Friday, July 11, 2014

A long overdue guest blog: A Brutally Honest Look at Diagnosis Day...One Year Later

For the last year, I have been begging my best friend to start her own blog. [Tangent: Yes...in addition to putting up with my grade-A brand of BS for the last 20 years,  she is a fantastic writer. ] Yesterday, she called me as she always does to tell me that she was feeling lots of feelings regarding a really huge milestone/anniversary and wanted to trap them all on paper and share them. Because she learned not to listen to me years ago, and doesn't have a blog, I decided to loan her mine for the day.  She's not promoting anything or trying to get you to shop at her etsy, she just needed a platform, and thankfully I have a little corner of the internet to share. Despite the fact that I am generally not huge on "mommy bloggery" (I'm not a mom and I can't relate on that level.), I think you'll appreciate her honesty (and plus there are some REALLY cute baby pictures near the end if you are a slow reader).  Take it away, Kristen...

One year ago today, I was 20 weeks pregnant. My husband and I were anxious to know what was growing in my bely...a little girl or a little boy? What would our lives become: football in the fall or pink tutus? Everything had been going well. From the moment I saw the second line on my home pregnancy test, I knew it was a boy. I had no doubts. I didn't care one way or the other, but I had the strongest gut feeling that we would be having a son.



Early in the pregnancy, my husband and I discussed whether or not to go through the early genetic testing. We decided against it. Neither one of us had any heredity anomalies between our families. Looking back, I wonder if our disinterest was due to fear. What if something was "wrong"? What would we do?  I don't think we were willing to risk being put in the position to make a decision like one that could potentially come from a frightening diagnosis.  So on the day we walked into our 20 week anatomy scan, all we were really concerned about was pink or blue?

I laid on the table and the ultrasound tech squeezed warm jelly all over my round stomach. We couldn't wait to know.  She started the scan and thoroughly examined every square centimeter of the tiny baby from head to toe. Unfortunately, the baby's position was less than ideal for a completely accurate gender reveal. The tech tried every trick up her sleeve and was finally able to get a little glimpse. She was 90% sure it was a girl.

She then wiped off m belly as she concluded the 45 minute detailed ultrasound. She exited the room to check with the doctor before we could leave as we had previously discussed before she began the exam.

We sat in shock. A little girl. I could not believe it. My mother's intuition was already faltering, but I was happy regardless.  My husband, however, was visibly disappointed. He had wanted a boy, a son to share his passion for sports with. I think a lot of men feel this way in the beginning. Girls are terrifying. Have you seen ow short the skirts and shorts these teen girls are wearing nowadays? We talked a little and absorbed our new information. A sweet girl on the way. Ok. We could do this.

We waited for the tech to return so we could leave. We had a mass of friends and family who were on pins and needles all day awaiting the baby's gender. We waited...and waited...and waited even more.

Finally, the door cracked letting in the bright light from the hallway into the tiny dark room we were in. A doctor entered, one that we had never met on prior visits. She introduced herself as a high risk pregnancy specialist and quickly got to the reason she was there. She began with explaining our baby had a congenital heart defect.

All I heard was: heart defect....heart failure...open heart surgery...and infancy. I immediately began weeping in fear. My baby has what?!? She explained it thoroughly and clearly, but I couldn't comprehend. I gripped my husband's hands tightly as if it would make this less real, like the strength of my grasp would make this news bearable. Tears poured down my cheeks, but she didn't stop there.

She then explained that the heart defect my tiny 20 week old fetus had was commonly associated with other genetic anomalies. It wasn't over, but I felt I couldn't take anything more. I was done. I heard: chromosome....disorder...and the words Down Syndrome. I couldn't breathe.

I cried even harder and now and lost my last shred of composure. I'm certain my cries were heard all throughout the long hallway of ultrasound rooms and waiting areas filled with other expectant mommies-to-be.

As the tears flowed, the doctor's explained that we could have close to a 100% confirmation of the chromosomal disorder she suspected within 24 hours via amniocentesis. We quickly agreed to the horrifying test. Now, we wanted to know. We HAD to know.

After the amnio was performed, we sat in the car in shock and disbelief. This can't be real. This isn't our lives, is it? But it was. We looked down at our phones, which were both full of alerts, messages and missed calls from our friends and family who had expected to hear from us already about the baby's gender.

Gender? I'm not even thinking about gender anymore. The previous day, it was all I thought of...only now, I didn't care anymore. I called my mother and could only get the words, "Something is wrong with the baby's heart and she might have something wrong with her chromosomes."  Even those few words were nearly impossible to say through hysterical crying. She immediately left work to meet us at home. We finished our car ride in complete silence, in shock, in fear and numb.

When my mother arrived, I explained it all. I cried.  I screamed. I wailed out in a way I've never cried before and hope to never cry again. She cried too, and stroked my hair as I laid across the chair I was in. I realized in that moment that like I cried for my baby, she was crying for hers. It was one of my first revelations about motherhood.

The next day, my mother and my husband's mother, who had driven up, as well as a group of friends that I've had for over a decade surrounded us as we digested the information. We feared for our daughter's tiny imperfect heart. We feared that if she had Down Syndrome, her life wouldn't be what we wanted for her. We feared that if she had Down Syndrome, our own lives wouldn't be what we wanted for ourselves. It feels embarrassing to admit that. I felt incredible overpowering guilt for the sadness and fear I had inside me. Was I already a terrible mother? Was I supposed to be taking this all in stride? To be cliche, all I had talked about when asked if I wanted a boy or girl was wanting a healthy baby. [I now hate that answer.] I don't have that now. I have a sick baby, who we already knew would at the very least require open-heart surgery during infancy to survive...and more issues were a mere 24 hours from potentially being revealed. The guilt was suffocating and the magnitude was excruciating. I phsically ached as we waited for the call that would determine our future.

