Note: If you aren't a Penn Stater... you might want to move on to my next post. This was simply the easier way for me to address many at once. Thanks to my followers in advance for understanding.
With this whole Penn State debacle being incredibly multifaceted I often can't decide which aspect to write about first. I could focus on politics, because to me, that's at the core of this whole thing. I could focus on individuals and their not so credible backgrounds, take your pick, Tripony, Freeh, Corbett... I could focus on the media who continues to prove time and time again how they have lost all credibility as impartial journalists and are merely like any other power hungry and money driven corporation. I could focus on the victims, which is one of the few issues I have always been passionate about. I did my undergrad scholarly paper on the effects of child physical abuse. I believe I got a 98% on this final assignment I completed at Penn State, doing the bulk of my research in the Paterno wing of Pattee Library.
I feel like if I don't write about the victims I'll be viewed as uncaring. If I write about how it has had a dramatic impact on me personally and the loss I personally feel on so many levels, I'm somehow the bad guy who misses the whole point of the horrors the victims endured. Despite having worked with victims of abuse for many years and seeing some of the most horrific cases anyone can possibly imagine, people will still accuse me of being selfish or not getting it. I'm pretty sure most of these people have never actually seen the physical and emotional impact of severe abuse on a child and I'm quite sure, they don't get it, nor would they want to.
For me, as I anticipate my trip to Penn State in just 5 days, the loss I feel is what is hitting me the most. Lately anyway, my emotions about all of this are often all over the place. It is this loss and the fact that I have accepted I must take a step back from all of this to regroup and focus on my family.
As I accepted this fact of needing to step back I thought a lot about all I have lost over these nearly 10 months and mostly I feel I have lost my image of Happy Valley. Happy Valley was a place that had this untouchable aura surrounding it. I used to enter this parallel universe upon turning right at the Snappy's onto 322 and the butterfly's would start to flutter with anticipation. It was like being sucked into this bubble of companionship, family and safety. Safety. To me, and I think most Penn Staters, I had this idea that nothing bad could happen in Happy Valley. Sometimes I wonder if that's precisely how all of this was able to happen. The Penn Staters on the board must have had this same idea and that's how they were so inept in their ability to deal with it. After they realized the Happy Valley we all thought we knew ceased to exist decades ago, they should have stepped up though, so don't look at that as an "apologist" sort of statement. Even Joe Pa didn't read the grand jury report until he was forced to because, really, how bad could it be? Nothing truly bad could happen in Happy Valley. And certainly not by one of our own. It was like we were off limits to evil, at least in my mind.
Now, we knew this wasn't exactly true, but it was the imagine I had. It was as if Happy Valley was the closest place I could find that was well, perfect, the world as it should be. From time to time you'd hear of bad things happening but in the grand scheme of things, Happy Valley was as close to heaven as mortals could get. It was my safe place. It was filled with an intoxicating energy I used to crave like a drug. I still do, but then I remember, it doesn't exist, not in the same way.
To have this image stripped away I think has been the most difficult thing for me to accept. It's like a world I knew never existed. It's like all of it was a mirage, a figment of my imagination. I went back the week after Joe Pa passed just to make sure Happy Valley was still there. I needed to see it for myself. I needed to walk down the streets, see, the lion shrine, the stadium standing there in all it's grandeur, the student book store and family clothesline, Baby's, Irvings, the CVS on the corner of Beaver and Pugh I used to live above.... I needed to see it all existed. Funny thing is, I keep forgetting that I no longer turn at Snappy's since the roads were redone. Instead, I don't get the chance for those butterfly's to start and the energy to suck me in because all of a sudden there I am, on Atherton, and I think, wow, it's all so different.
Now, that thought is an epic understatement. Different just doesn't quite describe it. Yet, in so many ways it's all still the same too.
I realized this as I did what seems like my constant scans of the many PSU facebook pages created in the wake of this mess. I have found that these pages I go to daily have become that place I lost. My Happy Valley. WE have become that sense of companionship and family and safety I once viewed as an actual place. I realized that Happy Valley is in me, it's in each of us, because WE created it. For over 150 years, those who came before us and those who have come after us ARE this Eden of my mind. This gave me comfort in the sadness of all it seems I have lost. You all have given me comfort. You all have made me feel less crazy for feeling like I've been grieving over this loss of a place. As a Jew, it's like you all are my diaspora :)
BUT, the constant scanning of these pages as to not miss anything pertinent, the letter writing, the endless reading of article after article that helps to fill in all the missing pieces of this tragedy that the media refuses to report, commenting on our pages threads and working to set the record straight in the hate filled comment sections everywhere else, including on my own facebook page, losing sleep over what feels like a hopeless fight most days, finding myself more and more angry over this loss, other's ignorance and just how damn unfair this ENTIRE thing is, from the victim's loss of innocence to the never ceasing things the BoT can find to put blue ribbons on, I simply can't take it anymore.
