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.
Thursday, May 29, 2014
Faith in humanity, restored.
It's been way too long since I've written and I have SO much cover so forgive me if I ramble and I lose you, I think you'll be able to circle back ;)
Since I last posted in February I suppose it makes the most sense to start from there, yes?
It was a rough one. Naysa was at an all time high of frustration as she began recovering more from the strokes, realizing something happened and not understand why she couldn't do the things she once did. She took this frustration out on herself by punching, and I mean PUNCHING her nose. She was doing this before but this particular month was a bad one. So much so that we were forced to obtain a prescription of versed to calm her (and y'all know how we feel about big pharma) so you know things were bad if we went for it. This month was mainly spent trying to find ways to protect her, soothe her and get her on the fast track to recovery. LOTS of appointments and it hasn't slowed down.
March:
Birthday month! Our little bug turned THREE! I wish I would have known then what I do now. The nights I cried myself to sleep wondering if I would still have a daughter the next morning, the days I begged God and made bargains with Him to just let us have a good life with her. Don't get me wrong, we've been through some shit and that fierce little bug has been to hell and back but she is HERE! She fights every day, never showing signs of giving up and bringing joy into the lives of everyone who knows her. She's pretty wonderful, but I'm biased ;) March was also family cruise month!! We traveled to Miami to meet my parents, my brother and his betrothed, three of my four grandparents and Ben's grandparents. It was so great to see everyone and have them finally meet Ryld! Naysa looooved sitting out on the deck, listening to the waves crash against the ship and the warm tropical breeze through her hair. I hope one day we can take her on another cruise, she was so happy and content for the most part (we were there during spring break so she did not appreciate the loud party goers) she even slept through the night multiple nights (HUGE for her) thanks to the gentle rocking of the ship.
April:
We had a great time with an extended visit from my seester, Regina and niece Ada. Ben was gone a few weeks so they flew out to spend time with us, Dustin (Ben's brother, Regina's husband) surprised us all when he flew out for a few days as well! It was so good to have family around again so soon after our cruise. I cannot WAIT to move back to the East Coast and have that support again. You have no idea how wonderful and soothing it was to know I could run to the store at night if they were in bed with peace of mind that they are cared for and loved while I was away. I have so very few people I would be totally at ease leaving them with out here, especially with how Nay can be sometimes and the particular way we parent.
May:
I cannot believe this month is coming to an end! We had a nice visit with Mimi and Papa this month and those never last as long any of us would like. Naysa has gained back majority of her pre-stroke ability and her head/trunk control is wonderful! PT and OT are in full swing (though I'm still not a fan and prefer ABM) She is going to acupuncture weekly which has been a huge help and I am looking into Osteopathy. She got her pediatric stroller (Kimba Neo) today and the most amazing thing of all....a brand new, beautiful wheelchair accessible van was so very generously given to us by an anonymous donor. Ben's Master Chief has been so wonderful in being the middle man where communication is concerned to keep this incredible man anonymous. This gift is something we would only dream of. We'd huddle over the lap top and admire some accessible vans, talking about what we could and would do if we had one, the trips we could take as a family (including dogs!) and how much happier Nay would be without the constant transfer from car seat to stroller. The list of reasons we needed this goes on and on. I'm still in shock, I went to check the mail earlier and there it was...the Tardis (yes, I named it! Don't judge ;p) on MY driveway! This constant reminder that there IS still good in the world, that people still care about people. There were so many people involved in this grand gesture and I want to thank you all, I wish you truly knew what you've given us and I wish I had the words to explain. Thank you <3
Since I last posted in February I suppose it makes the most sense to start from there, yes?
It was a rough one. Naysa was at an all time high of frustration as she began recovering more from the strokes, realizing something happened and not understand why she couldn't do the things she once did. She took this frustration out on herself by punching, and I mean PUNCHING her nose. She was doing this before but this particular month was a bad one. So much so that we were forced to obtain a prescription of versed to calm her (and y'all know how we feel about big pharma) so you know things were bad if we went for it. This month was mainly spent trying to find ways to protect her, soothe her and get her on the fast track to recovery. LOTS of appointments and it hasn't slowed down.
March:
Birthday month! Our little bug turned THREE! I wish I would have known then what I do now. The nights I cried myself to sleep wondering if I would still have a daughter the next morning, the days I begged God and made bargains with Him to just let us have a good life with her. Don't get me wrong, we've been through some shit and that fierce little bug has been to hell and back but she is HERE! She fights every day, never showing signs of giving up and bringing joy into the lives of everyone who knows her. She's pretty wonderful, but I'm biased ;) March was also family cruise month!! We traveled to Miami to meet my parents, my brother and his betrothed, three of my four grandparents and Ben's grandparents. It was so great to see everyone and have them finally meet Ryld! Naysa looooved sitting out on the deck, listening to the waves crash against the ship and the warm tropical breeze through her hair. I hope one day we can take her on another cruise, she was so happy and content for the most part (we were there during spring break so she did not appreciate the loud party goers) she even slept through the night multiple nights (HUGE for her) thanks to the gentle rocking of the ship.
April:
We had a great time with an extended visit from my seester, Regina and niece Ada. Ben was gone a few weeks so they flew out to spend time with us, Dustin (Ben's brother, Regina's husband) surprised us all when he flew out for a few days as well! It was so good to have family around again so soon after our cruise. I cannot WAIT to move back to the East Coast and have that support again. You have no idea how wonderful and soothing it was to know I could run to the store at night if they were in bed with peace of mind that they are cared for and loved while I was away. I have so very few people I would be totally at ease leaving them with out here, especially with how Nay can be sometimes and the particular way we parent.
May:
I cannot believe this month is coming to an end! We had a nice visit with Mimi and Papa this month and those never last as long any of us would like. Naysa has gained back majority of her pre-stroke ability and her head/trunk control is wonderful! PT and OT are in full swing (though I'm still not a fan and prefer ABM) She is going to acupuncture weekly which has been a huge help and I am looking into Osteopathy. She got her pediatric stroller (Kimba Neo) today and the most amazing thing of all....a brand new, beautiful wheelchair accessible van was so very generously given to us by an anonymous donor. Ben's Master Chief has been so wonderful in being the middle man where communication is concerned to keep this incredible man anonymous. This gift is something we would only dream of. We'd huddle over the lap top and admire some accessible vans, talking about what we could and would do if we had one, the trips we could take as a family (including dogs!) and how much happier Nay would be without the constant transfer from car seat to stroller. The list of reasons we needed this goes on and on. I'm still in shock, I went to check the mail earlier and there it was...the Tardis (yes, I named it! Don't judge ;p) on MY driveway! This constant reminder that there IS still good in the world, that people still care about people. There were so many people involved in this grand gesture and I want to thank you all, I wish you truly knew what you've given us and I wish I had the words to explain. Thank you <3
Thursday, February 20, 2014
I'm not better than you.
