Wednesday, November 30, 2011

This Space Reserved for My Rant Against "Retarded"

I'm just too angry and hurt right now to compose a cohesive post.

Inadequate

Some days (most days?), I feel inadequate as a mother. Here I have this amazing little girl who needs so much from me, and I always feel like I'm coming up short. Am I her therapist or her mother? There simply aren't enough hours in the day to work, take care of school stuff, clean the house, cook dinner, and take care of her every need... So sometimes I skip out on one the therapeutic activities I had planned, or I let her play in her room alone too long while I write a paper instead of playing with her, or I can't do much more than feed and diaper her because my head and my emotions are in too much turmoil, and I can't function at a higher level.

C's overall "umbrella" problem is that she has an unbalanced translocation of chromosomes 7 and 8. She has a partial trisomy (extra material) of 8, and she's missing genes on 7 that are crucial in spine and brain development. Because of that tiny little chromosomal mix-up, she has a whole slew of medical problems encompassing every major system in her body, and those have resulted in physical and developmental disabilities. There is no name for this particular genetic anomaly because it's incredibly rare--something like 15 recorded cases in all of recorded medical history, and 4 of them are in my family. I was told by doctors that there was no way I could be carrying the anomaly that my older brother carries, and yet, after C was born, BAM! Reality smacked us in the face. I had defied all odds and brought into the world a little girl whose chromosomes are all out of whack, and we have no idea what to expect from that, medically or developmentally.

In short, it's MY FAULT that my daughter has disabilities. MY chromosomes were the ones that were screwed up and passed on this anomaly. It wasn't just this pregnancy, it was the two pregnancies that miscarried (presumably because they were missing a huge chunk of genetic material), and it's 75% of any pregnancy I could conceivably carry. I didn't choose to carry this or to pass it on, but it's really hard not to feel responsible when it was your body, as a mother, that failed your child. Then there are the added bonuses like C's bilateral colobomas, which happened during fetal development and don't appear to be linked to the chromosomal situation. Just a fluke because, yet again, my body failed her.

Being bipolar is a daily struggle. With the right combination of medications, you can go days or weeks without even remembering your diagnosis, but then a day comes along where you're just disproportionately sad for no reason, or you have a manic episode and spend too much money and can't sleep and talk too fast because your brain won't slow down. Those days, it feels impossible to keep your head above water, much less take care of a completely dependent young child. The PTSD hits even harder, hurling me into flashbacks or keeping me up all night with night terrors, leaving me walking around in a raw emotional state and a complete mental haze. I just pray that my screwed up body didn't pass along the mental illness along with the crummy chromosomes. I wouldn't be able to take knowing that she suffered emotionally in addition to the many other challenges she faces.

Then there's the anxiety. I know I have to be her strongest advocate in healthcare and education, but it's tough to be assertive when calling a doctor's office triggers a mild panic attack and pushing people has never been your forte. When people aren't cooperative in getting my daughter what she needs, I have to fight every instinct in my body and, against my nature, insist that they listen to me and take care of my daughter. I have to hold my breath and pray sometimes that they won't see me shaking, because I have to appear calm and tough when fighting for her. It's really difficult!

She's an awesome kid, and I love her with all my heart. I treasure her every action and sound, and I melt when I watch her sleep and listen to her slow, steady breathing. She is my baby, the love of my life, my world... But sometimes the outside world steps in and makes showing C what she means to me a nearly impossible task. I don't want her growing up with a mother who is sometimes emotionally vacant or distant. I want her to feel loved at all times and to know she can count on me for anything and everything. But can she? I doubt my abilities as a parent, because I made her this way and can't fix her, and because I'm struggling with so much of my own, it's more difficult to be the mom that she needs. Of course, her needs always come first... But sometimes, I just feel I don't have enough to give. Sometimes, I feel like I'm failing... And that's a tough burden to carry.

Tuesday, November 29, 2011

People

If there's one thing I've learned in my life, it's that there are wonderful people, and there are horrible people.  Then, of course, there are those who fall somewhere in the middle.  My personal experience has been that there are far more wonderful people than horrible people...  So why do the horrible people seem to hold so much of the power?

I'm not talking political power, though there are certainly some extremely horrible people in politics.  In fact, all we ever seem to hear about politicians are the horrible things.  If there are wonderful people in that field (as I'm sure there are), they are virtually invisible.  We can't see them through all the muck and the grime.

No no, what I mean is that the horrible people seem to be the ones who GET to us.  The ones who hold power over our emotions, our experiences, and our lives.  They're the ones we think most about, the ones whose presence seems to be felt most often when they're not even around.  The horrible people are the ones who leave scars that we have to stare at for the rest of our lives.  They're the ones who send us to therapy, get us hooked on anxiety and/or sleeping pills, and drive us to our nightly glass of wine or that one-too-many-shots night out with the girls.  The horrible people are after power, and we hand it right over to them without even thinking.  We LET them darken our skies and lengthen our nights.  We let them in, and then we're too weak or maybe too polite to kick them out when they start to do damage.  Instead of kicking them to the curb, we cling to them, we dwell on their evildoing, and we let them wreak havoc on our lives.

Why don't we, instead, give that power over to the wonderful people in our lives?  The people who show us unconditional love, the people who are always supportive or encouraging, the people who volunteer and spend their time helping others instead of hurting them?  Those in-between people don't get the power because they don't want it or seek it...  But the do-gooders!  They're trying to take back the power in the world, trying to make a change for the better, trying to bring joy and love to anyone they touch, and yet, we just don't let them.