I am starting a new journey in my life, one I've waited many years to find an opportunity to take. I began my yoga teacher training program a few days ago. I've been trying to use my yoga as a means to help clear this incessant chatter over what to write to the BoT, the President, Bob Costas and everyone else under the sun. I've used my yoga to help me release some of this anger that seems to compound daily with each lie or distortion of truth I read. I've found I am often unsuccessful and have not been able to truly commit to this next step in my life because I simply can't let it all go. It is beyond all consuming. It feels like a full time job, as I know it does for most of you too. The thing is, I have a full time job which I committed myself to when I quit "working" just over two years ago. I have a 3 year old and an 18 month old that are craving more of my attention, attention I have not been giving them so I can stay on top of all this other stuff. This has compounded my feelings of anger and loss with that of guilt.
I also live each moment with the uncertainty of how alcoholism will impact my family that day. Lately, it's been impacting us a lot and as such, my kids need even more of me. I once again am faced with many difficult decisions that will impact not only the rest of my life but the lives of my children as well. I am open about this here because it's part of my blog anyway, so it's not "news". As such, the only solution I can come up with is to take a step back. I haven't figured out how to force myself to let go a bit as I'm not one to back away from a fight I'm passionate about. I'm also not one to back away when I know I'm right and want to prove that to all those who question it. That's my own selfish motive though. Either way, I need to take a step back, for my own sanity and for my kids.
Maybe it means, only reading posts on one page each day. Maybe it means not commenting so I don't feel compelled to check back so often. Maybe it means not taking part in the abundant writing campaigns. Maybe it means choosing a certain time of day to check in and sticking to that. I just don't know BUT I know seeing the same names each day, commenting on the same things and you all thinking the same things I do has been so comforting I felt I needed to explain why I wouldn't be around as much. I also thought some of you might have ideas for how I can still fight while being able to focus on my family and myself a lot more than I have been for months now.
It always brings me back to "If I'm not for myself, who will be for me? If I'm not for others, what am I? And if not now, when?" My very first blog post and life motto.
I must be for myself right now or I will not be any good for my family, including my PSU family. I figure, if not now, when? I'm finally doing something for me, my yoga training, so I need to give it all of me or it's pointless.
I fear losing this connection with all of you though will send me back to feeling like I have lost all I thought was true about Happy Valley. I fear I will feel alone in all this again. I'm hoping the energy from the stadium on September 1st will stay with me these next few months to keep me strong and to remind me what we are fighting for. I'm hoping whatever way I decide to step back will sustain me. I'm hoping many of you have some ideas for stepping back while not feeling like I'm too overwhelmed to take care of myself and my family the way I want and need to. I'm hoping those of you have have "friended" me will help keep me in the loop so I can remain educated on the truth and be able to combat the ignorance as it presents itself to me.
I'm REALLY hoping that my yoga practice and teacher training will help me refocus to a point I am able to do ALL of this... all I have been doing to fight for the truth AND allowing me enough time for my training and my family and still getting some sleep!
I love Penn State, I love my Penn State family and I consider each of you family, especially those I've been "talking to" to months now. I dream each day I will wake up to the breaking news of the truth and I know with so many fighting day in and day out one day we will. So.... Fight On Family! I'll be back soon.
We Are....
Monday, August 27, 2012
Thursday, August 16, 2012
Waiting...
I haven't written in awhile. Part of it is because I'm still so preoccupied by everything Penn State and it's not something I feel like blogging about, I get my "therapy" for that elsewhere and it's enough.
Part is because I planned to write a lot on vacation and ended up without any wifi! It was like vacationing in 1989 but it was GREAT. I know it's hard to believe but I actually relaxed on vacation with a 1 and 3 year old! Go figure.
Part is because I just don't know what to say. Other than my alma mater experiencing it's darkest days my life took a turn back to the on and off darkness of living with an alcoholic all while being rocked by some long awaited answers to my daughter's medical issues.
My life has been like a bit of a roller coaster and I guess I was waiting for the ride to slow down so I could focus a bit and pinpoint which part of my chatter was the loudest and in need of some self therapy on here. I kept waiting and waiting for... I'm not sure, the tide to turn, some positive news to share maybe. Today I realized, that's just life, the ups and downs and all around, so I better get back to writing before time gets away from me and I'm back at square one again.
So, here I am.
I thought today about what was most pressing in my chatter. I thought about why I'm so "obsessed" with my fight for my school and the truth and justice. Other than the fact that's simply who I am when I know in my core that it's the right thing to do, I wondered if there was more to it. I wondered, like I often do when I get so immensely wrapped up in something, if I was trying to block anything out. When I nearly started crying after my daughter started her odd hand thing again (I'll get to that) I realized that maybe I'm trying to suppress all the fear, worry and anxiety I'm feeling regarding her. Because there is A LOT of those emotions right now and I know if I allow them to take over they will incapacitate me. So, I preoccupy my thoughts instead.
For those that don't know, we have been seeing specialist after specialist trying to get to the route of a couple issues with our little girl. It started with her reflux "returning" after about 8 months weaned from medication. She was diagnosed with at 6 weeks old and successfully weaned shortly after Caleb was born. It never fully went away but it wasn't too bad and didn't seem to bother her. By early this year it was so bad I knew it needed addressed again though, and so it began... again.