I hear this a lot as a special needs parent and if you have a child with extra needs, you know what I'm talking about.
"I don't know how you do it, I don't think I could." "You're so strong" "God chose you to be his/her mama."
Always said by well meaning people with good intentions but, it always has the opposite effect on me.
I'm not by nature a patient person and three years ago, I wouldn't have considered myself a strong person. Not to say I couldn't handle a difficult situation should the occasion arise, but I wouldn't classify myself as strong or brave. It took a lot of learning and a lot of breakdowns to become who I am since we received the Encephalocele diagnosis. I've told doctors where to shove it, fired nurses without guilt and automatically switch to mama bear bitch mode when that first foot crosses the hospital threshold. I'm not superwoman or special, strong or brave. I'm a mom. Plain and simple. I get frustrated and have to step outside and take a deep breath, just like you do. We all want what's best for our kids and if you were put in my situation, I don't think you would give it a second thought to do the things I do.
When Ben and I decided to carry Naysa to term, no matter what the outcome, we had no idea what life would be like should she survive and honestly we didn't care. We didn't think about all of the extra care, IEPs, hospital stays, etc...we just wanted our baby. I had no idea I wouldn't be able to vacuum unless my almost three year old is swaddled or someone else is home to make sure she doesn't get upset and hit herself, but that's how it is. We've adapted. We've learned what pisses her off and what makes her happy, though she is very temperamental at times and sometimes things backfire. It's just parenthood, intensified. It's our normal. I guess on the outside looking in I can see how different our lives are compared to those with typical children (aside from surgeries, 5 different specialists and extended hospitals stays) but I'm not better than you. Don't compare yourself or our lives and think it's not something you could do, that you wouldn't be mom enough to handle it, I assure you..you would be. It would take practice and learning but you could, you WOULD because your kids depend on you, no matter what their ability. Speaking of Naysa....she's up from a nap and Ry is pulling my hair. Time to get back to the reality of the Page zoo ;)
"I don't know how you do it, I don't think I could." "You're so strong" "God chose you to be his/her mama."
Always said by well meaning people with good intentions but, it always has the opposite effect on me.
I'm not by nature a patient person and three years ago, I wouldn't have considered myself a strong person. Not to say I couldn't handle a difficult situation should the occasion arise, but I wouldn't classify myself as strong or brave. It took a lot of learning and a lot of breakdowns to become who I am since we received the Encephalocele diagnosis. I've told doctors where to shove it, fired nurses without guilt and automatically switch to mama bear bitch mode when that first foot crosses the hospital threshold. I'm not superwoman or special, strong or brave. I'm a mom. Plain and simple. I get frustrated and have to step outside and take a deep breath, just like you do. We all want what's best for our kids and if you were put in my situation, I don't think you would give it a second thought to do the things I do.
When Ben and I decided to carry Naysa to term, no matter what the outcome, we had no idea what life would be like should she survive and honestly we didn't care. We didn't think about all of the extra care, IEPs, hospital stays, etc...we just wanted our baby. I had no idea I wouldn't be able to vacuum unless my almost three year old is swaddled or someone else is home to make sure she doesn't get upset and hit herself, but that's how it is. We've adapted. We've learned what pisses her off and what makes her happy, though she is very temperamental at times and sometimes things backfire. It's just parenthood, intensified. It's our normal. I guess on the outside looking in I can see how different our lives are compared to those with typical children (aside from surgeries, 5 different specialists and extended hospitals stays) but I'm not better than you. Don't compare yourself or our lives and think it's not something you could do, that you wouldn't be mom enough to handle it, I assure you..you would be. It would take practice and learning but you could, you WOULD because your kids depend on you, no matter what their ability. Speaking of Naysa....she's up from a nap and Ry is pulling my hair. Time to get back to the reality of the Page zoo ;)
Monday, December 30, 2013
Starting Over
I've come to the realization that in times of high stress I tend to channel Scarlet O'Hara. Fiddle Dee Dee, I'll think about it tomorrow. And you know what? It works for me. I know eventually I will have to face the reality of the situation at hand, but in those first few weeks when the wound is fresh and everyone else is falling apart I do pretty well in keeping it together. Every once in a while those repressed thoughts and feelings find their way in but I quickly shake them off and continue about my day. I have to be strong my girl, she's one hell of a fighter and I can't let her see me sweat. I can't think about how much I miss her laugh, her smile or how excited she got when it was meal/snack time. I can't think about how we will have to start completely over with therapy to gain back the amazing trunk/head control she had, the rolling, the verge of army crawling, the sitting...all that hard work, the blood, sweat and tears it took us to get her to that point...gone. I want my Nay Nay back. I absolutely hate seeing her just laying around, she was so active and silly. She's a shell of herself right now and I hate not knowing how long/if ever we will get her back to the Nay she was before. Benjamin said it best when we were talking "She could get up and start walking for all I care, I just want HER." I 1000% agree. Before we got smiles and reassurance our girl was still in there, she was improving physically but mentally was taking some time. I can't even begin to explain to you how disheartening it is to see your once glowing, playful, silly, smiley, wiggle worm of a toddler laying expressionless and still for hours that turn into days, days into weeks. Until we learned she had suffered several strokes in her cerebellum, we were just lost. We didn't understand what was taking her so long to wake up. She would just lay there...even when the nurses put IVs in or pulled tape off her skin, things that would usually take three of them to do, she didn't flinch, didn't grimace....just...nothing. But, like I said...I can't think about that. Fiddle Dee Dee!
I can't thank you enough for the tremendous amount of love and support we've received this month. The sweet messages, words of encouragement, help with the baby, generous gifts...all of it has made this a little easier to stomach. We are in a whole new world of special needs parenting and have a lot to learn with the g-tube care, rehabilitation and finding our new normal. We've got a long road to recovery filled with appointments and therapy and even longer one to acceptance and healing. We are starting over.
I can't thank you enough for the tremendous amount of love and support we've received this month. The sweet messages, words of encouragement, help with the baby, generous gifts...all of it has made this a little easier to stomach. We are in a whole new world of special needs parenting and have a lot to learn with the g-tube care, rehabilitation and finding our new normal. We've got a long road to recovery filled with appointments and therapy and even longer one to acceptance and healing. We are starting over.
Friday, October 4, 2013
Confessions of an overwhelmed mama
This blog has always been a place of peace for me, a safe place to get things off my chest and receive much needed support in return. I've always been honest and raw with my emotions, if you judge me for that...then that's your problem but I won't hold back or keep things PG for your sake. With that said, I will proceed to spill my heart out.