With our friends and mothers in the next room, waiting patiently, the call came in and as expected, our little girl had a confirmed diagnosis of Trisomy 21, Down Syndrome.

The following weeks, I cried a lot. I found myself OK one moment, only to be overwhelmed with tears the next. What will she be like? Will people accept her? Will people love her? Will I love her the way I wanted to? Will people make jokes at her expense? Will people pity her? Will they pity us?

The guilt over my sadness grew and festered. I wanted to be that person who heard the diagnosis, accepted it and immediately became the strong mother/advocate for children with intellectual disabilities I see on human interest pieces on nightly news shows. I simply wasn't there.

Looking back a year later, I wish for three things:
  1.  I wish I could tell myself that I am strong enough for this. I had never felt more weak in those days of chaos. My strength came back and grew by leaps and bounds this past year. 
  2. I wish I would allow myself the sadness and fear without succumbing to the guilt. It's okay to feel sad. We call it grieving the child you thought you'd have (although realistically, do any of us really know what our tiny fetus will grow to be? )
  3. I wish more than anything I could tell myself that the moment I would look in er eyes after she was born 5 weeks early and only 3 lbs 14 oz that I immediately would be washed in an overwhelming calm. It will be okay. She is perfect. 
While this past year has been the absolute most difficult of my life, between the prenatal diagnosis of AVSD heart defect, bed rest at 27 weeks pregnant, preterm birth, 3 days of labor ending in a cesarean, 6 weeks in the NICU, heart failure, open heart surgery, failure to thrive and our newest bonus diagnosis of leukemia, I would not trade anything for my sweet and beautiful daughter.

She doesn't know it, but I have learned more from having her in my life than from anything else in the past 31 years. She is perfect . She will laugh. She will love. She will have successes and failures. All humans do. My job is to love her through them and when she aches because soemthing hurts so bad she can't breathe, my job will be to sit beside her and stroke her hair and cry with my baby, just like a mother should.


Wednesday, July 9, 2014

Running for the First Time: A Guest Blog by Sarah Mueller

You know how I tell you all regularly that blogging has brought some great people into my life? Well, allow me to introduce you to Sarah, who  I have actually met in real life...but who first contacted me via email because she thought like-minded wheelchair chicks should flock together. In addition to being a cool gal, she is a talented author, who has put out the book Elf Help: Ability Therapy. Her Ability Therapy Facebook page is always spilling over with interesting disability articles, if that is your thing. Also, she is only 27! [Tangent: Way to make this 31 year-old feel super unaccomplished!]


Enough shameless plugs, what am I getting at? Well, yesterday I noticed she had posted a video of herself trying out a zero-gravity treadmill  allowing her basically to be able to run for the first time ever. [Tangent: She is the Sandra Bullock of Spina Bifida. Get it...Gravity...anyone?!?] 



As you can see, for a 45 second video, the joy on her face was intense and contagious. It made me happy. Of course, immediately I wanted her to get on paper what it was like.[Tangent: Sarah is much more eloquent, less snarky and uses less four letter words. Enjoy something classy for a change!] 

Take it away Sarah...

At around 3:05 pm this afternoon, I experienced the most amazing, significant, positive (OK I get it, that’s probably sufficient!) and life-changing event to-date. Before I tell you what happened, let me provide you with a little backstory on who I am:


 I’m 27 years old, and I was born with a neural tube birth defect called spina bifida myelomeningocele. It’s the most common, permanent disabling birth defect known to medical science, but too few seem to know about it. There are several different kinds of spina bifida, as well as levels, but I won’t proceed to overwhelm you with all the details. If you’d like to learn more, please visit: sbaa.org (The National Spina Bifida Association)

For now, all you need to know is that spina bifida is a very fancy way of saying that a person’s spinal cord did not fully develop during fetal growth. Myelomeningocele happens to be the most severe form of spina bifida, but my level is one of the most mild levels—L5-S1, meaning my 5th Lumbar and 1st Sacral vertebrae are incompletely formed and therefore my neurological function is hindered at that level. The lower the “defect” (I am not really a fan of that word!) on your spine, the more function you are able to retain after birth.



While spina bifida is often referred to as a “snowflake” condition (meaning every single case is unique and different) there can be many similarities between cases—but these similarities typically do not affect each person in the same way. For me, this means that I am able to get around with the aid of a cane for short distances, and a wheelchair for longer ones. I cannot run or jump, and walking very short distances causes physical pain for me. So…that brings you right up to the magical moment I experienced this

 How did I accomplish this, you ask? 

I tried out an anti-gravity treadmill! [To be precise: The AlterG Anti Gravity Treadmill]  While the logistics of this machine are still a bit over my head, I’ll try to explain what I do understand.
per the AlterG site
First, you put on some really silly looking shorts that are a lot like scuba diving pants. Then, you step onto the treadmill into a tiny opening. Once you’re securely in the open spot, physical therapists will pull up what looks like a giant bag all around your body, up to about right under the chest line, and then proceed to zip it up all around you.

At this point (if you aren’t completely freaked out by the experience yet—just wait!) this giant bag around you then fills with air until you are lifted slightly above the running strip on the treadmill. It’s like you’re floating on air! Then, the device lowers you back down until your feet are again touching it.

