Saturday, December 31, 2011

A New Dawn, A New Year

I had a PTSD episode last night at dinner. It was the first time I've been able to recognize and identify an episode for what it is and work through it. Progress! I was even able to pinpoint the moment it triggered. I'll post more on that when I get home in a few days. 

Hubby got me a beautiful anniversary gift. More on that (and a picture!) when I get home, as well. :)

It's New Year's Eve, my anniversary, and the day before hubby's birthday.  In 2012, I resolve to get my priorities straight, which it took me most of this year to even recognize. I will be a wife and mother first, a student second, and everything else after that. Most importantly, I'm going to focus on my schoolwork without letting anything interfere with being the best wife and mother I can be. Family comes first, now until forever. They are far too valuable to take for granted ever again. 

Happy New Year to all of you fabulous folks out there! What are your resolutions? Favorite or defining moments of 2011? How will you celebrate the passing of one year and the dawn of another? I want to know! :)

Friday, December 30, 2011

Greetings from Texas!

I hope you all had a wonderful holiday season! We had a great time visiting both sides of my extended family and taking a couple of small family trips into the Texas Hill Country for shopping and a Museum of the Pacific War. 

Last night, hubby and I checked out a restaurant called Barleyswine. It was, by FAR, the best food I've ever eaten. I'll have to go back on future visits!

We've got reservations for our anniversary Saturday and a family dinner with my parents, brother, and future sis-in-law for New Year's. It's been a great visit so far with some exciting things left to happen, but I'll be glad to wake up in my own bed on Wednesday. 

Happy New Year to all of you!

Monday, December 19, 2011

Christmas Travels

Bright and early tomorrow morning, we'll be flying to Austin, TX for Christmas with my family. We always spend Dec. 23rd in East Texas (near Beaumont), visiting my dad's side of the family and doing presents with them. The 24th is spent in Houston, where there's a huge family gathering at my maternal grandparents' house (we're talking 40-60 people in one sprawling house in the country), where the kids do a gift exchange, everyone eats, the wine flows freely, and we sing Christmas carols in the living room. Then we drive back to Austin to spend Christmas morning at my parents' house.

Christmas is my favorite time of year, and Christmas Eve is my favorite day of the year. The family togetherness, the connection to my gajillions of cousins, the food, the singing, the warmth... It's just incredible. Sometimes, I get overwhelmed, and I have to take a few minutes to go sit in the walk-in closet in the guest suite until my nerves defray a bit, but when I come back out, no one says anything about it, and I just slip right back into the festivities. It's grand.

Last year, I missed Christmas Eve because I was on a gig with the band. This year, I'm thrilled that the hubby, C, and I will all be a part of the celebration. One year, it actually snowed in Houston on Christmas Eve, so we all went outside and sang Frosty the Snowman in the snow. It was absolutely magical.

Of course, our trip will encompass more than just Christmas with all the pieces of my family. We're staying through New Year's Eve, our anniversary, and New Year's Day, hubby's birthday. I know hubby is anxious about spending two weeks with my family (in-laws stress everyone out, even if they're great in-laws like my parents), but he's keeping the grumbling to a minimum because he knows how important this is to me. Next year, he'll be working through the Christmas season and won't be able to take off long enough to travel, so we'll be apart for Christmas. It works out that way every other year, which is why me working out of town last Christmas wasn't a big deal (except that it meant missing Christmas Eve in Houston!).

This year has been hard on our marriage. We hit some speed bumps along the way, but we pulled through it together. We renewed our vows in October, so, in a way, this is almost like our first Christmas together. Certainly it's our first Christmas since we've been this close and strong in our relationship. I can't wait!

We're celebrating a mini-Christmas tonight at home with the gifts that didn't get shipped to my parents' house. I don't think hubby sent any of my gifts to Texas, whereas I sent all but two of his down there so he'd have them to open on Christmas Day, on our anniversary, and on his birthday. We're not going to do a fancy Christmas dinner tonight or anything more than exchange gifts, really, because we're trying to cut back on spending, and it'd be foolish to cook a huge meal and have to throw away the leftovers because they'd spoil before we get back. Besides, we have to do things like pack for the trip and assemble our new guest bed tonight. ;)

I don't know how active I'll be here while we're visiting my parents. I may post a brief message or two from my cell phone if there's anything interesting to share. Hopefully I'll think to snap a picture of the New Year's Eve "hubby's birthday" fireworks over Lady Bird Lake and post that, just to be festive, but I know you'll all forgive me if I don't spend my anniversary/my husband's birthday blogging. ;)

I hope all of you have a wonderful holiday season, however you choose to spend it, and I wish you all joy and warmth in your hearts.