Dear readers, I challenge you all to start taking back the power from the horrible people and giving it to the wonderful people instead.  Don't let some jerk on the subway bring you down; instead, go talk to a friend about the good things in life and let them lift you up.  If you've been scarred as I have, seek out help so you can take back that power for yourself and give it to those YOU choose, not those who took it from you without your consent.

Let's all try to be a little more positive in our lives.  Let's try to stop and smell the roses, to gaze at a rainbow, or to make a wish upon a star a little more often.  Let's rid our lives of the horrible people--just cut them off cold without ever glancing back.  Let's put the power of the world into the hands of the people who want to make the world a better place.  It shouldn't be too hard, because I'm quite sure there are more wonderful people out there than horrible people, and the wonderful people just need a little extra support.

A Bad Thing...

I have OCD and PTSD.  It's a very bad thing when the lock on the front door sticks in the unlocked position.  >.<

My First EMDR Session

This morning was my third visit to the new therapist, but our first time actually giving EMDR a shot.  We started with what I had rated the least emotionally disturbing of my past traumas.  I started out with a lot of trepidation about the therapy, anxiety and stress about the trauma, and a whole big ball of negative emotions in the pit of my stomach.

Now, somehow, after only an hour, I feel empowered.  I feel like I rewrote the ending to that disaster, like I told the *** what I felt about him and what he did, and like I walked away and never looked back.  None of those things actually happened, but we tricked my mind and body into believing they did, and now I'm breathing easier and can think about the experience without reliving it or experiencing profound anxiety.  It has no more power over me than any other memory now...  It's not an ongoing trauma that lives on in my brain.  It's over, it's been resolved, and I can move on now.  After six years.  /whew!

The most interesting thing for me was that, at times, watching the therapist's fingers move back and forth, my mind would actually start to play back memories like a movie between the two ends of his finger movements.  His fingers would slide across my visual field, and I'd get a flash of a black-and-white movie image, and it would slowly move and change with each pass of his fingers.  It wasn't frightening or anxiety-provoking; it was like watching everything from a safe distance, through a protective lens, where I was in control and could change the outcome, or just blink twice really quickly and shut off the film altogether.  It was truly fascinating!

When it was over, my body was relaxed, and I felt exhausted.  Like, go home and take a 3-hour nap without the need for a sleeping pill exhausted.  I also felt like crying, but part of my PTSD prevents me from crying in front of anyone but my husband and daughter (it feels too vulnerable and opens me up for attack), so I just swallowed back the tears and smiled my way out of the office.  When C gets off the bus in twenty minutes and goes down for her nap, I'll probably sit down on the couch under my electric blanket, take a few deep breaths, and have a nice, cleansing cry.  It's still welling up in me, just below the surface, but I can't risk a teary meltdown before I get C off the bus, so I'll just keep pushing it down until she's in bed.

The doctor assured me that he's doing the paperwork to get my future visits approved and that I will qualify for more than 3 visits, so I'm a little less stressed about that now.  It will all get sorted out, and I *WILL* get better!  I just wonder how long it will take...

This first one was the tip of the iceberg, the very least upsetting in a fairly long list of traumas.  It took an hour to sort out.  How long will the harder ones take?  How difficult will it be to trick my brain with those?  How much longer will they have so much power over me and my every thought, move, and breath?  There are a lot of questions...  But today gave me a lot of hope.  I turned one tragedy into a meaningless, powerless memory, so who's to say I can't do that with the rest of them?

I'm feeling positive.  Like I said earlier, I feel empowered.  I can do this.

Monday, November 28, 2011

Did I say goofy? I meant possessed.

Sometimes AnxietyCat is cuddly. Hubby is always goofy.

Christmas Present Success!

I finally found a gift for C that's developmentally appropriate, that she will LOVE, and that I'm proud to give her!  My mom, who knew about it because of my sis-in-law (who also has kiddos with sensory issues and disabilities), turned me onto LakeshoreLearning.com, which is chock-full of educational toys and goodies.  When I found a Sand & Water Table, I couldn't resist.  It's right up C's alley.

Sure, I'll have to reorganize her entire room to find a place for it, but I'm cool with that.  That room needs an overhaul anyway, now that she gets out of bed and destroys things on her own, whether it's naptime, bedtime, or playtime.  Her teacher is always telling me how much she enjoys the water table at school, so I know this is something that C will L-O-V-E, and it's not going to break or be forgotten in a month.

Sadly, it wasn't an inexpensive gift...  But we're justifying it by calling it her Christmas and birthday (in January) gift combined.  We couldn't have afforded it without the 30% CyberMonday special that Lakeshore is having, so I'm very grateful for that.  At last, a gift that C can use, appreciate, that's BENEFICIAL to her, and that I can be happy giving her.  This will be a Merry Christmas after all!

Insurance Woes

The wheelchair company called me today, and, because the prescription for the custom chair came from a doctor out of California, they have to get C's local pediatrician to write a duplicate scrip before they can get it authorized.  Ahhh, the joys of insurance.

Meanwhile, I need to see an oral surgeon about my TMJ, but I can't until I get a referral from MY primary doc, who I've actually never seen before...  So I'm waiting for that appointment (which is scheduled for January because that's the earliest they could get me in) to get a referral to the oral surgeon, because the referral from my dentist wasn't good enough.

Then, of course, there's the current battle with the insurance company over getting my EMDR appointments approved.  How they thought 3 sessions with a shrink was going to accomplish ANYTHING, I will never know.

