I've never been great at facing my emotions head on, even worse after receiving the Encephalocele diagnosis when I was pregnant with Naysa and everything that followed. I am Scarlet O'Hara and will forever Fiddle Dee Dee & think about it tomorrow. And so, I run. I distract myself with outings and adventures, books and movies, I do whatever I can do to avoid thinking, to avoid being alone with my thoughts. But then the night comes, doesn't it? The stillness, the quiet and I yearn for peace. I replay and rewind, I am ambushed by pangs of guilt and the deepest sorrow I hope you never know exists.
Today marks one month she's been gone and it feels like an eternity and like no time has passed at all. It is surreal and sickening. I look for signs, reminders, proof she is still with us. I fail at being a decent mother to her brothers, every day. I yell too much, I get irritated too quickly, I am completely touched out. It's hard to remember they are grieving too because I am so focused on the injustice of it all. My sweet, sensitive boys and my beautiful husband...I am so sorry. I am trying. I think I am, at least. It feels like it. Benjamin, more than once you've found me sobbing on the bathroom floor and I cannot put into words how comforting your embrace is and the way you push through your own tears to bring me comfort in the best way your broken heart knows how. I love you, more than you will ever know.
I have not a clue what this year holds for our family and it's so hard to find things to look forward to knowing she won't be apart of it.
Thursday, January 3, 2019
Sunday, December 16, 2018
Writing has always been healing for me. I am much better at expressing emotion through the written word rather than fumbling around with my speech. But this....this loss. I don't know if it will be healing, I'm not sure much of anything will at present.
Naysa Diane,
The world watched as we awaited your arrival March 22nd 2011. The excitement, anxiety, hope your dad and I had was felt by all who already loved you. At 9:22am you were here and our lives were changed forever, oh but we had NO idea just how much! From day one, you touched thousands of lives, you, this tiny 7lb 13oz (really, 6lb 11oz without the Encephalocele) won hearts the world over just by merely taking those first breaths at birth and defying absolutely everything and everyone.
You made me a mother, you challenged my views and turned me into an outspoken assertive mama bear. In your birth I was also born. I was made strong, powerful, relentless. In your death....I don't know who I am anymore, not yet. I am angry, I am sorrowful, I am irritable, my patience is paper thin. For almost 8 years I found my purpose in you. How can I mother your brothers when my heart is so brittle? They need my love and reassurance and all I can seem to do is snap at them. How do we navigate this life now without you in it? So many mornings I've had to catch myself from going back to your room, expecting to hear you yelling at me and clapping, seeing your smile and excitement when I grab a fresh diaper and start your feed. I want to hear your voice echo in pure delight as your brothers create chaos around you.
Well meaning people keep asking how we are, what they do can do for us, etc & I honestly do not have an answer. We are not okay. I'm not sure we ever will be again. Would you? We are permanently altered as individuals and a family.
I keep thinking this would be easier if we were prepared, but I know that's untrue. We've subconsciously been preparing for this since the day you were born, but always figured we would have time to say goodbye. That you would just get sick and we'd have a chance to gather family and friends to kiss you one last time. We'd be prepared, wouldn't we? NEVER did I think I would put you to bed one night and you would be gone. We had so many plans, so many trips, so many things we still wanted to do with and for you. That's the trouble, isn't it? We always think we have time.
Tomorrow will be two weeks. I carry so much guilt. I don't know how to do this.
Naysa Diane,
The world watched as we awaited your arrival March 22nd 2011. The excitement, anxiety, hope your dad and I had was felt by all who already loved you. At 9:22am you were here and our lives were changed forever, oh but we had NO idea just how much! From day one, you touched thousands of lives, you, this tiny 7lb 13oz (really, 6lb 11oz without the Encephalocele) won hearts the world over just by merely taking those first breaths at birth and defying absolutely everything and everyone.
You made me a mother, you challenged my views and turned me into an outspoken assertive mama bear. In your birth I was also born. I was made strong, powerful, relentless. In your death....I don't know who I am anymore, not yet. I am angry, I am sorrowful, I am irritable, my patience is paper thin. For almost 8 years I found my purpose in you. How can I mother your brothers when my heart is so brittle? They need my love and reassurance and all I can seem to do is snap at them. How do we navigate this life now without you in it? So many mornings I've had to catch myself from going back to your room, expecting to hear you yelling at me and clapping, seeing your smile and excitement when I grab a fresh diaper and start your feed. I want to hear your voice echo in pure delight as your brothers create chaos around you.
