home. This home is full of the future that no longer exists. It's just a room... but it's Gavin's. I can't take it down, or pack it away. I can't turn it into a guest room. I can't. It's just there, life's little way of making fun of me. It got me good this time.
Also, a lot of people who have far less than me have the one thing in life I don't, and I work hard and contribute to the county fund for their 10 children ... but hey, I have a nice car. How lucky am I?!
I realize people don't get it. I get how people might think I'm being selfish. But here's the deal. I work my damn ass off to help people, and their children, and their parents, (and I love my job, don't get me wrong) and then I get to come home and be slapped in the face with that door- the one that laughs at me and points out that I can save lives, just not Gavin's.
So yeah, I want a new house. Not even a new one- just a different one. I realize that it won't make everything go away or stop hurting or make me feel better in any way, but I can at least put an end to one part of the grief. That room symbolizes a future that was totally ripped away. It makes me sad for what I don't have. It makes me hurt to have the visual reminders of where Gavin should be at any point of the day, or what he should be wearing or playing with. In this house, there's nothing I can do about it, that will always be his room full of his stuff. I want to start over so that I can remember the good part- my son. I want his pictures on the wall and his name next to a clock stopped on his time of birth, I want to remember what I had and be grateful for it. I got to be a mom, and that's still mindblowing to me, and I want to recognize the good... not have a constant physical reminder of the bad.
So yeah, have your opinion. I know part of my reasoning is probably totally irrational, I just don't care.
But don't ever tell me to be content with what I have, when I am living in one big reminder of what I don't.
Sunday, September 23, 2012
Wednesday, September 19, 2012
As I sit in heaven,
And watch you every day,
I try to let you know with signs-
I never went away.
*****
I hear you when you're laughing
And I watch you as you sleep,
I even place my arms around you
To calm you as you weep.
*****
I see you wish the days away,
Begging to have me home.
So I try to send you signs,
So you know you're not alone.
*****
Don't feel guilty that you have life
That was denied to me.
Heaven is truly beautiful,
Just you wait and see.
*****
So live your life, laugh again,
Enjoy yourself, be free.
Then I'll know with every breath you take-
You'll be taking one for me.
And watch you every day,
I try to let you know with signs-
I never went away.
*****
I hear you when you're laughing
And I watch you as you sleep,
I even place my arms around you
To calm you as you weep.
*****
I see you wish the days away,
Begging to have me home.
So I try to send you signs,
So you know you're not alone.
*****
Don't feel guilty that you have life
That was denied to me.
Heaven is truly beautiful,
Just you wait and see.
*****
So live your life, laugh again,
Enjoy yourself, be free.
Then I'll know with every breath you take-
You'll be taking one for me.
Wednesday, August 29, 2012
On Being Honest.
I am so torn on where I am. I try to be open, but I know that I mostly am not. I talk to people, but I don't really talk to people. I go on like I'm fine, and a lot of days I am. But on the days that I am not, I find it hard to reach out or to say anything because I feel like a burden, like others have moved on and don't want to have hard conversations. So a lot of what is on my mind just stays there. Before everybody screams out and says "You know you can talk to me!", I probably do know that I can. I just I don't know how to bring it up, or even what to say.
I can try to lay it out. I feel like in terms of grieving, I'm doing kind of okay? I know how I feel (sometimes like absolute crap) but I also feel lucky in a way. I know why my Gavin died. I understand it. That does not make it easy, but at least I don't have those unanswered questions. I don't have the guilt. There literally was nothing I could have done to change it, and believe me, in a weird way that helps. I have this one feeling that helps me and developed a lot from my job, and have always been hesitant to say it because I feel pretty heartless. Maybe it won't make anybody think so, but it makes me feel like a terrible person. My therapist (yeah, I have one.) says I should get it out because it might help somebody else who may need that perspective. So I'll try to explain it more than just the simple version I gave to her- go easy on me.
While Gavin's death is the most horrible heartbreaking and painful thing I have ever experienced- it was a blessing for him.
Good grief, I feel terrible that I even just wrote that. I'll try to explain.
If Gavin had lived any longer, his life would have been so hard for him. He would have been very sick, and had uncontrollable seizures, probably problems breathing and eating, he would never have been able to do more than sit up, and I can't even think of the pain he would have had. I can't think of the pain he probably did have. I didn't want him to die, and if he had lived I truly believe we would have been the best parents he could have ended up with. It was never a question, we would have done whatever he needed. But how do you wish for that? How could I wish for another day, week, month with my baby when I know how hard it would have been for him? It would be selfish of me. I do have some seriously selfish days. I have why the fuck did this happen to us days. I have very very angry days. But for my Gavin, I feel peace.
In my line of work, I learned quickly that death can be a blessing. Just not for those left behind.
