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.
Tuesday, October 23, 2012
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
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