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!

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.

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?

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. :(

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! ;)

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.