<3, WK

Sunday, December 18, 2011

Wonderful Weekend!

This truly was a lovely weekend. No emergencies, no stress, no fussing about over anything!

Hubby and I like to play World of Warcraft (we're a nerdy family over here), so we spent a few hours leveling up some low-level toons together, which is always fun. I don't enjoy the game much if I'm playing alone or just with guildies, but when I can play alongside my husband, we get to make jokes, mess with each other, and battle over who gets what gear. It's all in good fun, and I enjoy playing my alt more than my main character, so I'm glad we did some leveling this weekend.

Hubby found all of the most recent season of Dexter online, so we enjoyed a little mini-marathon of Dexter last night from the comfort of our sleeper sofa, which we pulled out and covered in thick, fluffy comforters for the event. Some might argue that watching people get slashed and stabbed isn't romantic, but we both LOVE the show, and cuddling up under the blankets while watching it was wonderful.

I also paid a visit to my salon yesterday. My roots needed touching up, and I got my eyebrows tinted and waxed while I was there. It was nice to have a few hours of pampering, and I left feeling much prettier than when I went in, so it was money well spent! ;)

Today, we spent most of the day with some friends of ours in Reno. We went to lunch at a fabulous little sushi joint, where we had All-You-Can-Eat-And-Then-Some sushi! I noticed midway through lunch that one of my two nose studs had fallen out at some point, and I was afraid that the piercing was going to close before I could get home and find another piece of jewelry to hold its spot until I could purchase a replacement stud (I've been wearing matching turquoise nose bones side-by-side, and I don't have any extras, so I'll have to order a new one for the second piercing). So what does Heather do? When we get back to her house after eating, she pops into her studio and, in less than five minutes, has a handmade sterling silver nose screw for me! (To see her handmade sterling silver jewelry, which I highly recommend as a gift or for yourself!, visit http://www.zibbet.com/Polkadotbandit) Fortunately, it slipped right in, so my piercing is secure until I get a replacement nose bone. Hooray!

We bought Heather's old bed frame today for our guest room. They were looking to sell it to make room for a different style of bed that's more pet-friendly, and we were looking for a queen for our guest room, so it worked out perfectly. The only catch is that we got the bed home, and it won't fit where I had initially intended it to go (unless we never want to turn on the ceiling fan), so I'm going to have to do some furniture rearranging tomorrow while Hubby's at work so we can assemble the bed in a different spot tomorrow evening. Now I just have to talk him into buying a really nice mattress for it, and it could be better than the bed in the master bedroom! We used to have a rickety old daybed with a twin mattress in there and an air mattress for the floor if a couple came to visit. It'll be great having a more comfortable sleeping option for our guests in the future. :)

C has been a little angel all weekend. Even at lunch today, the waitress brought her a bowl of sushi vinegar-pickled cucumber pieces, and C kept herself occupied by munching on the pickles without any outbursts or spills. It was fantastic! She's been toddling around without her AFOs since Tuesday because they weren't seated right Monday and irritated the scar on her foot, and, I have to say, I'm very impressed with how much more coordinated my little girl has become. She still is less stable and falls a bit more without her AFOs than she does when she's wearing them, and she'll be wearing them again tomorrow, but it was reassuring to see how well she could do without them, now that she's mastered the skill of walking a little more. They tell me she's stacking things and climbing them at school now, too, which isn't exactly what you want your child to be doing but is GREAT news from a developmental standpoint!

Have I mentioned yet that we ordered her new custom wheelchair on Wednesday? Randy, a representative from MedTech (a company in Reno), drove down to C's preschool to meet with us. There was a chair there that he was able to use to demonstrate some possible features we could get and to show me how the chair would fold, how to take off the wheels, etc. He said he'd be doing a follow-up call to ask me about color preferences, but I told him right off the bat that if yellow was an option, we wanted yellow! Yellow is C's favorite color, and I want a chair that represents her personality. While getting a pink or purple chair would be adorable, it would be forcing a stereotype on C instead of representing her as the person she is, so yellow is really the only option! The estimated turnaround on her new chair is about two months, so it will be a little while before we see her new yellow wheels, but I'm excited and can hardly wait!

Wednesday, December 14, 2011

To Carry, Or Not to Carry

Living with PTSD, you develop a certain... shall we say paranoia? Walking down the street, through the crowded aisles of the grocery store, in your own living room when someone knocks on your door, you are surrounded by perceived threats. As I have become more aware of my PTSD, those feelings of being threatened have become more intense.