I'm really tired of our healthcare industry here in the US, of the money-hungry insurance companies that drive up the rates on everything, pay too little while charging too much, and often deny care or assistive devices to those who need them.  It's a failed system; I think we all know that.  It's way past time to do something about it.  People need medical care, and they shouldn't have to jump through hoops to get it!

At least my kid never gets the cold or the flu.  That sure saves us a lot on doctor's visits.

Back on Track!

Well, the holiday long weekend is officially over, C is on the bus on her way to school, and I've got an appointment with my trainer in just under two hours.  I have to clean and vacuum two rooms before C gets home (asleep) at noon so the steam cleaners can clean those rooms (a little gift from the hubby!).  I also have a paper to write and an online final to take by Wednesday.  /whew!  Life is always just a little bit hectic around here.  :)

I am eating nothing but Nutrisystem today, because I need to get back on the dieting wagon ASAP if I'm gonna look good by the time I go home for Christmas in 3 weeks!  Going home means running into old high school acquaintances at restaurants and stores and clubs, which means being sized up to see who's got the better life, the better figure, and the better clothes now.  Well, I'm going to lose the clothing competition hands-down, and those who don't know better will think my life isn't perfect because my daughter has special needs (how very wrong they are!), so I really have to fight on the superficial front and at least have the better figure!  ;)

I'm nervous because my therapist hasn't called me back since the insurance company limited my visits to 3, so I don't know yet if we can start up with my EMDR, which I desperately need.  I feel pushed aside and insignificant because he couldn't even be bothered to return my call and say, "We'll work something out."  It's been nearly two weeks, and I just haven't heard a word from him.  I'm a little angry.  I feel marginalized.  He's supposed to be on my side, supposed to be helping me limp through recovering from my PTSD, and he can't even make a phone call when I'm in crisis?  That's just not cool...  But I'm not writing him off yet.  I need his expertise and experience too much, and he may have worked some insurance magic behind the scenes that I just don't know about yet.  We'll find out about that at tomorrow's appointment.  I won't have to fret much longer.

This was a great weekend for me on Twitter.  I found a whole bunch of great new people to follow, and I have several new followers, myself.  I'm building a network of people who have experiences with special needs, particularly autism (I am LOVING the autism crowd!), parenting, and teaching.  I view these people as companions, peers, and resources...  I am learning so much about parenting a child with autism, which will help me teach children with ASD in a few years when I'm finished with school, and it helps me parent my own little girl, who doesn't have ASD but isn't NT, either.  I am meeting people whose lives are as hectic and emotionally challenging as mine is--people who GET IT.  And then, on top of it all, I'm meeting other teachers who can help give me tips as I enter the world of Special Education.  All of this is huge for me, but I appreciate the companionship most.  It's a lonely, isolating world when your child isn't typically developing, and it's that much lonelier without people on your side who have been there and know what you're experiencing.  Invaluable.

It's Cyber Monday, so I should stay off the computer as much as possible today.  I am completely out of money and can't afford to get sucked in by the online specials!  Boot Barn and Kohl's have been bombarding me with emails, and I'm more than a little tempted...!  Excessive shopping can be a symptom of a manic episode, and those often end in me spending ~$4000 I don't have, so  I have to sit back, relax, take deep breaths, and try to keep my mouse away from the Add To Cart buttons so I don't put myself in financial trouble.  Ahh, the joys of being bipolar!

Alright, time to eat some Nutrisystem breakfast and hop in the shower.  After all, it's just rude to show up at the gym smelly--you're supposed to at least start out smelling fresh!  ;)

Sunday, November 27, 2011

Christmas Gifts, Revisited

I wish I could read my daughter's mind.  Then, perhaps, I'd know what kinds of toys and gifts to give her for Christmas.  I might get an idea of what would interest her and what will be explored once and then forever forgotten.

This year, she is getting stacking cups, an inkless light marker set (so she can't destroy the carpets... although she's more likely to rip up the paper than actually color on it), and an Aquadoodle coloring mat.  I figured I'd focus on fine motor skills and work on developing her ability to hold and manipulate markers, crayons, etc.  She's also getting a wind-up toy duck, because she has an inexplicable love of ducks, and that was her first real word.  Oh, and the pop-up princess's castle tent, which won't be anything more than a pink place to sit for her, as she has not developed the skills for pretend play and has no idea what a princess is.

It won't be a very glamorous Christmas for her, and I feel guilty about that.  I mean, I come from a family where Christmas is a big deal and you spend more money than you have on ultra-special gifts for your family... But I just don't have a clue what she'd like, understand, or play with.  I spent about 1/10 on her presents what I spent on my husband's gifts...  And I feel a bit like I'm cheating her out of a special Christmas.

Then again, she doesn't know what Christmas is, doesn't understand or appreciate the concept or meaning of gifts, and it's all a crap shoot anyway, because I *can't* read her tiny little mind and get clued in.

I just hope that, when she's older, she'll be able to think of things she wants and express those desires.  I hope she'll be able to understand Christmas and what presents are all about.  I hope this magical, family-filled season won't be meaningless to her...

...But hope can be dangerous.  Some days, it's better to just focus on what she CAN do, what she DOES understand, and just not worry about what may or may not come in the future.  I think today may be one of those days...

Saturday, November 26, 2011

I stumbled onto this old post from my retired blog...