From this point on you get to decide how much support the machine provides you—all based upon your individual needs as it relates to your muscle mass and overall strength. Once you have that plugged in, you can begin going as fast or as slow as you would like. The goal is to feel comfortable, and to feel absolutely no pain as you get an amazing cardio workout! It also happens to have a TV screen attached to it, so you can be entertained while you work out, or even have a camera directly on your feet and legs so you can see if you are running straight, or having any difficulties you may otherwise be unable to feel. In other words, this machine is amazing.

 My results:
 I went in with some serious lower back, shoulder, clavicle and knee pain (…let’s just say that everything hurt when I went in). And afterward? I had Zero pain, soreness, aching.

Nothing. Nada. Zip. Zilch. 

It took everything in me to keep from bawling my eyes out! There didn’t seem to be a dry eye in the room as all the physical therapists stopped what they were doing to watch me. Apparently, I was the first person to come in and ask to try the machine out, so they were mesmerized by the fact I was experiencing something so monumental --for the very first time--, in their clinic, on this machine that they were barely even used to using yet.


I managed to keep my emotions in check while there, but I’m not afraid to say once I was in the privacy of my own vehicle, I spent a good 10-15 minutes crying hysterically with joy. have spent my entire life dreaming of what it would feel like to go for a run. To be honest, I would have happily settled for knowing what it felt like to walk more than a few minutes without feeling excruciating lower back pain. But instead of “just” one wish, today I was granted two.

As I sat in my car reflecting on what had just taken place, all I could think of were two things:
  1. I am filled with so much gratitude, elation and awe I think I might burst.
  2. I would go through every bit of physical and emotional pain in life all over again if I knew it would bring me back to this moment in time 

Additionally, I couldn’t help but wonder

"What are all the doctors who have told me and my family that I would never be able to do anything with my life up to right now?"

 "How about the bullies and other various tormentors who colored the past nearly three decades of my existence?"

 But in the end, those final questions are so unimportant in the grand scheme of things. I just had the most spectacular, memorable day…and my soul is overflowing with gratitude and happiness! When all is said and done, I can do some very incredible things, and my life is more fulfilling than words could ever convey. In short…my life is a never ending gift, and I wouldn’t trade it for anything in the world.

I feel like the luckiest person on Earth.

Monday, July 7, 2014

survey says...

Guys, I gotta apologize and say a hearty I'm sorry for only really posting a teensy handful of blogs this month. I have been a little busy and uninspired but I am posting two in a row...so there. [Tangent: I even have some reviews and things that have been backburnered for later in July because I can't give them the attention they need.] For this reason, I am MAKING myself write this morning. What better way than to go all 2005 Myspace survey on you folks like I have done before! Enjoy. [Tangent: Also, I challenge all my blogger friends to repost when they are having a throwaway day.]

Currently:

Loving...

My mom has had a ton of work done on this house lately. She needed change. I have never been good with change especially things that hold memories considering I have lived in this house on and off since I was born. However, I am kind of in love with the new deck because it makes me feel like I live in a tree house or am at the beach everyday. Both are amazing options. It's been done for only a few days but I already am obsessed with it! 


Reading...

I wish I could say I was reading Infinite Jest or War and Peace, but I am not...I am mostly reading Entertainment Weekly and Buzzfeed. The last book I read was The Fault in Our Stars, which I plowed through in 2 days last month and I have started his other work An Abundance of Katherines so I guess I will claim that.


My bookshelves are spilling over with my "to read list" so I am determined that next year I am gonna do a 100 books a year challenge like Rae over at Say it Ain't So. I am nothing without goals and deadlines.



Watching...

Last week, we started the new HBO series The Leftovers. [Tangent: Since season one of Silicon Valley ended, I have a little HBO sized hole in my life. This came just in time.]


Not only is the show created by Damon Lindelof of Lost and Tom Perotta, who wrote Little Children and Election, but it has everything that fascinates me: cults, rapture...Justin Theroux's perfect eyebrows. After the first episode, I have absolutely no idea what is going on and I love it. [Tangent: I do know that Beyonce and Gary Busey are among those spirited away, so I guess that afterlife is filled with bootylicious crazynesss.]

Listening to...

I have been mostly listening to podcasts because they allow me to drown out background noise at work...when I am going to sleep...when I am driving...whenever.


My routine is pretty cut and dry: Who Charted? on the way to work [Tangent: I am obsessed with Howard Kremer and was thrilled to go see him perform at the High Watt earlier this summah. This old lady went to a 10:30 comedy show, so you know my love is real.] and Go Bayside on the way home. [Tangent: If have never listened before and you love Saved By the Bell...seriously...what is wrong with you??!??! They are deep into the Tori episodes, which means the pod cast series is coming to an end. Ugh. I am bummed. If only, April Richardson would next tackle BH 90210.]

Working on...

Planning a baby shower. My family from California are coming in town in a couple weeks so we can have a baby shower for my sister (and spend lots of time with my ridiculous niece.). We are all really excited! [Tangent: This is my fourth baby shower hostessing in the last year, so long story short- if you don't wanna be great with child, stay away from me. I am like a daggum Kokopelli. ] This is what the internet told my sister her son would look like.

How cute is my hypothetical nephew? (even with weird toddler five o'clock shadow).


Sunday, July 6, 2014

App Happy Chronicles- What Would I Say? (crazy stuff apparently)

The fourth came and went, and I completely failed to acknowledge my blogoversary! Four years! Thanks to those that supported me and made me feel like my then new hobby was worth while, and for those readers that have found me along the way. [Tangenet: I guess what I am trying to say is.
"Thanks for loving me Tangents and all."] 
To celebrate I decided to give you what you should come to expect from my site... random ballyhoo.