Speaking of anger earlier, I have a lot of it. It's totally corny, but they say you find out who your friends are. For us, it's more like you find out who your family is. I might go on a rant here, and it's very specific people. If you think it's you, I'd guarantee it's probably not. I doubt these ones would care enough to read this. I don't want to tear anybody down, and I do know that everybody grieves differently. But is it too much to ask for some to grieve at all? I mean, your first grandchild. You should care. You should have cared enough to show up more than once, and maybe once ask how we are. You should care enough to be mad that your sister was 2 blocks away at home during the funeral, and just didn't come. (Believe me, I'm mad) I realize the family way is to pretend stuff doesn't happen, but that will not be the case here. He was not a thing or a happening that will be swept under the rug like he didn't exist. He's my son. Your grandson. Your nephew.
He fucking matters.
I don't know if some relationships are fixable anymore. I don't know that I can go seeking people out and telling them what they did wrong in my eyes. I can't ask for an apology. I can't keep reminding them that I had a son. That was a little more harsh than I intended, but it needed to get out so I'm leaving it. For now anyways. I'll probably feel bad later and take it down, but I needed to say it. I hadn't noticed so far, but I think today is one of those angry days.
I can try to lay it out. I feel like in terms of grieving, I'm doing kind of okay? I know how I feel (sometimes like absolute crap) but I also feel lucky in a way. I know why my Gavin died. I understand it. That does not make it easy, but at least I don't have those unanswered questions. I don't have the guilt. There literally was nothing I could have done to change it, and believe me, in a weird way that helps. I have this one feeling that helps me and developed a lot from my job, and have always been hesitant to say it because I feel pretty heartless. Maybe it won't make anybody think so, but it makes me feel like a terrible person. My therapist (yeah, I have one.) says I should get it out because it might help somebody else who may need that perspective. So I'll try to explain it more than just the simple version I gave to her- go easy on me.
While Gavin's death is the most horrible heartbreaking and painful thing I have ever experienced- it was a blessing for him.
Good grief, I feel terrible that I even just wrote that. I'll try to explain.
If Gavin had lived any longer, his life would have been so hard for him. He would have been very sick, and had uncontrollable seizures, probably problems breathing and eating, he would never have been able to do more than sit up, and I can't even think of the pain he would have had. I can't think of the pain he probably did have. I didn't want him to die, and if he had lived I truly believe we would have been the best parents he could have ended up with. It was never a question, we would have done whatever he needed. But how do you wish for that? How could I wish for another day, week, month with my baby when I know how hard it would have been for him? It would be selfish of me. I do have some seriously selfish days. I have why the fuck did this happen to us days. I have very very angry days. But for my Gavin, I feel peace.
In my line of work, I learned quickly that death can be a blessing. Just not for those left behind.
Speaking of anger earlier, I have a lot of it. It's totally corny, but they say you find out who your friends are. For us, it's more like you find out who your family is. I might go on a rant here, and it's very specific people. If you think it's you, I'd guarantee it's probably not. I doubt these ones would care enough to read this. I don't want to tear anybody down, and I do know that everybody grieves differently. But is it too much to ask for some to grieve at all? I mean, your first grandchild. You should care. You should have cared enough to show up more than once, and maybe once ask how we are. You should care enough to be mad that your sister was 2 blocks away at home during the funeral, and just didn't come. (Believe me, I'm mad) I realize the family way is to pretend stuff doesn't happen, but that will not be the case here. He was not a thing or a happening that will be swept under the rug like he didn't exist. He's my son. Your grandson. Your nephew.
He fucking matters.
I don't know if some relationships are fixable anymore. I don't know that I can go seeking people out and telling them what they did wrong in my eyes. I can't ask for an apology. I can't keep reminding them that I had a son. That was a little more harsh than I intended, but it needed to get out so I'm leaving it. For now anyways. I'll probably feel bad later and take it down, but I needed to say it. I hadn't noticed so far, but I think today is one of those angry days.
Saturday, August 25, 2012
To My Boy
Gav,
It's the middle of the night.
I can't sleep.
Not unusual, I don't sleep much these days.
But tonight, my heart hurts. Freaking hurts.
I miss my baby. I miss you.
I know deep down that you're better,
that you have no pain, no suffering,
and gosh what more could I wish for!
But Little Bug, I'm not better.
I hurt.
It's 3:12 am.
I should be cuddling you, in the big comfy
chair I picked out just for us to cuddle in,
I shouldn't be sitting here crying.
But there's a big Gavin-shaped hole
in my life, and nothing else will fit.
I wish more than anything that
we could have another cuddle
right now and that I could give you enough
kisses to last an eternity,
but I know eventually
that day will come.
Until then, I'll love you forever.
Thanks for being mine.
I love you.
Mom
It's the middle of the night.
I can't sleep.
Not unusual, I don't sleep much these days.
But tonight, my heart hurts. Freaking hurts.
