My Birthday!!

If you have a December birthday, even as early as the 4th, it becomes a Birthday/Christmas memory. But I don't mind. I'm not the greatest gift receiver and in the past Christmas has been a great way to redirect the generosity of my friends. I always host my own party (I have good reasoning for everyone to do the same...but, I'm still the only believer). I loved using my birthday as an excuse to gather my friends for a casual dinner at my home and ask them to bring the cash they might have spent on a dinner or gift to spend the evening playing elf. I would identify a family or individuals with needs and we would break into groups to purchase as much as we could then bring it back to the house for a wrapping party. I loved those years!

Today was nothing like those former birthdays. It was a whirlwind of activity and friends and I can't believe how fast it flew. I'd love to return to my old tradition soon, but today was a great day of celebration. My 30-something birthday's have had a "blech" feel to them (my own bad attitude), and I used to mourn all of my missed opportunities and failed efforts. But this year is different. This year I feel lucky to be alive. I feel fortunate to be in a situation where I can hope for a better future. I am anxious to have many more birthdays...so it was fun to celebrate and be celebrated!

Christmas Cookies

I may have been relegated to assistant when it came to decorating, but after a few years of sitting at the counter unwrapping mini Reeses Peanut Butter Cups, I worked my way up to some solo kitchen assignments. Two of my favorites made an appearance in my own kitchen tonight and I smiled through the mixing, baking, and clean-up!

Almond Cookies (Thanks Christy!)

Whip Cream Cookies (Thanks Kristy!)

"Decorating"

I have never really decorated for the holiday. I might be decent at it, but I never really had the opportunity. My mom has great style and she knew exactly what she wanted our home to look like. However, I was a dutiful assistant. I checked and untangled lights, rehooked ornaments, held stuff. This role is so ingrained in me that when my roommate pulled out Christmas decorations, I only found myself comfortable in the assistant role. Doesn't mean I enjoy the finished product any less.

Laying Under the Tree

I made a new Christmas memory tonight with my 6 month old nephew Miles. We spent the evening chatting and laying under the Christmas tree staring up at the lights. It was pretty awesome!




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I am Grateful for: My New Ukulele

I received an early birthday present and I'm in love. I'm hoping that years of playing other instruments will translate into some smooth new tunes and that I'll soon be able to provide some sweet accompaniment to every Christmas Carol!

I am Grateful for: Silver Linings

I've been fortunate in my life to always have at least some good in every situation. I'm glad that I've learned to identify the silver linings and minimize focus on the dark clouds.

I am Grateful for: Anticipation

Tis the season, right? Birthday in a week and Christmas in a month and the tracking of deliveries...and maybe that pristine heart?! I love the excitement.

I am Grateful for: Money

The past two years without an income and with a terminal illness has not be a financial breeze. However, somehow, I've always had what I need when it really matters. I am grateful for people who have been more than generous in helping me to do what I can to provide for myself. I am grateful that I was counseled to be financially conservative and that even though things are tight, I am not suffering or being denied the things that I need. If I were to win the Powerball Lottery for aprox. $500M, I would continue to be grateful :)

I am Grateful for: Kitchen Skills

I'm pretty good in the kitchen. With or without a recipe. With or without a menu. I really surprise myself sometimes. Thanks mom! Because of what I learned as your daughter, I can whip up an amazing meal for myself and/or friends with no notice at all. It's like magic!

I am Grateful for: Inspiration

This video has been all over my Facebook feed and I am feeling motivated to do more. My doctors have outlined pretty strict limitations...but maybe I can push myself a little more:

I am Grateful for: Friends & Food

There's something awesome when you combine good friends and tasty food. It just always makes for a great night. Although, if I'm being honest, I would totally enjoy my friends even without the food.

I am Grateful for: Imagination

Right this minute I am specifically grateful for my nephew Owen's imagination. The kid is such a character and he always keeps me laughing. He is really big into superheros these days and today he decided to become Hawkeye and shoot a bow and arrow. This video is a very calm version of what he had been doing all afternoon. I love the detail he puts into selecting an arrow from his quiver:

I am also grateful for my own imagination. Man does that keep me entertained! For hours!!

