by Sarah | Nov 10, 2010 | All About Kennedy, Crap, Cystic Fibrosis
Lost. Shivering. Hazy moon is doing me no good.
My baby is sick.
And I didn’t even know it.
Today was Angel’s regular CF clinic appointment. Outside of our visit last month for a cough that proved to be nothing much, she’s had no symptoms. Her appetite has been great, no lethargy, no tiring easy.
I was expecting nothing.
Until we stepped into the room for her functions, and mother’s intuition kicked in again. From her first breath into the machine I knew. There was a problem. Her breath wasn’t spiking up as high as it usually did. Breath after breath was low. I got worried.
The Fellow came in and examined her and didn’t seem concerned outside of her very low functions. Then she went to get the big guns, the pulmonologist. First word out of the main doc’s mouth was x-rays.
What it came down to is once again we are on the edge. The precipice of what could happen. Our Angel has taken us to this precipice many times over the past year. We’ve been ‘threatened’ with hospital time if she doesn’t bring up functions, or one thing or another.
Every time she succeeds in beating the challenge.
Every time I spend a month worried that she won’t.
This time it’s one month again. Her functions must improve by December 15th or we may be seeing her first visit to the hospital at Christmas time.
For 3 years I’ve been sitting on the edge. Waiting for the first big illness. It hasn’t happened yet. I’m not wishing it on her, I’m not wishing it on us. I’m just tired of wondering when that shoe is going to drop. Figuring out how we will handle it. Worrying that we won’t manage.
I hate living like this.
I hate this illness.
I hate worrying that every little cold will be the big one.
I hate that my baby can be so sick and I didn’t even realize it.
I hate that her atypical form gave us three years of hope before dashing it with the help of Pseudomonas.
I hate having to force aside the fear and worry just to live each day with a bit of normalcy.
I hate the month to month.
I hate that for a few moments each day my absolute love for my baby is eclipsed by fear, worry and pain.
by Sarah | Nov 3, 2010 | All About Denver, Crap
For 12 years he survived. All bones intact.
The worst he’d done was cracked his head open once or twice – not one stitch, not one drop of glue, had ever held his flesh together.
Then back in the spring he became a comedic sight. One finger broken on his left hand, two fingers sprained on his right. He couldn’t use either hand, doing schoolwork was a challenge. All of that because his buddy cracked him in the hands with a golf club (on accident). Still, that was minor. The ‘break’ in his finger was in the growth plate. It healed in short order.
This time he isn’t quite so fortunate – although still relatively lucky.
He went on his first serious Boy Scouts camping trip. They hiked for several hours (his pack was 22 pounds), and then would make camp for the night. He went with our neighbor Moe*, who is also one of the troop leaders.
That morning I had a bout of mothers’ intuition. For some reason the thought hit me probably 10 in the morning and my brain screamed at me, “Brandon is going to get hurt today.” I didn’t fully listen, brushed it aside and went about our business…but even Archie says I was “off” all day. It was a ‘sweats’ day all day…I was just ‘eh’.
Then at 9:30PM Archie’s phone rang. My heart stopped, and the second I hear Moe’s voice I was on my feet, rushing to get dressed. I knew something had happened. I didn’t know what or how or why, or even how I’d get where they were, but I was going.
I was talked down from my insanity and eventually (two hours later) Brandon was home. Since he was exhausted and the scouts had come “prepared” (it’s more than just a saying), he crashed and we went to the ER in the morning. A couple hours later we were home with a new brace and sling – because for some reason ER’s no longer cast fractures (even compound ones – luckily Brandon’s was not compound).
A “buckle” fracture of the radius and ulna, a little more severe on the radius (which explains why he can more his fingers better than his thumb). It should heal in about 6 weeks and his cast will come off in five.
But to me it’s a badge of honor for him. He’s always been a tentative boy, careful…and not a ‘man’s man’ type of boy. In the past year he’s started to grow and change and bit by bit he’s becoming more of a man. Cross Country, Scouts, are both steps toward becoming a man instead of the curly-haired boy I remember so well. This cast is a symbol of that change, of him stepping into a world of strength. His handling of the pain has been so much more than it ever has been in the past. He’s growing up. Now he’s got a physical reminder of his steps away from me.
by Sarah | Oct 16, 2010 | All About Me, Crap
Day 09 – Someone you didn’t want to let go, but just drifted
It was middle school. The bowels of Hell.