I miss my baby. I miss you.
I know deep down that you're better,
that you have no pain, no suffering,
and gosh what more could I wish for!
But Little Bug, I'm not better.
I hurt.
It's 3:12 am.
I should be cuddling you, in the big comfy
chair I picked out just for us to cuddle in,
I shouldn't be sitting here crying.
But there's a big Gavin-shaped hole
in my life, and nothing else will fit.
I wish more than anything that
we could have another cuddle
right now and that I could give you enough
kisses to last an eternity,
but I know eventually
that day will come.
Until then, I'll love you forever.
Thanks for being mine.
I love you.
Mom
Thursday, August 16, 2012
Friday, July 27, 2012
Knocked Up, Knocked Down
I should have had a 4 month old yesterday. I often wonder when I'll stop counting.
My normal is not normal. My normal is heavy. It's exhausting. It hurts.
I don't fit in where I used to.
I'm angry. How does everything manage to go on, when my son does not?
How come there is no book like What to Expect When You Didn't Get What You Were Expecting? Where are the instructions for people that don't know how to just be?
When does it hurt the most? Finally, a question with an easy answer. In the car, all alone. Music makes me think. Silence makes me think more. When I see babies, especially boys. When I see the For Sale sign in my yard, and realize I will have to take his name off of the nursery wall... and it won't be put back up. When people ask "What's wrong?" or "How are you?" and I answer with "nothing" or "fine". The short answer: always.
It drives me crazy that people don't know or care that he existed. The little boy that is the biggest part of my life, to others means nothing. I see him as my son, others see him as a painful trigger.
My mind is tormented, every day brings a different thought on what to do next. Even if I could have another baby, can you imagine that pregnancy? I don't see how I would make it through. The constant anxiety and fear that something could be going terribly wrong...
All innocence in that sense has totally been lost.
My normal is not normal. My normal is heavy. It's exhausting. It hurts.
I don't fit in where I used to.
I'm angry. How does everything manage to go on, when my son does not?
How come there is no book like What to Expect When You Didn't Get What You Were Expecting? Where are the instructions for people that don't know how to just be?
When does it hurt the most? Finally, a question with an easy answer. In the car, all alone. Music makes me think. Silence makes me think more. When I see babies, especially boys. When I see the For Sale sign in my yard, and realize I will have to take his name off of the nursery wall... and it won't be put back up. When people ask "What's wrong?" or "How are you?" and I answer with "nothing" or "fine". The short answer: always.
It drives me crazy that people don't know or care that he existed. The little boy that is the biggest part of my life, to others means nothing. I see him as my son, others see him as a painful trigger.
My mind is tormented, every day brings a different thought on what to do next. Even if I could have another baby, can you imagine that pregnancy? I don't see how I would make it through. The constant anxiety and fear that something could be going terribly wrong...
All innocence in that sense has totally been lost.
"Don't let anyone stop you from being exactly who and how you need to be. Do not stop. Do not stop. Get up, stand up, throw those fucking hands up. Push out the night. Hide from the daylight. Embrace your endless, enraging tears for your child, your daughter, your son, your big sticky stinky shitting fucking life.
It's true, it really does suck this much, and it always will. Always always always. It will always suck exactly this much that you and me and my wife and your grandparents and our siblings lost a life that was going to be amazing." - glow in the woods
Gavin. It means Little Hawk. Or Battle Hawk, in the Welsh meaning. I didn't look this up until after his life, but it fits. His main NICU nurse told me that before he died she thought he looked like he was ready to fly away, and fly away my little hawk did.
Friday, July 20, 2012
Most of the time when I'm bored at work, I find myself surfing the internet. I'm usually reading about one of two topics. EMS or baby loss. While sometimes it is totally depressing to make myself think about things, other times it is also therapeutic. I don't think I know anybody in my personal life that truly understands where I'm at right now. The fact that I really have nobody that "gets it" leads to a lot of small meltdowns. But on the internet... I fit in. I'm sadly welcomed in. There are stories similar to mine and some far more heartbreaking. But they know my words. They speak them even before I do. It's a horrible bond, but a comforting one. I know some of them read here, and I read there, and I'm so very thankful for them.
One site, faces of loss, shows such normal women and shares their stories. Some are so incredibly close to mine. Another shares stories just through words. I found words tonight from an unnamed mother that are so incredibly dead-on for me that I need to post it here so I don't lose it. I don't see it as profound or sentimental as some seem to be, this one is just real. These are the words I can't find to explain to people. These are almost the exact words I said to my Gavin the night before he died, when I had to tell him that everything would be okay and I accepted why he needed to leave me.
I told her how sorry I was and that I loved her and did not want her to suffer. I would rather suffer every day for the rest of my life than to allow her to suffer one moment in her life.
~Mom of an Angel
I'll take pain and suffering a million times over when it means that he doesn't have to.
