Whew, I'm tired.
The first day of work at my new job was conquered.
Bunco was hosted (and still needs to be cleaned up).
We made our trip to UW to share our story.
A lot of stress eating has been done.
I'm still processing the events of today, but I will share soon.
For now, I have some boys that I haven't seen enough of the past few days that need some serious snuggle and play time, whether they like it or not.
Thursday, November 14, 2013
Monday, November 11, 2013
Miss Emotional
I know I'm overdue for posting some pictures of the boys, they're coming, I promise! I have been a bit emotional lately and it's slowing me down. My friend, whose first baby was a 28 week preemie, was admitted to the hospital in labor. They were able to stop it and she is still there on bedrest. Please continue to keep her in your prayers!
I also turned in my badge at my old job last week and will be starting my new job this week.
And then on Wednesday we will be heading down to UW to speak at the bereavement training for the NICU nurses. I'm hoping I can keep it together enough to say something worthwhile.
And, the holidays are upon us. I have always loved Christmas, but since Carter died they've just been so different. We have laid pretty low the last 2 years and I don't regret it. I still love the holidays and I love getting to experience them with my family, but I am also keenly aware that there is another little boy that I don't get to celebrate with.
Oh, and the set of twin boys with their matching bikes and helmets riding down the street didn't help either. Their dad probably wondered why I just couldn't stop staring at them.
I'm a little bit of a wreck right now.
I also turned in my badge at my old job last week and will be starting my new job this week.
And then on Wednesday we will be heading down to UW to speak at the bereavement training for the NICU nurses. I'm hoping I can keep it together enough to say something worthwhile.
And, the holidays are upon us. I have always loved Christmas, but since Carter died they've just been so different. We have laid pretty low the last 2 years and I don't regret it. I still love the holidays and I love getting to experience them with my family, but I am also keenly aware that there is another little boy that I don't get to celebrate with.
Oh, and the set of twin boys with their matching bikes and helmets riding down the street didn't help either. Their dad probably wondered why I just couldn't stop staring at them.
I'm a little bit of a wreck right now.
Friday, November 8, 2013
A Favor
Danny and I have to opportunity to share our story next week at a bereavement training class for NICU nurses. I feel like I have a million things I could say and nothing to say at the same time. So maybe you can help us out a bit? What has stood out to you most about our journey? What have you found helpful in better understanding the life of a grieving family? What have you learned about baby loss or grief? Or what is something that you have been glad that we have shared along the way?
Thanks! :)
Thanks! :)
Thursday, November 7, 2013
In Good Company
The soup warmed on the stove. There was excited yelling as the kids ran around the house. We gathered in the living room, some on the couch, some on the floor. Rainbow babies and surviving children played. Our conversations went from life to death. There was laughter and tears. And? It just felt comfortable.
It wasn't just any ordinary gathering. It was a group of people with something in common: loss. It's a pretty crappy thing to have in common, but it's amazing to have the support of people who get it. Not just say they get it, but actually get it. Because they've been there, or are there.
We can talk about life and death in the same sentence. We can talk about our shattered dreams and even our hope for the future. We don't have to worry about making others feel bad or whether we will get looks of pity. Conversations that would normally end with awkward statements or uncomfortable silences feel natural and unforced. The silences aren't uncomfortable, instead they are full of understanding. Heads nod as we take turns sharing because we get it. We have been loved and we have been hurt. We have loved deeply and lost greatly. In this space, I feel safe and supported. I don't worry about being judged for feelings and emotions that others would consider strange or over the top. And it's all okay. We get to speak freely and it gets to be normal (whatever that is).
I hate that anyone has to be in this "club" with me, but I am so thankful that I'm not alone.
It wasn't just any ordinary gathering. It was a group of people with something in common: loss. It's a pretty crappy thing to have in common, but it's amazing to have the support of people who get it. Not just say they get it, but actually get it. Because they've been there, or are there.
We can talk about life and death in the same sentence. We can talk about our shattered dreams and even our hope for the future. We don't have to worry about making others feel bad or whether we will get looks of pity. Conversations that would normally end with awkward statements or uncomfortable silences feel natural and unforced. The silences aren't uncomfortable, instead they are full of understanding. Heads nod as we take turns sharing because we get it. We have been loved and we have been hurt. We have loved deeply and lost greatly. In this space, I feel safe and supported. I don't worry about being judged for feelings and emotions that others would consider strange or over the top. And it's all okay. We get to speak freely and it gets to be normal (whatever that is).
I hate that anyone has to be in this "club" with me, but I am so thankful that I'm not alone.
Tuesday, November 5, 2013
Welcome Back!
