Tomorrow I will go into what happened with Brandon. Tomorrow I will delve into that pool of hurry up and wait.
Today I’m eyeball deep in hospital stays and IV’s and PICC lines and WILL WE BE HOME FOR CHRISTMAS?
I have not cried yet. I was almost fully expecting this to happen. I’ve welled up a few times, but managed to keep them away. The afternoon was spent finding places for our other two children to take refuge so that we could focus on Angel. Scheduling who would be where and when and for how long and who would do better sleeping in the hospital and who would do better at home?
And how would we really be able to handle our little baby’s first ever hospital stay.
In essence, Angel’s lung functions were still very poor, very low. Without a bit of question the doc started making calls before she even came into our room. Angel was to be admitted. She would start with a peripheral IV, and have a PICC line inserted soon as possible. Knowing what day was fast approaching, the pulm said that we would try to get her discharged on Christmas Eve and let us do the PICC antibiotics at home…but since it’s our first ever hospital stay and our first time with a PICC there are no guarantees.
Angel has been holding up extremely well. She calls the hospital her “new home” and says she wants to stay here forever.
They do her treatments (Albuterol by nebulizer & chest compressions) four times a day. She has her vitals checked every four hours. The nurses all love her (really, who doesn’t?).
She has a nice lady that comes in (a sort of ‘morale’ nurse) and brings in an iPad full of games when she has major stuff done (like IV’s or blood work). She’s up much later than we let her stay at home, and there’s a cabinet full of movies for her to watch on her (private) room’s TV.
Angel…she’s on cloud 9.
Archie and I are in our own little hell. Trying to be the strong ones.
This was not how I’d planned for my holiday week to happen.
My family scattered, each child in another place…Archie & I having to schedule a basic avoidance of each other to avoid hospital parking fees.
One way or another we’ll be together for Christmas.
It’s the week leading up that’s nothing like I pictured it.
It makes me sad.
But through the sadness I have been so blessed. We DO have people to take the kids. Archie CAN take whatever time he needs off if he wants/needs to – even w/o PTO left (they’ll be working w/ HR to find a way to cover the hours). We have offers of help.
I have found that not only can my fabulous Indy bloggers throw an excellent party…
But they are there for you when things go south. It has been many years since I’ve had “real” friends – my closest friends have always been cyber and far from local (every bit as real to me…but not someone I can go drink have coffee with). But in my time of need, so many popped up with offers of help and support. (One in particular…Emily, you are a gem beyond belief.) My neighbor has offered support (thanks, lady. Won’t name you, but I know you’ll see this)…and so many others.
Of all the things that have threatened to break my no-tears streak, it is all of the amazing outpouring we’ve received.
In this time of stress…it’s wonderful to have blessings to focus on.
Sometimes it’s easy to ignore it all. To push aside the stress, the fear, the worry.
“The appointment is a month away,” you tell yourself. You think there’s no point in stressing now.
After all there’s not a damn thing you can do.
And things go smooth. You almost forget.
Then the moment happens.
Out of the blue you remember what you tried to forget. A reminder phone call for an appointment. A simple glance at the calendar.
And all the fear and stress you’ve shoved aside checks you into the boards rougher than any hockey player.
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One week from today there are two big doctor’s appointments. Both on the same day. Both with the same doctor.
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Angel will have her functions checked again. If she doesn’t bring her numbers up, our Christmas may be spent in the hospital. We will also be discussing having a full genotype run on her to determine her exact CF gene combo (as the original bloodwork did not turn up her genomes in the ‘standard’ for CF).
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Brandon is also meeting the pulmonologist for the first time. He will have another sweat chloride test run (if Angel’s evolution is any indication 2+ tests = diagnosis). He will have blood work run (possibly a genotype for him as well). The doc will discuss his history and determine what other testing he needs.
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I don’t know what’s going to happen.
I try to focus instead on keeping insanely busy for the holidays.
Then it hits.
One week from this minute I may have 2 CF kids instead of 1.
Or not.