~K
Monday, July 9, 2012
Sadly?!
Somebody posted on facebook this morning, "Sadly had to watch my son turn 1 this week".
I realize life is not all about me, and people generally don't care about what I think but seriously?! Could you not find a different way to phrase that? If you're reading here, let me teach you something I learned from being a mother for just 12 days. Your child's birthday is not sad. Sad is watching your son die. Sad is knowing your son will never turn 1. Or any other number for that matter.
I realize the poster just worded it poorly and I hope was not actually sad about it, but I generally think before I post on facebook, and wonder if my post is going to hurt anyone or offend someone when I didn't mean for that to happen. If you're going to post stupid shit like that, just remove me from your friends list. I work pretty hard at being normal and when I fail it's usually my own fault, so I don't really need anybody else causing the bad moments for me.
I realize life is not all about me, and people generally don't care about what I think but seriously?! Could you not find a different way to phrase that? If you're reading here, let me teach you something I learned from being a mother for just 12 days. Your child's birthday is not sad. Sad is watching your son die. Sad is knowing your son will never turn 1. Or any other number for that matter.
I realize the poster just worded it poorly and I hope was not actually sad about it, but I generally think before I post on facebook, and wonder if my post is going to hurt anyone or offend someone when I didn't mean for that to happen. If you're going to post stupid shit like that, just remove me from your friends list. I work pretty hard at being normal and when I fail it's usually my own fault, so I don't really need anybody else causing the bad moments for me.
Tuesday, July 3, 2012
Truth.
"If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they died -- you're not reminding them. They didn't forget they died. What you're reminding them of is that you remembered that they lived, and that is a great gift."
--Elizabeth Edwards
--Elizabeth Edwards
Tuesday, June 26, 2012
Gavin's Life! Part 3: Hard Days
The first two parts were so easy for me to write... it was very raw and open. It's never been hard for me to talk about Gavin, but writing about his death just hurts. Hurts like freaking hell. Some days have just been hard lately. I think I was very numb for awhile and reality finally decided to settle in, and it's a reality that just down right sucks. There are still some details that I (we) just aren't going to share, but I'll do my best.
I don't want to admit this, but the day they told us about his diagnosis, I had a pretty hardcore breakdown. I left as soon as our meeting ended, and I'm completely ashamed of that. I could have stayed all day, but I chose not to. I gave up precious moments because I was weak. I couldn't handle looking at Gavin without breaking down and crying, and I didn't want that to be how our moments with him went. I can't even type that without crying! Ugh. So we went home, as I badly needed to compose myself and digest some of what we had been bulldozed with. My eyes were so puffy it hurt to open them!
The next morning, I went back. I had a lot of people asking if they could come meet Gavin, but I really wanted some alone time to just be with my baby so I spent the day ignoring people. My parents and sister did end up coming, which was good because I ended up getting to hold Gavin for the first time so I had some photographers! It was quite a setup to get to hold him, having to set all his lines and vent just right so nothing was pulling... I almost felt bad that the nurses had to do it! But I desperately needed that connection, and I think they knew that. That was the first moment of happy I'd felt in a few days at least!
The next day (Monday) we had another care conference. All of Gavin's doctors and nurses and neurologists and social workers were there, which was incredibly overwhelming, and they wanted decisions (like we had any!). He was breathing on his own, always was, and he was ready to be extubated. There were many what-if scenarios, and many questions we did not have answers for. Did we want to be discharged and set up hospice in our home? I said if he reached the preemie milestones and was big enough to take home then hell yes we would- but if not, the care he needed was at the hospital. We could be there 24 hours a day- his doctors couldn't do that at our home. And seriously, he was less than 3 pounds! I'm convinced they asked this question in a moment of insanity. Did we want all cares and feedings stopped to allow natural death? I think this answer may have startled them, no way in hell will my son not be fed when he's hungry! Looking back, that was the one time I raised my voice. In that moment, and many to come, I fully understood the "mama bear" instinct. The entire situation was out of my control, but I felt a fierce need to protect him as much as I could. Then I cried. Big ugly tears. I didn't know what the right answers were, but we did the best we could.
*Side note: Anybody who saw the Grey's Anatomy episode about Morgan's premature baby that ended up dying that aired within a week or two of this, I could seriously hurt somebody for not warning me. That shit should come with a disclaimer.
