Ever had one of those days? How about one of those weeks? Months? Years?
I’m in the middle of one of those weeks. Coming about 4 weeks after one of those months…which is turning this into one of those years.
Let’s focus on this week.
My birthday is coming up (this Sunday). For the past several years my bday has not been anything spectacular, and in some cases it’s flat out stunk. Not sure why, I just haven’t had the birthday Gods on my side or something. This year is proving to be no exception.
In one week we’ve had a trifecta of appliance crap, been overcharged by WalMart Eye Center, and lost the ability to finish my deck for my bday (all I wanted for it), oh and the plants I purchased for it are pretty much dead (my fault, I shouldn’t have bought them until it was done.).
First, over the weekend the fridge died. Freezer worked fine, fridge wouldn’t cool. Appliance repair guy came on Wed. Assured me w/ the statement, “It’s a $45 part.” Then proceeded to charge me an hours labor for a 30 minute job (that’s $60, mind you), AND $40 to defrost my fridge with what sounded suspiciously like a hair dryer.
Thursday morning I went to give my two little stinky angels a bath. Oldest was washing dishes. All of a sudden, there was no hot water. Well, crap.
I pull open the utility closet and the pilot’s out on the water heater. At least, I think that’s the problem. If it wasn’t, it sure became the problem when I turned the whole thing off. Archie came home and re-lit the thing and we have hot water again. We just aren’t sure how or why the pilot went out and hope it’s not going to crap out again all too soon.
Not four hours later I stepped outside and the Air Conditioner sounded really loud. Thinking it was odd I walked on over to find the fan not spinning.
GREAT.
On our side for that one is our neighbor is an AC guy and he came over to take a look.
But seriously?
Why does Murphy hate my birthday so much? Or, for that matter, me? I didn’t do anything to him.
Well, he can go to Hell. I’m taking my birthday OFF. I’m not going near an appliance, a vehicle, my computer, nothing that can break. I’m staying in bed and pretending it doesn’t exist. I’m really tired of this crap storm.
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P.S. For those who haven’t seen me on twitter or FB, here’s the Angel update –
SHE’S HOME!! No hospital stay for us! Just as suspected, we are now officially, 100% w/o a doubt a CF family. You do not get psuedomnas if you don’t have CF. The culture results will NOT send us into the hospital, but if they are positive we will be starting a lifetime regimen of one month on/one month off on the TOBI (inhaled antibiotic through nebulizer – very expensive stuff)…but we won’t know that for a week. I’ll keep you posted!
P.P.S. I’ve been trying to get back into 365 by getting a week in advance done. I’m afraid I missed yesterday w/ all the stuff going on…so it’ll be another week or two before I get those started again – but I will be participating in Weekly Winners again this week. Have a few pictures to put in once they’re edited. I have a trial version of a new photo manager/editor that I LOVE and plan to buy once we have the money. I’ll tell you about it later.
P.P.P.S. I actually have a bit to post about…but have been trying to skip days until I got more to write. I may just blow off that idea and do a random post of stuff. Who knows….
Angel goes in for her checkup after her rounds of antibiotics. It’s time to pay the piper. There are three possible scenarios after today.
1. Her lung functions have not gone up – hospital admittance, do not pass go, do not collect $200.
2. Her lung functions are up – go home. Get a call in a week that her sputum culture results are bad and we need to check into the hospital.
3. Her lung functions are up – go home. No further issues.
Now, obviously I want #3 to happen. I want her lung functions up and I don’t want a call in a week ordering us back in. I want her to be clear.
I fear the worst.
Stress for Archie and I is high today.
So I turn to a show I never watch, to find a pair of beautiful young women to inspire me and give me hope. Two sisters, Ali and Christina, both with CF (in a family of 4 children, all of whom have CF) – SINGING on America’s Got Talent. They give me joy, they give me hope, and they put me in tears every time.
*Otherwise titled “The post in which I piss people off.”
From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley. From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head. From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up. Every day, every night, every in between we are aware. We notice when Angel runs out of steam before she’s played for ten minutes. We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions. In danger of a night of a screaming, pouting, angry Riley.
We notice it all.
We see it in the every day.
We see it in the little things.
Every action, every reaction.
It’s a part of our lives. It is our every day.
Then you come along and say “But she looks just fine to me.” Or “She doesn’t seem autistic.” And of course the “She doesn’t act sick.”
I know you mean well. Really, I do.
But I hate it when you say that.
It’s like you’re belittling our every day.
The hours at doctors and specialists. The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours). The hours a day hooked up to machines to live every day. The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.
I know you don’t mean it this way. I know you just mean to say that despite their troubles they look healthy and happy. That unlike other children with special needs it’s not a visible/noticeable difference.
But I hate it.
Just say they’re beautiful. Say they have a great smile. They look like they’re having a blast.
Don’t contradict what we KNOW. Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on).
It is our every day.
We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives.
This used to be my escape. My me time was being on the computer so much that I wore down the keys.
I’m a homebody.
A computer/internet addict.