It was written 3 years ago, but it still speaks to me.  Of course, things have changed since I wrote it.  C's medical issues are just part of everyday life, not the constant struggle they used to be...  The death of my niece Rebecca seems like a lifetime ago, and while it still makes me sad, it doesn't eat away at me anymore.  And I've returned to a heavily medicated state to control my moods and help me be the best wife and mother that I can be.  Still, though.... It's good to remember where we started, to look back and see how far we've come....

-------

It's just hard right now.  I have to keep acknowledging that it's hard, which I hate, and reminding myself that it's *okay* that it's hard right now.  I shouldn't be fine with everything--not yet.  It's normal to be hurting.  Healthy, even.

I don't know why I felt such a connection with Rebecca.  I can't explain it; it was just something that was THERE, that was a part of me.  Losing her, particularly before I got a chance to meet her, hurt me in a very real and deep way.  Mom described it as still being "raw," and I guess she's right.  It is.  The slightest touch in that area stings and burns like a bitch, and it leaves a resounding dull ache that can last for hours.

Ceili can't see.  I mean, she sees SOME, but I lose hope that she'll see very much.  Or maybe it's not hope I'm losing; maybe I'm just moving past the denial.  In any event, it SUCKS, and it breaks my heart, and I wish I could do something--ANYTHING--to change it.  Same with everything else.  Her chromosomes:  can't I just go in and delete that extra material?  Undo that little glitch in her development?  I don't have high hopes after her MRI and xrays today; something about the shift in the xray tech's demeanor between when we walked in the room for the scans and when we left ten minutes later tells me he didn't see the kinds of things we had wanted him to see  (or, rather, that he saw the kinds of things we didn't want him to see).

I'm feeling like a failure.  Like a failure as a mother, because my body couldn't produce a healthy little girl, and because I can't have any more children without significant medical intervention to ensure that they're free of this anomaly.  Failure as a wife, because I couldn't give my husband a healthy baby, and I can't give him more babies without said intervention.  Failure as a woman?  I don't know.  I know better, but I just can't shake the sense that this is ALL MY FAULT.  Perhaps Asher would have been better off with someone else who could give him healthy babies the old-fashioned, normal way.  But then Ceili wouldn't have been born, and even if she isn't the typical picture of a "normal" baby, she's still beautiful and incredible, and I'm eternally grateful that she came into this world.  

I'm having a hard time talking to Asher about this stuff.  It seems the moment it comes up, I either start to cry or begin making inappropriate jokes about it, neither of which is particularly conducive to a constructive, healthy discussion of it all.  I'm clearly just not coping with it yet.

I wake up.  I feed Ceili, I change her, I schedule her doctors' appointments, I play with her, I love on her, I put her to sleep at night...  I do everything she needs me to do.  That's what keeps me going, what maintains some illusion of normalcy in my life.  It's easy to appear strong and composed when I cannot do otherwise and still care for her properly.  That doesn't make me FEEL any more strong or composed, though.  

I feel lost.  Frightened.  Devastated.  Ashamed.  Guilty, hopeless, angry...  A million other adjectives, all negative.

Through it all, though, I am reminded constantly of the depth of my love for Asher and Ceili.  They bring such joy into my life, peace and comfort and light.  They make the world a beautiful and glorious place, even though my little corner of it seems so dark and dreary right now.

I still have trouble understanding how I "landed" a man like Asher.  He is brilliant, kind, and a rock.  He holds me up when I feel like I can't bear my own weight.  I only wish I could turn to him more right now.  I seem to be stuck in this middle ground between trying to look to him for comfort and trying to offer him some comfort.  I don't want to lean too much, because he has his own share of the weight to shoulder through all of this.  I don't want to cry too much or seem to weak or frightened because I don't want to complicate his end of things any.  At the same time, I don't want to distance myself so much that he can't lean on me a little....  

I don't know.  I don't know what I'm feeling or what I'm trying to say...  I don't know how to handle all of this.  I also know that it doesn't matter if I know how to; I have no choice BUT to handle it.  So I will.  I will do everything I have to do for Ceili, for Asher, for my marriage and for my family....  And I will continue to treasure the incredible man I married, and I will continue to be amazed by this beautiful child we created.  I will continue to find happiness where I can, and hopefully someday soon, I'll be able to smile without it feeling forced.  I'll be able to talk about Rebecca and about Ceili's medical issues without fighting back tears or feeling my throat close up on me.

I just wish I could do more.  Be more.  For Asher, for Ceili, and for myself.

This was not the way I imagined our life with a baby.  I never thought she wouldn't be healthy or that there wouldn't be more "happy accidents" in our lifetime.  

On the other hand, I never thought I would love these two so much that it could actually overpower the mood swings and keep me stable without medication.  At least I can hold onto that and find true, easy happiness--no forced smiles there.

A Kid-Free Anniversary

The hubby and I got married on New Year's Eve.  This year will mark our fifth anniversary.  We got married in Austin (where my parents live), and we spent our first married night at the Hyatt Regency on Town (now Lady Bird) Lake, where we watched the fireworks over the lake from our beautiful hotel room.

This year, we're going to Austin for Christmas, and my mom suggested that we stay through our anniversary.  She volunteered to watch C for the night so that we could go stay at the same hotel where we spent our first married night, in a room with a river view, where we can relax and enjoy a kid-free anniversary and watch the fireworks over the lake.

This is why my mom is awesome.  Also because the hotel wasn't accepting reservations from non-preferred customers (they had booked all their regular people rooms), but she not only got us a reservation; she spent a week calling to try and get us the very same room where we stayed on our wedding night.  My mom is really and truly fantastic.