We went back to the pediatric GI, a new one since we had moved. We tried an allergist, which was pointless. No one bothered to read old records, I had to fight for tests not to be repeated, reiterate everything like they had no idea why we were there and go through everything we had already tried. We went through a whole new round of tests including an upper GI which was so traumatic I'll forever have the image of my baby strapped down yelling, "Mommy, help me, help me, mommy, I'm scared, mommy, all done, help me, I'm scared" over and over for 30 minutes ingrained in my memory. I felt completely helpless to comfort my little girl for the first time. Sure, I could have stopped the test but the alternative was anesthesia and a scope and putting her under scared the hell out of me, anything can happen.
The test concluded she has constipation and reflux. No kidding? Thanks. Though I should be relieved it wasn't anything crazy like organs out of place, I couldn't help but feel annoyed.
Then we got results a couple weeks later that said her pancreas wasn't producing enough digestive enzyme to break down and absorb fat. I still don't know exactly what that means but I had already started her on a homeopathic digestive enzyme which the doctor said should suffice so... we'll wait and see.
Then it was on to the pediatric endocrinologist. A what? What the hell do they do? I honestly am still not exactly sure but his job was to figure out why she isn't growing/make sure it's not simply genetics, which I have thought it was all along. I mean we aren't exactly big people so what else would it be?! Another round of tests... on her birthday because I was not taking her back in that radiology room where I knew she would flip out upon seeing that x-ray machine. Daddy took off for his little girl's big 3rd birthday, so, the hospital is where the day began.
One test was a blood test for some genetic thing the doctor said was less common but more serious and he just wanted to rule it out. I didn't think twice about it but rather was freaking out and consumed with worry that it would come back she had growth hormone deficiency. I have no intention of giving her growth hormones and I didn't want to feel like a bad parent for refusing hormone treatments. I buy organic milk to avoid giving her unnecessary hormones and someone was going to tell me to willingly put them in her body?! I called her pediatrician...again....freaking over the new information. She calmed me down... again.... I love her doctor.
When the endocrinologist doctor himself called to go over the results, and then called back first thing the next day after I missed his call, I thought, uh oh.
He explained to me that she has that genetic thing I didn't think twice about BUT it does not appear that she is growth hormone deficient. Of course not, of course it's the worse of them. She has what's called a balanced chromosome translocation. Yes, it's a mouthful though not all that difficult to understand. A part of two chromosomes essentially switched places. Because they simply switched it means no genetic material was lost. This is good. But they can't say if whatever those genes are responsible for will react properly being in the wrong place. So, we wait. For nearly a decade we simply have to WAIT.
What are we waiting for? Why so long? We are waiting to find out if my little girl can have kids. Yes, kids of her own. Or, if she will have early ovary failure. We are waiting to see how this chromosome thing may or may not effect her reaching puberty, which can have all sorts of issues associated with that, including fertility issues.
My heart sank. I have told myself ANYTHING can happen when it comes to medical technology by the time she wants kids...I've told myself this may be a moot point, maybe she won't even want kids... and then my heart breaks all over at the idea of her desperately wanting biological children and finding out before she can even drive a car that she will never be able to. BUT, it's not a guarantee, just a higher probability than the average Joe, or Jane in this instance. How high? They aren't sure. But he has two other girls he sees with the same region of their X chromosome impacted in some way (not the exact same way as Rylie's) and one hasn't reached puberty and the 14 year old's ovaries are starting to fail.
A LOT to take in for a momma, huh? Well, it doesn't end there. Nope, the hits kept coming.
Her bone age (the hand x-ray) came back at 2 years old. She turned 3 last month. Why is my baby so tiny if she's not growth hormone deficient? We don't know exactly. Maybe it's because of the chromosome thing, maybe not. What we do know is this... if she continues on the growth curve she's on she will only hit 4'6"-4'8". All the women on both sides may be small, but this isn't quite normal. Something is amiss. We also know she is an extremely picky eater which may be because of her reflux, constipation and digestion issues, or maybe it's just because she's three. After counting her calories for a few days we also know that she is not getting nearly enough to grow properly so her reason for not growing could be as simple as this, she needs more food. I pray it's this.
Now to figure out how to get her to eat more without an appetite stimulant. To me, "stimulant" just sounds like a drug I don't want to put in her little body if I can avoid it in any way.
NOW, why was I nearly crying yesterday you might recall from earlier? The odd hand thing? Yes, well, Rylie started doing this odd hand thing some time ago. I honestly can't recall when but in my attempt to try to figure it out I think it was after her binky was a thing of the past. It's not all the time either, it comes and goes. As someone who used to work with children on the autism spectrum I know what she is doing is stimming. But it looks more like she's playing with an imaginary piece of string. She may do it for hours in the middle of the night. She imaginary plays while doing it. At 3am some nights I'll hear.... "look, mommy, a picture!" What the heck do you say to that?!
I could deal with her doing this all night if it was her way of decompressing, rehashing her day in her own strange way, whatever. But she started doing it more over the past week and now it's not just when she wakes at night. She did it while sitting on the potty before bed the other day and flipped out that she wasn't done on the potty but then continued to do her hand stim... with her eyes tightly closed. She did it again yesterday when we got home from the library. I never saw her do it in the middle of the day. I took a quick video, asked her what she was doing even though she rarely answers and when she does it usually includes her imaginary play as a reason... "I'm playing with a bug" or something like that. Then she was done with it and I haven't seen it again, 24 hours later. But I was freaking out inside and went to the kitchen to text my husband about what we should do.