Recently, a friend invited the hubby and me to go out to a shooting range and fire off a wide array of guns, from the very humble handgun to the very high-tech sniper rifle. It reminded me of shooting rifles at camp as a kid, but there was a greater sense of power and control, looking down that scope, knowing I could hit the tiny metal animals that were so far away, I couldn't see them with my naked eye. That got me started daydreaming about carrying a gun for protection.

Now, before anyone goes crazy on me... I don't own a gun. I will not own a gun. I will not allow a gun in my home or near my daughter. I am not anti-gun, but I wouldn't feel safe with one in the house. Accidents can always happen, you know. That aside, I'm not exactly mentally STABLE, so arming myself with a deadly weapon just doesn't seem like the best idea. So what was I going to do to get back that sense of power and control in my life? What's a girl to do to feel safe in the world if she's afraid of the risks of carrying a gun?

My therapist supplied the answer yesterday. He told me that he felt protective of me, almost fatherly... And that I should pick up some pepper spray right away.

Pepper spray! Now, why hadn't I thought of that?? I shared the suggestion with hubby.... who supported it 100%.

After confirming that pepper spray is legal to carry in all 50 states, and, more specifically, legal in containers of 2oz or less in my home state, I started browsing the internet and found a cute little keychain canister--pink--for under $10. Perfectly legal, will provide a sense of self-protection, and is cute, to boot. Who would've thought--aerosol weapons as a fashion accessory?

I'm going to wait until after Christmas to order it. Goodness knows I've spent far too much money online in the past six weeks, preparing for Christmas! I may not ultimately go with the pink one (although the real appeal wasn't that it's pink so much as that it claims to support Breast Cancer Research), because I really don't care what it looks like. I don't intend to ever use it. I just need something for those *just in case* moments, something to make me feel like I can protect myself, like I'm not entirely helpless or at the mercy of another.

I actually struggled with this decision. It's not something I took lightly, and obviously I'm not jumping into it. I looked up the laws first, I took hubby's input and my therapist's input and weighed the pros and cons of carrying any sort of weapon, and I decided that this is something that I need in order to regain control of my life--a control I haven't felt for over 8 years now. This is a good thing. It scares me a little, but it's a good thing.

So I'll be ringing in the New Year by arming myself with pepper spray. I feel good about this.

A Time to Mourn

Yesterday afternoon, a friend's father passed away. He had been in the hospital, but all reports had been good, so I was shocked to hear of his death. This afternoon, my husband learned that a very old friend of his passed away Monday night. Still young, she died in her mother's arms. I urged him to take comfort that she died somewhere safe and happy. I mean, I can't think of a better place to go than in the arms of someone who loves me.

Last year, a very dear friend of mine passed away just a few days before Christmas. He was a high school friend's father, my youth minister, and he was in my wedding ceremony. When he passed, it absolutely crushed me, and I remember being furious at God for taking away such a wonderful man just before Christmas and leaving his (grown) daughters with no one.

Losing a loved one is certainly never easy; no one has ever claimed it was, to my knowledge... But somehow, that loss seems profoundly deeper during the holidays. At a time when we are urged to celebrate family and togetherness, to express our love for one another, and to flock to our homes, it's devastating for a key figure in that image of Christmas Past to be missing.

My heart goes out to the two families whom I know have lost members this week, and to anyone who may be reading who is grieving the loss of a loved one. We all experience loss in our lives, and there's just no way to make it easier or to make it painless. This time of year, it's really thrown in your face if you've just lost a family member... There just are no words to make it right.

I wish we could have a guarantee that, during the month of December, no one would die. No one would suffer, accidents wouldn't happen, the ill would feel a temporary respite, and everyone could celebrate and love one another without fear of tragedy. I, for one, will be holding my husband and daughter extra close this season, telling my parents and brothers that I love them, and treasuring my Christmas celebrations with both sides of my extended family. I'll embrace being back home for the holidays. I'll be grateful that all my loved ones are near, if only for one night, and I'll put aside complaining about how life isn't quite what I had planned. Life is too short to be unhappy, and you never know when tragedy will strike. I'm going to make sure that Christmas is full of joy and love.

Monday, December 12, 2011

Thus Ends the Penny Drama/Growing Up

Well, after several x-rays, a less-than-successful operation, and several enemas, the penny that has haunted me for the past couple of weeks is now out of my life forever! C's x-ray this morning was completely clear of foreign bodies, meaning the penny snuck out in yesterday's diaper (despite my valiant search efforts), and I can finally breathe easily again... Until the next time my darling daughter decides to put something in her mouth!