I hated my life. I had one friend. I hated the way I looked, dressed…my acne, my glasses. Just two years of torture and teasing by my former friends and classmates had sent my fragile self-esteem into a nose dive.
My brother was on college visits with my dad, leaving my mom and I to find something to do. She decided that visiting her good friend at their camper would be a great idea. “Besides,” she informed me. “David* has a cousin about your age.”
I was oh-too-thrilled with that prospect. If she was anything like David (who may be reading this and I’m sorry, but you used to be…well, you remember)…I wanted nothing to do with her. If she wasn’t – well, she’d want nothing to do with me.
And so it goes that I met Julie*.
When I first saw her I figured I was done for. There was no way anyone with those looks would want anything to do with me. She had that it factor. You know the one. The one that screamed ‘popular’. Blonde hair, blue eyes, built like a….well, you get the idea. A year younger than me, she was taller, and far prettier. Yup, she’d classify me as the nerd everyone else did. My weekend was going to suck.
But it didn’t.
And she wasn’t.
She became my best friend. Instead of staying at David’s family’s trailer with my mom, I stayed at Julie’s. We talked, we laughed.
She LIKED ME. For who I was. Not knowing anything about my life at school, she didn’t treat me like those that decided in 6th grade that I was uncool (before I got the nerd markers of acne and glasses, they must have been psychic).
I begged to go back the next weekend, and the next. I begged for a trailer – and we got one, and a seasonal site just a few weeks later right at my birthday. Julie and I were always staying at each others trailers, sleeping in the tent. Eating Doritos and drinking hot chocolate (yes, together. Sounds yummy, doesn’t it?). Staying up into the night, never once passing gas and laughing (really, EVER). Sneaking out to be with the boys in camp, goofing off with nothing but the light of the moon.
We were inseperable.
For 3 summers, into winters.
Then I moved.
We did really good for a couple more years. I’d always visit when I got back to New York. Then she started college, I moved again. My visits to NY became less frequent. Our phone calls dissipated. Then she moved to Florida.
Time and distance separated us for many years. Then she found me again. Called me. Updated me on her life. That she was expecting a baby. For a month or two the communication resumed and then faded again.
Now, through the wonder that is Facebook we’ve found each other again. But it’s not the same.
She was there for me at a very important point in my life. She will always be remembered as my best friend. She will always be counted as a best friend. I know that if we saw each other face-to-face again it would be like old times. That is the wonder of true friendship.
Knowing now that she’s much closer to me than Florida (she moved again), I hope to see her again sometime soon. To meet her child, to get close to her again.
I never wanted us to drift apart. Life had other plans.
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*Names have been changed. These people are all my friends on FB now, so they know who they are, but I never use real names without permission 😀
by Sarah | Oct 8, 2010 | All About Me, Crap
Day 08 – Someone who made your life hell, or treated you like shit.
Middle School.
The bowels of Hell for me.
I was insanely skinny, big ugly pink plastic glasses, braces, and acne.
Perfect fodder for evil pre-teen/teenage girls.
I had 2 close friends. Super close. They both had the same name. We had the “I’m Larry, this is my brother Darryl, this is my other brother Darryl”-type thing going on. We passed notes, to the point where we had a 3-way notebook we would trade back and forth between classes. Every school day someone took it home, every weekend. Our deepest thoughts, our silliest dreams and crushes, our love for NKOTB kept us bound in one spiral notebook after another. It was us against the tides of evil girls out there.
Our circle grew just a little bit. A few other girls became our friends as well. Not the best friends, but they were friends.
Then it happened.
One of my Darryl’s decided that I was the perfect target to bolster her esteem. In a far away town on a class trip (w/ at least 1/4-1/3 of the entire class on it) she managed to break my heart, destroy what little bit of reputation I had, and totally leave our trio of friends in tatters.
Upon our return from the trip out of town my world was shattered. I had one friend left, literally. My other Darryl stuck by me, remained my friend all through the 9th grade when I moved away…and on occasion we’d see each other when I went home…and we’re now facebook friends again.
My middle school life was hell…but in one fell swoop she ripped away what little bit of happiness I had. Some days I think I’m silly for still holding onto the pain…but every time I think about it, the pain is still fresh. A scar that will never heal.
“Darryl” was my friend. One of my best friends. It’s not something I will ever forget.
by Sarah | Sep 27, 2010 | All About Learning, All About Molly, Crap
But really, wouldn’t you make allowances for this face?
I met with Riley’s teacher last week. A pre-IEP/pre-parent-teacher-conference meeting. A “she’s beating the crap out of her sister, how is she behaving in school” type of meeting.