I’m well aware of my problem, and even though the first step to recovery may be admitting you have a problem…it didn’t help me.
Once everyone is in bed, this is still my escape. I come here every night in the quiet of my house. I write into the wee hours of the morning. Not blog posts, obviously since I’ve been so lax around here. I write stories. Dream of publication. All while ignoring my blog. I’ve sort of tied my avoidance of posting into the appearance of my parents on facebook, and everyone and my brother knowing my blog exists. A very public form of stage fright, if you will. I’m trying to get over it. I miss my blog. I hope to be back here more often. That’s why I prettied the place up (loving my new layout 😀 ).
My husband doesn’t like my computer, or my internet. For many years it’s been the cause of issues. Because my BFF is online. Because I spend so many hours on it. Because I don’t make my escape to the ‘real world’. The relationships I formed with other bloggers or non-bloggers online did not count as socialization. He doesn’t get the camaraderie. He might not ever understand. But that’s another post entirely.
In an effort to get along better with my husband (and rest my eyes and carpal-tunnel’d wrists), and to ‘get a life’ – whatever that means, I have started to venture out of the house.
I’d joined a playgroup when the girls were young – but always balked at taking out two young’uns together w/ diaper bags and such…it was always SUCH a hassle. Well, guess what. They are now 95% potty trained – diaper bags are no more! (We only wear diapers at night) So I don’t go to every playdate, but we get out.
I’ve been stepping away from the computer to hang out with the neighbors. My neighborhood is one I’ve raved about before here, on FB and twitter. It’s great for the kids, and it’s great for adults. I’ve made good friends with my neighbor across the way, and that works for me. Sometimes I spend the whole night away from the computer just chatting with the neighbors.
But I’ve also started to have ME time. Not w/ the kids, not w/ Archie. Just me.
I’ve reconnected with an old friend from high school and once a month we get together to eat, drink, and be drinky…er, merry. It’s been great to find out that even after losing touch a few years ago we still get along good and can talk for hours. One of these months I’ll be abandoning my family for a whole night to stay at her place.
My neighbor that I connected with and I started going to Zumba together (and are now talking about going to a wine tasting together – much yummier than Zumba). It about killed me, but it was fun. It was a six week session and I vowed to not re-sign up for it again. I had a few issues with it (false advertising for one)…and it just wasn’t my favorite. So now, I no longer go to class with her because she signed up for boot camp and I said “Um…NO.” I picked two classes…sooo…
First is Yoga.
I’ve been wanting to take a yoga class for a while. I’ve done a little in my house when we had FitTV, but I’ve wanted to do a full class session.
So on Tuesdays, for an hour and a half I’m in my Yoga class. I had my first session on Tuesday and loved it.
My body is sore, but it was great. The four week session is far too short, and I’m already planning on signing up for the next session once it’s posted.
Then I signed up for Body Sculpt.
I haven’t had my first class yet, and I’m a little scared. They’re calling for 5lb weights, which I have but never used.
I’m looking forward to it. Getting back in shape is something I’ve wanted to do. I’ve bought DVD’s like crazy – but making myself do them doens’t work. With these classes, I pay for them, I’m far more likely to do them.
So for me, I’m still using my computer – but I’m trying to not be so dependent/addicted – but I’m also trying to step out. To get away and back into real life. My girls are older, it’s getting easier – it’s getting harder.
I’m taking time for me. Time away from the stresses of family. Time away from the stress of being attached to the computer. My blogging has suffered, my writing has slowed…but I think in the end it’s better for me. My blogging and writing will improve because of it. Being a shut in doesn’t give you much fodder, after all. Life experience does that 🙂
(I make this post as I plan to sit in front of the computer and pre-write nearly 5 blog posts.)
It’s that time of year. Pollen counts are high, people are sniffling and moaning about hayfever and “allergies”. Today everyone has allergies (it seems like). Benadryl is over the counter, and there are more allergy meds than you can shake a stick at.
Some days I just look at everyone and laugh. I think, “If you only knew.”
From birth until the age of three I was, by all accounts, a holy terror. I never stopped screaming (although this is disputed by slides of me actually smiling – so it did happen). Nothing made me happy.
When I was three years old somehow my mother found what could label the cause of my problem.
I had allergies.
Oh, but this is more than the common problem of today. I was allergic to some very basic foods that are in EVERYTHING you eat (practically).
1. The protein in dairy. This meant no milk, no ice cream, no cheese, no butter. Nothing related to dairy products at all.
2. Corn. Yup, that yummy delicious food was among the list of my enemies. No corn on the cob, no corn on Thanksgiving. Imagine the cereals I was restricted from? Oh, and on that note:
3. Wheat. I barely remember this one so I’m pretty sure it’s the first I outgrew. (I only list it because my mom mentioned it in our last discussion of my little hell)
4. Cats, cat dander, don’t come near me if you have a cat. I sort of outgrew this in highschool, but it came back w/ a vengeance right around the time I got engaged to my husband.
5. On that note, any long haired animal was evil. I still remember in first grade we had a long haired guinea pig that I wasn’t allowed near. I always had to switch chore days w/ my BFF at the time (Hi Wendy!) when I got assigned the guinea pig.