With all that sweetness out of the way, for someone that uses technology like I require it for breathing [Tangent: Which I kind of do...my lungs are shitty.], I have no ideas what makes the Internet and computers beep and boop. Daily I come across things online that make me wish I knew what an algorithm was [Tangent: or even how to spell algorithm without autocorrect intervention.] Alls I know is that the internet is getting WAY too intuitive, which probably means robots will soon take over the world. I've seen AI, I know what's up. I may not know the whys, but I do know that I am completely helpless in the presence of an Internet wormhole.[Tangent: You know when you're a kid and for some reason, against the better judgement of your parents,  your sibling spends his allowance money on a copy of The Enquirer at Kroger and for days you pour over the crazy stories of bat boys found in South America. It's strangely intriguing but completely lacking in substance or validity. You cannot look away. This is basically what happens to me every time a new bewildering site or app is presented to me. Kids don't know how good they've got it. They can indulge their curiosity without wasting their allowance or having the check out lady judge their purchases. ]

Because of this, I have to share what kept me rapt from about midnight- 2 AM the other night courtesy of my friend Laura, who is really good at enabling my bizarre pursuits. [Tangent: When I showed this site to Jamie today, he said it was years old and he had heard about it last year on Facebook, but oh well, I am going retro because it is new to me.]  The app and site  she introduced me to is What Would I Say?

how could i not be interested immediately?

 Basically, by allowing it access to your Facebook profile,  it Frankensteins together new statuses based on words and phrases you have used in past Facebook interactions. [Tangent: So it sounds like you if you were in the midst of a stroke.] Since it blew my ever-loving mind,  I knew it begged to be shared. [Tangent: ...not unlike the site that allows you to carry on a conversation with a chatbot and the site that translates websites into Ebonics.] They aren't always coherent, but when they work...they work! Here were some of the amazing statuses it came up with for me. Some are simple and to the point...others are troubling.







...and my two favorites...




Do it! NOW! Make sure you let me know what it comes up with. I can't wait.

Friday, June 27, 2014

let us pray...stay outta the zebra stripes

When I left work today, anxious to go home on "my friday", this is the situation that presented itself when I let down the ramp on my brown robot van.

*disclaimer: the woman did not drive onto my ramp....rather I let my ramp down to see if I had any chance in hell of wiggling my way into the vehicle. As you can see...I didn't!
[Tangent: I really hate to write blogs from an angry place, but damned if frustration is one of the key times the words pour out of me. Consider it my free therapy. Ya'll know from the Kia Soul debacle of 2011 that nothing can take me from perfectly calm to take-my-earrings-off-and-gullet-punch you crazy like people who don't park inside their parking spaces. I don't even have my ears pierced anymore, but I would re-pierce them myself if only to have the opportunity to remove my hoops and throw down.]

If you don't see the issue with this picture....let me explain: Everyone who has a handicapped placard has the right to park in a hadicapped space (even if they have a hidden/not obvious disability). However they do not have the right to park their vehicle in the zebra striped loading zone, [Tangent: YES. The stripes mean: STAY OUT, DOUCHEBAG!] which in my case is my only accessway to enter my vehicle. 


 Because I was outside of a hospital, I had no idea how long to expect this person to be inside. [Tangent: Were they just there for an appointment? Were they visiting a friend? Were they having surgery? WERE THEY IN A COMA!?!??!] I basically was left with little course of action except to:

A. Call security or the hospital police force to just sit there and tell me there is nothing they can do because the hospital is to vast to ask around or make an announcement and if they have a placard no law is being broken. [Tangent: Also the last time I did this, and tried to reign justice on a parking situation like this at work, when security came and we met the real owners, they turned out to be a man with no legs and his 80 year old wife on oxygen. I felt like an ass hat.]

B. Wait by my car for the owner of said vehicle to move his/her car like I am some knockoff Dog the Bounty Hunter. [Tangent: Here is my hastily photoshopped rendition of what I feel inside every time this happens...which is often.]

I opted to just run some errands in hopes that the car would have evaporated when I returned. When I got back, the car was still there all up in the stripes, but there was a lady with it rooting around in the trunk.  The woman looked frantic but I had no issue whatsoever asking if she could kindly move her car a few feet to the right. [Tangent: Oh, I neglected to mention that she had roughly 50 feet of concrete to her right that was completely available as it was the dead end of the lot.] Her response, "My parking brake is stuck on. Just pray for me."

Weird reply, but whatever, I felt slightly bad for this lady so I offered to go grab the security to help her or even let her use my AAA card to get her towed to a mechanic. [Tangent: My desperation to get home was real.] Her response, "No...no. I have AAA, too. This happens all the time. The only thing that works is prayer. Just pray for me."[Tangent: I mean I am definitely not the expert, but we are outside a hospital where lives are hanging in the balance; I will wager that if god is hanging in Hillsboro Village that his attention is elsewhere...or let's hope it is. ] In a very nice conversational tone, I took that opportunity to educate her about loading zones and what stripes mean and the importance of staying in your space when parking. This was all news to her, which was baffling given that she stated that she was no spring chicken. 

Clearly I was getting frustrated with this woman, but I usually try to at least act tolerant of people with very focused religious views. She milled around her car looking harried and intermittently making phone calls and trying to get her car to go in reverse. Nothing was working. I offered again to go get someone, her response, "Are you a Christian? Will you pray with me right now?"