I took the weekend off... from life. Sure, I did my motherly duties, fed and played with C, but I spent the vast majority of the weekend in my pajamas on the couch watching Criminal Minds and Law & Order: SVU marathons. I love the crime dramas because the bad guys always get caught in the end, and that gives me a warm sense of satisfaction and peace. If only real life worked out that smoothly!

Hubby and I are super excited because C's preschool is hosting a Parents' Night Out tomorrow night. Free babysitting at the school for two hours, long enough for hubby and I to go out to a nice dinner together without worrying about whether C will be quiet and cooperative. Also, I'll get to eat my food without stopping after every bite to give her a bite or to quiet her with a toy. It'll almost be like being a young, childless couple again!

We weren't prepared for parenthood when C came around. She was a happy fluke, and we were incredibly excited when we learned she was on the way, but it wasn't what we had planned. Just a couple of months prior, we had gotten pregnant and miscarried, and we decided at that time that it was for the best, that we needed a couple more years of just being the two of us before we brought in a third party. Well, I blinked twice and was pregnant again. I had planned to have a Master's degree before having a child (as opposed to now, where I'm earning my Master's while parenting full-time), to have a steady job and income, and to have traveled and seen a little bit of the world before settling down. I was a party girl, still into the club scene and bar-hopping with my girlfriends. I was still a kid. Then I was pregnant.

I thought I would be able to hold onto my youth after she was born, but then the diagnoses started rolling in, and I spent the first year and half of her life in hospitals and doctors' offices, getting bad news and then worse, facing crisis after crisis, surgery after surgery... And that ages you pretty quickly. By the time C was medically stable and I had enough time to do anything other than see another doctor, I had grown up. Too quickly, of course (isn't that always the case?).

I don't regret one moment of it. The beginning was tough, but I always got through by holding my baby in my arms and looking into her beautiful face. I miss being young, feeling young... I mean, it's not like I'm old and wrinkled now (although I do have some worry lines on my forehead, brought about by tough years of medical uncertainty), but I don't feel as vibrant and energetic as I did when I got married. I used to go out every night, and now I'm happy to curl up in pajamas under my electric blanket and watch tv in the evenings. I regained a little bit of that youthful energy while I was singing with the band, but at the cost of time with my family and an education that I earnestly wanted... Not the best trade-off.

I don't know if I've completely resigned myself to growing up yet. I still cling to certain things that make me feel young and carefree, such as dying my hair drastic colors or getting pierced or tattooed... I still want to go skydiving again, and I'm determined to go skiing one of these seasons, when I can find someone to watch C. Someday, I'll get to visit London and Germany and Ireland. Someday, I'll star in another musical or sing on a stage in front of a packed house again. I still have plenty of time to be young, to have fun, to be a little bit crazy, even. I just have to find myself a babysitter first. ;)

Saturday, December 10, 2011

Penny's Travels

There it is! If it doesn't pass by Monday morning, we'll have yet another x-ray to see if it's stuck in her malrotated intestines. Joy!

Thursday, December 8, 2011

When the Dust Settles

Hours after the fact, knowing full well she wouldn't understand a word of it, I walked into C's room and I apologized. I apologized for yelling at her, I told her that she was perfect, that I had been in pain and took it out on her, that it wasn't fair, and that I was sorry. I told her that I loved her more than anything in the world.

Again, she didn't understand a word that I said. That doesn't matter. What matters is what she DID understand: she understood that I'm her mommy, that I love her, that I came into her room and held her and read her a book and turned on the light so it wouldn't get too dark in there. She knows that I love her, and she feels that love every day. She understands that.

I feel better now.

Outburst

I started the morning with a painful drilling of my tooth. I blacked out at the gym. My tooth still hurt. My arms were sore from the workout, and she was arching and twisting in ways that caused severe pain. I was stressed. I was in a hurry to get out of there. People were looking. She wouldn't stop. It was the same thing over and over and over again...

It was a hundred tiny things that bubbled up at the same time into one outburst. One moment of sheer frustration, one yelled "No!" at my child. My child who didn't stop when she heard me yell, who didn't even react, for that matter. My child who didn't understand that Mommy was in pain or that she shouldn't be grabbing bags of chips off the rack or that she was making the simple task of buying sandwiches more difficult. My child, who didn't understand that she was doing a single thing wrong, who was only aware that there was something exciting in front of her, and she could reach out and grasp it, and so she was doing so with great delight.

I yelled at my child today. Because I was frustrated. Because I was in pain. Because, sometimes, that's what we do as parents. We snap and we scold our children a little too loudly, even though they don't understand a single thing that's happening in that moment and couldn't possibly grasp the meaning of your shout.