I may be trying to figure out if the genotypes will be covered by insurance and if not, how to afford them.
There’s a lot of unknowns. I hate unknowns.
I don’t know how to help a grown child that’s always been healthy come to grips with a CF diagnosis.
Angel, well, she’s growing up with it…it’s already normal for her. Brandon grew up without major issues.
December 7 – Community. Where have you discovered community, online or otherwise, in 2010? What community would you like to join, create or more deeply connect with in 2011? (Author: Cali Harris)
I found a community right in my own backyard. Twice-over.
First was literally in my own yard. My neighborhood spent another summer outside. Nearly every night, definitely every weekend we could be found in each others yards. Chatting, (more than) sometimes drinking, laughing. Our kids played together. Our community deepened.
Then there’s the Indy Blogging community. I always knew there were a few, and all that I had met were nice…but I never felt enmeshed in the community. In the past few months I’ve gotten more involved, and have grown to absolutely love the blogging community here in Indy. I mean, with people like Cherie, Casey, Emily and Shireen (just to mention a few, believe me, there are a LOT more)…what’s NOT to love?
December 8 – Beautifully Different. Think about what makes you different and what you do that lights people up. Reflect on all the things that make you different – you’ll find they’re what make you beautiful. (Author: Karen Walrond)
This question has taunted and teased me since I first read it yesterday. Any attribute I thought of as ‘different’ suddenly didn’t seem so different when I thought about it.
I’m creative – but so are many others.
I burn my creativity on everyone else, rarely making things for myself – but really, don’t we all know generous people?
Archie calls me the nurturer. I never dye my hair (I don’t even pluck my gray/whites). I never pluck my brows (my one feature I love as it is). I never take a compliment (i.e. I have a hard time believing them). I take on too much and then panic and rush to get it all done. I’ve been through things I never talk about…painful things that only 1 or 2 people know about (something I’m trying to change. Some things need to be addressed). I hate making phone calls (not sure why, just makes me uncomfortable), I prefer online communication – I’m better at writing words than speaking them aloud. I’m the first to admit that somewhere along the way I lost the ability to communicate and associate with my own family – and I have NO idea why (another thing I’m attempting to correct). I have a compulsion to lie, when there is no reason to, that I have to force myself to curb on a regular basis (and fear my son is adopting the same bad habit). I always have to get the mail, if I don’t, or I’m going to be late and have to think about someone else getting it, I get the shakes (weird, I know). I don’t have enough patience. I cling to the past (good times and bad) tighter than I should. My mind never stops running, to the point of annoying my husband with my apparent lack of focus (multi-taskers unite….no less than 3 things going at once – ever).
Not one of these things make me different.
But that makes me no less beautiful. I often forget how to feel beautiful…but my husband always reminds me.
December 9 – Party Prompt: Party. What social gathering rocked your socks off in 2010? Describe the people, music, food, drink, clothes, shenanigans. (Author: Shauna Reid)
What isn’t amazing about that?! Casey had a Just Dance 2 Party last month, and it was SO much fun! I’m telling you, the Indy Bloggers are a hoot & a half! (That’s Hoosier-talk for, they are SO AWESOME)
Of course, there was also the Verizon Wireless party hosted by Cherie. That was another great party…great food, great company (hey, I figured out where I’d be getting my first ever tattoo…once I do another bucket list item crossed of!)…AND we all got Droid’s to try out for the holidays!! I do plan on telling you all about mine soon – I’m still trying to come to terms with how I’m going to let it go in a couple of weeks 🙁
After the past couple of months…I’m looking forward to more parties with these great women…2011 should be great!
In case you live under a rock and didn’t already know, there’s a great new challenge of sorts out there in the blogosphere. It’s called #Reverb10. It’s a chance to reflect on 2010 and set your destiny for 2011. Through a series of (very inspiring) prompts. You’re not required to post daily, but can do a few at a time if you want. Anyway, first I saw that Mishi was doing it, and then Lotus, and then on twitter I got a nudge from Mishi asking if I was taking the challenge. Well, I can never turn down Mishi…even if I hadn’t already been seriously considering it, she tipped the scales, so here I am. Once again posting in December (at this rate I should have signed up for NaBlo for December!!). This could be a long post, but I’ll try to keep it short.