Instead of saying, "no...I mean I am kinda sorta a cafeteria style Catholic at best" which would result in a very awkward long-winded speech and me going home with a purseful of pamphlets about my hell-bound soul, I opted to just bite it and go along with the woman. This led to a two minute prayer in the middle of the parking garage. Awesome. What made it slightly more bizarre was her rightfully doubting my prayer strength afterwards. "I hope that that was a mutual prayer. When two people pray together and it is mutual- it can ward off 6000 demons."  [Tangent: Ummm...that seems like fuzzy math, but I'm not up on my scriptures, so it could be straight from JC's mouth.] Ugh, my frustration was building and this was the worst time possible to prophetize to me.

Apparently, she didn't trust the strength of my  beliefs because she then got into her motor vehicle to call her cousin, who she deemed to be a true believer. [Tangent: She told me her cousin's prayers always have the power...which makes me wonder why she didn't call her immediately if she has a direct line to Jesus.] After a few more tries with starting her car, it finally popped in reverse!

Seriously, what just happened? My mind was still boggled when I called my best friend to tell her what had just transpired. We theorized that I must be some part of the TBN equivalent of John Quinones or Ashton Kutcher....like had I not driven away, Kirk Cameron would have popped out of her trunk and told me about the power of prayer. [Tangent: 1988 Kimmie would have been thrilled to meet Kirk Cameron....2014 Kimmie- not so much.] I didn't stick around to find the hidden camera.

Monday, June 23, 2014

ARE Camp 2014

Hello strangers! I am trying to get back to life...back to reality after a great week spent with some of my favorite people and with minimal cell phone service [Tangent: A blessing in disguise. I now recommend the occasional falling off the face of the earth technology-wise to everyone. It's cleansing.] at the summer camp held by the Alliance for Recreational Empowerment or ARE. [Tangent: I have written about this second family of mine for several years and their mission to provide support and encouragement for youth with disabilities and their families. You can even find their link in the tab section on the top of this blog. ] This year was great because I got to stay all week and see so many smiling faces that have come to be part of my extended family. The days were spent on the water, sweating profusely, rediscovering my love of rinsing brushes during arts and crafts cleanup, talking about boys with my "little girls" who are now little ladies heading off to college, acting in a murder mystery game wearing a fake moustache, talking openly about bowel movements and most importantly laughing hysterically. I could bore you with the details...but I think I will just give you a little picture show.












Although I apologize for being absent from the blog....can you blame me? I mean look at all these pretty people I got to spend 7 whole days with!

Sunday, June 8, 2014

return to amish- at least my nearest equivalent

The other day, I got pulled into a Return to Amish mini-marathon on TLC. I don't know why I am so fascinated by this garbage, but I am. It's likely 86% postured for the cameras, but no matter what- when it's on, I am oblivious that any other programming exists. [Tangent: The same can be said for the Duggars. Watching them is like watching martians. I don't judge their lifestyle (too much)- I just know it is beyond my realm of understanding...I like to front hug way too much. ] 


 The whole concept of being Amish seems like my worst nightmare. Religiously strict. ugh. Plain wardrobe. No thanks. Eating meat out of a jar. Blergh. But probably the most unappealing is the whole no modern technology thing. That would definitely be my ass kicker. If I am at home, you bet your sweet tail that I am consuming every type of outside worldly media possible. [Tangent: Example, I am presently using the Internet, 2 inches from my iPhone and listening to music and an episode of 30 Rock simultaneously. Over-stimulation is my favorite state of being.] 


Last week,  I got a glimpse into what that wire-free life is like [minus the bonnets and name ending in -iah.] ...and I was NOT into it. For some mysterious reason (maybe storm related), our AT&T bit the dust Thursday morning, and we couldn't get a internet or cable until a tech came...which was 2 whole days later. Two days that I had off and was exhausted and wanted nothing more than to watch TV. Oh yeah, lets throw into the mix that Orange is the New Black was coming back and binge watching that seemed utterly heavenly. [Tangent: Not to mention that #OITNB was trending everywhere and when I would log onto Facebook on my phone, that is all anyone was talking about. I know...I know. First world problems, right? I don't care. It sucked.] 

Then I thought that maybe I should delve into my DVD collection and find something to watch because the silence was deafening and I had already been way too productive. [Tangent: Despite being a huge movie fan, I have never been a big DVD owner and buyer. The only ones I have were given to me or were borrowed at some point and never returned. I never resent this choice to live minimally in that capacty more than when the cable goes out. For this reason, my collection is a haphazard mix at best. ] I went through my tiny stack of 10 DVDs and settled on My So-Called Life. No one could understand my shallow angst at this moment more than Angela Chase. If there is one thing that could take my mind off being mad at AT&T, it's Jared Leto's pre-guyliner, pre ombre hair pretty self. 


I was pumped! This was going to be a great way to spend a Thursday night/Friday afternoon...until I realized that my DVD player had totally crapped out on me. Nooooooooooooooooooooooooo!!!!

So I guess what I am saying is I may have cried and spent the evening revamping my town on Simpson's Tapped Out and using the constantly buffering 3G, watching a Netflix documentary on my cell phone. [Tangent: It was about how all men are innately pedophiles. It was weird and led me barraging my boyfriend with lots of questions. I don't recommend it unless you wanna question every man in your life.]  I am hopeless.* Gotta go watch Orange is the New Black. Gotta catch up. Don't spoil it for me.

*I am sure this blog will be sited in medical journals and mommy blogs to come as to the damage done by excessive early childhood screen time. Oh well.

Wednesday, June 4, 2014

It's like this and like that and like this...and uhhh...