6. Typical hayfever – pollen, dust (this one still majorly is true), mold…you know, the generics.
7. Soap. Bar soap (very much), bubble bath, shaving cream (oy, very much), body wash, deodorant (ugh. Yes, I use it). This one is still (mostly) true. I have to be selective of my liquid soaps and I still cant use shaving cream.
Weekly I went for shots (yes, shots. Most try to treat with oral meds these days) to “Dr. Bob”. My pediatrician and allergist extraordinaire. I couldn’t eat anything hardly, but meat and veggies. It was a good thing I was a freak of nature that loved my vegetables, because I HATED meat. All I could drink was orange juice or Kool-aid, the only cereal I could have was rice crispies or oatmeal.
My cousin (hey cuz!) to this day reminds me of the days I used to eat orange juice on my oatmeal or rice crispies. I think of those days and shudder.
I am addicted to pop nowadays because I still cannot bring myself to enjoy juice of any kind thanks to those influences. Kool-Aid is like a four letter word to me, but I’ll occasionally enjoy a Capri Sun or some pink lemonade – that’s my limit.
I eventually started to outgrow some of the allergies. Corn, thankfully, is something I enjoy frequently these days. Corn on the cob is still a favorite treat. Wheat, I don’t know how long that lasted, but I remember enjoying sandwiches in kindergarten so it can’t have been that long.
Dairy was tricky. I mostly outgrew it, and was drinking milk like a normal person by high school. When I got pregnant with my son, it came roaring back. And can I tell you something? Don’t EVER tell the hospital you have a dairy allergy. Otherwise your menu is seriously compromised. Anyway, with each pregnancy this sucker came roaring back w/ a vengeance and I was limited to no more than one serving of dairy a day (which I often opted for in ice cream). Now between my allergy and my lack of a gall bladder – dairy has once again become a four-letter word to me.
Cats. Oh, how I love cats. I love their purr, how they curl up with you, their grace…hell, I love the musical. Love, love, love cats. I got a cat in high school, Cali. I was not as affected by her dander as most other cats. Then we adopted Jazzy from my brother, and learned that I still had issues, but it was tolerable. We moved and eventually switched cats, and once again proved that I tolerate some cats better than others. Then I went to visit my cuz in NY. She had a huge ball of fur…Seriously, the cat was super-fluffy long hair. By the time I left her house 2 days later I could barely breath (after hogging her inhaler the whole time I was there)…got home and ended up in the hospital. Now, no cat is tolerable once again.
The worst these days is the soap/deodorant issue. Yes, I do use these things, I’m not a horrible pig. But I have to be VERY picky. I cannot use bar soap, of any kind. I don’t know what it is about forming the bar that does it, but I react every time. I have to use certain liquid soaps or shower gels. I CAN’T use shaving cream. I’ve ‘dry shaved’ since I was 11. It sucks. Then there’s deodorant. I have to switch about every six months to a year. I develop an allergy the longer I use a brand. I think I’ve been through almost every brand on the market and it’s time to switch again. Looks like I’m moving to the men’s aisle.
Needless to say, I don’t know how my mom did it. She should have put me in a bubble and fed me a liquid diet and be done with me. I was blessed to not have any kids w/ allergies beyond hayfever. For the almost two years we dealt w/ just a dairy allergy in Riley (who, thankfully has no issues now), I was at my wits end trying to find foods she could eat.
Just after Mother’s Day I got the call. “Grandma is going into the hospital for some tests.”
Words you never want to hear.
Within a week we had a diagnosis – stage 4 Lung Cancer. Plans were made to get to New York. My mom was to go out on the 26th of May; Archie and I were going on June 10th. None of us made it. We just didn’t have enough time. She was gone not a week after her diagnosis.
14 years ago I lost my grandpa. Less than a week ago I lost my grandma.
“GroGram” as her great-grandchildren called her. She was stubborn, strong, proud, and oh-so-loving. Nothing meant more than family. She’d seen what suffering Grandpa went through when he fought his cancer – and she wasn’t about to put us through it.
But the loss feels so sudden, so strong.
Her life was rich, full, long.
She had 3 daughters, 5 grandchildren, and 7 great-grandchildren – not counting spouses, who all loved her as if they’d been born into her family.
I had 33 years w/ her in my life. Brandon was blessed to have known her during his 12 years. My girls – they won’t remember. The picture of GroGram holding Riley is one of the few I have of her w/ my kids. I’ll always wish we’d gone to see her more. Financially it wasn’t feasible, but I still wish we’d forced it.
With each day you spend with your family, whether they live close or far – remember that in the end it will never seem like enough time together. Don’t scrimp on time, eat it up and revel in it. Take hundreds of pictures, don’t leave the camera in the case. Don’t waste a moment – because every time it’s over far too soon.
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I love you, Gramma…GroGram. We all miss you so much – but I know you’re with Grampa, happy and free of pain.
Ever had one of those days? How about one of those weeks? Months? Years?