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December 1 – One Word. Encapsulate the year 2010 in one word. Explain why you’re choosing that word. Now, imagine it’s one year from today, what would you like the word to be that captures 2011 for you? (Author: Gwen Bell)
My word for 2010 would have to be:
CHANGE
2010 brought a lot of change in my life. Archie and I changed the way we related, the way we communicated. After a rough year in 2009 (we had a very rough patch), we worked on repairing our relationship. It’s changed our relationship for the better. We also experienced the sudden loss of my grandma, Riley starting Kindergarten, Brandon joining Scouts and Cross Country – not to mention his voice changing – which all helped turn him into a young man, an almost officially teen young man. Angel’s illness changed, becoming no longer a diagnosis and more a reality. The girls finally changed and became potty trained. And our status as a parent of 2 special needs children has changed into possibly 3 special needs kids. The last change happened here on this blog. For well over a year I neglected it, posting sparatically, insignificant posts that didn’t MEAN anything. In just the past two months I’ve started a gradual change in myself, and am trying to reflect it in my blog. I’m writing more, and yes some of it is fluff, but it’s changing, becoming much more honest about who I am, and who we are.
In 2011, I want my word to be:
GROWTH
I want to take 2011 and see growth in all areas of my life. I want to take charge of myself and really grow in the new year. In all aspects of my life.
I want to stop leaving behind goals and dreams, and get the strength to follow them through.
To grow my blog. To grow in my photography. To grow in my family, in my spirit, in my home and every aspect of my life.
I want to see my family grow stronger, more capable, more joyous in our every day.
I want everything about my life to grow. Change will not scare me, because it will mean we are growing.
December 2 – Writing. What do you do each day that doesn’t contribute to your writing — and can you eliminate it? (Author: Leo Babauta)
I spend way too much time surfing and watching the TV. It doesn’t contribute to anything in my life – certainly not my writing. I can eliminate it, I HAVE to eliminate it. I need to organize my life better so that I’m not wandering around aimlessly in the WWW when I could be doing something meaningful – whether it be writing, taking care of my home & family or taking pictures.
December 3 – Moment. Pick one moment during which you felt most alive this year. Describe it in vivid detail (texture, smells, voices, noises, colors). (Author: Ali Edwards)
This is difficult. One moment that I felt most alive. There were a few. My first wine tasting with my husband. Our weekend getaway downtown where we just walked the city and dined out, spending the night in a nice hotel. The photo walks I went on with my son, where we shared a love of photography and a bit of one on one time.
But I think it was in this moment. I had broken the 2.75 mile barrier on a run when I was attempting the C25k and felt proud and so very alive despite my exhaustion.
I have since fallen out of the running habit, and now with snow on the ground and no gym membership affordable it’s not looking likely to get re-started in the next couple of months…but I have every intention of starting it up again. I loved the sense of accomplishment this horrible non-runner got from beating the previous pace, building up my stamina and getting healthy again.
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Yes, it is December 4th and there’s already a prompt for today, but I’m out of time and I’ll be back on Monday with another three days of #Reverb10
I’m almost too late for my post for today, so this is quick and silly.
Confessions of things I’m certainly guilty of after almost 13 years of a Mom.
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1) I always thought Steve from Blues Clues was hot…even before he left and shaved his head.
2) I hate Mary Poppins with a deep passion. Ever since Brandon was obsessed with it and I was forced to watch it over and over for weeks on end…and came to realize she is a pompous, self-righteous, snobby bitch.
3) I actually enjoy iCarly and Victorious. They make me giggle. Big Time Rush – not so much.
4) I used to use the TV to babysit Brandon. He would come into my room at 5AM on the weekends, I’d flip on the cartoons and go back to sleep. What can I say…the kid NEVER slept!!
5) I hate Spongebob almost as much as Mary Poppins. ‘Nuff said.