Hey guys...remember me. I used to be consistent. Yeah, that's me. Just call me Kimmie Come Lately.  Let me be honest, I just kinda needed a break to get my bearings. Creative "oh my god! This needs to be blogged about" genius has struck a couple times, and then immediately even the idea of opening up the laptop seemed overwhelming, so I didn't. Instead I just had some me time: I got some much needed sleep, or spent time with my family or crossed something off my miles long "needed to be done list" or actually soaked in the fact that I now have a job that I love. [Tangent: It is so beyond bizarre to me to feel completely confident at a position that I just entered into and to feel needed and not just tolerated. There is no age limit for the transformative power of getting a gold star.]

As part of my job, I write and do social media, so I am getting used to the fact that I can now do that as work and play. It's all about compartimentalization [Tangent: I realize that isn't even a word, but, Mr. Webster, it should be.], and getting used to doing what I love all the time. Trust me, I am getting the hang of it, and will not leave you hanging anymore. Also, even though I was barely present on this URL in May 2014, I got my all time highest readership [Tangent: As in...cough...ahem...like DOUBLE what I usually get in a month. I hit 500 likes on Facebook. And I acquired some new fans on google friend connect and Bloglovin.]  I guess I should go on a mental vacation more often. Absence makes the heart grow fonder is not just something stitched on a pillow at Kirkland's, guys. It's reality.

I was also doing a shit ton of other writing that I had previous volunteered myself for before the sloth took over my soul...so here is some reading to catch you up! Here's what I have been doing instead of hanging out with you guys. I promise not to be so much of a stranger.

  • For the lovely and well spoken Mary Evelyn at What Do You Do, Dear? I wrote this blog about how people with disabilities are allowed to be total assholes on occasion [Tangent: This should not be news to my readers, friends and family...at all.] Apparently, this post resonated with someone, because it was reblogged over at Kids Included Together, a site dedicated to inclusion for those with disabilities, and a place that I may be doing some work with in the future.
  • Then for Alicia, the Spashionista, I wrote this post about the benefits of being on wheels and wearing shoes...real ground breaking Pulitzer worthy subject matters. It is ripe with pictures of my feet for you weirdos out there. 
  • Just so you don't think I have completely jumped ship to ONLY writing about disability this and disability that, yesterday, my post about The Lonely Island Panel with Vince Vaughn was published on Nerds and Nomsense.

So yeah, that's what I have been doing. I promise I will be around more. What have you guys been up to?

Wednesday, May 21, 2014

circa 2006 Vince Vaughn dreams do come true

From about 2005-present (but dwindling slightly after 2009), I've had a ginormous love of all things Vince Vaughn. I know his last few comedies have been kinda meh, but remember the good ol days. Remember his bumbling monologues in Wedding Crashers and Swingers. That tall drink of water danced into my heart and stayed there for years. Old School, A Cool, Dry Place and even the terrible Psycho reboot. I was all over it. I may have even written this VERY embarrassing ode to him in 2005 on my embarrassingly terrible college blog when I had to choose to see Elton John over going to his last Wild West Comedy Tour. [Tangent: NO ONE read that blog, and now I can see why. I really don't know why I had friends much less any followers. Oh well, ya live...ya learn!] Then there was the photoshopping...


yeah...I know. I am not even ashamed...that is some good skin tone blending on the neck.
Basically, what I am saying, is that it is never too late for second chances, because Sunday night, I was legally within shouting distance of Mr. Vaughn. As part of his Wild West Comedy tour, VV did a Q & A with Andy Samberg and the Lonely Island at Nashville's Belcourt Theater, so of course because I love all things involved- I was there and in the very front! [Tangent: OK, let's be honest...love and enthusiasm will only get you so far...the reason I got to be in the first 2 rows was all thanks to the wheelchair. It definitely has it's perks.] I am planning on writing about the event for my side gig over at Nerds and Nomsense later this week, so I will not go into too many specifics other than it was awesome and hilarious, but I will let you know that me and my 20's love shared a moment. We made eye contact 4-4.5 times...although when this photo was taken he may have been calling out the woman in front of me for taking video. [Tangent: I prefer to speculate that he was just bewitched by me.]

yep! CAUGHT IN THE ACT!
Seriously, all you have to do is gaze upon that 12 foot fella to know that our dwindling love is now reactivated. I would climb him like a sycamore tree! Also, the internet has taught me he knows a thing or two about being differently abled. According to this site dedicated to celebrity deformities (yep...that's a thing!), Mr. Vaughn is missing a fingertip.


Oh, did I mention this is how I spent me and Jamie's 3rd anniversary? Jamie really is the best boyfriend ever if for no other reason telling me afterward, "I was excited that you were on the aisle, because I thought if Vince went into the audience, then he might brush against you." Do I have the best dude or what?

Friday, May 16, 2014

The Cosmetic Market fiesta means a giveaway for you!

Unrelated Preamble: Thanks to all those who wrote such sweet things after my last post. The love and support is palpable. This week, I'm taking baby steps into a normal non emotionally trainwrecky world and playing post catch-up. 

I'm not a big deal blogger at all...but if people want to believe I have some shred of influence on anyone...I will allow them that delusion...especially if it means I get to be invited to some event I'm not cool enough to be at.

That's basically what happened yesterday when I was invited to a style party at the Green Hills location of The Cosmetic Market. The invite mentioned margaritas, Mexican food and free beauty products and demos so of course I was like, "yep, where do I sign?" Not to mention I got to spend time with some of my favorite Nashville blogging friends Trisha (of Let's Go Ride a Bike), Lauren (of Lladybird), Kaelah (of The Clueless Girl's Guide) and Jen (of Librarian Tells All). Without allies, I probably would have been overwhelmed.