I am Grateful for: Belonging

It's great to have family that love me unconditionally and provide a place where I am welcome and belong no matter how much time has passed. My Uncle Roger and Aunt Janet hosted a fantastic Thanksgiving and I love knowing that I always fit in at their home.

I am Grateful for: Tradition

I have no food assignment for Thanksgiving dinner this year...but I couldn't not make Grandma Effie's Green Jello Salad to take along tomorrow. It's a recipe passed down on my mom's side of the family, and a concoction I've never seen anywhere else, but it's a must have for me during holiday meals...the nostalgia for it is powerful!
My brother Brett and I might be the only ones brave enough to eat it tomorrow, but I don't mind leftovers...I'll eat it for breakfast, lunch, and dinner!
(Besides, how cool is it that I have a great grandma named Effie?!)

I am Grateful for: Curiosity

I am glad that I have a curious personality and that I feel comfortable asking questions when I want to know more or understand more fully. Curiosity has helped to keep me preoccupied and has given me outrageous opportunities!


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Craig Update

Thanks for calls and texts expressing concern for my Dad and our family. I didn't mean to raise the alarms...
He was sent home today with recovery instructions, but he's in surprisingly good condition, considering the circumstances, and I think we are all feel very lucky.


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I am Grateful for: Tender Mercies

Tonight was awful!

Everything is calm now, but my dad was in a fr-reaky accident this afternoon and is now recovering in the hospital overnight. After a mysterious crash, 30 minutes into a bike ride, he spent the next 2 hours weaving his bloody way home. None of this information came from him, it came from a mapping app he uses during his rides. After the last update from my mom, he still had no recollection of his afternoon or the passcode to the garage.

After speaking with my mom shortly after he arrived home, and hearing first hand how absent he suddenly was, I was pretty ticked at God and the universe for giving my family one more stupid hurdle. Seriously, can a girl and her dad just get a break?! But it didn't take too long before I recognized how lucky we were that he made it home at all. And the CT scan came back clean and clear from any bleeds or tumors, new or old, so that's a miracle too. And I'm feeling plenty wound up, but somewhat relieved that while he may never remember the accident, he should recover fairly well.

I am Grateful for: Healthcare Workers

Seriously. I don't know how they do it! The nurses on my floor this weekend have been so kind and patient...especially with my crazy neighbors! I think I'm a pretty easy patient, but these old people on the cardiac floor are some tough characters, and the nurses just keep helping them.

There is a guy down the hall that is doing his very best work to cough up all of his internal organs and gagging on them the whole way. And the lady right next door just LOVES her call button and is giving the CNA a run for her money this morning.

I would probably earn a criminal charge on my first day, but the nurses just keep coming back for more. I feel grateful that there are individuals, who are much better people than myself, who are willing to do this hard work!

I am Grateful for: Ambien

I am Grateful for: Normal Moments

I really do appreciate the thoughts and prayers and tender moments that so many have shared with me as I've fought through the past 18 months. But it's the moments when things seem "perfectly normal" that bring the most hope.
It's an odd scenario for me to be calling anything normal. Hospital room, Friday night, three single friends drop by to help me kill some time. And we talked and laughed like everything was so normal.
Here's to hoping the normal moments keep coming!

I am Grateful for: Clean Laundry

It starts by looking a little something like this:



But when every stitch is washed, folded, and put away...down to the linens and bathroom floor mats....yeah, those are some of my most favorite moments in life!




When I was in student housing, it wasn't unusual to have to do wash at a laundry mat and it was such a pain. Now I have what I need right in the house and I think that is a blessing worth celebrating!


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I am Grateful for: Optimism

Stuff doesn't go my way very often. Yet, I still manage to be surprised every time it happens. I have an active imagination, and while capable of constructing the worst possible scenarios, I tend to default to the more favorable ones.
I try to fool myself into believing that I have low expectations and consequently, I'm rarely disappointed but (shhh...this is a secret), I really do hope for the best. Pretty much all the time. I like it that way.

I am Grateful for: Warmth

It's cold in Utah and I've responded with flannel pajama pants, a hoody with the hood in use, an electric blanket, my favorite old quilt, and my favorite new quilt (lazy, point-of-view picture above (THANKS MOM!💗)).