The past few days have been really tough for me. I've been so careful about the amount of attention I give both kids so neither one feels neglected or forgotten, I'm new to this whole two kids thing and haven't quite gotten the hang of spreading myself so thin between them and my husband while still leaving 5 seconds for myself. Lately something is going on with Naysa and I don't know what. It absolutely kills me that I can't just ask her and hear her little voice tell me what she's feeling. How can I make it better when I don't know what's wrong in the first place? Is she feeling jealous or left out? Is she hurting or frustrated? I have no idea. I can't comfort my own daughter. The extent of our communication is her screaming, crying, pulling my hair and me desperately trying to figure out what's wrong. Going through all of the usual things that make her happy and failing miserably. She looks to me to make everything better and I feel like a such a failure I can't do that for her.
It's an emotional roller coaster and I just want to get off. It's exhausting. I've realized I grieve with each new phase of her life. From newborn, to infant to toddlerhood...I grieve them all. She will be three before I know it and if I think ahead to where her development will be a year or five from now, I will go crazy. I take things day by day and sometimes...it just sucks. I'd like to look forward to things with and for her but the future is such an unknown. I worry I won't be able to do this long term, that I will burn out. I need a break and a break isn't possible. I feel guilty for the want to get away and just take time to breathe, collect and focus but also know that if I don't I won't be the best mom I can be for my kids. I really don't know what to do, I feel so alone in this. Don't get me wrong, Benjamin is great support...but he's not a mom. It's hard for him to fully understand the way I feel and the few special needs mom friend I do have can't really relate.
Today will be spent googling, e-mailing and calling for local resources. It's not fair to them if I just check out, I'll get my shit together, don't worry. Thanks for listening <3
The past few days have been really tough for me. I've been so careful about the amount of attention I give both kids so neither one feels neglected or forgotten, I'm new to this whole two kids thing and haven't quite gotten the hang of spreading myself so thin between them and my husband while still leaving 5 seconds for myself. Lately something is going on with Naysa and I don't know what. It absolutely kills me that I can't just ask her and hear her little voice tell me what she's feeling. How can I make it better when I don't know what's wrong in the first place? Is she feeling jealous or left out? Is she hurting or frustrated? I have no idea. I can't comfort my own daughter. The extent of our communication is her screaming, crying, pulling my hair and me desperately trying to figure out what's wrong. Going through all of the usual things that make her happy and failing miserably. She looks to me to make everything better and I feel like a such a failure I can't do that for her.
It's an emotional roller coaster and I just want to get off. It's exhausting. I've realized I grieve with each new phase of her life. From newborn, to infant to toddlerhood...I grieve them all. She will be three before I know it and if I think ahead to where her development will be a year or five from now, I will go crazy. I take things day by day and sometimes...it just sucks. I'd like to look forward to things with and for her but the future is such an unknown. I worry I won't be able to do this long term, that I will burn out. I need a break and a break isn't possible. I feel guilty for the want to get away and just take time to breathe, collect and focus but also know that if I don't I won't be the best mom I can be for my kids. I really don't know what to do, I feel so alone in this. Don't get me wrong, Benjamin is great support...but he's not a mom. It's hard for him to fully understand the way I feel and the few special needs mom friend I do have can't really relate.
Today will be spent googling, e-mailing and calling for local resources. It's not fair to them if I just check out, I'll get my shit together, don't worry. Thanks for listening <3
Monday, September 23, 2013
Lots of ground to cover!
SO much to catch up on! I guess I will begin where the last post left off.
After we got back from San Rafael Naysa continued to do great, her movement was smooth and intentional and we could really tell she was enjoying the new things her body could do. The beginning of August my parents and brother flew out to spend some time with Nay before her days of being an only child were over. My parents were a HUGE part of her ABM success before surgery. They took her to lessons every day, sometimes twice a day and Naysa thrived!
Early in the morning of August 15th Benjamin and I went to the hospital to welcome our son into the world, unfortunately via cesarean birth. I was very much hoping for a VBAC but alas, it was not possible. After HOURS of waiting around the hospital because my surgery got bumped, they walked me back to the OR and got me ready. It was SUCH a different experience than with Naysa. Everything was explained to me as it was done, there was an air of excitement rather than fear, I was actually able to HOLD him right away and not when he was two days old. I was congratulated instead of greeted with looks of sympathy and bombarded with "I'm sorry's." It was honestly like being first time parents...again. We both expected the nurses to come take him, both relieved and surprised when they never did. He stayed in my arms the entire time. From the moment we left the OR until the time we went home. We were so used to doing things a certain way because of the NICU, we were even saving his diapers to be weighed! That gave the nurse a good giggle ;) I felt empowered with this birth, even though I was unable to have my VBAC. I made all decisions for him and they were respected, I only wish I could have this with Nay. The days following our arrival home, I began to feel overwhelmed. I felt disconnected from Naysa because I hadn't been around her as much as I was used to and when I finally was, it felt like she didn't even miss me or care.
Then she had surgery, August 27th and trying to fight off the feelings of depression got harder. I was so conflicted between caring for my newborn and being by my girls side 24/7 in the hospital like I ALWAYS had before. I'm very thankful my parents were here for day shift and Ben stayed the night so she was never alone, but I felt such guilt for not being able to stay with her. She came home two days after surgery, miserable...which only added to my feelings of helplessness. I couldn't hold her or pick her up for WEEKS and she was in pain. I wanted to scoop her up and make it all go away and I couldn't. What kind of mother was I?? All I could do was tell her how sorry I was and cry. A lot. That made me feel pretty damn shitty. My mom tried to reach out and talk to me and I shot her down. I didn't feel like talking about it and I just kept waiting for these feelings to go away. Something I don't suggest, future reference. A month later and I'm finally feeling more confident in my ability to care for both kids with equal amounts of attention and affection.
Naysa is unstoppable! The past few weeks she's been a whole different kid. Her seizures are G O N E!!! She is sitting and moving beautifully, she is more social and her personality is really emerging. Her incision is healing up great and stitches are just about dissolved :) Ryld is growing SO fast, already getting into 0-3 clothes and size 1 diapers! Life is speeding by, soon it will be 2014 and we can officially mark the calendar for ONE more year in San Diego, Naysa will be three, Ryld will be one and we will be going on a family cruise with my parents and all the grandparents! Exciting things ahead for this little family <3 Well, that's two months worth of updates in as compacted as a post I can make. Thank you for checking up on us and offering support. We love y'all!