Welcome back! We've missed you (even though you are all a little quiet). I quite enjoyed getting little snippets from those of you who wrote to read during our brief hiatus. I am almost finished with fixing everything up, although it really won't change anything for most of you since the majority of changes were made to older posts (deleting lots of NICU pictures and putting obnoxious wording across the remaining ones).
Anyway, making the blog private was proving to be more time consuming than just making the changes I wanted to make. So I kicked it into high gear and here we are! Thanks for putting up with us!
Anyway, making the blog private was proving to be more time consuming than just making the changes I wanted to make. So I kicked it into high gear and here we are! Thanks for putting up with us!
Seeing What I See
Cohen's sensory needs have been subtle to the outside world. When he is in a different environment, it's enough new stimulation for him to get what he needs and he is able to hold still, play, and even be fairly calm most times.
At home, it's different. He's not naughty. He's busy, wild, almost frantic at times. His need for sensory input and stimulation is higher. He gets so wound up that he becomes increasingly clumsy, "needy" (he yells "see mom", "see dad" and NEEDS to be like right.on.top of us even when we are right there with him), and anxious.
When I think about it, it makes total sense. The nervous system doesn't finish developing until late in pregnancy and Cohen didn't get that chance. Not only did his system not get a chance to fully develop, he was put into an environment, even though the NICU did the best they could, that was far from womb like. He had a tube down his throat, lights, noises and lots of frequent activity. When Cohen was tiny, we weren't allowed to rub or stroke him or do any gentle touching for this reason. The only way we were allowed to touch and hold him was by cupping his tiny body between our hands, one on his head and one on his feet and giving him that "closed in" feeling. His brain didn't know how to process it then, and still doesn't know how to process it now.
He's not naughty, he's not doing it on purpose, his little body just doesn't know how to handle everything that's thrown at him and he just is like a top spinning out of control. There are days where he literally does not stop moving. Where you can see his little body almost shaking. His mind is ahead of his body and he can't physically keep up with what he wants to do and that doesn't help either. He gets anxious and almost frantic. When he gets like this, he can't play independently, he can't calm himself down, and often times we can't either.
It's so frustrating to not be able to help your child. We don't know what's going to cause him to get to that phase. We don't know how to stop him from getting there. Danny and I often send each other text messages that are either "Cohen is being really strangely calm today" or "Cohen is impossible". And again, NOT that he's being naughty but that it's just one of those days where you can't find the right book, you can't pick the right food, you can't give enough attention even though you are giving all your attention. And it's tiring. And it makes me feel horribly guilty for running out of patience and wanting a break.
But finally, someone other than Danny and I saw it. Sure, other people get glimpses from time to time, but today, someone really saw how we live 80% of our days. I'm glad that someone finally sees and understands, but I'm also sad and frustrated that Cohen has to spend his days like this. I don't want him to be anxious and feel out of control. It stresses me out just watching him run around and fall and not be able to focus on anything, I can only imagine what it feels like to him and I can't fix it. A hard day, but glad to be validated.
At home, it's different. He's not naughty. He's busy, wild, almost frantic at times. His need for sensory input and stimulation is higher. He gets so wound up that he becomes increasingly clumsy, "needy" (he yells "see mom", "see dad" and NEEDS to be like right.on.top of us even when we are right there with him), and anxious.
When I think about it, it makes total sense. The nervous system doesn't finish developing until late in pregnancy and Cohen didn't get that chance. Not only did his system not get a chance to fully develop, he was put into an environment, even though the NICU did the best they could, that was far from womb like. He had a tube down his throat, lights, noises and lots of frequent activity. When Cohen was tiny, we weren't allowed to rub or stroke him or do any gentle touching for this reason. The only way we were allowed to touch and hold him was by cupping his tiny body between our hands, one on his head and one on his feet and giving him that "closed in" feeling. His brain didn't know how to process it then, and still doesn't know how to process it now.
He's not naughty, he's not doing it on purpose, his little body just doesn't know how to handle everything that's thrown at him and he just is like a top spinning out of control. There are days where he literally does not stop moving. Where you can see his little body almost shaking. His mind is ahead of his body and he can't physically keep up with what he wants to do and that doesn't help either. He gets anxious and almost frantic. When he gets like this, he can't play independently, he can't calm himself down, and often times we can't either.
It's so frustrating to not be able to help your child. We don't know what's going to cause him to get to that phase. We don't know how to stop him from getting there. Danny and I often send each other text messages that are either "Cohen is being really strangely calm today" or "Cohen is impossible". And again, NOT that he's being naughty but that it's just one of those days where you can't find the right book, you can't pick the right food, you can't give enough attention even though you are giving all your attention. And it's tiring. And it makes me feel horribly guilty for running out of patience and wanting a break.