Well meaning people keep asking how we are, what they do can do for us, etc & I honestly do not have an answer. We are not okay. I'm not sure we ever will be again. Would you? We are permanently altered as individuals and a family.
I keep thinking this would be easier if we were prepared, but I know that's untrue. We've subconsciously been preparing for this since the day you were born, but always figured we would have time to say goodbye. That you would just get sick and we'd have a chance to gather family and friends to kiss you one last time. We'd be prepared, wouldn't we? NEVER did I think I would put you to bed one night and you would be gone. We had so many plans, so many trips, so many things we still wanted to do with and for you. That's the trouble, isn't it? We always think we have time.
Tomorrow will be two weeks. I carry so much guilt. I don't know how to do this.
Tuesday, January 2, 2018
Toes
Wow...I didn't blog AT ALL in 2017! I really need to be better about this, but I know most of ya'll follow the current events through Nay's facebook page (A Naybug's Life)
Disclaimer, this isn't a Happy New Year, fun and exciting post.
Something made me unexpectedly sad tonight. Something I've done so many times, so why it bothers me tonight...I don't know.
I painted her toes. Her fat, incredibly soft and warm little toes. I'd like to say we got to do this the way most moms with 6 year old daughters do, with curlers in our hair and junk food surrounding us gossiping about her first grade class. Or maybe that's just what I imagine we would do, if we could.
But, alas...with a Nay, you must sneak into her room when she is in a good and deep REM and paint in the dark with a flashlight.
I guess the reality hit me while I was hovered over her sweet smelling toes, with a flashlight in my mouth and the brush in hand, that this is how it will forever be. There will be no fun mommy-daughter trips to the salon to pamper those little tootsies in a spa pedi. There will be no gossip and junk food. There will be no curlers and robes.
I'm just....sad, I guess. I honestly never really allow myself to feel this stuff when it comes to Naysa. I have to numb my heart and mind against it. If I sat and thought about all of special mother-daughter things we've missed out of the past 6 (almost 7!) years I'm not sure I would or could recover.
I wanted to take her out yesterday, just her and I, to go do something, but the ramp in my van decided it's not going to work anymore! So that's fun.
I need to cut this short so I can cut these emotions off too before they become overwhelming.
I truly hope this year is positive for us, for you, for our planet. We need that. We need a win.
Happy New Year, beautiful humans <3
Monday, June 20, 2016
PSA
I know I know...I've been slacking in updates and it's been far too long, I still have yet to write about our incredible Make A Wish trip and stay at Give Kids the World and I promise I will totally get to that in the next post.
Recently I overheard a child (who is a family member and knows Naysa) tell an adult (that said child had never met before) that Naysa's brain is "messed up" then proceeded to ask me "when her brain will be fixed."
I get it. I do. Explaining disabilities or any differences to a child in ways they will understand is hard. You want to do it so they actually comprehend without overwhelming them with complicated reasons and big words.
But, here's the thing...if you want your child to not only understand but to LOVE and ACCEPT others who differ from themselves, telling them my daughter's brain is "messed up" is NOT the way to do that. Trust me, I have explained Naysa to little kids her whole life. At the playground when an excited little girl sees her in the stroller and asks why she doesn't talk to her...at a birthday party when all the other kids are running around, playing and one sweet soul tries to include her then realizes she's different and asks questions. Kids are naturally curious. They are also naturally loving, gentle, forgiving and inclusive. What YOU as the parent, caregiver, grandparent, etc say and model is what they will form their views from and base they opinions around.
A few things to say instead:
"You know, her brain is just a little different. Everyone's brains are different, that's what makes our world so neat!"
"Sometimes, when babies are growing in their mommy's bellies, something happens to make them different. No one really knows why"
Depending on the child's age, you should know an appropriate response. But for the love of GOD, please don't EVER tell a kid anyone is "messed up" and needs fixing. Do not put a negative or bad association of disability and different in their minds. Unique, Diverse...Special....let's go with those undertones, yeah?
It completely and utterly breaks my heart when I see a curious kid look at Nay and a parent quickly shuffles them away or tells them to stop staring. A better response would be "Do you want to say hi to the little girl?" Please don't shame your children for their curiosity. Teach them, be a positive role model. If your kid wants to ask me questions, please let them...I've had 5 years now of experience answering them and kids are so accepting if given the chance.
Recently I overheard a child (who is a family member and knows Naysa) tell an adult (that said child had never met before) that Naysa's brain is "messed up" then proceeded to ask me "when her brain will be fixed."