Anyways. We decided to have a Meet Gavin day before he was extubated... just in case it didn't go well. We wanted to get it out of the way so we could spend our time just focusing on Gavin and not worrying about coordinating times for people to come and having to put on happy faces.. that sounds awful, but I just wanted to be alone. So Tuesday was the big day, and meet Gavin they did! It was a constant parade of visitors, and I'm sure he was just as worn out as we were by the end of the day, if not more. It was so so great to have so many people that care about us and our son, but it was an incredibly hard day because I knew as they were meeting him they were also having to say goodbye to him in case they didn't see him again. I know it was a hard thing for every single person, and I will always admire and love them for that. We were all able to keep it pretty light, "Yes, he sure is cute!" "Yep, that's definitely my nose!" "Definitely got daddy's feet!" but you could hear the pain in everybodys voices. I think the hardest was Nate's grandma. She was so incredibly heartbroken, but unlike the rest of us she was not trying to hide it. If you've never seen a grandma cry, let me tell you, it hurts. She asked if she could touch him so I opened up the isolette for her and she grabbed on for dear life. She held his arm and just cried. She kept saying "he's so perfect, just so perfect." I agree, Grandma. Our baby couldn't have been more perfect.
I don't want to admit this, but the day they told us about his diagnosis, I had a pretty hardcore breakdown. I left as soon as our meeting ended, and I'm completely ashamed of that. I could have stayed all day, but I chose not to. I gave up precious moments because I was weak. I couldn't handle looking at Gavin without breaking down and crying, and I didn't want that to be how our moments with him went. I can't even type that without crying! Ugh. So we went home, as I badly needed to compose myself and digest some of what we had been bulldozed with. My eyes were so puffy it hurt to open them!
The next morning, I went back. I had a lot of people asking if they could come meet Gavin, but I really wanted some alone time to just be with my baby so I spent the day ignoring people. My parents and sister did end up coming, which was good because I ended up getting to hold Gavin for the first time so I had some photographers! It was quite a setup to get to hold him, having to set all his lines and vent just right so nothing was pulling... I almost felt bad that the nurses had to do it! But I desperately needed that connection, and I think they knew that. That was the first moment of happy I'd felt in a few days at least!
The next day (Monday) we had another care conference. All of Gavin's doctors and nurses and neurologists and social workers were there, which was incredibly overwhelming, and they wanted decisions (like we had any!). He was breathing on his own, always was, and he was ready to be extubated. There were many what-if scenarios, and many questions we did not have answers for. Did we want to be discharged and set up hospice in our home? I said if he reached the preemie milestones and was big enough to take home then hell yes we would- but if not, the care he needed was at the hospital. We could be there 24 hours a day- his doctors couldn't do that at our home. And seriously, he was less than 3 pounds! I'm convinced they asked this question in a moment of insanity. Did we want all cares and feedings stopped to allow natural death? I think this answer may have startled them, no way in hell will my son not be fed when he's hungry! Looking back, that was the one time I raised my voice. In that moment, and many to come, I fully understood the "mama bear" instinct. The entire situation was out of my control, but I felt a fierce need to protect him as much as I could. Then I cried. Big ugly tears. I didn't know what the right answers were, but we did the best we could.
*Side note: Anybody who saw the Grey's Anatomy episode about Morgan's premature baby that ended up dying that aired within a week or two of this, I could seriously hurt somebody for not warning me. That shit should come with a disclaimer.
Anyways. We decided to have a Meet Gavin day before he was extubated... just in case it didn't go well. We wanted to get it out of the way so we could spend our time just focusing on Gavin and not worrying about coordinating times for people to come and having to put on happy faces.. that sounds awful, but I just wanted to be alone. So Tuesday was the big day, and meet Gavin they did! It was a constant parade of visitors, and I'm sure he was just as worn out as we were by the end of the day, if not more. It was so so great to have so many people that care about us and our son, but it was an incredibly hard day because I knew as they were meeting him they were also having to say goodbye to him in case they didn't see him again. I know it was a hard thing for every single person, and I will always admire and love them for that. We were all able to keep it pretty light, "Yes, he sure is cute!" "Yep, that's definitely my nose!" "Definitely got daddy's feet!" but you could hear the pain in everybodys voices. I think the hardest was Nate's grandma. She was so incredibly heartbroken, but unlike the rest of us she was not trying to hide it. If you've never seen a grandma cry, let me tell you, it hurts. She asked if she could touch him so I opened up the isolette for her and she grabbed on for dear life. She held his arm and just cried. She kept saying "he's so perfect, just so perfect." I agree, Grandma. Our baby couldn't have been more perfect.
Monday, June 11, 2012
Break
Part 3 is coming soon, I promise. Life has been handing me a few more hurdles and I'm having a tough time. I'll be back!
Monday, May 7, 2012
Gavin's Life! Part 2. His first week.
Gavin was born at 2 lbs 8 oz, 16 inches long on March 26th, 2012. A few days earlier I had received two doses of betamethasone to mature his lungs, so when he was born he was able to breathe on his own but was working kind of hard at it so he got an ET tube placed to support his breathing. He had a hard time regulating his blood pressure, so he was on a dopamine drip and also insulin to control his blood sugar. Nate was able to be with him right away, but I had to wait until the next morning when I could get out of my hospital bed. I finally got there, and he was soooo teeny, but so perfect.