I'm looking forward to a night with my husband without the kiddo.  I'm thinking a fancy dinner at a restaurant where we could never take our often-noisy and ever-destructive offspring, and a quiet night with a bottle of champagne in the room to ring in the new year.

New Year's Day just also happens to be my wonderful husband's birthday, so we'll get to sleep in, maybe get room service for a birthday breakfast in bed, and start the day without any stress, knowing our daughter is in good hands while we take a short time-out from parenting.  I am very much looking forward to our kid-free anniversary, because who knows when (if ever) we'll have this sort of opportunity again?

PTSD and Parenting

For 8-1/2 years, I have been battling Post Traumatic Stress Disorder.  The thing is, I didn't know I had PTSD until a few months ago.  It has colored everything in my life for nearly a decade, causing me to make some questionable decisions, making me keep the people I love at arm's length, and creating a very high anxiety situation in my life.  I can't sleep without sleeping pills, I have to take two anxiety pills a day, and I suffer from violent night terrors that result in me beating my husband in my sleep (though, in fairness, he probably deserves it. ;) )

C is nearly 4 years.... Which means I had PTSD for years before conceiving her and for the entire time I've been her mom.  On a scale of 1-10, my standard stress level is an 8 or 9.  I am constantly clenching my jaw, my knees, my toes... SOMETHING.  I am incapable of relaxing.  So how did learning my daughter had multiple disabilities and health conditions contribute to this?  Well, it certainly didn't HELP my anxiety, that's for sure!

How do you face the world head-on, advocate for your child, and remain positive and supportive of them when you constantly feel like the world is a terrifying place full of life-threatening dangers?  How do you focus on creating learning opportunities for your child through play when you can't stop thinking that you have no way to protect yourself if and when someone breaks through the front door?

About a month ago, I started seeing a new therapist who specializes in EMDR (look it up; it's interesting and effective for PTSD).  We laid the groundwork for the therapy, creating a prioritized list of memories that are intrusive and cause great emotional disturbances, as well as a mental "safe place" (my childhood bedroom) to which I can retreat if therapy gets too difficult and I need to feel protected.  Then my insurance company sent me a letter saying they were only approving 3 visits (2 of which I had already used) to the new therapist.

I went into a panic.  I cried, I shook, and I curled up in bed for hours, unable to function.  I had finally found someone with a technique that could actually help me and change my life for the better, and now the insurance company is threatening to take that away from me??!?  It was a nightmare, and it sent me into an emotional crisis.  I went into my daughter's bedroom to sit with her for a minute, and I emerged 45 minutes later without having uttered a sound or made a single move.  I can only imagine what her little brain made of that!

Sometimes, it seems nearly impossible to take care of another human life when you feel so out of control over your own life.  When the world is just too big and too scary and too dangerous to function, how do you prepare a child--especially a child with special needs--to enter that world?  Wouldn't it be better just to lock her in her room for her entire life and spare her the pain and anguish that lurks in the world beyond the front door?

Most days, I do just fine.  I wake up, I get her ready for preschool, and I put her on the bus without any major anxiety.  I don't fret while she's at school, and I'm excited when the bus drops her off and I have my baby girl back in my arms.  I remember that play is educational and therapeutic, and I play with her.  I try to teach her new words, new ways to play, and new skills.  I am a good mother.

Then there are those days when the walls come tumbling down around me, and all I can do is sit among the rubble and mourn the evils in the world, the way in which I suffer daily, and a general sense of hopelessness that interferes with my ability to see past my daughter's challenges and makes trying to raise my expectations and overcome the obstacles nearly impossible.  I am a good mother, but I am not a perfect mother.  I am broken, and sometimes I just don't work correctly or as intended.

Parenting with PTSD and mental illness is a constant struggle.  Sure, there are pills and therapists and online support groups to help you through it... But I never feel like I'm good enough for C.  I'm not whole, so how can I be the exceptional mother her disabilities require?  At least I'm healthy enough to know I need help and to seek it out.  I don't give up on my mental health any more than I would give up on C.  On the hard days, I fight and I keep my head above water so I can be and do all the things I need to be and do.  Then there are the easy days, when I can simply enjoy the miracles in my life and the wonder that is my little girl.

I'm looking forward to getting the insurance company on my side so I can get better and have more of those easy days.

Friday, November 25, 2011

Language Barriers

My child will be 4 in less than two months.  She knows how to say "duck" and "baba" (bottle), and I've heard her say "block," "hi," "mama," and "buh-bye" before, although only a couple of times.  In terms of her receptive language she understands (but ignores) the word "no," and she understands and responds to the phrases "Let go, please," "Night-night," and "Drink your milk."

Sadly, she does not understand "Don't take off your diaper and play with your poop" or "Please stop screaming until we leave the restaurant."

Sometimes, I love that she doesn't talk.  She knows how to communicate her needs and desires through gestures (although she never did pick up on the ASL I crammed down her throat for 3 years) and sounds, and it's usually very gentle and calm.  It's quiet and peaceful in most cases, and what mom doesn't appreciate  a few moments of quiet and peaceful, especially when raising a child with disabilities?