I remember making 20 quilts for "Access Housing" as a service project when I was in High School. I imagined what it might be like for someone in poverty to be cold...I don't think I really understood. And so far in my life, I've never really known the bitterness of enduring cold, I most likely will never have to.

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I am Grateful for: Godiva Chocolate Cheesecake

I am Grateful for: Peaceful Moments

I'm curled up in bed with a cup of peppermint tea, and a public library copy of The Great Gatsby, and I am feeling quite content!

I am Grateful for: BYU Football MEMORIES

For YEARS I was the perfect BYU football fan. Ran, sleet or shine I was there before kick-off and stayed way past the final whistle. Tonight while Cougar fans drive through blizzard-ish conditions to attend an 8:15 p.m. kickoff, I'm glad that those are awesome memories and not my reality!! (Hey bros, thanks for graduating!!)

I am Grateful for: Independence

I woke up feeling sorry for myself...definitely my least favorite way to wake up. So I threw on some comfy clothes, pulled my hair into a ponytail, and hit the local movie theater for a double feature.
I feel lucky that I feel comfortable doing just about anything on my own, for me it helps minimize the number of times I feel like a victim of loneliness.

I am Grateful for: Kid Stories

That is a picture of my 5 year old nephew hocking Gatorade to High School students at $8.00/bottle. He needed to earn $8.00 to buy some toys he wanted, and he figured inflated prices would mean he only had to sell 1 bottle. He's a genius..right?! (I think he had to negotiate down to move product, but I'm looking forward to writing his biography some day and sharing this story.)

Stories from friends and family about their kids are some of my favorites to hear and repeat. Nothing is funnier or more inspiring than life from their perspective.

I am Grateful for: Modern Medicine

When I saw my first cardiologist, 24 years ago, my condition was not named or even known. Since then, not only has non-compaction been identified, but hundreds of treatments and medications have been developed to assist heart failure patients. The greatest miracle is the advancement of human heart transplant. Something that wasn't really an option for me not long ago is now the thing that gives me hope...and maybe even a shot at SCUBA someday soon!!

I Wish This Was a Joke...

Watching the election coverage has put me into A-Fib...no joke. Or maybe my loser heart has just gone into A-Fib on its own, like it is wont to do. Either way, I hope it's worked itself out before my Right Heart Cath in the morning. Fingers crossed!!

I am Grateful for: Empathy

em·pa·thy

   [em-puh-thee]

noun

1.

the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.

I am so glad that I have been blessed with empathy. At times when I don't get my way, or I am wrong, I am usually able to eventually see another side, and find peace and hope.

I am Grateful for: External Motivators

Although I am a non-breeder, I have somehow acquired a few mom-like characteristics. One of which, is being unable to do something for myself if I can't see that it also benefits others. Often it takes an outside push to get me to do something that I should have done a long time ago. Today that thing was getting a new windshield so that I can pass Safety and Emissions...my new windshield is AMAZING! Thank you government regulations, for being the motivation I needed, to do something I should have done, long ago!

I am Grateful for: The Faith of Others

Ultimately, it always comes down to my own faith, but I am often strengthened by the faith that others express. I am so fortunate to be surrounded by strong, inspirational people.

I am Grateful for: The Changing Seasons

Occasionally I fantasize about a life on the beach. Tan skin and sun-bleached hair...I really like that version of myself. But the truth is, I would really miss the change in seasons. Utah has been incredibly generous this year and rather than rush through the typically short spring and fall, we have been gifted amazing weather and scenery. There are things (fashion, temps, activities) that I love about each and I would probably be sad to give it up. Probably.

I am Grateful for: Being American

Like many Americans, I am in the greatest slump of my life...and like many Americans, I still have it goo-ood!

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I am Grateful for: Good Books

This past year I have read more than maybe all previous 36 years combined. I feel fortunate to have a curiosity for things that can be found in books. I love that I have become reacquainted with the sights and smells of the public library. I am lucky to have friends who also like to read and discuss new ideas. Good books (and a few bad) have been a constant companion through this past year.