He said, let's wait and see. Wait a week. Maybe she's just still upset about vacation being over. May sound funny but she was really upset that we left the beach (and amusement park) and came home. Me too! But it was also when it increased. It's also when she started grinding her teeth, again... and a lot. Another stim.
Maybe he's right, maybe she is just upset. Or, maybe she senses my anxiety over all these unanswered questions and this is how she's dealing with it. Maybe it's something else. My behavior therapist side started doing some research. There's a lot of scary stuff about stimming though it is very reasonable to conclude it's perfectly normal, considering she has no other developmental things (other than her growth and digestive stuff I mean) Well, and her sleep issues which no one can seem to explain, other than maybe it's her reflux, which is certainly a reasonable conclusion. She met all her milestones on time, she's social and plays well, she has school ready skills (A,B, C's, 1,2,3's...), there's no gross or fine motor issues, etc. and though I felt she was slower to talk she was always within normal limits and it has really picked up lately. I keep thinking, maybe I'm missing something because it's impossible to totally remove the mom hat in my "evaluation". What if I'm missing something?
If the stimming stuff didn't scare me enough, doing searches relating to that AND the chromosome thing brought about a whole new set of fears that I damn near stopped breathing. Then the anxiety, worry wart mommy in me took over and thought, what if there's more, like something really, really bad more?
This time, the word wait is helpful, therapeutic even.
There are so many levels to her various issues I need to remind myself to take them one at a time. We haven't even met with the genetics doctor yet, heck, they haven't even called me to set up the appointment! Which annoys me. But I'm not exactly the most patient person when it comes to getting answers about my kids health. Who am I kidding, I'm not exactly patient about anything!
Lately though, I mostly fear what if the doctors are missing something? What if they aren't steering us in the right direction? What if, what if, what if.... It's hard to trust any of them when I question the competence of nearly everyone lately. I could get second opinions but the idea of putting her through any more tests when this all seems pretty clear makes me think I'm just getting carried away. I'm just being an overly worried mom and I just need to wait and see what comes of the things we are trying.
Who knows, maybe she'll get over her picky eating and by the end of the year we'll see her inching her way onto the growth chart again. I'm hoping the peer pressure at preschool will get her to try new foods at snack time and open a door for us at home. Maybe the odd hand stims and teeth grinding are simply anxiety or her trying to keep herself awake to avoid bedtime and it'll pass as she matures. Research I've read states this is certainly possible, especially if the child is otherwise typical. Maybe the digestive enzyme I have her on is working and that follow up test will come back normal and we'll have one problem solved just like that. Maybe. Just wait. Be patient. Ha.
I have to have faith that I have been on top of all of this since she was 6 weeks old. I have followed up and taken her to every specialist recommended to cover all our bases and ensure it's nothing more. I've tried everything suggested to us by damn near everyone who has ever suggested something. I can't imagine there is any more I can reasonably do except wait for now and see what happens with all we are trying. But waiting is oh so hard when you're a mommy and you can't fix what is wrong with your child with the snap of your fingers or even a band-aid.
I know there are people out there dealing with so much more with their children and my heart aches for these parents. This is quite enough for me. I pray, desperately, that this is all it is and we are doing right by her. As we wait....
Part is because I planned to write a lot on vacation and ended up without any wifi! It was like vacationing in 1989 but it was GREAT. I know it's hard to believe but I actually relaxed on vacation with a 1 and 3 year old! Go figure.
Part is because I just don't know what to say. Other than my alma mater experiencing it's darkest days my life took a turn back to the on and off darkness of living with an alcoholic all while being rocked by some long awaited answers to my daughter's medical issues.
My life has been like a bit of a roller coaster and I guess I was waiting for the ride to slow down so I could focus a bit and pinpoint which part of my chatter was the loudest and in need of some self therapy on here. I kept waiting and waiting for... I'm not sure, the tide to turn, some positive news to share maybe. Today I realized, that's just life, the ups and downs and all around, so I better get back to writing before time gets away from me and I'm back at square one again.
So, here I am.
I thought today about what was most pressing in my chatter. I thought about why I'm so "obsessed" with my fight for my school and the truth and justice. Other than the fact that's simply who I am when I know in my core that it's the right thing to do, I wondered if there was more to it. I wondered, like I often do when I get so immensely wrapped up in something, if I was trying to block anything out. When I nearly started crying after my daughter started her odd hand thing again (I'll get to that) I realized that maybe I'm trying to suppress all the fear, worry and anxiety I'm feeling regarding her. Because there is A LOT of those emotions right now and I know if I allow them to take over they will incapacitate me. So, I preoccupy my thoughts instead.
For those that don't know, we have been seeing specialist after specialist trying to get to the route of a couple issues with our little girl. It started with her reflux "returning" after about 8 months weaned from medication. She was diagnosed with at 6 weeks old and successfully weaned shortly after Caleb was born. It never fully went away but it wasn't too bad and didn't seem to bother her. By early this year it was so bad I knew it needed addressed again though, and so it began... again.