Other times, though, it breaks my heart that she doesn't call me Mommy or tell me that she's hungry.  I can't stand it when she's crying and doesn't want a bottle or to go to sleep, so I can't figure out what it is that she wants.  It's REALLY hard knowing that I can sit and read her a book or talk to her for half an hour, and all she's getting from the interaction is the soothing sound of my voice, not the meaning of any of the words.  It's impossible not to wonder what the long-term implications of her current language struggles will be, but there's no way of predicting whether she'll ever use language, so wondering and worrying bring about no good whatsoever.

I love my child, and I want the best for her.  That includes wanting her to be able to navigate a language-driven world on her own, without me having to stand by to guess at what she's needing or wanting.  It's a struggle I face on a daily basis, and, while I want her to develop language skills, if she doesn't, I won't ever complain.  She truly is perfect exactly as she is, and I treasure every challenge that comes our way because they make us stronger and bring us closer together.  She's my little sidekick, and I love having her by my side.

Black Friday

This year, I didn't stay up all night to hit the midnight store openings.  I didn't wake up early to hit the 5am store openings.  In fact, I'm not shopping at all today.  I've already spent more than I can afford on the husband's Christmas, anniversary, and birthday presents (all of which come within the same week), plus my car registration renewal was just due, so I'm low on funds, and, frankly, the only Black Friday deals were things I wanted to buy for myself.  I just don't have the cash to be buying myself gifts this time of year.  Besides, we don't need a new tv, a new laptop, or a gun, and those seem to be the only things on sale aside from clothing and toys my daughter can't use.  =/

Instead of my traditional insane Black Friday shopping, I came home last night and took a sleeping pill for the first time in a few days.  I slept from about 10pm until 2pm.  I still feel like crap, but at least I feel like rested crap!  Seems like my body is fighting off some sort of illness.... GO BODY!  I really would prefer not to get sick.  Just sayin'.

Thanksgiving was pretty fantastic.  We had great sushi at a place we'd never been before with two of our friends up in Reno, and then we went to their house and watched Limitless.  Ceili was mildly screamy and excitable at dinner, but she was quiet and entertained herself throughout the movie, which was great.  I was very proud of my little girl's behavior.  She's really a very good kid, and I consider myself a very lucky mommy.

On a completely unrelated note, my hair has been straight as an arrow my entire life.  Now that I've completely torched it with bleach, though, it actually curls!  I was able to curl my hair before I left the house yesterday, and it's still mostly curly now, 24 hours later, after sleeping on it.  This was impossible before I went blonde, and I'm kind of excited abut it.  Of course, when I hop in the shower after finishing this post, the curls will disappear... But it's nice to know I can get them back and keep them as long as I like.  That's a first for me.

I hope you all had a wonderful Thanksgiving and that you're enjoying your Black Friday!

Nap Time!

Thursday, November 24, 2011

Custom Wheelchairs

Although my daughter can walk short distances with her butterfly-covered pink AFOs, long distances just aren't in the cards for her right now.  She tires easily, and she's just getting too big to carry around like a baby.  Besides, she's not a baby--she'll be 4 in less than two months, so it's really time for me to stop acting like she's an infant.

Last year, we got her a pediatric wheelchair for Christmas. The thing is huge compared to her runt-sized frame, but it has a seat belt, it rolls, and it does the job.  We use it for long days (like our 3-hour visit to Shriners Children's Hospital on Tuesday), sporting events, trips to the mall or other events that require a lot of walking, and for travel.  (There is NO WAY I'm carrying this child through an airport while lugging around a diaper bag and carry-on.  It's just not happening.)  The wheelchair has been great.  It has saved us a world of trouble and made our last few trips to San Francisco and Oklahoma a breeze.  Unfortunately, the doctors told me on Tuesday that it simply will not do for Ceili.  She needs a smaller, more lightweight wheelchair with a custom seat.

...A custom seat.  For a wheelchair.  I didn't even know such things existed!  She needs something small enough to cradle her tiny body that will support her where her lack of a spine (okay, sacral agenesis and caudal regression) cannot.  Easy! ...Or so I thought.

With the current wheelchair, we just shopped around online and picked from the three or so options for pediatric wheelchairs.  Now there's a prescription involved, and insurance, and a medical device company that has to work with her physical therapist...  It's insane!

The first place I found that carries wheelchairs in our area very politely told me that they do not contract with our insurance, and they referred me to the only company that does.  Company B told me that they don't do custom anything, and I have to call back Company A and have them get special authorization from my insurance company if I want anything other than a wheelchair exactly like the one my daughter already uses.  So I call the first company back, and they're very helpful (this was a long and tedious process, but everyone was really nice along the way, which was a pleasant change from the norm in our medical misadventures).  After an hour of failed fax attempts, the prescription finally made it into their office, and I was told that someone from their company would be in contact with the physical therapist at Ceili's preschool to set up a time to discuss Ceili's wheelchair needs and to fit her for a seat.

At this point, I'm allegedly out of the process.  All I do is sit back and wait while the company talks to my insurance company, meets with the PT, designs and builds my daughter's wheelchair, and then sends me the chair and the bill.  Typing it out in one nice little paragraph really undervalues the struggle I went through to get to this point in the game.  I was on the phone or hovering over a fax machine for nearly four solid hours yesterday, desperate to get the ball rolling before the holiday hit and everyone went home for the long weekend.  It was crazy stressful and made my head spin.... But so do most things involving Ceili and doctors, to be fair.

So what have we learned so far about Ceili without me having to write up her medical history for you?  She's visually impaired (legally blind due to bilateral colobomas of the iris, retina, and optic nerves); she has caudal regression, sacral agenesis, and scoliosis; she's small for her age; she uses assistive devices for mobility (AFOs and a wheelchair); she has cognitive delays.  That's just the tip of the iceberg, really...  But this blog isn't about listing all the things that make my child atypical, so I won't throw any more at you.  We'll just continue to let things creep up naturally in my posts.