I am not at all proud today. I know better, but I feel like a lousy parent. I mean, I'm studying Early Childhood Special Education. I have made a choice to devote my LIFE to children who will be difficult to handle at times and who won't always understand me. I should be more patient, right? More understanding? More selfless?

I'm the mother of a child with special needs. I should be perfect, shouldn't I?

Each of us knows that it's a ridiculous notion. There is no such thing as the perfect parent. There isn't a person alive who NEVER loses their cool for an instant here and there. Especially parents of children who don't fit the mold... We know better than anyone, don't we, that sometimes you just get fed up? Tired? Stressed?

It's completely forgivable. It's understandable. It's HUMAN.

And yet... None of that stops me from beating myself up over it. I yelled at my child today. My beautiful, perfect little girl who didn't understand a single thing that was going on in that moment. My angel, who kept right on grabbing those bags of chips after I yelled because she didn't understand that no means no or that Mommy was frustrated or that anything at all was out of the ordinary.

I am not a bad parent for yelling "No!" at my child. I know this, and tomorrow, it won't be weighing on my mind and on my heart... But today, I'm having a really hard time being okay with this. Today, I feel like I failed her.

Just goes to show you, every day is a struggle, but, in the end, we endure for these amazing kids.

I Missed the Memo On That One...

So, you know how they say you shouldn't work out for a while after a dental procedure? OOPS. I completely forgot, nothing was mentioned during my appointment, and I went STRAIGHT FROM THE DENTIST TO THE GYM to meet with my trainer. I was wondering why I was so shaky and weak throughout my workout, but I just figured it was because I missed my normal workouts this week due to the craziness around here. It wasn't until I blacked out and fell over into my trainer's chair that I realized something

was up and figured out what it was. Sometimes I'm a complete idiot. All I can really say is, Oops. I've decided to take up running. I've seen a lot of people on Twitter who run marathons and 5Ks and the like to raise awareness and/or funds for autism and other special needs, and that's a bandwagon I'd really like to jump upon! Because I'm prone to dizzy spells when I do cardio, I brought it up with my trainer, and we're going to start easing into it with next week's workouts. I'm going to run for a minute on the treadmill, followed by walking for a minute, running for a minute, walking for a minute, and so on. The next week, it'll be run 2min, walk 1min; the next week: run 3min, walk 1min... And you get the picture. The idea is to gradually build up endurance and acclimate my body to running so I can do it safely. It's going to take a long time before I can run a 5K or anything like that, but I'll be working toward a goal and making progress every week, and that counts for something. A lot, really.

I left the dentist two hours ago. My face is still mostly numb, except for the tooth that was worked on, which hurts. Anesthetic fail.

On that note, I'm gonna go wait in the living room for C's bus to bring her home from school. There's nothing like a toothache to make you want to hold your kiddo. ;)

Wednesday, December 7, 2011

Back to Normal

Things are slowly getting back to normal around here. I slept a lot yesterday, sleeping off the exhaustion that resulted from my 13 hours of medical misadventure on Monday, and possibly fighting off a bug that seemed to be trying to worm its way through my immune system barriers. I woke up today and got C ready for school as usual... Only to then find a note in her backpack that today was a staff development day, and there would be no school. Doh!

So C went on an errand with me. What was supposed to be a quick trip to the car dealership for my 10,000 mile oil change and check-up turned into two hours of me watching her amuse herself with the various toys in the "Kids Corner" at the dealership. She bounced around from the toy trains to the toy diner, the dry-erase board to the video games to the books. Two solid hours, and not a single complaint out of her. No whining about being hungry or tired or bored... Just constant exploration and play. I have to say, I was really impressed. The time flew by just watching her amuse herself, and I actually had an enjoyable time.

I also was able to order a can of touch-up paint for the two "oops!" spots on my car. (Oops.)

When we got home, I had about two hours to go until I had to leave to take my final exam for my Serving Individuals With Disabilities and Their Families class (long name, eh?). I reviewed my lecture notes and watched a little Law & Order while C played in her room. Hubby came home with Starbucks for me (yay!), I made the hour-long commute to school (boo), and I finished the exam in 20 minutes (whew!). Then I drove back home, the fall semester officially behind me and a glorious Christmas break beginning.