Because I suck at being a blogger, and took zero photos [Tangent: I'm the worst! I really should have taken pictures if for no other reason than to immortalize the fact that I wore red lipstick and it looked good (according to makeup experts who don't subscribe to my assertion that lipsmackers = lipstick.) and it wasn't all smeared on my face and teeth. Capturing that rarity on film would be like catching lightning in a bottle.} I pretty much was like, "I need to write about this event but I have zero to show for it" (unless of course, I did some rudimentary photoshopping to recreate the evening or just posted stock photos of eye shadows.)  I thought I needed to do something to give a special shoutout to The Cosmetics Market for sponsoring such a cool outreach opportunity and sending me home with a pretty hefty swag bag. While dumping out my goodies and rifling through them like a fat kid with their Halloween candy, I decided it was an embarrassment of riches.


My shelves already runneth over due to my impulse purchasing power, and I only have so much skin and hair! Some of these products were just begging to be shared (Although I did keep some for myself. I am not that generous!) ...Eureka! A giveaway! [Tangent: Also, men that read this blog, more than half of these products are fairly unisex...like just because you are a dude, doesn't mean you can't have pretty skin and hair, right?] There's all sorts of good stuff in there from brands like Kevin Murphy, Ahava, Bumble and Bumble and many others. You'll be getting a nice assortment.

It's simple to enter below and if you already like my facebook page, you are already partially there!

a Rafflecopter giveaway
  
 (Disclosure: The Cosmetics Market isn't directly sponsoring this giveaway, but all the products included can be found there and they indirectly made it possible by bestowing upon me all the goodies!)

Wednesday, May 14, 2014

chris will be missed

In the last couple weeks, I have opened and closed my laptop about a couple dozen times. Almost each time, I open blogger, hit the "new post" buton...type a couple sentences. Erase a couple sentences.  X out of it. Shut laptop. Lather. Rinse. Repeat.  I've been so hesitant with posting anything because nothing seems to be adequate, but it's the elephant in the room that I have been shuffling around for the last 2 weeks. [Tangent: I don't handle serious things well. They make me uncomfortable when I face them head on. It's far easier for me to write about Toddler and Tiaras or something trivial and unimportant. Unfortunately, my life is filled with serious things. and I wish I could say that makes it easier. It doesn't.]

Something similar  happens every May, and I have deemed it MIA MAY.  In 2011, I fell in love in May and couldn't be bothered with anything. In 2012, I got my gallbladder out and was Internetless for the entire 30 days. I wish my absence so far this may could be put in such easy to explain and less emotionally taxing terms, but it can't. On May 1st, I lost my oldest brother.

On that Thursday afternoon, he died suddenly and of natural causes from some as yet unknown thing, which is incredibly frustrating and still makes it hard to completely accept as real.  People ask me on a daily basis how I am dealing with all of it, and to be honest, it still hasn't entirely been absorbed.  My mind is not lithe enough to wrap around it. [Tangent: I've never lost someone close where it was not a planned upon death or at least somewhat expected death. We knew my dad had only a few days towards the end so it made each moment more memorable to me. I got to tell my father several times goodbye and remind him how much I loved him. I think the last thing I told Chris was something about not knowing where he could find a good deal on a tablet PC. Although he knew I loved him, it's not exactly the goodbye you'd hope to have.]

Healthwise, Chris did not take the greatest care of himself, he had some ups and downs personally and battled many different things, but his early departure from this world was not expected. Aside from his frequent sojourns to other states I have never known life without Chris.  Part of me just feels that he's out of state for a few months or maybe camping with his friends, which he did just about every weekend.

that's me and my bro.
He was 7 when I was born and was always my big brother....always will be. He gave me my middle name and my extensive knowledge of 80s metal. [Tangent: Why else would a 6 year old know all of the Guns N Roses Use our Illusion?] When we were little, we used to do this thing, which we thought was hilarious and fun, because in a pre-internet world, it was, called the Jones sandwich. The four of us would dogpile oldest to youngest and declare ourselves pieces of the sandwich. Chris was the base, the support, the bread on the bottom so the sandwich could function. He probably wasn't thrilled about it, as shown above, but he did his brotherly duty and obliged us. He was always a good sport.


He had an obscenely HUGE heart that wanted to adopt every animal he saw and every person that for some reason was getting the shaft by society. Most people who spent more than 5 minutes with him could feel his good aura. His friends were his extended family. It's a very tragic thing that there are people out there he will never meet who will never again recognize his potential for amazing. At his visitation, it was overwhelming to see all of his friends from different facets of his life convene to brag on his many awesome qualities. I wished he could be there because he would have been in the thick of it.  He dreamed of hiking the Appalachian Trail. and was so excited that he was gonna have a nephew in the fall [Tangent: Not mine. My sister is pregnant, which I have been trying to keep a secret until recently.]  His timer ran out before these things could happen. It all is just hard to swallow. Although I struggle with the abstracts of an afterlife, I know he was glad to see my dad again, and dad was glad to have his first baby there with him. Their hypothetical reunion gives me chills. 


Thanks to my friends and the blogging community for being so amazing and supportive during all of this. I love you all. Thanks for giving me some time to write this, even though it doesn't even scratch the surface of whats going on in my mind.  I promise to return to normalcy in the next few days. I have learned a lot about the grieving process in the last couple years, and sometimes the best medicine (at least in my case) is getting back to a normal routine.

Tuesday, April 29, 2014

getting oriented.