But finally, someone other than Danny and I saw it. Sure, other people get glimpses from time to time, but today, someone really saw how we live 80% of our days. I'm glad that someone finally sees and understands, but I'm also sad and frustrated that Cohen has to spend his days like this. I don't want him to be anxious and feel out of control. It stresses me out just watching him run around and fall and not be able to focus on anything, I can only imagine what it feels like to him and I can't fix it. A hard day, but glad to be validated.
Saturday, November 2, 2013
The Busy Season
November is here and we are entering the busy season. I love the holidays, but I hate being so busy that I feel like I'm just chasing my tail trying to get things done and keep up with everything.
And on top of the busy season arriving, I'm starting a new job! I've been talking about finding a new job for awhile now and it all just kind of happened, and I'm hoping it will be a good change. I'm moving from the surgery center over to a urologists office (fondly known as "the pee palace") where I will be doing PACU (recovery - same as at the surgery center) and probably some other office/helping with procedural type stuff as well. I'm going from on day a week to two days. I would love to be able to stay home with my boys full time, but it's just not a reality right now. So please keep me in my prayers as I go through the whole "new job" process of learning new co-workers, doctors, environments etc.
Danny and I will also be going down to UW, the hospital the boys were born at, to share our story at a bereavement training session for NICU nurses. I am so thankful and impressed that they are doing this program. I was somewhat surprised that they didn't seem to have an official bereavement program in L&D while we were there, or maybe it just wasn't well organized, but they are a huge hospital that sees a lot of losses. So, I'm glad they are at least developing this program in the NICU and hopefully it will carry over to L&D as well.
Cohen is as busy as ever, if not busier. He hates being stuck in the house, it makes him (and me) stir crazy. We are doing lots of baths, playing cars in paint, and playing outside when we can. It just dawned on me today that because he is still physically a little iffy (can't jump, doesn't like to feel like his feet aren't firm on the ground, not such a great runner) that he needs the input from other places. We can't just tell him to go jump on a trampoline or run outside because he can't quite physically do those things yet. Ideas for extra stimulating activities welcome.
Ezra is still as cute as ever. Aside from his non-napping habits, he is a really good baby. He is always smiling and is happy just to sit and hang out or roll around on the floor. He has been getting up on his knees and pushing himself onto his face and today I caught him on all fours. So not okay. I need him to stop growing up so fast!!
That's the weekly news around here. Thank you all for continuing to support our little family and for reading along. It's been really fun to hear little snippets of who is "out there" when I get emails to keep reading since we went private. I'm sorry I haven't gotten a chance to respond to all of you, but it is fun to hear about you and your families as well.
And on top of the busy season arriving, I'm starting a new job! I've been talking about finding a new job for awhile now and it all just kind of happened, and I'm hoping it will be a good change. I'm moving from the surgery center over to a urologists office (fondly known as "the pee palace") where I will be doing PACU (recovery - same as at the surgery center) and probably some other office/helping with procedural type stuff as well. I'm going from on day a week to two days. I would love to be able to stay home with my boys full time, but it's just not a reality right now. So please keep me in my prayers as I go through the whole "new job" process of learning new co-workers, doctors, environments etc.
Danny and I will also be going down to UW, the hospital the boys were born at, to share our story at a bereavement training session for NICU nurses. I am so thankful and impressed that they are doing this program. I was somewhat surprised that they didn't seem to have an official bereavement program in L&D while we were there, or maybe it just wasn't well organized, but they are a huge hospital that sees a lot of losses. So, I'm glad they are at least developing this program in the NICU and hopefully it will carry over to L&D as well.
Cohen is as busy as ever, if not busier. He hates being stuck in the house, it makes him (and me) stir crazy. We are doing lots of baths, playing cars in paint, and playing outside when we can. It just dawned on me today that because he is still physically a little iffy (can't jump, doesn't like to feel like his feet aren't firm on the ground, not such a great runner) that he needs the input from other places. We can't just tell him to go jump on a trampoline or run outside because he can't quite physically do those things yet. Ideas for extra stimulating activities welcome.
Ezra is still as cute as ever. Aside from his non-napping habits, he is a really good baby. He is always smiling and is happy just to sit and hang out or roll around on the floor. He has been getting up on his knees and pushing himself onto his face and today I caught him on all fours. So not okay. I need him to stop growing up so fast!!
That's the weekly news around here. Thank you all for continuing to support our little family and for reading along. It's been really fun to hear little snippets of who is "out there" when I get emails to keep reading since we went private. I'm sorry I haven't gotten a chance to respond to all of you, but it is fun to hear about you and your families as well.
Subscribe to:
Posts (Atom)