After we got back from San Rafael Naysa continued to do great, her movement was smooth and intentional and we could really tell she was enjoying the new things her body could do. The beginning of August my parents and brother flew out to spend some time with Nay before her days of being an only child were over. My parents were a HUGE part of her ABM success before surgery. They took her to lessons every day, sometimes twice a day and Naysa thrived!
Early in the morning of August 15th Benjamin and I went to the hospital to welcome our son into the world, unfortunately via cesarean birth. I was very much hoping for a VBAC but alas, it was not possible. After HOURS of waiting around the hospital because my surgery got bumped, they walked me back to the OR and got me ready. It was SUCH a different experience than with Naysa. Everything was explained to me as it was done, there was an air of excitement rather than fear, I was actually able to HOLD him right away and not when he was two days old. I was congratulated instead of greeted with looks of sympathy and bombarded with "I'm sorry's." It was honestly like being first time parents...again. We both expected the nurses to come take him, both relieved and surprised when they never did. He stayed in my arms the entire time. From the moment we left the OR until the time we went home. We were so used to doing things a certain way because of the NICU, we were even saving his diapers to be weighed! That gave the nurse a good giggle ;) I felt empowered with this birth, even though I was unable to have my VBAC. I made all decisions for him and they were respected, I only wish I could have this with Nay. The days following our arrival home, I began to feel overwhelmed. I felt disconnected from Naysa because I hadn't been around her as much as I was used to and when I finally was, it felt like she didn't even miss me or care.
Then she had surgery, August 27th and trying to fight off the feelings of depression got harder. I was so conflicted between caring for my newborn and being by my girls side 24/7 in the hospital like I ALWAYS had before. I'm very thankful my parents were here for day shift and Ben stayed the night so she was never alone, but I felt such guilt for not being able to stay with her. She came home two days after surgery, miserable...which only added to my feelings of helplessness. I couldn't hold her or pick her up for WEEKS and she was in pain. I wanted to scoop her up and make it all go away and I couldn't. What kind of mother was I?? All I could do was tell her how sorry I was and cry. A lot. That made me feel pretty damn shitty. My mom tried to reach out and talk to me and I shot her down. I didn't feel like talking about it and I just kept waiting for these feelings to go away. Something I don't suggest, future reference. A month later and I'm finally feeling more confident in my ability to care for both kids with equal amounts of attention and affection.
Naysa is unstoppable! The past few weeks she's been a whole different kid. Her seizures are G O N E!!! She is sitting and moving beautifully, she is more social and her personality is really emerging. Her incision is healing up great and stitches are just about dissolved :) Ryld is growing SO fast, already getting into 0-3 clothes and size 1 diapers! Life is speeding by, soon it will be 2014 and we can officially mark the calendar for ONE more year in San Diego, Naysa will be three, Ryld will be one and we will be going on a family cruise with my parents and all the grandparents! Exciting things ahead for this little family <3 Well, that's two months worth of updates in as compacted as a post I can make. Thank you for checking up on us and offering support. We love y'all!
Monday, July 15, 2013
ABM Week!
I'm sorry it's taken so long to update you on the entire week, it's been a long one! We got home Saturday afternoon and bummed around the house for the weekend relaxing, barely even got online!
This week was amazing and I can't thank you enough for the donations, support and believing in our bug :) Naysa did wonderfully in her morning lessons with Neil and really took to him. He had a very gentle yet purposeful touch and a calm, silly demeanor which she responded well to. She really seemed to get the most out the lessons with him since it was first thing in the morning. He said she moves beautifully and all of the tools to crawl, walk and so much more we just have to help her get there and learn the natural movement patterns to achieve these goals.
ABM (Anat Baniel Method) is very different from Physical and Occupational Therapy. This method does not force children (or adults) into unnatural positions they wouldn't otherwise be able to get to on their own. For example, when teaching her to come to sitting we roll her to the side (from a supine position) so her elbow and hand touch the ground before bringing her upright. If you think about how you naturally come to sitting from laying on your back, this is exactly what you do otherwise you're doing crunches. Though the week was focused on these smaller movements, we saw big changes! Naysa no longer 'frogs' her legs up ALL the time, she stretches them out and has really been discovering what her body can do and that she is safe to explore. She's been rolling over a lot more, even bearing weight on her arms to help her from tummy to back! She has much better trunk control and can sit unassisted longer than 60 seconds! She is babbling more, happier and I think starting to really realize SHE is in control of her body and can make it do anything. She grabs for toys that are further away from her and has even been tracking a few here and there!
Her afternoon sessions with Chris didn't always go so well since it was right at nap time, not to mention she wasn't used to twice a day lessons within a few hours of each other. He got a few good ones in where she wasn't fussy and showed him her potential in which he was very impressed. The things that most seemed to amaze him was her binky skills, haha! She would feel or see her binky, take it in her hands and turn it the right way before sticking it in her mouth. There are so many little things like that we're just used to because she's always done them or gained the new skill a while ago, but seeing these practitioners really made us realize just how amazing this little girl is.
This was really the first time Ben got to see ABM in action since he's at work when I take her to lessons and I'm so happy he believes in this work and is so on board, especially with my dream of getting certified! :) We saw Anat Thursday and she did a lesson with Nay, unfortunately it was the witching hour of 3pm so that made for an interesting time! She must be used to missed naptimes and grumpy kids because she just worked through it and distracted Nay with different toys, sounds and of course...the binky. She talked about the potential she was in her and how intelligent she is, my heart has never been more proud of my girl. At the end of the lesson Ben sat Naysa on his lap to give her a little snack while we spoke more with Anat and she taught us a lot on methods to teach Nay to be more self sufficient with her feeding, which has definitely proven to be useful since we got home. Not so much when spoons are involved but finger foods, one step at a time.
All in all it was a successful week and we will be doing it again when we can, until then she will continue her lessons with Kristi and wait for more changes :)
This week was amazing and I can't thank you enough for the donations, support and believing in our bug :) Naysa did wonderfully in her morning lessons with Neil and really took to him. He had a very gentle yet purposeful touch and a calm, silly demeanor which she responded well to. She really seemed to get the most out the lessons with him since it was first thing in the morning. He said she moves beautifully and all of the tools to crawl, walk and so much more we just have to help her get there and learn the natural movement patterns to achieve these goals.