6) I haven’t taken any of my kids to a movie since Riley was an infant. I don’t trust them to sit through one. So all movies wait for video.
7) One of my favorite all-time movies is Lion King.
8) I miss the earliest days of Blues Clues before Dora and Diego and Max and Ruby tainted the waters.
9) I am actually physically disgusted by the Diego episode with the Iguana and the strawberries. You know the one…
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There could be more, but I was distracted by Avatar and now MUST post this before midnight or I mess up my NaBlo!!!
My brain is totally fried, so welcome to random bits of thoughts & feelings…
* On Monday I went to dinner with my good friend from high school. I always LOVE having dinner with her – the conversation is ALWAYS good, the food is always good, the company is always comfortable. This Monday wasn’t so comfortable and it’s all my fault. I wasn’t feeling well, but was SO desperate to get out that I went out anyway. I only had five bites of my DELICIOUS dinner b/c I had a stomach bug and kept getting nauseous. But, we still had a good conversation.
* On Tuesday the sick hit even harder. My entire day was spent on the couch. Dog at my side, Angel climbing all over me.
* Oh yeah, did I mention we’re dog-sitting my parents dog right now? It’s added a certain level of chaos – even though she is a VERY good dog. Amazing how just one more small body in this tiny house turns everything on its head.
* On Wednesday I was SO lucky to be a part of the AMAZING event that the lovely Queen of Free set up for us Indy Bloggers that was sponsored by non other than Verizon Wireless. That means that through the holiday’s I’m sporting a gorgeous little buddy that goes by the name of Droid 2. It really is a beautiful thing that you’ll be hearing more about.
* Have I mentioned that Indy has a network of some of the most awesome bloggers on the planet? In the past month I’ve been privileged to go to two separate blogger parties with some of these incredible bloggers…and every time I see them I’m reminded how lucky I am to be in such excellent company in such a great part of the country. Where all the bloggers really reach out and get together on a semi-regular basis…and a good time is ALWAYS had by all. Whether a small get-together or a big party.
* After I made Emily’s gloves, the Queen of Free ordered a pair (pictured above). I threatened to keep this pair…I loved them so. BUT, on that note…thanks to Emily and Cherie (and a few others) ‘gentle’ nudging I’m hoping to open an Etsy shop after the turn of the year. In the mean time my plate is full with 9 orders for gloves that I need to get done before Christmas! My fingers will be very busy – and need a holiday break of their own 🙂
* In all the chaos, my Christmas pre-baking has taken a back seat. Hoping to get back on it next week.
* Speaking of which, I get to meet HER next week. I’m totally a-quiver in excitement. She is awesomeness wrapped in incredibleness. We shall share coffee and hopefully I will be able to maintain sparkling conversation.
* I’ve been working on a new layout for my blog. Hope to reveal it soon, but I need to do some organizing first…P.S. There will be Ad Space – email me if you’re interested in a block (sarah.cass.rp(at)gmail(dot)com)
* I am purposely avoiding the bad-news topic. If you missed it read it HERE and then HERE. Thank you all for your kind words here and on twitter. First appt is end of December & we’ll have more to talk about then.
* I need business cards. For that I need an official business name (for the etsy shop – preferably tied into my current Redefining Perfect brand). Suggestions?
Today was the dreaded day. The one that has stressed my nerves for over a month. The one where two of my kids were to meet with the pulmonologist.
In essence, Angel’s lung functions were still very poor, very low. Without a bit of question the doc started making calls before she even came into our room. Angel was to be admitted. She would start with a peripheral IV, and have a PICC line inserted soon as possible. Knowing what day was fast approaching, the pulm said that we would try to get her discharged on Christmas Eve and let us do the PICC antibiotics at home…but since it’s our first ever hospital stay and our first time with a PICC there are no guarantees.
They do her treatments (Albuterol by nebulizer & chest compressions) four times a day. She has her vitals checked every four hours. The nurses all love her (really, who doesn’t?).
Angel…she’s on cloud 9.