For the first 4 days of Gavin's life, it was a mix of medications and tests to figure out how to stabilize him better. He had lots of visitors and got to meet a lot of family! He liked to stretch out and show off his enormous feet and hands for everybody, and he definitely stole their hearts along with ours. On Day 4, they were going to do an MRI on Gavin, because we knew he had some fluid on his brain, and Dr. A told me they had done an ultrasound of his head and were a little concerned because his brain looked a little smooth. I of course went home and consulted Dr. Google. What I found was definitely not good. That was the point I began to get very worried, but I also knew that any time you look for a diagnosis on the internet you either come up with cancer or death, so I tried to move that to the back of my mind. I got a phone call that night that the neurology team wanted to meet with us on Saturday (Day 6).
Day 5. I arrived at the hospital and checked up on Gavin, I believe he was off of most of his medications at that point but was getting a blood transfusion for something. He looked good and wiggly and got really mad when I touched him with my chilly hands. I noticed at that moment that his sleeping position looked seriously uncomfortable, but after staring at him for awhile I realized that he was sleeping in the exact position that I do. On his side with his head cranked back, arms up and leg stuck out. And he was perfectly content. I held his hand and just smiled. After a few minutes, Dr. A came in and told me things were going well and he was pretty stable, and he wanted to tell me how the MRI went. He said we could wait to discuss it until the next day when Nate was coming for our meeting, but I have no patience and told him to get on with it. He proceeded to tell me that our Gavin would not live. He had lissencephaly, he said, and it wasn't my fault. I nodded my head and stared at my tiny and helpless son, numb. I had waited so long for him, and I wasn't going to be able to keep him. I started sobbing, and Dr. A kept apologizing. Gavin woke up from his comfortable sleep and started kicking and squirming and he did not calm down until I stopped crying. I made a decision at that moment, that my baby would not feel my pain. I didn't know how long we had with him, and he was going to feel nothing but love and our happiness that he had made us parents. I told Dr. A I would come back when I could compose myself better. If my son's life was going to be short, I was not going to let him feel one ounce of our sadness, because we were so incredibly happy to have him, no matter how the tides had turned.
Dr. A called me later that evening and said Gavin's genetics testing had come back, and he had Miller-Dieker syndrome, the same thing I had found on the internet the night before and was hoping so much that my Gavin did not have it. The life expectancy was extremely short, and the quality of life was not good. It was a life expectancy of pain and suffering, and I was horrified. I help people for a living, and in this instance there was absolutely nothing I could do to help my son. Helpless. Useless. I decided to stick with the only plan of action I could come up with, just love him hard for as long as he would let me. He would not see sad tears, he did not get to feel my pain.
We did meet with the neurology team the next morning. They repeated everything Dr. A had already filled me in on. They showed us the MRI of Gavin's brain, and used a lot of different ways to explain the progression of his syndrome. Among other things, there would be seizures... profound mental retardation... loss of muscle tone... breathing difficulty... feeding difficulty... and ultimately, death. I sobbed, again.
I don't know why, but I feel the need to clarify something. Throughout our prenatal testing, we found out about certain issues the baby had. We knew that he more than likely wouldn't be the definition of "normal". We knew he would have some sort of delays, and we did.not.care. That little boy could not have been more perfect in our eyes, and always was and would have been. My little Gavin, he was made for me.
For the first 4 days of Gavin's life, it was a mix of medications and tests to figure out how to stabilize him better. He had lots of visitors and got to meet a lot of family! He liked to stretch out and show off his enormous feet and hands for everybody, and he definitely stole their hearts along with ours. On Day 4, they were going to do an MRI on Gavin, because we knew he had some fluid on his brain, and Dr. A told me they had done an ultrasound of his head and were a little concerned because his brain looked a little smooth. I of course went home and consulted Dr. Google. What I found was definitely not good. That was the point I began to get very worried, but I also knew that any time you look for a diagnosis on the internet you either come up with cancer or death, so I tried to move that to the back of my mind. I got a phone call that night that the neurology team wanted to meet with us on Saturday (Day 6).
Day 5. I arrived at the hospital and checked up on Gavin, I believe he was off of most of his medications at that point but was getting a blood transfusion for something. He looked good and wiggly and got really mad when I touched him with my chilly hands. I noticed at that moment that his sleeping position looked seriously uncomfortable, but after staring at him for awhile I realized that he was sleeping in the exact position that I do. On his side with his head cranked back, arms up and leg stuck out. And he was perfectly content. I held his hand and just smiled. After a few minutes, Dr. A came in and told me things were going well and he was pretty stable, and he wanted to tell me how the MRI went. He said we could wait to discuss it until the next day when Nate was coming for our meeting, but I have no patience and told him to get on with it. He proceeded to tell me that our Gavin would not live. He had lissencephaly, he said, and it wasn't my fault. I nodded my head and stared at my tiny and helpless son, numb. I had waited so long for him, and I wasn't going to be able to keep him. I started sobbing, and Dr. A kept apologizing. Gavin woke up from his comfortable sleep and started kicking and squirming and he did not calm down until I stopped crying. I made a decision at that moment, that my baby would not feel my pain. I didn't know how long we had with him, and he was going to feel nothing but love and our happiness that he had made us parents. I told Dr. A I would come back when I could compose myself better. If my son's life was going to be short, I was not going to let him feel one ounce of our sadness, because we were so incredibly happy to have him, no matter how the tides had turned.