ABM (Anat Baniel Method) is very different from Physical and Occupational Therapy. This method does not force children (or adults) into unnatural positions they wouldn't otherwise be able to get to on their own. For example, when teaching her to come to sitting we roll her to the side (from a supine position) so her elbow and hand touch the ground before bringing her upright. If you think about how you naturally come to sitting from laying on your back, this is exactly what you do otherwise you're doing crunches. Though the week was focused on these smaller movements, we saw big changes! Naysa no longer 'frogs' her legs up ALL the time, she stretches them out and has really been discovering what her body can do and that she is safe to explore. She's been rolling over a lot more, even bearing weight on her arms to help her from tummy to back! She has much better trunk control and can sit unassisted longer than 60 seconds! She is babbling more, happier and I think starting to really realize SHE is in control of her body and can make it do anything. She grabs for toys that are further away from her and has even been tracking a few here and there!
Her afternoon sessions with Chris didn't always go so well since it was right at nap time, not to mention she wasn't used to twice a day lessons within a few hours of each other. He got a few good ones in where she wasn't fussy and showed him her potential in which he was very impressed. The things that most seemed to amaze him was her binky skills, haha! She would feel or see her binky, take it in her hands and turn it the right way before sticking it in her mouth. There are so many little things like that we're just used to because she's always done them or gained the new skill a while ago, but seeing these practitioners really made us realize just how amazing this little girl is.
This was really the first time Ben got to see ABM in action since he's at work when I take her to lessons and I'm so happy he believes in this work and is so on board, especially with my dream of getting certified! :) We saw Anat Thursday and she did a lesson with Nay, unfortunately it was the witching hour of 3pm so that made for an interesting time! She must be used to missed naptimes and grumpy kids because she just worked through it and distracted Nay with different toys, sounds and of course...the binky. She talked about the potential she was in her and how intelligent she is, my heart has never been more proud of my girl. At the end of the lesson Ben sat Naysa on his lap to give her a little snack while we spoke more with Anat and she taught us a lot on methods to teach Nay to be more self sufficient with her feeding, which has definitely proven to be useful since we got home. Not so much when spoons are involved but finger foods, one step at a time.
All in all it was a successful week and we will be doing it again when we can, until then she will continue her lessons with Kristi and wait for more changes :)
Monday, July 8, 2013
ABM- Day One
Well we made it to San Rafael! It was a long drive from San Diego to Fremont but so glad we got to stay the night with my Grandpa and catch up. It's been at least 10 years since I'd seen him and he'd obviously never met Naysa or Ben so it was nice to have a little reunion :) We left Fremont Sunday afternoon and drove about 45 minutes to San Rafael and finally checked in the hotel which made the week ahead more real to me. I've been wanting to get Nay up to the center since we first started ABM and I'm so excited for her to learn her body more and make new brain connections. I know she gets frustrated she doesn't quite know how to move the way she wants so even though this week will be intense, I know it will be worth it.
She had her first lesson this morning with Neil and it went really well! She was a little tired since she refused a morning nap until right before we leaving but it went smoother than I expected. He was very impressed with her intentional movements and the way in which she did them :) She will see Neil for every morning lesson and Chris for every afternoon one, so I am hoping that since she won't be with a different person every day she will respond better. After the morning lesson we came back to the hotel and she immediately fell asleep for about two hours! She woke up just in time for lunch and a diaper change before we headed out the door for her afternoon lesson with Chris.
Unfortunately, this lesson did not go as well as the morning one. She started out just fine but was obviously still sleepy and kept rolling side to side trying to close her eyes. Chris worked with her and let her relax while he learned how she moves and got to know her but she was in a definite 'leave me alone, two year old' kinda mood. We ended the lesson a little early so she wouldn't get too worked up and associate the center with 'work.' We are now back at the hotel and she is playing on her floor mat, babbling to her toys. I think we may go check out the heated indoor pool and see if that's therapeutic for her since she loves the water!
Afternoon lesson with Chris, the calm before the storm ;)
Work hard. Nap hard.
She had her first lesson this morning with Neil and it went really well! She was a little tired since she refused a morning nap until right before we leaving but it went smoother than I expected. He was very impressed with her intentional movements and the way in which she did them :) She will see Neil for every morning lesson and Chris for every afternoon one, so I am hoping that since she won't be with a different person every day she will respond better. After the morning lesson we came back to the hotel and she immediately fell asleep for about two hours! She woke up just in time for lunch and a diaper change before we headed out the door for her afternoon lesson with Chris.
Unfortunately, this lesson did not go as well as the morning one. She started out just fine but was obviously still sleepy and kept rolling side to side trying to close her eyes. Chris worked with her and let her relax while he learned how she moves and got to know her but she was in a definite 'leave me alone, two year old' kinda mood. We ended the lesson a little early so she wouldn't get too worked up and associate the center with 'work.' We are now back at the hotel and she is playing on her floor mat, babbling to her toys. I think we may go check out the heated indoor pool and see if that's therapeutic for her since she loves the water!
Friday, June 28, 2013
Ultrasound scare #2
If I wasn't sure enough this was last pregnancy yesterday's ultrasound definitely made sure of that. I dread ultrasounds, I have a little excitement to see him but it's vastly overshadowed by the anxiety and fear. Yesterday was my first scan with my new hospital and since my old OB has still yet to send my medical records the new OB decided to get his own set and have me in for an in depth anatomy scan. I laid back on the table and pulled up my shirt as the tech squirted the warm goo on my belly and moved the wand around to take measurements before beginning to check the baby in detail. Benjamin and I sat in silence, holding our breath and trying to brush off the tension we always feel when we look at those fuzzy black and white images. I noticed she spent more time on the neck and even brought it into 3D and my heart immediately sank. I told myself it was nothing and maybe she was doing a 3D check on him now and would show us his face. It didn't happen. She finished and told us the doctor would be in and may or may not want to scan for himself but it doesn't mean anything is wrong, that they just do that sometimes. I foolishly believed her against my better judgement, we know better.
After what seemed like forever my doctor came in along with another woman. That's never good news. He told us he wanted to take a closer look at the baby's neck but it's probably nothing to worry about, definitely nothing near what we experienced with Naysa. Once again I laid back and pulled my shirt up to expose my belly for the gel only this time I didn't watch. I stared at the ceiling with blurry vision from the tears welling up and held Ben's hand. All I could do was pray and silently apologize to Ben for not being able to give him a healthy baby. This is his son, he was so excited to learn we were having a little boy and now here we sit wondering what new diagnosis we've never heard of we will become experts on. The doctors and tech talked amongst themselves but I don't remember what they were saying, I hear only my heartbeat becoming less and less steady. I felt the towel put on me to wipe up the goo and we were done. He said it's nothing to be worried about but it looks like there is possibly an extra piece of bone or extra vertebrae in his neck. Typically they wouldn't even have noticed something so small but because of my prenatal history they are being nit picky. They couldn't get a good look because of his position but he would contact his friend and top radiologist to look at the images and we would answers soon. We thanked him and as they left the room I promptly lost my shit. I couldn't stop or control it and just sobbed as Ben held me. I finally composed myself and walked out of the room puffy eyed and ready to get out of that hospital, emotionally drained and wishing the day would just end already.