I'm officially sitting around the house wearing pajama pants from the waist down and a navy day dress from the waist up so it either means that I am trying some weird (but clearly not very forward thinking) fashion or I started working today. [Tangent: This is pretty much the norm when I work.  When I come home, it's pants off/stretchy pants on time..but out of laziness, from the waist up - business casual as usual. TMI? Probably...but you should come to expect that from my blog! If this was solely a fashion blog, I would probably have page after page of me rocking a look that is simultaneously brought to you by Ann Taylor and Gillian O'Malley for Target. ] Anyway, it seems like it has been forever since I have gotten up early and gone into work and I am completely inept at it. How can a person forget how to function before 8 AM? I guess I can.

c/o Natalie Dee

So far we have just had orientation...and it was with about 50 other departments so everything is vague and general and ends with shots and TB skin tests and bloodwork. [Tangent: That's how you know a job is legit, when you leave a vial of blood behind of day one! :)] I watched a lot of presentations- some valid to my department like code of ethics...some not, like lifting people...but I did get to hear a song about hand washing to the tune of "Call Me Maybe", which is fun for everyone involved [Tangent: Now it is the second best instructional hand washing song I have heard in my life.]



Even with all this activity, a highlight of my day was sitting in my car and playing on my phone during my lunch break, not because I am completely antisocial but rather because I chose to park by some nearby dorms. [Tangent: They were closer, and despite it being marked as "reserved", there were handicapped spaces...so that is practically an invitation, right? ] This landscape made for some stellar people watching. College is such a foreign thing to me at this point in my life, so I felt like I was getting to audit their move-out day.  I seemed to be suddenly aware of every gray hair on my scalp, hearing 19-year-olds flirt as they say goodbye to each other and make promises to visit....oh yeah and seeing girls do the dreaded walk of shame. [Tangent: Backless dress, strappy heels in hand...messy bun. Check. Check. Check.] THEY STILL DO THAT! It was highly entertaining to observe and made me realize I graduated college 9 years ago!! WHAT!?!?!? I guess it's high time I put that degree in motion.

I still won't know the daily ins and outs of my new job until next week, but I am nervously excited to learn more. Being excited about work is a welcome feeling!

Wednesday, April 23, 2014

new part-time job for the full-time gypsy

As most of you know for the last year or so, I have been a gypsy....not in like a Romany bedazzled neon bridal wear kinda way, more in like a aimless, careerless, working here and there kinda way. [Tangent: Not because it has been bohemian or sexy or so anti-establishment of me...more because it is just what happened. If you know me at all, you know I love stability, so this wasn't a choice thing.] Although not being gainfully employed is at times frustrating, it's also been sort of awesome. The good has slightly outweighed that demoralizing look of condescension received when you tell people "this and that" in answer to the question, "So, what do you do?" [Tangent: I have learned better than to say, "nothing" and now just say "writer" because that's true, right?]

not this kind of TLC gypsy...I don't have the boobs for that

 After working for jobs that I didn't really love...or even like...for years [Tangent: No offense to these places, but cubicle land is not for me, and not seeing results or growth is hard on a person..], I came to be completely self aware. I was getting lazy. If I wasn't passionate about what I was doing, I became a total slacker and my work was a reflection.  [Tangent: Growing up, I was always a crazy over-achiever and took pride in what I put out there so the fact that I was basically sleepwalking through my days was a bummer.] I see it as a blessing that they downsized 3 days before my father passed away because I got to spend time with my dad and it really knocked home the fact that you should not just tolerate your life...but enjoy it.

 In my time off, I learned/acquired some things:

  1. Everything becomes a business venture...I sold stuff on Ebay for 6 months and existed on my wages...I monetized my blog...and cleaned out my closet on Poshmark.
  2. You will get pitched every conceivable pyramid scheme. Seriously, I don't have enough fingers to count the number of times I heard, "I have got an exciting opportunity for you, all you need is $300 and a dream!" Ugh. [Tangent: It wreaked of this.] 
  3. You have time to get serious about your hobbies. I produced several paintings and pretty much tripled my blog readership because I have time and energy to devote to things I really liked. 
  4.  I have been super healthy. Probably healthier than I have been in years because I had the time to do things that most people do naturally but I forget to do when I get busy...like breathe, sleep and hydrate. Over the years, but not for lack of trying, I have discovered full-time work is too hard on my body. 
  5. I now own 2 drawers of stretchy waist lounge pants. 
But GOOD NEWS: this old t-shirt, braless lifestyle is getting an update because next week I start a new part-time job...and at that a new highly exciting part-time job that seems custom made for me and one that I am sincerely excited about! I guess good things come to those who wait. [Tangent: This job is one where I will get to integrate three things I know a lot about: disabilities, social media and people. I'm an "I have an idea" kinda gal and they told me in the interview process that they wanted my ideas. This is a welcome change and one I will be proud to promote and talk positively about. I have always envied people who enjoyed and didn't just begrudgingly accept their jobs.] I actually got the call a week and a half ago, but have been hesitant to post the news, for fear that something would fall through. I didn't wanna jinx it, but now that I know that I have been fingerprinted and enrolled in orientation...I think I am in the clear.  This is the job that upbeat 22-year-old college graduate Kimmie wanted...but the one that 31-year-old jaded Kimmie thought wasn't available anymore.

The idea of a steady paycheck that I have earned is exciting and so is the idea of having a set schedule and missing The View 3 days a week. Even though my year off has bumped me up a pants size, I am so excited to have a reason to pull my business casual out of the back of my closet....at least on a part time basis. I can still have pajama day at home here and there.
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