We went back to the pediatric GI, a new one since we had moved. We tried an allergist, which was pointless. No one bothered to read old records, I had to fight for tests not to be repeated, reiterate everything like they had no idea why we were there and go through everything we had already tried. We went through a whole new round of tests including an upper GI which was so traumatic I'll forever have the image of my baby strapped down yelling, "Mommy, help me, help me, mommy, I'm scared, mommy, all done, help me, I'm scared" over and over for 30 minutes ingrained in my memory. I felt completely helpless to comfort my little girl for the first time. Sure, I could have stopped the test but the alternative was anesthesia and a scope and putting her under scared the hell out of me, anything can happen.
The test concluded she has constipation and reflux. No kidding? Thanks. Though I should be relieved it wasn't anything crazy like organs out of place, I couldn't help but feel annoyed.
Then we got results a couple weeks later that said her pancreas wasn't producing enough digestive enzyme to break down and absorb fat. I still don't know exactly what that means but I had already started her on a homeopathic digestive enzyme which the doctor said should suffice so... we'll wait and see.
Then it was on to the pediatric endocrinologist. A what? What the hell do they do? I honestly am still not exactly sure but his job was to figure out why she isn't growing/make sure it's not simply genetics, which I have thought it was all along. I mean we aren't exactly big people so what else would it be?! Another round of tests... on her birthday because I was not taking her back in that radiology room where I knew she would flip out upon seeing that x-ray machine. Daddy took off for his little girl's big 3rd birthday, so, the hospital is where the day began.
One test was a blood test for some genetic thing the doctor said was less common but more serious and he just wanted to rule it out. I didn't think twice about it but rather was freaking out and consumed with worry that it would come back she had growth hormone deficiency. I have no intention of giving her growth hormones and I didn't want to feel like a bad parent for refusing hormone treatments. I buy organic milk to avoid giving her unnecessary hormones and someone was going to tell me to willingly put them in her body?! I called her pediatrician...again....freaking over the new information. She calmed me down... again.... I love her doctor.
When the endocrinologist doctor himself called to go over the results, and then called back first thing the next day after I missed his call, I thought, uh oh.
He explained to me that she has that genetic thing I didn't think twice about BUT it does not appear that she is growth hormone deficient. Of course not, of course it's the worse of them. She has what's called a balanced chromosome translocation. Yes, it's a mouthful though not all that difficult to understand. A part of two chromosomes essentially switched places. Because they simply switched it means no genetic material was lost. This is good. But they can't say if whatever those genes are responsible for will react properly being in the wrong place. So, we wait. For nearly a decade we simply have to WAIT.
What are we waiting for? Why so long? We are waiting to find out if my little girl can have kids. Yes, kids of her own. Or, if she will have early ovary failure. We are waiting to see how this chromosome thing may or may not effect her reaching puberty, which can have all sorts of issues associated with that, including fertility issues.
My heart sank. I have told myself ANYTHING can happen when it comes to medical technology by the time she wants kids...I've told myself this may be a moot point, maybe she won't even want kids... and then my heart breaks all over at the idea of her desperately wanting biological children and finding out before she can even drive a car that she will never be able to. BUT, it's not a guarantee, just a higher probability than the average Joe, or Jane in this instance. How high? They aren't sure. But he has two other girls he sees with the same region of their X chromosome impacted in some way (not the exact same way as Rylie's) and one hasn't reached puberty and the 14 year old's ovaries are starting to fail.
A LOT to take in for a momma, huh? Well, it doesn't end there. Nope, the hits kept coming.
Her bone age (the hand x-ray) came back at 2 years old. She turned 3 last month. Why is my baby so tiny if she's not growth hormone deficient? We don't know exactly. Maybe it's because of the chromosome thing, maybe not. What we do know is this... if she continues on the growth curve she's on she will only hit 4'6"-4'8". All the women on both sides may be small, but this isn't quite normal. Something is amiss. We also know she is an extremely picky eater which may be because of her reflux, constipation and digestion issues, or maybe it's just because she's three. After counting her calories for a few days we also know that she is not getting nearly enough to grow properly so her reason for not growing could be as simple as this, she needs more food. I pray it's this.
Now to figure out how to get her to eat more without an appetite stimulant. To me, "stimulant" just sounds like a drug I don't want to put in her little body if I can avoid it in any way.
NOW, why was I nearly crying yesterday you might recall from earlier? The odd hand thing? Yes, well, Rylie started doing this odd hand thing some time ago. I honestly can't recall when but in my attempt to try to figure it out I think it was after her binky was a thing of the past. It's not all the time either, it comes and goes. As someone who used to work with children on the autism spectrum I know what she is doing is stimming. But it looks more like she's playing with an imaginary piece of string. She may do it for hours in the middle of the night. She imaginary plays while doing it. At 3am some nights I'll hear.... "look, mommy, a picture!" What the heck do you say to that?!
I could deal with her doing this all night if it was her way of decompressing, rehashing her day in her own strange way, whatever. But she started doing it more over the past week and now it's not just when she wakes at night. She did it while sitting on the potty before bed the other day and flipped out that she wasn't done on the potty but then continued to do her hand stim... with her eyes tightly closed. She did it again yesterday when we got home from the library. I never saw her do it in the middle of the day. I took a quick video, asked her what she was doing even though she rarely answers and when she does it usually includes her imaginary play as a reason... "I'm playing with a bug" or something like that. Then she was done with it and I haven't seen it again, 24 hours later. But I was freaking out inside and went to the kitchen to text my husband about what we should do.