Speaking of Christmas Shopping...

It's Plug Time!

Two super crafty and multi-talented friends of mine have online shops full of beautiful handmade jewelry.

http://www.zibbet.com/Polkadotbandit for all your silver needs, and Maoiliosa for Japanese-inspired chiyogami jewelry and goods.  Get your holiday shopping out of the way with handmade items from hard-working crafters and support small business!

Both of these girls are sweethearts, and I want things from both of their shops.  Feel free to shop for me at either.  I wear a size 6 ring, and I like necklaces a lot.  ;)

Christmas Shopping

Christmas shopping for a four-year-old should be easy.  You pick up the latest Dora toy, or the latest Yo Gabba Gabba whatever, or a Leapster LeapPad and some games.  Done.  Game over.

Shopping for a four-year-old with the cognitive abilities of an 18-month-old is a little tougher.  She doesn't watch Dora or Yo Gabba Gabba (I'm really not even sure what that is) or anything else for that matter.  Whether it's because she's legally blind and gets limited satisfaction from visual cues on the television or because her attention span is too short for things she doesn't understand, I don't know or care.  The fact is, she only recently discovered the tv, and all she wants to do is touch it and bang against it.  She might watch for a minute or two if there's something colorful and pretty going on, but that's about it.  So we can knock all the show-related toys off our Christmas list.

This year, I wanted to get her a LeapPad.  She loves playing with my iPhone because of the touch screen, so why not give her something of her own with a touch screen and educational games?  The problem, of course, is that she won't understand the games.  It will be just like anything else where she touches it and something either happens or it doesn't, and she'll enjoy tapping her finger against it for as long as things happen or for five minutes, whichever comes first.  So perhaps my best-yet idea isn't such a great one.

It's difficult to buy developmentally appropriate toys for a child with disabilities.  You want to buy them toys that challenge them so they grow and develop, but the toys have to be within their cognitive grasp.  You can't just sit them down with a computer and toddler computer games and expect them to learn how to spell when they still have very little receptive language and no spoken language.  It's a real challenge...  So I have no idea what Ceili is getting for Christmas this year.  I've got a 3' tent shaped like a castle for her to play in (although the castle significance will be lost on her), some stacking cups because we're working on putting things in and stacking, and butterfly magnets because she likes to play with the magnets on the fridge.  That's the best I've come up with so far.  Maybe I'll go by the teachers' store in Reno tomorrow and see what sorts of educational/developmental toys they have there...  Because when you have a child with delays, you don't buy toys that are just toys.  Everything is a learning opportunity, and you don't waste time on things that won't help them grow.

I also need to find Ceili about 20 new board books, because she's tired of her current books and has started tearing them up.  (This is why we buy board books and not paper books--tougher to tear.)  Surely the teachers' supply store can help me out with that one, too...

More Kitten Videos!

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The kitten likes to play with baby toys.  You already saw him attacking a stuffed bunny (yes, that's what that white fluffy thing was), and he frequently steals my daughter's stuffed animals to wrestle to the death.  Here, he has found a much more worthy opponent.
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In other news:  my goodness, I need to clean off my coffee table.  I'll pick up the Black Friday ads from the floor once my Black Friday shopping is finished, thankyouverymuch.  ;)

I Am Little More Than A Cat Bed

  My apologies for showing you what I look like first thing in the morning.  This little guy woke me up at 7am... Because he wanted a place to nap.  If you can't tell from the pic, he is nursing on his tail--that's how he lulls himself to sleep.  He's also the loudest purring cat I have ever known.  We strongly suspect he's a Bombay.  His name is Seamus, but we call him Kitten more than anything else.

Wednesday, November 23, 2011

I promise never to post a single picture related to potty training.  You have my solemn vow.

While We're Getting Situated...

I feel like I should post a brief comment about what I foresee this blog being.  I'm going to chronicle the life of a parent of a child with special needs because, well, that's what I am.  This will not, however, be a blog about how to be a parent or why you're a bad parent or what a great parent I am.  This blog will also not be an online shrine to my darling daughter.  I'll also try to keep the "icky" talk to a minimum, because, c'mon, no one wants to read about dirty diapers or vomit.  Let's get real here.

I intend to post about life as I see it, through the darkly-colored glasses of Bipolar II Disorder and Post Traumatic Stress Disorder, but also through the rose-colored glasses  of a tireless optimist who finds the beauty in life's darkest moments.  Which isn't to imply that my life is dark.  Actually, my life is pretty amazing, but I won't rub that in your face.  I'll let you decide for yourself, fair enough?

Sometimes, I will post videos or pictures of my animals being cute, because who doesn't like cute animals?  Sometimes, I will grieve the heavy burden that's been placed upon my shoulders.  Other times, I will rejoice in life's many blessings.  (Am I allowed to say blessings, or does that make me sound religious?)

When I want a new tattoo (which is virtually ALL of the time), I will post about that.  When I bleach out my hair in an insane decision to go blonde or dye my bangs turquoise because I feel like a rock star, I will post about that.  When school's got me a little bit insane, I'll be just another grad student blogging about schoolday woes.

This will inevitably have some of the markings of a mommy blog, because I'm a mom... blogging.  However, there is so much more to my life than being a mom, and I intend to let all of it find its home in this safe little nook of the internet.