November - Gratitude 2012

Last year I accepted a challenge to take a moment, every day in November, to identify something for which I was grateful. I didn't know on November 1, that I was going to get some of the hardest personal news of my life. I never would have guessed that the challenge to be grateful would be the thing to pull me out of a very ugly funk...
My current funk isn't so ugly, but it is a funk, and I'm ready to shake it.

Instagram October Photo Challenge - Oct 10

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How to turn 90 minutes and $60 into 840 minutes and $430

It's really very simple. Let your well-meaning, ex-mechanic boyfriend offer to replace your timing belt for you.

YouTube...Pass it on!

Apologies to my non-mormon friends for getting all "inside joke" here...but this made my day awesome:

Oh Cougs!

Another amazing finish to a crazy rivalry game...shouldn't have bet $1.00 to the Ute equipment manger,eh?

Waiting: Day 100

It wasn't a conscience change, but it looks like (in an effort to nudge Karma?), I've moved my hospital bag nearer to the door. Surely that's all that was needed to get this show on the road, right?




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Gentle Giant

I have vivid and awesome memories of my childhood...and those memories cloud my real-time perception. In my memories, my brother John is scrappy and little. When I think of him today, I see a 7 year old kid with curly hair and skinny arms, so when I see photographs like this:

well, the hair is still curly.

Comic Relief!

Oh please! Please can this group be booked as guest performers on next season's So You Think You Can Dance?! And please, please, please will they do a version of Beyonce's "Put a Ring On It"?!?!

Waiting: Day 74

When I was first told that I needed a heart transplant, I really struggled with the idea that for me to live, someone else would need to die. I think it's a common worry for transplant recipients. Most heart transplants come from younger donors who have been involved in an unexpected accident. The body is young and strong, but the neurological damage cannot be repaired.

I have spent a lot of my thoughts with my future donor. I have offered many prayers in their behalf. Somewhere out there, in a 1,000 mile radius around Salt Lake City, some generous person is living the last days of their life. That person has no idea that time is short. My hope is that they have plenty of opportunity to say "I love you", I pray that there is little unfinished business, I need their loved ones to feel peace.

I feel a responsibility to live a life worthy of such a generous gift and I intend to bring honor to my donor and everyone they have loved.

Waiting: Day 55

I am so relieved that the pager has not beeped yet. I'm still not ready. I finally put some real consideration and effort into packing my bag for the hospital, but as of today, I will be uninsured September 1 and I need more time to come up with a solution.

I have followed every bit of counsel I have been given regarding application to additional programs, but a dying girl with mountains of integrity still struggles to get approval for government assistance. I have an attorney who is confident in my case, but I have been told that best case scenario will be a 4 month wait for answers...and 4 months are way past September 1.

The past week has been a chance for me to resurrect the tough professional and play advocate for myself, but it's exhausting! Between naps, I'm adopting an "abundance" perspective and looking forward to pieces falling in place over the next few weeks. Things will totally fall into place...right?

Waiting: Day 39

I will come right out and admit it, I have been intentionally avoiding the blog. I felt crazy pressure to be accountable to the expectations of others (expectations both real, and imagined) and I wasn't feeling up to the task. The first 30 days were tough. I felt hopeless and helpless. Most of my thoughts and words were downers. I didn't know how I was feeling and the thought of answering that question for someone else seemed an impossible task. But time brings clarity, and for me it brought hope as well. So, with some gentle nudging (mom), I'm going to give this blogging thing another go. I have a lot to cover....some serious, some silly, some A-MA-ZING. But today I'll just toss out a brief update.

?How am I feeling physically?

Oddly, a tough question to answer. I guess I feel like someone who needs a new heart. I'm tired and nauseous and dizzy and can't breathe...and that's a good day. I am operating from that new normal and so when someone asks how I'm feeling, and I say "Good" or "Great" or "Fine", well, that is what I mean.

If I've gained 5+ lbs in 24 hours from water retention, if the pain in my chest is distracting or limiting, if my resting heart rate is 120+/bpm, well those are my bad days.

?How am I feeling emotionally?

Much better! Initially I was so overcome with fear that I had a hard time identifying the hope and blessing of my circumstances. Time and research and some key conversations have helped me carve out a much more hopeful perspective and I might almost be ready to do this thing.