He said, let's wait and see. Wait a week. Maybe she's just still upset about vacation being over. May sound funny but she was really upset that we left the beach (and amusement park) and came home. Me too! But it was also when it increased. It's also when she started grinding her teeth, again... and a lot. Another stim.
Maybe he's right, maybe she is just upset. Or, maybe she senses my anxiety over all these unanswered questions and this is how she's dealing with it. Maybe it's something else. My behavior therapist side started doing some research. There's a lot of scary stuff about stimming though it is very reasonable to conclude it's perfectly normal, considering she has no other developmental things (other than her growth and digestive stuff I mean) Well, and her sleep issues which no one can seem to explain, other than maybe it's her reflux, which is certainly a reasonable conclusion. She met all her milestones on time, she's social and plays well, she has school ready skills (A,B, C's, 1,2,3's...), there's no gross or fine motor issues, etc. and though I felt she was slower to talk she was always within normal limits and it has really picked up lately. I keep thinking, maybe I'm missing something because it's impossible to totally remove the mom hat in my "evaluation". What if I'm missing something?
If the stimming stuff didn't scare me enough, doing searches relating to that AND the chromosome thing brought about a whole new set of fears that I damn near stopped breathing. Then the anxiety, worry wart mommy in me took over and thought, what if there's more, like something really, really bad more?
This time, the word wait is helpful, therapeutic even.
There are so many levels to her various issues I need to remind myself to take them one at a time. We haven't even met with the genetics doctor yet, heck, they haven't even called me to set up the appointment! Which annoys me. But I'm not exactly the most patient person when it comes to getting answers about my kids health. Who am I kidding, I'm not exactly patient about anything!
Lately though, I mostly fear what if the doctors are missing something? What if they aren't steering us in the right direction? What if, what if, what if.... It's hard to trust any of them when I question the competence of nearly everyone lately. I could get second opinions but the idea of putting her through any more tests when this all seems pretty clear makes me think I'm just getting carried away. I'm just being an overly worried mom and I just need to wait and see what comes of the things we are trying.
Who knows, maybe she'll get over her picky eating and by the end of the year we'll see her inching her way onto the growth chart again. I'm hoping the peer pressure at preschool will get her to try new foods at snack time and open a door for us at home. Maybe the odd hand stims and teeth grinding are simply anxiety or her trying to keep herself awake to avoid bedtime and it'll pass as she matures. Research I've read states this is certainly possible, especially if the child is otherwise typical. Maybe the digestive enzyme I have her on is working and that follow up test will come back normal and we'll have one problem solved just like that. Maybe. Just wait. Be patient. Ha.
I have to have faith that I have been on top of all of this since she was 6 weeks old. I have followed up and taken her to every specialist recommended to cover all our bases and ensure it's nothing more. I've tried everything suggested to us by damn near everyone who has ever suggested something. I can't imagine there is any more I can reasonably do except wait for now and see what happens with all we are trying. But waiting is oh so hard when you're a mommy and you can't fix what is wrong with your child with the snap of your fingers or even a band-aid.
I know there are people out there dealing with so much more with their children and my heart aches for these parents. This is quite enough for me. I pray, desperately, that this is all it is and we are doing right by her. As we wait....
Wednesday, August 1, 2012
You Are Special My Big Girl
I've been working on this one for sometime now, to the point that I have changed the time frame in the first sentence about four times! What I am trying to say just isn't coming out the way I want but here I'll try again....
My baby turned three nearly a month ago now. THREE. yikes! Wasn't it yesterday I was eating nachos, watching The Next Food Network Star when it hit me, and the anxiety of the unknown set in, that my little girl was ready to meet us? Yet that was somehow three. years. ago. Time is passing so fast it makes me realize that in no time my baby, sorry, my "big girl", will be starting school, a teenager, a young woman, leaving us for college and starting a life of her very own! I know, I know, I'm getting ahead of myself a bit. But seriously, it is already flying by.
I wanted to write a letter to her for her birthday but I had just written one recently and thought much of it would be the same. It was just this whole "you're not special" thing was big around that time and I thought I should put my two cents in so she would understand why her daddy and I 100% agree with this notion.
So, here goes.
Hey big girl....
I've been thinking a lot about how we can help you grow into that strong and confident young woman ready to take on the world with what seems like endless obstacles working against us. How can we help you reach your full potential and achieve great things? That question is always floating around my head especially when I say something to you that you may not understand and take the wrong way. You're so young and impressionable and I'm keenly aware that the things I say now can become deeply rooted messages you learn and take to heart. I try to choose my words carefully but well, you're three, and a lot of times that is very hard to do in the moment!
When you're being difficult I try very hard to word it "that's bad" because YOU ARE NOT BAD. I try to remind you all the time that you're a good girl because lets face it, you get in trouble a lot. I worry that I get too frustrated with you too often and you might start to think you're not a good person. Or worse, that you might start to think you're not loved. It's impossible to predict how you might interpret things in that little head of yours. I could do it all "right" and you could still think you're not good enough. And we both know I don't do it "right" most of the time, so mostly I just worry that I'm totally screwing you up!