I encourage comments.  Comments are good.  Tell me if I'm posting about inane, drab stuff that no one wants to read.  Tell me my hair looks awful in that last picture or that I need to pick a different color eyeshadow.  Ask me questions.  Tell me your stories.  I would love to see this as more of a community and less of a diary... So speak up!  Let me know you're out there, and let's talk about what's on YOUR mind!

For now, it's 10pm, and I'm lame, so I'm gonna go take a pill and hit the hay.  Happy Thanksgiving, everyone!  I'm celebrating with sushi, because I'm not the greatest cook in the world.  How are you spending your day off?

Kitten Attacks Mythbusters Explosion

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I apologize for the shakiness. I was laughing like crazy.  Future videos will be of a higher quality, too. #crossmyheart

Because We're About Life's Fun Moments, Too!

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Shot on my handy Flip camera.  Because everyone should have a camcorder that fits in their pocket! :)

View from the drive to Shriners

To Begin in the Middle

I'll save you all the horror of beginning at the beginning. Let's just all agree that there was a beginning, and it was long and difficult, but it got us where we are today, so it was worthwhile. Someday, you'll get that information... Perhaps in bits and pieces, perhaps in recap posts... Whatever seems necessary in order to continue our tale. So! Instead of beginning at the beginning, I'm going to begin... yesterday.

It was Ceili's second trip to Shriners Children's Hospital in Sacramento, CA, but our first trip for the Spina Bifida Clinic. She was seen oh, about two months ago?, in the Scoliosis clinic, where they noted a curvature to her spine, but assured me it was not severe enough to qualify as a scoliosis diagnosis. Now, she was being seen, for the first time in her nearly 4 years of life, for her diagnosis of "Closed" Spina Bifida. Unfamiliar with spina bifida? Look it up; it's interesting stuff. I'm not here to pretend to be a doctor or to bore you with information you may already know, so I'm just going to tell you that Ceili has closed spina bifida, and no one has ever deemed it worthy of medical attention until now, so we really never thought much of it.

I drove three and a half hours to get to Shriners, unsure of what was to come. I mean, like I said, no one ever felt her spina bifida was worth paying attention to before, so I had no idea what to expect from this. Would we get any new information about her current health condition? About what could be? ...Or would it be like every visit to every geneticist, where they probe me for information about her incredibly rare condition so they can gather data, but they have no useful knowledge to impart because it's too rare and no one knows anything about it? I went in with spirits high, hoping for new information. I always appreciate when doctors can tell me something I don't know.

I wasn't prepared for what I got. Of course I wasn't. I know by now that no doctor's visit is ever going to bring GOOD news--the best we can ever hope for is no change or no new information. So why is it that I repeatedly let my guard down when we have a doctor's appointment? Why don't I go in expecting the worst so I can be pleasantly surprised and relieved when the news is no news? At the scoliosis clinic just a mere matter of weeks ago, I was told she did not have scoliosis. The first thing that happened at the spina bifida clinic was an x-ray to confirm that she does, in fact, have scoliosis. Scoliosis which was present and apparent in the films taken a few months ago. The very films that allegedly cleared her of this diagnosis.

....HUH??!? WTF?

Now, I'm no doctor, BUT.... Yeah, that sure looks like a huge curve in her spine to me. Mind you, this was the x-ray to confirm the curve seen in the previous films. So they looked at this spine at a SCOLIOSIS CLINIC and couldn't identify it as scoliosis. No harsh words against Shriners (I *LOVE* them and everything they do, I promise), but someone made a boo-boo that day, and while it may have seemed like a minor mistake because all it did was give me peace of mind for a couple of months, that peace of mind followed by the actual diagnosis was earth-shattering for me. Given my current mental health, it sent me into a state of near-crisis. I began pacing the room, I broke out in a sweat, my voice got louder and higher in pitch against my best efforts to control it, and I nearly had to ask for a glass of water just to be able to calm down long enough to process the news.

The rest of the day was fine. Her scoliosis could be an indication that her spinal cord has retethered, a possibility that has existed and that we've been preparing for since her first surgery at the tender age of 6 months. The quote the doc gave me was that 30-40% of tethered cords that are released re-tether with time. If it comes to it, her pediatric neurosurgeon was a godsend, and I'd be perfectly willing to trust him with my daughter's life a second time. Now, thanks to Shriners and their wonderful team, Ceili will be getting regular urology exams and labwork to ensure that her neurological condition isn't having adverse effects on her bladder or kidneys. We got a prescription for a new, custom-fitted wheelchair for her to use for long distances, long days, and for travel. That should be fun and nifty; we like new things when insurance pays for them!

Meanwhile, in the rest of my world, I have an online exam and a paper that both need to be completed by Monday, then one last final on Dec 7 to end my first full semester of grad school. I continue to exist in a state of heightened anxiety, on the verge of crisis, with my darling husband coming to my emotional rescue every night without fail. I'm fighting the insurance company to get approval for my EMDR treatments for the PTSD, and I'm hoping that fight doesn't prolong my suffering. I desperately want to get better.

Fun fact of the night: For a year, I sang in a rock cover band in casinos and bars throughout northern Nevada, California, and Arizona. I quit to go back to school for Early Childhood Special Education. I'm a woman of varied interests. :)


....P.S. I'm still trying to figure out why it looks in the x-ray like my daughter swallowed a quarter. I'm 90% certain she didn't, but what else could that big circle be?!?