?When can I expect a transplant?

My doctors are fantastic about providing me information and answering every question except this one. The shortest wait has been 8 days and the longest has been 5 years. There is some urgency in my case for things to happen in year one, so that is the timeline I am hoping for. (But if I'm being honest, I'd like to be transplanted, recovered, and back to work by the end of the year. Overachiever you know.)

?How do I pass my time?

I've learned that when you're really sick, time passes just fine without too much effort. I sleep a lot, maybe enough to rival my newest nephew. I read a lot. I have watched a lot of Netflix (recommendations welcome!). I completed a University Independent Study course, and got an A! I visit friends and family when I can. I have clinic appointments every 7-10 days. I drive to the pharmacy once a week. I have been down over a year now, and I honestly can not remember being bored for one moment. I guess I have been lucky.

I also want to mention that I feel loved and supported by so many. I appreciate the cards and notes and prayers in my behalf. Thank you to those who ask my family about me, it is appreciated by all of us.

Waiting: Day 12

I was in a parking lot this evening chatting with a friend when I heard something that made me want to throw up and sit down on the pavement and cry...it was only the sound of someone remotely unlocking their car, but I swear it sounded like a pager going off. The looks on my face and my friend's were a strange combination of horror and surprise. Surprise for her, and horror for me.

I was listed for heart transplant 12 days ago and I have spent as much time as possible during those 12 days in active denial. It hasn't been an easy task, since so many have wanted to offer congratulations and support and when I've been unable to escape all of the optimism, I've done my best to play along and celebrate with them (sort of).

I don't want to have a heart transplant.

Like, really, really, really don't want to have a heart transplant.

Part of being listed for transplant is sitting with a counselor to discuss and initial each of an 8 page document outlining all of the risks and side effects that come with the procedure, recovery, and medications. It's very detailed and leaves no questioning that even the best case will come with some life long challenges. I don't want to be that tough...and so I deny. But tonight's small test run has caused me to glance at my reality knowing that I'm going to have to make eye contact, then face it, sometime soon.

I haven't packed my overnight bag yet (a conscious act of defiance), but I'm sure going to be bummed if that pager goes off and I have to check in to the hospital without a tin of Victoria Secret lip balm, my own toothbrush, and my favorite yoga pants. So I'll make myself a promise to do something transplant-y before the end of the week...maybe purchase an extra deodorant for that overnight bag?

Big Day

This is my awesome 1980's style pager. I feel some pressure to be articulate or profound...but I have no idea how I feel about this. I don't know how I'm supposed to feel about this. I don't know if I'm ready to have a heart transplant, you know emotionally speaking, because the doctors are obviously convinced that physically it's time for me to be ready. Is a person ever really ready for something like this?

The people who love me are super enthusiastic about the news...but the people who love me best, know that this is pretty weird for me. The page could come as soon as tomorrow or as far away as four years. I just hope when it does come, I've reached some clarity to build confidence upon.

check...check...check...check...

The clinic calls it the "Blue Checklist" and it has kept me very busy this week.

I was admitted to Coronary ICU on Tuesday, which was a bummer, but check out the view from my bed:

After close observation, and an insane amount of lab work, and a brutal test of my patience, we finally answered the question that has been hanging over me since the end of February, "Were my lungs healthy enough to qualify me for a heart transplant?" And the answer is yes!

The previous 90 days had moved at such a slow pace, but things went into warp speed Wednesday morning when a large team from the transplant clinic entered my room to meet me and get my paperwork started. I was discharged from the hospital Wednesday evening and sent home to get some rest and prep for the remainder of the week.

The Blue Checklist is how they keep all of the lab work and evaluations and exams organized and keep me on schedule in the right place at the right time. By the time every item is checked off, I will have a completely clean bill of health (except for the garbage heart). The team at the IMC Heart Transplant clinic have done everything possible to get my case ready for presentation to the transplant committee this coming Tuesday. Wild, right?

Clearly, what I think I know about waiting is about to be challenged, so hopefully I have learned a few things as I have moved to this point. Thank you to so many who have offered encouragement and faith and support to me, and to my family these past few months.