This adds to my worry because your daddy and I agree with this notion that many people are talking about lately, this idea that you're not special. (click link if you're not sure what I'm talking about) I worry that you will take that the wrong way and well, not think you're special.
So, with all this floating around my head, I needed to clarify something for you my big girl. You ARE special. To us. It's just that, other than your family, that's pretty much where any of your "entitled" specialness ends. We know you, we know what you're made of and we know that everything about you is so very special and we love you. That unconditional love entitles you to being special in our hearts.... always. There are very subtle differences in these words, "entitled", "special", "love"... and it is certainly much too complex for a 3 year old to understand of course. But someday, you'll need to understand. And I'm also more aware of how quickly that day will be here and I don't want to be looking on at my 12 year old throwing a tantrum because you weren't put in the game after only going to 1/2 the practices or even bothering to put the time and effort into it, whatever the "it" turns out to be. Or worse yet, crying over a 5th place trophy that should never even exist to begin with.
We aren't the coddling type. If you get a 15th place ribbon we aren't going to tell you that you're the best. You weren't the best. And that's okay. As long as you tried your best and had fun then we'll be happy, and if you want, we'll just keep practicing and try again to do better next time. But don't expect any "you were awesome, you should have won" crap. There's a reason why we have a winner and a loser. It's an important life lesson that is best to learn early, lest you think you are "special" or entitled to rewards you didn't achieve. One of my favorite lines from the commencement speech above was, "if everyone is special then no one is, if everyone gets a trophy then trophies become meaningless". So true.
If you get a C and didn't study we aren't going to feel bad for you or call your teacher and find a way to get it changed. You didn't earn it. You get what you earn in life and if you need help then you need to ask. Daddy and I will ALWAYS be here to help you work towards whatever it is you desire, but we won't hand it to you and you shouldn't expect anyone else to either. Nothing in life should be handed to you if you don't put any effort in, and there's no reason to be given a reward if you didn't earn it. I know Barney is teaching you the opposite of that right now but that's just not reality....
But again, let me make myself very clear... You and your brother are so very special to us. Just not to the rest of whole world. And that's okay.
No one who is or was special to a vast majority became that way by just showing up. They worked hard, every day, to achieve great things which happened to be recognized by the world. Lots of people do amazing things daily that go unrecognized by most, and that's okay too. The point is that YOU know you're special, that you are confident in yourself, love yourself and are humble enough to know that this alone doesn't entitle you to anything. It's important that you work hard and that you strive to do great things... for you. And that you strive to do good and help make this world a better place... for all of us. Sometimes your efforts won't be noticed. It's okay. Doing great things doesn't entitle you to being special. Nothing you do entitles you to that really.
Nothing worth while is handed to you, nothing. Anything that is isn't worth having anyway. You may end up smart enough to get good grades without trying very hard, like daddy, but push yourself anyway. Try things that are out of your comfort zone and if you're no good at it then feel free to move on. But try. Everyone finds their greatness by focusing on their strengths. It would be silly for you to focus all your efforts on being in the WNBA someday but that doesn't mean if you love basketball you can't go and play, or referee like your great Pap!
"The fulfilling life, the distinctive life, the relevant life is an achievement, not something that fell into your lap"
Another awesome quote from that speech. Some people didn't like this man's speech. But I LOVED it. I 110% agree with him and those that don't, I believe, are the ones helping to create this world where our children get this erroneous idea that they're entitled and special and everything they desire should be served up on a silver platter. I'm sorry big girl, but you will have to work hard to be better than others if you want to get into the college of your dreams and if you desire a certain job. You'll have to work hard to get promotions. You'll have to prove yourself "special" to be successful in the "real" world.
You may choose to stay home with your future children like I did but that doesn't get you off the hook either. Rather, you have to help your own children realize they aren't all that special despite being the most precious thing in the world to you. That my dear is no easy feat but that is also what will help to secure our futures. Helping you grow into a confident young woman, prepared to work hard to achieve great things, not just for yourself but for society, is precisely what makes me special. Maybe not to the world, but I know I'm contributing to our society in a positive way and that's what matters. But I'm not entitled to the "specialness" simply because I'm a mom. I have to work my butt off everyday and it's hard work.
I know you can do it, whatever the "it" may be. While you may not be special to the rest of the world, you are uniquely you and so very special to your daddy and I. You can do great things, and I know you will.... so long as we can survive these treacherous threes!
Love you baby...oops, I mean, my big girl!
Mommy
My baby turned three nearly a month ago now. THREE. yikes! Wasn't it yesterday I was eating nachos, watching The Next Food Network Star when it hit me, and the anxiety of the unknown set in, that my little girl was ready to meet us? Yet that was somehow three. years. ago. Time is passing so fast it makes me realize that in no time my baby, sorry, my "big girl", will be starting school, a teenager, a young woman, leaving us for college and starting a life of her very own! I know, I know, I'm getting ahead of myself a bit. But seriously, it is already flying by.
I wanted to write a letter to her for her birthday but I had just written one recently and thought much of it would be the same. It was just this whole "you're not special" thing was big around that time and I thought I should put my two cents in so she would understand why her daddy and I 100% agree with this notion.
So, here goes.
Hey big girl....