A few hours later we were home and relaxing on the couch when my phone rang with an 858 number, being a special needs parent and a high risk pregnancy I answer these knowing it's a hospital or doctors office. My OB was calling to confirm there was in fact an extra piece of bone in the neck but not a full vertebrae, at what looked to be between C1 & C2. He assured me it was nothing to worry about and would have no negative effect on the baby but they would get an extra once he is here to get a better look. Ben called Grammy to ask about family history since the doctor had questioned if anyone had a history of spine problems or was particularly tall (which majority of his side are very tall.) After he got off the phone he explained to me that a few family members have an extra vertebrae so it is genetic and they've had no issue. I am feeling much better and reassured but that whole experience just brought back those traumatizing memories of the day we learned of Naysa's Encephalocele so I am still feeling a little off. Other than the extra piece of bone, he is healthy as can be and I couldn't be more thankful, BUT I am still sooo getting my tubes tied. I can't go through this again and I can't put Ben or my family through it, say what you will but I am done making beautiful Page babies! I got my perfect little bug and a boy who is already giving me panic attacks, I'm good to go.
After what seemed like forever my doctor came in along with another woman. That's never good news. He told us he wanted to take a closer look at the baby's neck but it's probably nothing to worry about, definitely nothing near what we experienced with Naysa. Once again I laid back and pulled my shirt up to expose my belly for the gel only this time I didn't watch. I stared at the ceiling with blurry vision from the tears welling up and held Ben's hand. All I could do was pray and silently apologize to Ben for not being able to give him a healthy baby. This is his son, he was so excited to learn we were having a little boy and now here we sit wondering what new diagnosis we've never heard of we will become experts on. The doctors and tech talked amongst themselves but I don't remember what they were saying, I hear only my heartbeat becoming less and less steady. I felt the towel put on me to wipe up the goo and we were done. He said it's nothing to be worried about but it looks like there is possibly an extra piece of bone or extra vertebrae in his neck. Typically they wouldn't even have noticed something so small but because of my prenatal history they are being nit picky. They couldn't get a good look because of his position but he would contact his friend and top radiologist to look at the images and we would answers soon. We thanked him and as they left the room I promptly lost my shit. I couldn't stop or control it and just sobbed as Ben held me. I finally composed myself and walked out of the room puffy eyed and ready to get out of that hospital, emotionally drained and wishing the day would just end already.
A few hours later we were home and relaxing on the couch when my phone rang with an 858 number, being a special needs parent and a high risk pregnancy I answer these knowing it's a hospital or doctors office. My OB was calling to confirm there was in fact an extra piece of bone in the neck but not a full vertebrae, at what looked to be between C1 & C2. He assured me it was nothing to worry about and would have no negative effect on the baby but they would get an extra once he is here to get a better look. Ben called Grammy to ask about family history since the doctor had questioned if anyone had a history of spine problems or was particularly tall (which majority of his side are very tall.) After he got off the phone he explained to me that a few family members have an extra vertebrae so it is genetic and they've had no issue. I am feeling much better and reassured but that whole experience just brought back those traumatizing memories of the day we learned of Naysa's Encephalocele so I am still feeling a little off. Other than the extra piece of bone, he is healthy as can be and I couldn't be more thankful, BUT I am still sooo getting my tubes tied. I can't go through this again and I can't put Ben or my family through it, say what you will but I am done making beautiful Page babies! I got my perfect little bug and a boy who is already giving me panic attacks, I'm good to go.
Friday, June 7, 2013
Updates, Therapy and OB
Things have improved since my last post and I thank you all for the love and support. Sometimes this life just gets to me and I let down my defenses. It's a vicious cycle of strength and breaking points. I cried most of that day, impatiently waiting for it to end so I could sleep it off and start fresh the next day. After my pity party I decided to look into more ways to help Naysa. As you know, she's been doing ABM or Anat Baniel Method of therapy in place of Physical Therapy and Occupational Therapy. I can't say enough good things about this method but it's something that needs to be consistent and due to scheduling conflicts with our wonderful practitioner, Naysa hasn't been getting the 3-5 times a week she really needs to be successful. So, I put in the request to the scheduling department up North, in San Rafael to do a week of intensives with Anat herself and her top practitioners! I am VERY excited about this and anxiously awaiting an answer of availability. We are looking to go July 8-12. It is a pricey little adventure and thankfully some family has offered to pitch in but I will also be holding a fundraiser for those who are interested in assisting our efforts to get our bug the help she needs :) She will have two, hour long lessons a day. One in the morning and one in the afternoon. I'm estimating this week long trip to cost us about $2500, so any little bit helps.
On the baby brother front, things are going well! I am 27 weeks along and recently transferred hospitals. Originally I was going with the OB who delivered Naysa because I knew him and he was great with that birth, but he is also a Perinatalogist and we won't require so much medical intervention this time around. He wanted to perform a repeat cesarean section at 36 weeks and I am not comfortable with that. If it was an emergency and I HAD to be delivered that early, then yes...by all means do what you need to do for the sake of my baby but to schedule that?? No way. I told him I was willing to go to 38 weeks, late 37 weeks but apparently he had vacation plans so we had to stay around certain dates. Are you kidding me?!?! All of this on top of the fact he wasn't on board with any of my birth plan or even discussing the possibility of a VBAC (vaginal birth after caesarean) just turned me off to going with him again, so I switched! By the recommendations of some amazing strong mamas, I will now be going to UCSD and couldn't be more excited! They are exactly what I am looking for as it's a holistic hospital. I don't have to request immediate skin to skin, delayed circumcision, no vaccinations....they just DO it that way. I had my initial appointment on Tuesday and go to meet the OB on the 19th to discuss possible VBAC, if not then schedule my family centered cesarean birth. I am feeling good, just low energy but with a little bug to keep up with and run all over San Diego that's to be expected. All seems to be well and healthy with the baby but I don't think I will REALLY be at ease until he's here and I can see for myself.
Now for some random updates:
Naysa's Encephalocele repair surgery is scheduled for August 27th, unfortunately it couldn't be moved up so it will happen a week or so after the baby gets here which means I won't be able to stay the night with her in the room :( We see Dr. Levy in two weeks so talk more about the surgery and discuss replacing her shunt with an ETV when it fails, as shunt failure is VERY common after these types of surgeries.
June 1st our first niece was born! A beautiful little 8lb girl named Ada Leoni :) Benjamin was able to be there with his brother and his wife for the birth. I couldn't be more proud of my seester who had a drug free home birth at 22 years old, brave lady! Everyone is doing well and adjusting to life as new little family.