I get it. I do. Explaining disabilities or any differences to a child in ways they will understand is hard. You want to do it so they actually comprehend without overwhelming them with complicated reasons and big words.
But, here's the thing...if you want your child to not only understand but to LOVE and ACCEPT others who differ from themselves, telling them my daughter's brain is "messed up" is NOT the way to do that. Trust me, I have explained Naysa to little kids her whole life. At the playground when an excited little girl sees her in the stroller and asks why she doesn't talk to her...at a birthday party when all the other kids are running around, playing and one sweet soul tries to include her then realizes she's different and asks questions. Kids are naturally curious. They are also naturally loving, gentle, forgiving and inclusive. What YOU as the parent, caregiver, grandparent, etc say and model is what they will form their views from and base they opinions around.
A few things to say instead:
"You know, her brain is just a little different. Everyone's brains are different, that's what makes our world so neat!"
"Sometimes, when babies are growing in their mommy's bellies, something happens to make them different. No one really knows why"
Depending on the child's age, you should know an appropriate response. But for the love of GOD, please don't EVER tell a kid anyone is "messed up" and needs fixing. Do not put a negative or bad association of disability and different in their minds. Unique, Diverse...Special....let's go with those undertones, yeah?
It completely and utterly breaks my heart when I see a curious kid look at Nay and a parent quickly shuffles them away or tells them to stop staring. A better response would be "Do you want to say hi to the little girl?" Please don't shame your children for their curiosity. Teach them, be a positive role model. If your kid wants to ask me questions, please let them...I've had 5 years now of experience answering them and kids are so accepting if given the chance.
Monday, April 4, 2016
Cycling Through
The Cycle.
I've written of it before, but for those who are new or may not remember...I'll enlighten you.
This cycle comes out of no where, it's crushing and awful. Sometimes I just have to write and have a good cry, sometimes it lasts for days, weeks or turns into depression. Maybe it's because I haven't dealt with the emotional turmoil Naysa's strokes truly caused me, maybe it's just a normal part of this life. Since her 5th birthday (March 22) I've felt an overwhelming sadness. I am so used to pushing it back and trying to just be grateful that she's here, which I absolutely am... but I still mourn. She is not where I thought or hoped she would be with therapy or progression from her strokes at this age, I am grieving again in this cycle...of the daughter I just don't have.
It would be dishonest of me to say I'm not envious of my friends with healthy little girls. They will have tea parties and play dolls, go on manicure dates, talk and have conversations... I will never have that. And you know what? It just sucks sometimes. Part of me had hoped Rowan was a girl so I could experience these things, I can't explain the horrible guilt I felt for feeling slightly sad when Ben announced he was a boy.
I have an internal struggle of feeling like just giving up, like what's the point in pushing her. All of the therapy, the school...it's not getting her anywhere and it's just frustrating me. But on the flip side, I KNOW she is capable of learning and gaining new skills, she loves a challenge. When I decided to carry her to term ignoring the pressures from doctors to terminate I decided to give her every chance in the world, to fight for her, to advocate and make that life long commitment to helping her knowing full well she would likely not be able to help herself.
She's 5 now...F I V E! That's a great triumph in itself of a girl who wasn't expected to live but a few hours. I am proud and humbled of who she is, what she's endured...Why can't I just be happy with that?
I've written of it before, but for those who are new or may not remember...I'll enlighten you.
This cycle comes out of no where, it's crushing and awful. Sometimes I just have to write and have a good cry, sometimes it lasts for days, weeks or turns into depression. Maybe it's because I haven't dealt with the emotional turmoil Naysa's strokes truly caused me, maybe it's just a normal part of this life. Since her 5th birthday (March 22) I've felt an overwhelming sadness. I am so used to pushing it back and trying to just be grateful that she's here, which I absolutely am... but I still mourn. She is not where I thought or hoped she would be with therapy or progression from her strokes at this age, I am grieving again in this cycle...of the daughter I just don't have.
It would be dishonest of me to say I'm not envious of my friends with healthy little girls. They will have tea parties and play dolls, go on manicure dates, talk and have conversations... I will never have that. And you know what? It just sucks sometimes. Part of me had hoped Rowan was a girl so I could experience these things, I can't explain the horrible guilt I felt for feeling slightly sad when Ben announced he was a boy.