I've been thinking a lot about how we can help you grow into that strong and confident young woman ready to take on the world with what seems like endless obstacles working against us. How can we help you reach your full potential and achieve great things? That question is always floating around my head especially when I say something to you that you may not understand and take the wrong way. You're so young and impressionable and I'm keenly aware that the things I say now can become deeply rooted messages you learn and take to heart. I try to choose my words carefully but well, you're three, and a lot of times that is very hard to do in the moment!
When you're being difficult I try very hard to word it "that's bad" because YOU ARE NOT BAD. I try to remind you all the time that you're a good girl because lets face it, you get in trouble a lot. I worry that I get too frustrated with you too often and you might start to think you're not a good person. Or worse, that you might start to think you're not loved. It's impossible to predict how you might interpret things in that little head of yours. I could do it all "right" and you could still think you're not good enough. And we both know I don't do it "right" most of the time, so mostly I just worry that I'm totally screwing you up!
This adds to my worry because your daddy and I agree with this notion that many people are talking about lately, this idea that you're not special. (click link if you're not sure what I'm talking about) I worry that you will take that the wrong way and well, not think you're special.
So, with all this floating around my head, I needed to clarify something for you my big girl. You ARE special. To us. It's just that, other than your family, that's pretty much where any of your "entitled" specialness ends. We know you, we know what you're made of and we know that everything about you is so very special and we love you. That unconditional love entitles you to being special in our hearts.... always. There are very subtle differences in these words, "entitled", "special", "love"... and it is certainly much too complex for a 3 year old to understand of course. But someday, you'll need to understand. And I'm also more aware of how quickly that day will be here and I don't want to be looking on at my 12 year old throwing a tantrum because you weren't put in the game after only going to 1/2 the practices or even bothering to put the time and effort into it, whatever the "it" turns out to be. Or worse yet, crying over a 5th place trophy that should never even exist to begin with.
We aren't the coddling type. If you get a 15th place ribbon we aren't going to tell you that you're the best. You weren't the best. And that's okay. As long as you tried your best and had fun then we'll be happy, and if you want, we'll just keep practicing and try again to do better next time. But don't expect any "you were awesome, you should have won" crap. There's a reason why we have a winner and a loser. It's an important life lesson that is best to learn early, lest you think you are "special" or entitled to rewards you didn't achieve. One of my favorite lines from the commencement speech above was, "if everyone is special then no one is, if everyone gets a trophy then trophies become meaningless". So true.
If you get a C and didn't study we aren't going to feel bad for you or call your teacher and find a way to get it changed. You didn't earn it. You get what you earn in life and if you need help then you need to ask. Daddy and I will ALWAYS be here to help you work towards whatever it is you desire, but we won't hand it to you and you shouldn't expect anyone else to either. Nothing in life should be handed to you if you don't put any effort in, and there's no reason to be given a reward if you didn't earn it. I know Barney is teaching you the opposite of that right now but that's just not reality....
But again, let me make myself very clear... You and your brother are so very special to us. Just not to the rest of whole world. And that's okay.
No one who is or was special to a vast majority became that way by just showing up. They worked hard, every day, to achieve great things which happened to be recognized by the world. Lots of people do amazing things daily that go unrecognized by most, and that's okay too. The point is that YOU know you're special, that you are confident in yourself, love yourself and are humble enough to know that this alone doesn't entitle you to anything. It's important that you work hard and that you strive to do great things... for you. And that you strive to do good and help make this world a better place... for all of us. Sometimes your efforts won't be noticed. It's okay. Doing great things doesn't entitle you to being special. Nothing you do entitles you to that really.
Nothing worth while is handed to you, nothing. Anything that is isn't worth having anyway. You may end up smart enough to get good grades without trying very hard, like daddy, but push yourself anyway. Try things that are out of your comfort zone and if you're no good at it then feel free to move on. But try. Everyone finds their greatness by focusing on their strengths. It would be silly for you to focus all your efforts on being in the WNBA someday but that doesn't mean if you love basketball you can't go and play, or referee like your great Pap!
"The fulfilling life, the distinctive life, the relevant life is an achievement, not something that fell into your lap"
Another awesome quote from that speech. Some people didn't like this man's speech. But I LOVED it. I 110% agree with him and those that don't, I believe, are the ones helping to create this world where our children get this erroneous idea that they're entitled and special and everything they desire should be served up on a silver platter. I'm sorry big girl, but you will have to work hard to be better than others if you want to get into the college of your dreams and if you desire a certain job. You'll have to work hard to get promotions. You'll have to prove yourself "special" to be successful in the "real" world.
You may choose to stay home with your future children like I did but that doesn't get you off the hook either. Rather, you have to help your own children realize they aren't all that special despite being the most precious thing in the world to you. That my dear is no easy feat but that is also what will help to secure our futures. Helping you grow into a confident young woman, prepared to work hard to achieve great things, not just for yourself but for society, is precisely what makes me special. Maybe not to the world, but I know I'm contributing to our society in a positive way and that's what matters. But I'm not entitled to the "specialness" simply because I'm a mom. I have to work my butt off everyday and it's hard work.
I know you can do it, whatever the "it" may be. While you may not be special to the rest of the world, you are uniquely you and so very special to your daddy and I. You can do great things, and I know you will.... so long as we can survive these treacherous threes!
Love you baby...oops, I mean, my big girl!
Mommy
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