Benjamin is still med-down from his motorcycle incident but healing up great so hoping for a med-up status at his next visit with the Ortho so he can finally submit his cross rate package for SAR Corpsman and get us out of San Diego early! ***FINGERS CROSSED**
On the baby brother front, things are going well! I am 27 weeks along and recently transferred hospitals. Originally I was going with the OB who delivered Naysa because I knew him and he was great with that birth, but he is also a Perinatalogist and we won't require so much medical intervention this time around. He wanted to perform a repeat cesarean section at 36 weeks and I am not comfortable with that. If it was an emergency and I HAD to be delivered that early, then yes...by all means do what you need to do for the sake of my baby but to schedule that?? No way. I told him I was willing to go to 38 weeks, late 37 weeks but apparently he had vacation plans so we had to stay around certain dates. Are you kidding me?!?! All of this on top of the fact he wasn't on board with any of my birth plan or even discussing the possibility of a VBAC (vaginal birth after caesarean) just turned me off to going with him again, so I switched! By the recommendations of some amazing strong mamas, I will now be going to UCSD and couldn't be more excited! They are exactly what I am looking for as it's a holistic hospital. I don't have to request immediate skin to skin, delayed circumcision, no vaccinations....they just DO it that way. I had my initial appointment on Tuesday and go to meet the OB on the 19th to discuss possible VBAC, if not then schedule my family centered cesarean birth. I am feeling good, just low energy but with a little bug to keep up with and run all over San Diego that's to be expected. All seems to be well and healthy with the baby but I don't think I will REALLY be at ease until he's here and I can see for myself.
Now for some random updates:
Naysa's Encephalocele repair surgery is scheduled for August 27th, unfortunately it couldn't be moved up so it will happen a week or so after the baby gets here which means I won't be able to stay the night with her in the room :( We see Dr. Levy in two weeks so talk more about the surgery and discuss replacing her shunt with an ETV when it fails, as shunt failure is VERY common after these types of surgeries.
June 1st our first niece was born! A beautiful little 8lb girl named Ada Leoni :) Benjamin was able to be there with his brother and his wife for the birth. I couldn't be more proud of my seester who had a drug free home birth at 22 years old, brave lady! Everyone is doing well and adjusting to life as new little family.
Benjamin is still med-down from his motorcycle incident but healing up great so hoping for a med-up status at his next visit with the Ortho so he can finally submit his cross rate package for SAR Corpsman and get us out of San Diego early! ***FINGERS CROSSED**
Saturday, June 1, 2013
:(
I don't know if it's the hormones or if I'm just long overdue a good cry, but last night and today have been rough. I find myself mourning the toddler I am missing out on if Naysa was a neuro typical child. I was reading to her last night and she did her usual feeling of the book but not paying any attention, head back and forth and I just started to cry. Here I am so desperate to bond and read to my baby girl, wishing she would bring me book after book to read to her or read the same one over and over while other parents are ignoring their kids or telling them to go play by themselves. I want to constantly be picking up toys because SHE left them all over the house, not because I pulled them out to play with her. I want to step on barbies in the middle of the night and have princess tea parties. It's so unfair and today I can't handle it! Don't tell me to be thankful, she's come so far or anything else you are thinking to say because I KNOW! I know you mean well but until you've been in my situation and know the things buried deep down I would never dare share, you cannot say anything to make it better so please don't even try. It's not fair my girl gets so frustrated because she wants to talk but can't, it's not fair I know she would be so much fun, so loving, so funny and kind if she could do things like a typical child. Why isn't she progressing?? All of the therapy, the diet, the supplements, the time, the repetition...why can't I help her?? I feel like there is something I'm not doing and I don't know what. I feel like I'm failing her and it's making me lose hope, lose motivation. I just want to hear her say a word...any word, a clear, intentional word.
Saturday, April 13, 2013
Thank you, Bug :)
Naysa Diane,
In your two short years, you have taught me more than anyone could dream to learn in their lifetime. Because of you I don't immediately judge a parent who can't control their child, as there may be underlying behavioral causes such as Autism or Bipolar disorder. Because of you I look the mother of a physically disabled child in the eyes and give a knowing smile instead of pretending I don't see them. Because of you I know real and true love. Your milestones are miracles and not just a time line of development. Your dada and my hearts burst at the seams with pride and joy when you learn or do something new, no matter how small or insignificant it would seem to the parents of a typical child. Nothing is ever overlooked or missed because we watch you so closely with such amazement. We don't get frustrated when you won't eat something we just made for you or when you refuse to try something new, we thank God for your incredible chewing abilities and that a feeding tube was never needed. We don't argue over whose turn it is to entertain you or take you to the park, we pray someday you will be throwing a tantrum to go.
There is an entire world that most don't even know exist. It's a world of the strongest men and woman who have chosen to fight, advocate and be there 100% for their special needs child. They live their lives in and out of hospitals, countless doctor appointments and therapies, spending more time on the phone with pharmacies, insurance companies, medical suppliers, offices and respite care than most people do in a lifetime. And they do it with heart. All day, every day...because that is what's best for their child, that is what keeps their child alive. We don't do any of it for recognition and it's actually quite uncomfortable when we get compliments because we are just doing what we assume any parent would do for their child, though I am painfully aware that is not always the case.
Each day with you is a blessing and that's all I can ask for. Another day, another birthday...because I shun the thought and knowledge that your life may be cut short. I promise to do whatever possible, everything in my power to help you succeed and thrive. I love you bug, thank you for teaching me my love and strength knows no limits.
In your two short years, you have taught me more than anyone could dream to learn in their lifetime. Because of you I don't immediately judge a parent who can't control their child, as there may be underlying behavioral causes such as Autism or Bipolar disorder. Because of you I look the mother of a physically disabled child in the eyes and give a knowing smile instead of pretending I don't see them. Because of you I know real and true love. Your milestones are miracles and not just a time line of development. Your dada and my hearts burst at the seams with pride and joy when you learn or do something new, no matter how small or insignificant it would seem to the parents of a typical child. Nothing is ever overlooked or missed because we watch you so closely with such amazement. We don't get frustrated when you won't eat something we just made for you or when you refuse to try something new, we thank God for your incredible chewing abilities and that a feeding tube was never needed. We don't argue over whose turn it is to entertain you or take you to the park, we pray someday you will be throwing a tantrum to go.