Her behavior scale is different than the other students – she has been granted more leeway.
But she hides under the desk. She doesn’t talk. The class has had their seats moved several times already this year – Riley has remained stationary. She plays alone. She shuts down if things don’t go perfectly. She has one friend.
One friend is better than none.
The other kids try, from what I’m told. Riley just isn’t sociable.
One of the biggest problems at the moment is that it’s mid-terms. The teacher is required to test every student the same. Riley does not respond to the testing the way it is. Without an IEP there isn’t a thing the teacher can do to accommodate her needs. We can’t get an IEP until the testing is done. Rock. Hardplace. Us. Suckville.
We are learning from our (vast) mistakes. But not fast enough to spare some pain.
The teacher is worried sick about what will happen during a fire/tornado drill.
I’m worried sick about how this all is affecting her. Affecting us. Our meeting with special services will not be until November. Our hands are tied until then.
I thought we were done with the “hurry up and wait”.
It will never end.
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*Apologizing for negative nature of post. Feeling negative/stressed. It’s carrying over.*
by Sarah | Sep 17, 2010 | All About Kennedy, All About Learning, All About Me, All About Molly, Crap, Random
On occasion the random bullet-filled post is fun. Guess what you get today? The virtual grab-bag of crap…I mean, the bullet-list…so much less defined than a bucket-list 😀
* Riley got sick this week. I called her school on Monday at 10:45AM. Told them her name, her teacher, that she was in PM kindergarten – and said she was sick & not coming in. 2 hours later the school called wondering where she was. SOOOO not working in their favor.
* On that note, I have a copy of a withdrawal letter for her drafted. It’s not set in stone, but we’re meeting w/ her teacher on Monday. Might be an ‘exit interview’ to get our ducks in a row. Informational “what is happening in class” and “this is what’s happening at home” type of meeting. Not sure which way the pendulum will swing after that.
*Our town had it’s street fair this past weekend. Somehow Angel managed to get a pingpong ball into a little fishbowl TWICE. So, “Pingu” and “Nemo” are the new pets around here (pictures to follow soon). If they survive the week I’m going to need to get them a real fish bowl. Right now they’re managing, but I don’t have any proper materials so the water is getting filthy fast. Changing it out daily is not on my list of good times.
* The new season of GLEE is this coming week! YAY. Fall shows make me happy. GLEE, ANTM, Bones and Big Bang Theory I’m anxious to see again (okay, ANTM is already on, YAY). I’ve started watching Hellcats (don’t judge)…and I’m really looking forward to No Ordinary Family, Sh*t my Dad Says, and Blue Bloods (hello Donnie Wahlberg *sigh* – and my NKOTB love goes on – again, don’t judge, you know you loved them too).
* Speaking of shows…oh, how disappointed I am in True Blood. Alan Ball really took the show WAY off course – and BORED THE CRAP out of me this season. When you fast forward through 3/4 of the finale because you don’t give a sh*t about any of the characters – you know it’s bad. Shame on you, Alan Ball. SHAME ON YOU.
* I’m knitting again.
* And (sort of) writing again…more like editing my book based on some feedback I got. Once again I have confirmation from all that have read that my first chapter is great – but I’m still not getting my foot in that door. Oh well, I have a partial out once again (slightly rewritten from what it was), and I’m waiting to send out more until another time. At this time of year I stop pressuring myself to write so much, because it doesn’t flow as easy for me and there’s too much going on.
* Because of JENNIFER, I’ve started watching LOST. Yes, I’m WAY behind the ball, but so is she…and she mentioned it being on Netflix instant-play (which I’d noticed too) and commented that because she was late in watching she had no one to watch with. So, now I’m just about through the first season (would be completely but illness sent me to bed EARLY)…and annoyed at how hooked I am. Simple curiosity has me glued to my screen.
* I have more reviews coming. This will not turn into a review site, but some offers look interesting and I’m taking them when I can. At least one will go on my other site because it’s for a book, but occasionally you’ll see them here too!
* Did you know that there is now LESS than 100 days until Christmas? At the time of this post there will be 98 days until Christmas. Hey, don’t shoot the messenger! It’s a simple fact. How much shopping do you have done? I have probably 1/3-1/2 done already.
* I’ll shut up now. More random posts in the future.
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It wasn’t intentional, but this fits into the theme, so I’m tying it to Friday Fragments:
Lost. Shivering. Hazy moon is doing me no good.