Dr. A called me later that evening and said Gavin's genetics testing had come back, and he had Miller-Dieker syndrome, the same thing I had found on the internet the night before and was hoping so much that my Gavin did not have it. The life expectancy was extremely short, and the quality of life was not good. It was a life expectancy of pain and suffering, and I was horrified. I help people for a living, and in this instance there was absolutely nothing I could do to help my son. Helpless. Useless. I decided to stick with the only plan of action I could come up with, just love him hard for as long as he would let me. He would not see sad tears, he did not get to feel my pain.
We did meet with the neurology team the next morning. They repeated everything Dr. A had already filled me in on. They showed us the MRI of Gavin's brain, and used a lot of different ways to explain the progression of his syndrome. Among other things, there would be seizures... profound mental retardation... loss of muscle tone... breathing difficulty... feeding difficulty... and ultimately, death. I sobbed, again.
I don't know why, but I feel the need to clarify something. Throughout our prenatal testing, we found out about certain issues the baby had. We knew that he more than likely wouldn't be the definition of "normal". We knew he would have some sort of delays, and we did.not.care. That little boy could not have been more perfect in our eyes, and always was and would have been. My little Gavin, he was made for me.
Wednesday, April 25, 2012
Gavin's Life! Part 1. Pregnancy.
I've been asked by several people about my Gavin's story. I love to share it, and it usually ends up being an hours long conversation where I bring the other person to tears. I don't try to do that, I promise, but I'm pretty open and honest about it. There's your warning.
I suppose the beginning would be a great place to start, but I'm not sure where that beginning really is. I've had several pregnancy losses over the last few years. Devastating, those little buggers. So be assured, Gavin was very very very very wanted. I spent the first few months of my pregnancy with him afraid that I would lose him too. Once we got to the 20 week mark, I finally relaxed a little and started to believe that I might actually have a baby! Around that time, we had some abnormal test results that sent us to the cities for more testing, and I wrote about those visits already so I won't bore anybody with those details. As I write this, I realize there may be others with similar problems and I want to be able to help if I am able, so if there are ever any pregnant people reading this, my abnormal test results were from a quad screen, and I tested high for a neural tube defect, which turned out to not even be an issue. I find that I can't delete my words after I speak them, and I like to blog how I talk. It often ends up in random unorganized messes, but such is my life!
Anyways. Pregnancy was pretty difficult on me, physically. I literally threw up for 6 months. I had polyhydramnios, too much amniotic fluid, and that makes every aspect of life just plain uncomfortable. At the end of my pregnancy with a 2.5 lb baby in there at 32 weeks, I was measuring at 40. I couldn't sit, I couldn't lie down, if I stood for more than half hour my legs swelled to the size of tree trunks, I just hurt all the time. Then one random Monday (32 weeks and 5 days, I believe) I went for a check-up with my normal doctor and my blood pressure was 180/112 and I was apparently having regular contractions, although I wasn't feeling them. She sent me to the hospital in the cities via the ambulance service I work for, lights and sirens, with my co-workers in charge of my care. I was pretty embarrassed about the whole thing and really just wanted to go by private vehicle, but apparently I was at a pretty significant risk for a seizure or a stroke, so my doctor was having none of that idea. I got to Riverside around 4:30, Nate got there probably around 6:30. They did several UA tests, because the triad of pre-eclampsia is hypertension, edema, and protein in the urine. My first UA came back negative, and they explained to me that sometimes when your protein gets so high it kind of cancels itself out. The second UA tested it in a different way and as they expected, it was off the charts. That's about when Nate arrived, and they informed us that our baby would be arriving that night. They gave me the choice of how I wanted to attempt to deliver, but said if we tried the normal method there was about a 50% chance that he would be in distress and we would have to go with an emergency c-section. There is nothing that scares me more than the words "emergency" and "surgery" in the same phrase. I just picture mass chaos and scalpels flying everywhere.. so I chose the planned, much more relaxed surgery. (I know this is warped thinking and that's not what actually happens.) Around 8:30 pm, we were wheeled down for surgery, my first ever.