There is an entire world that most don't even know exist. It's a world of the strongest men and woman who have chosen to fight, advocate and be there 100% for their special needs child. They live their lives in and out of hospitals, countless doctor appointments and therapies, spending more time on the phone with pharmacies, insurance companies, medical suppliers, offices and respite care than most people do in a lifetime. And they do it with heart. All day, every day...because that is what's best for their child, that is what keeps their child alive. We don't do any of it for recognition and it's actually quite uncomfortable when we get compliments because we are just doing what we assume any parent would do for their child, though I am painfully aware that is not always the case.
Each day with you is a blessing and that's all I can ask for. Another day, another birthday...because I shun the thought and knowledge that your life may be cut short. I promise to do whatever possible, everything in my power to help you succeed and thrive. I love you bug, thank you for teaching me my love and strength knows no limits.
Friday, April 5, 2013
Ultrasound Scare
Yesterday's appointment...where do I begin? I was excited to go because it was the first scan Ben had been able to attend since the first one confirming pregnancy, but I am also always nervous and I know he is too. We sat in the waiting room in silence, a comment here and there but mostly trying to distract ourselves until they called my name. Everything started off well, he is perfectly perfect...until I noticed her spending a lot of time on his stomach. I was afraid to ask if everything was okay and why she was looking there for so long so I just held my breath until she spoke. She said she couldn't see any fluid in the stomach and she was going to see if the Doctor wanted to take a look. As she left the room my mind raced and I had vivid flashbacks to the day we were told of Naysa's Encephalocele, I felt the tears burning behind my eyes and prayed. My poor Benjamin is sitting in the chair next to me as I lay on the table staring at the ceiling, doing what he always does when I'm upset...tries to make me laugh. It didn't work but I love him for trying, especially because I know he was just as panicked on the inside. Every time I heard a nurse or doctor talking or hanging around out side our door I prayed they weren't coming in with a complicated medical term for a condition our baby had. The thing that caught me so off guard is I didn't have a feeling anything was wrong, this entire pregnancy I haven't had that feeling and with Naysa I did. I didn't buy baby clothes or anything baby related until I was almost 20 weeks because I was so weary. That day we made the 40 minute drive from Atsugi to Yokosuka I had a feeling in the pit of my stomach something wasn't right and I wasn't able to just enjoy going to see our baby with my husband for the first time.
When she finally came back in she said we would check one more time and then we would just be sent downstairs to see the OB. Another check and still couldn't see the stomach so downstairs we went. We sat in that little room for about 30 minutes waiting on the Doctor and I couldn't stop thinking. She finally came in, asked a few routine questions which I barely remember mumbling answers to. She started to explain the situation and said it could just be bad positioning and the baby isn't cooperating and to come back in 3-4 weeks. Yes....almost a MONTH to sit on the fact there is a possibility my baby has a birth defect. My eyes watered and I stopped responding to her questions other than "mmhmm." I felt my face flush and was about to lose it, thankfully she saw this and came up with a solution. She called back upstairs to see if they could take another quick look and walked us up to make sure we got right in. I got back on the table and Ben went to the restroom, I held my breath as she applied the warm gel and started to roll the wand towards the stomach...and there it was! The little dark grey patch I was so desperately hoping they would find. She snapped a photo and I could breathe again. It was so quick, I was already off the table by the time Ben came back from the restroom. He walked in with worry on his face and I told him everything was fine so he could breathe again too. I couldn't shake the funk I was in the rest of the day, that whole experience just wiped me out. So very thankful he is healthy.
When she finally came back in she said we would check one more time and then we would just be sent downstairs to see the OB. Another check and still couldn't see the stomach so downstairs we went. We sat in that little room for about 30 minutes waiting on the Doctor and I couldn't stop thinking. She finally came in, asked a few routine questions which I barely remember mumbling answers to. She started to explain the situation and said it could just be bad positioning and the baby isn't cooperating and to come back in 3-4 weeks. Yes....almost a MONTH to sit on the fact there is a possibility my baby has a birth defect. My eyes watered and I stopped responding to her questions other than "mmhmm." I felt my face flush and was about to lose it, thankfully she saw this and came up with a solution. She called back upstairs to see if they could take another quick look and walked us up to make sure we got right in. I got back on the table and Ben went to the restroom, I held my breath as she applied the warm gel and started to roll the wand towards the stomach...and there it was! The little dark grey patch I was so desperately hoping they would find. She snapped a photo and I could breathe again. It was so quick, I was already off the table by the time Ben came back from the restroom. He walked in with worry on his face and I told him everything was fine so he could breathe again too. I couldn't shake the funk I was in the rest of the day, that whole experience just wiped me out. So very thankful he is healthy.
Thursday, March 28, 2013
Cranio
Well we had the long awaited appointment with the plastic surgeon yesterday and it was less than climactic. He told us how he would be performing the surgery and the recovery time frame to expect but still no dates or even an estimate of dates. She will have one surgery and that will be to graft the hole where the Encephalocele was. As far as a reconstructive surgery to round out her head, he feels it would be more a cosmetic procedure than anything so we have decided to opt out of that one. Her head is flat in the back but it's not inhibiting brain growth which was my main concern, if anything is inhibiting brain growth it's her shunt which I will be talking to Dr. Levy about next month. So, I will break the procedure down for you with a sorry excuse for an illustration :)
He will cut the bone in a zig zag sort of pattern and bring them together over the hole so there is very little need for anything foreign or artificial. This may leave some gaps depending on how he is able to cut in which case he will use cadaver bone as children tend to reject anything artificial as they grow. Dr. Cohen said as Naysa's head grows there is a chance a gap may form again but most likely it will be small enough a second procedure won't be necessary, it will be watched closely just to be sure. The recovery is fairly quick and should everything go smoothly her hospital stay will only be 2-3 days. We see Dr. Levy April 23rd so hopefully we can get things moving along after we see him, I'd really like her to have had surgery and be recovered by August before her baby brother comes so she can enjoy and bond with him. Speaking of the girl, I think I just heard a little squeal of hers which means she is awake from her morning nap :) Gotta go play!
He will cut the bone in a zig zag sort of pattern and bring them together over the hole so there is very little need for anything foreign or artificial. This may leave some gaps depending on how he is able to cut in which case he will use cadaver bone as children tend to reject anything artificial as they grow. Dr. Cohen said as Naysa's head grows there is a chance a gap may form again but most likely it will be small enough a second procedure won't be necessary, it will be watched closely just to be sure. The recovery is fairly quick and should everything go smoothly her hospital stay will only be 2-3 days. We see Dr. Levy April 23rd so hopefully we can get things moving along after we see him, I'd really like her to have had surgery and be recovered by August before her baby brother comes so she can enjoy and bond with him. Speaking of the girl, I think I just heard a little squeal of hers which means she is awake from her morning nap :) Gotta go play!
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