C has school tomorrow, then next Mon - Thurs, and then she's on break for the holidays, too. We're spending almost the entire break with my family in Texas, and I can't wait. It's a little bit tiring to be there with C for extended periods because their house isn't kid-proofed and doesn't really have anywhere where we can let her run free and play, so there's a lot of chasing C around the house and redirecting her back toward appropriate play things and safe areas. She also doesn't sleep much there, so that's a bonus. =/ All that being said, I am REALLY looking forward to my trip "home," to seeing friends and family, to Christmas Eve at Maw-Maw & Paw-Paw's (an ENORMOUS family event!), and to a very special anniversary night off from parenting to enjoy being with my husband.

The only bad news today is that hubby still hasn't been able to get his referral to a neurologist about his migraines, and C still hasn't passed the penny, which means more x-rays to make sure it's not now lodged somewhere in her gastrointestinal tract. I swear, she's going to be glowing by Christmas at the rate she's going!

Tuesday, December 6, 2011

So, Yesterday Pretty Much Sucked...

Seriously, I can't remember any day as hard, aside from C's first two surgeries, which were both major surgeries that lasted a long time, and holding myself together in the surgical waiting area for hours seemed nigh impossible. Once again, though, I pulled through, C pulled through with flying colors (this is why I call her a warrior!), and the emergencies have all passed.

Miraculously, although I was on the verge several times, I didn't shed a single tear during or after my crazy day. I wanted to cry when I left my husband to fend for himself at Urgent Care, and again when I found out they were sending him to the ER. I wanted to cry when they told me that C's coin could have ruptured her GI tract and might leave a hole in her esophagus, and again when the surgery took twice as long as the time they quoted me and I still hadn't heard anything.

The hardest part for me was being so torn between the need to be there for my daughter in one city and the need to be there for my husband in another, and having to choose between the two. I just wish the crises had occurred just one day apart so I could have done right by both of them. Instead, I took care of my daughter and left hubby to fend for himself, which was the right choice, but which still felt like choosing one love over another... Which broke my heart.

At 9:00, they told us we'd be staying the night in the hospital. At 9:30, they said it would depend on how well C tolerated liquids. By 10:20, we were on our way home. Mind you, my day started with an x-ray order picked up at 9:00 and an x-ray performed at 9:30. I was on high alert ALL DAY LONG, over 12 hours. I got through it by texting hubby frequently to give him updates and get updates on his medical situation, calling my mom a couple of times, and texting/talking to one of my very best friends in OK, who somehow manages to be the calming spirit in my chaotic life from thousands of miles away. Bless her for being her! I didn't have a single anxiety pill all day. I suppose I could have asked for one at the hospital, but it never even occurred to me... And now I'm proud of myself for staying strong through a whole mess of a day without any meds. Bonus points for me!

C is back at school today, and hubby is back at work. It's almost as if yesterday never happened. The only lingering effect is that I had one hellish nightmare that I'm having trouble shaking this morning (it feels like real memories instead of a dream), but that's fading as the clock ticks on. It was clearly just a manifestation of all of yesterday's anxiety into a horrible people-killing-each-other dream.

I found a LOT of encouragement and support from Twitter yesterday. I was posting to keep my mind and fingers occupied during the long waits, and I was surprised at how many people sent prayers and kind thoughts out to a complete stranger who was having a rough day. It reminded me about the good side of the internet, the companionship and support and help that are out there amidst the scams and porn and shopping sites. It reminded me of the wonderful people of the world, and made me grateful that they're out there and haven't been beaten down by the horrible people. It helped a lot.

Now, I move forward with life. Yesterday, awful as it was, is over and behind me, and there are no lasting crises. I get to move back into my role as wife and mother without all the hysteria and medical questions thrown my way. Yesterday, I felt like my family was fractured and in peril. Today, we are whole and safe again.

Monday, December 5, 2011

Crises Abound!

I am writing this from Renown Hospital in Reno, where C is being admitted for an emergent surgery, scheduled 30 minutes ago, to remove a coin that has been lodged in her throat for at least two weeks. I spent all morning at the hospital at home waiting for it to get lined up, was sent home to wait, and found out five minutes after I got home that hubby needed a ride to Urgent Care. I was in the waiting room with him when I got the call to drive to Reno. Just after I left, Urgent Care sent him to the ER. Why do they both have to need me at the same time? Couldn't just one of these emergencies have come tomorrow so I can be there for both of my loves? I had to act too fast to think to grab an anxiety pill, so I'm left to get through both situations all on my own. Today is not one of the easy days. Wait... Have I ever had a truly easy day?

Sunday, December 4, 2011

Kitten

We have renamed the kitten from Seamus to Shameless, because he's a shameless attention whore and food thief. Hubby still calls him "Kitten," though.