I was given a spinal block, and then the curtain went up. A spinal block is very misleading, as it turns out it only blocks pain, and everything else is very very much felt. I could feel the cutting, I could feel the pulling and yanking and I felt when they broke my water. (I also heard it when it hit the floor! No joke!) I felt when they pulled my baby out and told us he was a boy, which we already knew. 9:08 pm. Nate went over to see him as the NICU team did their thing and I got to hear Gavin squawk a few times from across the room before he got his tube put in. I remember being so happy about that tiny little cry, because it made me believe that he was going to be okay. I knew that he was getting the best care he possibly could, and everything would be fine. That was the point I finally let myself relax, and I rolled over as well as I could and threw up. They brought Gavin over for me to see and he was all bundled up so all I could see was his face. I thought he was so so tiny, but he looked good. I cried, and he was whisked away to the NICU.
That's pretty much the end of my part of the story, because that's where Gavin's begins.
I wrote earlier about the pregnant part of this whole equation, and I do have to add that as much as it sucked, I wouldn't change it for the world. I will never ever whine or complain about being pregnant, because without the 7 months of crap, I wouldn't have gotten my Gavin. I'd go through worlds of pain for that boy, if only that would help.
I suppose the beginning would be a great place to start, but I'm not sure where that beginning really is. I've had several pregnancy losses over the last few years. Devastating, those little buggers. So be assured, Gavin was very very very very wanted. I spent the first few months of my pregnancy with him afraid that I would lose him too. Once we got to the 20 week mark, I finally relaxed a little and started to believe that I might actually have a baby! Around that time, we had some abnormal test results that sent us to the cities for more testing, and I wrote about those visits already so I won't bore anybody with those details. As I write this, I realize there may be others with similar problems and I want to be able to help if I am able, so if there are ever any pregnant people reading this, my abnormal test results were from a quad screen, and I tested high for a neural tube defect, which turned out to not even be an issue. I find that I can't delete my words after I speak them, and I like to blog how I talk. It often ends up in random unorganized messes, but such is my life!
Anyways. Pregnancy was pretty difficult on me, physically. I literally threw up for 6 months. I had polyhydramnios, too much amniotic fluid, and that makes every aspect of life just plain uncomfortable. At the end of my pregnancy with a 2.5 lb baby in there at 32 weeks, I was measuring at 40. I couldn't sit, I couldn't lie down, if I stood for more than half hour my legs swelled to the size of tree trunks, I just hurt all the time. Then one random Monday (32 weeks and 5 days, I believe) I went for a check-up with my normal doctor and my blood pressure was 180/112 and I was apparently having regular contractions, although I wasn't feeling them. She sent me to the hospital in the cities via the ambulance service I work for, lights and sirens, with my co-workers in charge of my care. I was pretty embarrassed about the whole thing and really just wanted to go by private vehicle, but apparently I was at a pretty significant risk for a seizure or a stroke, so my doctor was having none of that idea. I got to Riverside around 4:30, Nate got there probably around 6:30. They did several UA tests, because the triad of pre-eclampsia is hypertension, edema, and protein in the urine. My first UA came back negative, and they explained to me that sometimes when your protein gets so high it kind of cancels itself out. The second UA tested it in a different way and as they expected, it was off the charts. That's about when Nate arrived, and they informed us that our baby would be arriving that night. They gave me the choice of how I wanted to attempt to deliver, but said if we tried the normal method there was about a 50% chance that he would be in distress and we would have to go with an emergency c-section. There is nothing that scares me more than the words "emergency" and "surgery" in the same phrase. I just picture mass chaos and scalpels flying everywhere.. so I chose the planned, much more relaxed surgery. (I know this is warped thinking and that's not what actually happens.) Around 8:30 pm, we were wheeled down for surgery, my first ever.
I was given a spinal block, and then the curtain went up. A spinal block is very misleading, as it turns out it only blocks pain, and everything else is very very much felt. I could feel the cutting, I could feel the pulling and yanking and I felt when they broke my water. (I also heard it when it hit the floor! No joke!) I felt when they pulled my baby out and told us he was a boy, which we already knew. 9:08 pm. Nate went over to see him as the NICU team did their thing and I got to hear Gavin squawk a few times from across the room before he got his tube put in. I remember being so happy about that tiny little cry, because it made me believe that he was going to be okay. I knew that he was getting the best care he possibly could, and everything would be fine. That was the point I finally let myself relax, and I rolled over as well as I could and threw up. They brought Gavin over for me to see and he was all bundled up so all I could see was his face. I thought he was so so tiny, but he looked good. I cried, and he was whisked away to the NICU.
That's pretty much the end of my part of the story, because that's where Gavin's begins.
I wrote earlier about the pregnant part of this whole equation, and I do have to add that as much as it sucked, I wouldn't change it for the world. I will never ever whine or complain about being pregnant, because without the 7 months of crap, I wouldn't have gotten my Gavin. I'd go through worlds of pain for that boy, if only that would help.
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