I have an internal struggle of feeling like just giving up, like what's the point in pushing her. All of the therapy, the school...it's not getting her anywhere and it's just frustrating me. But on the flip side, I KNOW she is capable of learning and gaining new skills, she loves a challenge. When I decided to carry her to term ignoring the pressures from doctors to terminate I decided to give her every chance in the world, to fight for her, to advocate and make that life long commitment to helping her knowing full well she would likely not be able to help herself.
She's 5 now...F I V E! That's a great triumph in itself of a girl who wasn't expected to live but a few hours. I am proud and humbled of who she is, what she's endured...Why can't I just be happy with that?
Friday, October 9, 2015
Overdue Musings
It's been a while, yeah? I'll break this up into sections and try to keep it (fairly) short
Naysa Diane:
This girl has been coming on leaps and bounds lately, not sure what's gotten into her but I'm definitely not going to question it! She has been making new sounds, grabbing and holding new objects and so much more interactive. HBOT (Hyperbaric Oxygen Therapy) is in the works and hopefully starting as soon as next week! I am so excited to see what this does for her along with increased therapy (PT, OT, Speech.)
We have been trying to get nursing since we moved here, though I'm still not sure how I feel about having someone who is NOT our Joan hanging around. I'll probably go through a few before I find a good fit like we did before we found her. Really hoping this gets set up before the baby arrives!
As the holiday season quickly approaches, I find myself growing more anxious about her health. It seems the hospital is always unavoidable around this time and I can't remember the last winter without a PICU stay. Hormones of course have my irrational fears in overdrive. Most recently, I can't shake the "what if" of this pregnancy as what if we unexpectedly got pregnant because something IS going to happen with Nay and having a new baby to focus attention away from that will be helpful and healing..? That's crazy, right? Yes.... totally. Still, I hold her a little a longer and look into her eyes a little deeper because you just never know, especially with our cele babies. Today is a gift and tomorrow is never promised, isn't that the saying? It's not something I dwell on but when it randomly crosses my mind my heart immediately drops to my stomach and I don't much care for that feeling! I've upped both her and Ryld's vitamins, so fingers crossed we can avoid all that this year, maybe a few trips to the chiropractor for all of us too.
Oopsy:
I am SO excited I am able to VBA2C (vaginal birth after 2 cesarean) with this pregnancy! I get a lot of confusion about my level of excitement because all anyone associates childbirth with is pain. Yes, I understand it will be painful, but let me explain.
Birth is something extraordinary that only women are capable of. It is empowering and exciting to realize what your body is capable of. Cesarean birth is birth, absolutely. It is major surgery that is extremely painful for weeks to heal from while trying to take care of a newborn and in my case, two other littles. It is a scary, sterile procedure where you have absolutely zero control on how you bring your baby into the world. They give you a spinal, strap you to table and cut you open..it's uncomfortable and I HATE feeling so drugged and tired when my baby is finally placed in my arms for the first time.
I've never experienced labor, the intensity and excitement knowing with each contraction your baby is closer to being here. I want this. I can do this. It's hard to explain unless you've been through it, but I cannot wait to take my body back, to birth this baby naturally, to heal. C-sections are traumatizing, whether you realize it at the time or not. It's not the natural way of things and at least for me, you feel like a failure as a woman. So, that is why I look forward to the pain and wonder of a VBAC. I am aware of the risks, the numbers, statistics, etc and I absolutely would not consider it if it were more dangerous than a repeat cesarean. Support it or not, that's your choice but do not come to me with your worries and negativity please! I have been and will be working my ass off to ensure the highest chance of a successful VBAC :)
I hope you're all doing well! I am enjoying this no Facebook thing and not sure I will even get back on to be honest... if you haven't yet signed up for email updates and pictures and want to follow this link! You can also still keep up with pictures on Instagram (Ashlyn_Page)
Naysa Diane:
This girl has been coming on leaps and bounds lately, not sure what's gotten into her but I'm definitely not going to question it! She has been making new sounds, grabbing and holding new objects and so much more interactive. HBOT (Hyperbaric Oxygen Therapy) is in the works and hopefully starting as soon as next week! I am so excited to see what this does for her along with increased therapy (PT, OT, Speech.)
We have been trying to get nursing since we moved here, though I'm still not sure how I feel about having someone who is NOT our Joan hanging around. I'll probably go through a few before I find a good fit like we did before we found her. Really hoping this gets set up before the baby arrives!