The One Where C Gets a Cold

C never gets sick. I mean, like, NEVER... But, for the past few days, she's been battling a cold. It was just a runny nose at first, but now it's crud in her chest with a little cough and massive running of the nose. Really, it's beyond disgusting. She's an oozeling.

So, following my best Mommy Instincts, I am keeping her home from school tomorrow in hopes of giving her a day to rest up. Of course, we'll have to leave to go get her follow-up X-rays to find out if there is, in fact, a round metal object stuck in her throat... And whether or not she rests is completely up to her, as that child CANNOT be forced or tricked or lulled to sleep. She sleeps when she's damned good and ready for it, and no time else. All I can do is turn off the lights to minimize distractions, give her a bottle so her tummy will be full, cross my fingers, and hope for the best.

Of course, keeping her home means I had to cancel my workout with my trainer, but that can be easily rescheduled. It also means getting her X-rayed earlier in the day, which *might* mean getting an answer back by the end of the day as to whether we need to intervene on this coin or whatever the last X-ray showed in her throat...

...So maybe she won't be getting any extra rest, just a little less excitement than school offers up to her. =/

Still, at least this way, she doesn't get any of the other kids (or teachers!) sick. Poor kid... She never gets sick, but when she does, she's just plain miserable. :(

Saturday, December 3, 2011

Another Week Comes to a Close

This week was a fairly typical week. I went to the gym Monday and Wednesday mornings, I went to my therapist and started EMDR on Tuesday, I had class Wednesday night. I played WoW Tues-Thurs nights for about 2-3 hours each night (raiding), and I spent Friday being as lazy as I could possibly manage while Ceili was home because there's no school on Fridays. This morning, I woke up early to go to the salon and get my roots touched up and my bangs cut.

I had Starbucks four or five times this week, including this morning. I stuck to my diet 3 days, cheated on dinner the 4th day, and cheated outright yesterday, although it IS a flex plan with two days off per week, so it just means I have to get back on the diet tomorrow instead of waiting until Monday.

I spent three days on the phone with our pediatrician's office trying to get follow-up X-rays on the coin(?) in C's throat that showed up in her X-rays on the 22nd, which the doctor felt needed foll-up X-rays to see if it was still lodged in her throat and/or needed surgical removal. That battle to get someone on the phone and to get a phone call returned resolved in them calling me after closing on Friday to tell me I could pick up the X-ray order on Monday morning, so I guess I'll be going by there while C is at school and taking her for X-rays when she gets home. It makes me nervous knowing there was something in her throat and that it's taking this long to verify whether it's still there and whether it needs removing.

I also spoke several times with the company that will be making C's custom wheelchair, as ordered by the orthopedist at Shriner's. Things seem to be progressing well so far. They're going to talk to C's PT at the school on Monday and schedule a time to go down and evaluate C, measure her, etc to determine exactly what kind of chair and cushions she needs. That will be done before they can get authorization from our insurance company, but it seems our insurance company has a good track record of approving mobility assistive devices from that company when a doctor orders them (no small miracle there!). The insurance company typically covers $3,500 of the cost of the chair, which should be enough, unless it's determined that she needs custom molded cushions as opposed to just regular cushions that are cut to size and placed strategically for her needs, so there's a chance this new chair could cost us nothing, which would be an enormous miracle. Now I'm just crossing my fingers that there's any chance we could get the chair before we leave for the holidays on Dec. 20, because we use our current wheelchair heavily while traveling, and it would just be fantastic to have the new one ready in time for our trip!

I foolishly bought "one last" gift for my husband for Christmas, even though I couldn't afford it. It's something I know he wants, though, so it'll be worth it when he opens it and bursts with childlike excitement over the silly thing. I'm having all of his gifts shipped to my parents' house in Texas, which is where we'll be spending Christmas. His anniversary and birthday presents are going there, too, as we'll still be visiting there when those special days roll around.

For our anniversary, which happens to fall on New Year's Eve, we'll be staying at the same hotel we stayed on our wedding night, with the same view of the river and the fireworks that are set off over the river at midnight. My mom is babysitting C overnight, so we'll get to go out to dinner and/or drinks if we like, have a romantic night in a luxurious room, and try to remember what it's like to be a couple instead of just parents. Sometimes it's difficult to be both, and parenting always seems to come first, so it should be a really good night off for us. I can't wait! Plus, the next morning is his birthday, so he can open anniversary and birthday presents all in the hotel room, and I won't have my mom looking over shoulders grumbling about how I spent too much money on gifts. ;)

Ceili's school didn't send home any art projects this week, which was a bit of a disappointment. Some weeks, they send home a few things on Thursdays, and then other times, they wait a few weeks and send home a whole bag of stuff all at once. I guess they'll be sending a bag one of these weeks, so I can at least look forward to that, but I just burst with pride when those things come home from school, especially since she's doing more and more of the work by herself, and I can see her influence expressed in the art. Looking at her fingerpaintings, I can see her in my mind, hands covered in paint, smearing the page and squealing with utter delight. That's half the joy of getting her work.

I missed the post-Thanksgiving weekend 60% off custom framing at Michaels, so I'm going to have to wait for their next framing special to get a favorite fingerpainting and her first completely solo watercolor done with a paintbrush framed to hang in the hallway. I intend to turn the hall walls into a C museum with all of my favorite works. She's getting watercolors for Christmas this year, so she'll even have some homemade works to hang on the wall. (I need the hallway because, let's face it, a refrigerator door just isn't big enough to showcase all of the artistic masterpieces made by an only child with special needs!)

I've been plugging LakeshoreLearning.com on Twitter lately, and with good reason. They have an amazing array of toys and furniture that are perfect for parents or educators of children with a variety of special needs, and many of C's Christmas presents are coming from there. The biggie was the sand and water table I ordered on Nov. 28 that arrived at my door just FOUR DAYS later, on Dec. 2. I'm not going to set it up in her room until after we get home from Texas, but she is going to LOVE that. The water table is her favorite station at school, so I know it's the perfect Christmas gift for her. I'm going to have to get creative about covering the carpet in her room, though, or I'll never be able to get the sand out of it! ;)

Thursday, December 1, 2011

You Just Can't Use the R-Word

First of all, it isn't medically correct. Forget politically correct for just a moment... People are no longer classified as having mental retardation. They have intellectual disabilities. So calling someone *cringe* retarded is outdated and makes you look ignorant. Congratulations.

Secondly, you never know who's listening. You may think calling something retarded or calling a person a "tard" is okay because, well hell, everyone else is doing it, right? You don't actually mean to make fun of people with disabilities, you just think your friends are being idiots. Well, what if the person at the table behind you has an ID? How do you think it makes them feel to hear the term "retarded" thrown around in a derogatory sense? What if the person in front of you in line has a child with an ID?

The one that hurts me the most is the joke about "Doing (fill in the blanks) is like being in the Special Olympics; even if you win, you're still a retard." Now, the Special Olympics are a WONDERFUL thing. They bring a sense of pride and belonging to so many kids and families. There's a sense of accomplishment, pride in doing your best and maybe even winning at something for the first time in your life. It's about support and encouragement. Why on earth would you want to turn that into something ugly by making mean-spirited JOKES about it??

I have at least one person who will never talk to me again because she posted that joke about sports fans on her Facebook profile, and I called her out on it. I pointed out that, as a mother, she should understand that it's hurtful to other parents as well as to children who have an ID, and she doesn't know everything about who's reading her posts. She didn't know that I have a child with developmental delays that will likely be diagnosed with an ID when she turns 6 (the magical age in which Nevada no longer accepts "developmental delay" as an eligibility-meeting diagnosis for special education services). Similarly, she wouldn't necessarily know if one of her friends had a brother, a sister, a cousin, an aunt, an uncle, a parent, or a grandparent with an ID. Posting that horrific joke in a public forum was just plain wrong, and I wasn't going to let it slide. I was polite in pointing out that it's harmful to make jokes and to use the r-word in a derogatory sense like that, but she was so upset that someone would point out that she did something wrong, she unfriended me and hasn't talked to me since. Frankly, my life is better off without the kinds of people who will make those jokes and then not listen to you when you point out how damaging they can be. Learn from your mistakes, kids. Don't just insist you're always right and run away.

I typically try not to call anyone out in public. I pull them aside or send them a private message indicating that what they're saying is deeply offensive, and that we could do the world a lot of good if we eradicated that word from the colloquial lexicon, one person at a time. Most people are apologetic and understand with just a gentle nudging.

The other night, I was in a 25-person group playing an online video game. Two people had already thrown out the r-word in the group chat, so I spoke up and requested that they not use that word anymore. My polite plea prompted them to use the word even more often, and three others joined in, just to taunt me. I felt sick to my stomach and nearly cried. I had to remind myself that people like that fall into my "horrible people" category, and I can't let them have power in my life. I can't let them get to me, and I can't afford to give them my tears. Those people--the ones who go out of their way to offend and to be cruel--need to be ignored. You can't save everyone, I guess...

But the battle rages on. I will continue to do my all to eradicate that word from our society, to make people more aware and more sensitive, and to protect the feelings of individuals with ID and their families. It's just too important to let go.

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!

video
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?