As the holiday season quickly approaches, I find myself growing more anxious about her health. It seems the hospital is always unavoidable around this time and I can't remember the last winter without a PICU stay. Hormones of course have my irrational fears in overdrive. Most recently, I can't shake the "what if" of this pregnancy as what if we unexpectedly got pregnant because something IS going to happen with Nay and having a new baby to focus attention away from that will be helpful and healing..? That's crazy, right? Yes.... totally. Still, I hold her a little a longer and look into her eyes a little deeper because you just never know, especially with our cele babies. Today is a gift and tomorrow is never promised, isn't that the saying? It's not something I dwell on but when it randomly crosses my mind my heart immediately drops to my stomach and I don't much care for that feeling! I've upped both her and Ryld's vitamins, so fingers crossed we can avoid all that this year, maybe a few trips to the chiropractor for all of us too.
Oopsy:
I am SO excited I am able to VBA2C (vaginal birth after 2 cesarean) with this pregnancy! I get a lot of confusion about my level of excitement because all anyone associates childbirth with is pain. Yes, I understand it will be painful, but let me explain.
Birth is something extraordinary that only women are capable of. It is empowering and exciting to realize what your body is capable of. Cesarean birth is birth, absolutely. It is major surgery that is extremely painful for weeks to heal from while trying to take care of a newborn and in my case, two other littles. It is a scary, sterile procedure where you have absolutely zero control on how you bring your baby into the world. They give you a spinal, strap you to table and cut you open..it's uncomfortable and I HATE feeling so drugged and tired when my baby is finally placed in my arms for the first time.
I've never experienced labor, the intensity and excitement knowing with each contraction your baby is closer to being here. I want this. I can do this. It's hard to explain unless you've been through it, but I cannot wait to take my body back, to birth this baby naturally, to heal. C-sections are traumatizing, whether you realize it at the time or not. It's not the natural way of things and at least for me, you feel like a failure as a woman. So, that is why I look forward to the pain and wonder of a VBAC. I am aware of the risks, the numbers, statistics, etc and I absolutely would not consider it if it were more dangerous than a repeat cesarean. Support it or not, that's your choice but do not come to me with your worries and negativity please! I have been and will be working my ass off to ensure the highest chance of a successful VBAC :)
I hope you're all doing well! I am enjoying this no Facebook thing and not sure I will even get back on to be honest... if you haven't yet signed up for email updates and pictures and want to follow this link! You can also still keep up with pictures on Instagram (Ashlyn_Page)
Sunday, March 29, 2015
Naysa and her face.
As most of you know, Naysa has had some behavioral issues since her strokes in December 2013. Right after her strokes she couldn't move very well... unless it was to beat herself on the face. Over the past year and a half she's been much better about it as long as she has the security of her weighted blanket or wrist weights with her lap pad. Lately she has been rubbing her nose raw, not so much punching her nose like she was before but rubbing it to the point she bleeds either from the rawness of her skin or she gives herself a bloody nose.
Last night, she bit her tongue pretty bad and we were worried about her choking on blood in the night since she just kept moving her tongue around and bit it again. Ben stayed up until about 2 to keep an eye on her and not long after I heard the alarm from the Sami and sat up to check her to make sure she didn't get out of her swaddle to hit herself or choking. I was up every hour, if not every half. I finally fell into a semi deep sleep and was jolted awake by the alarm, I lean over to check on her and there she is, with BOTH arms out...
Which brings us to this morning.
Her face and arms were COVERED in blood! I got her in the tub and ended up having to use the Nosefrida to get some blood cots out her nose!! :(
I'm really, honestly surprised she hasn't broken it yet and I'm not waiting until she does. On that note, if anyone has suggestions on how to keep her safe at night, I'm more than open to options. Swaddling doesn't work, arm braces don't work and wrapping her up in her weighted blanket doesn't work.
Last night, she bit her tongue pretty bad and we were worried about her choking on blood in the night since she just kept moving her tongue around and bit it again. Ben stayed up until about 2 to keep an eye on her and not long after I heard the alarm from the Sami and sat up to check her to make sure she didn't get out of her swaddle to hit herself or choking. I was up every hour, if not every half. I finally fell into a semi deep sleep and was jolted awake by the alarm, I lean over to check on her and there she is, with BOTH arms out...
Which brings us to this morning.
Her face and arms were COVERED in blood! I got her in the tub and ended up having to use the Nosefrida to get some blood cots out her nose!! :(
I'm really, honestly surprised she hasn't broken it yet and I'm not waiting until she does. On that note, if anyone has suggestions on how to keep her safe at night, I'm more than open to options. Swaddling doesn't work, arm braces don't work and wrapping her up in her weighted blanket doesn't work.
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