What it means to be a 3.0 Patient

This post is in progress. Please email myself Julia at beckleyjulia3@gmail.com with any commentary and questions!

Thursday Night :

Maybe I’d just overworked my body and it just needed a little rest. The sore throat probably wouldn’t last long and I have all the perks of a trach and g tube to manage life from home. As my hands were noticeably blue and lips cyanotic, I began to initiate damage control. A nebulizer treatment, some oxygen, and hot tea held my hope together, but only for so long.

“University of Colorado Health, this is Liv speaking, how can I help you?”

I pulled air into my lungs in attempts to have a clear voice, “Yes, can you page the on call internal medicine doctor?”

The conversation continued as I explained the recent couple of days of just minor fever symptoms and discomfort, but the more imminent concerns of hypoxia and change in status over the past couple hours. Shortly after Liv made final instructions to wait for a phone call, I received just that. I quickly recognized the physician was not familiar with my complex case, but tried to describe things such that it would lead to the answer I wanted, “just stay home, and come in tomorrow morning.” I was honest though too, briefly explaining my symptoms and history. I followed my current concerns with “I do have a trach and g-tube to help as well.” I could amost hear her heart beat change in reaction to the information.

The physician quickly covered the basic questions that she would ask any concerned patient. We discussed the need to go to the ER despite my desperate desire to just get even one more day out of the hospital again before an admission. However, I knew she was right, and I knew when making the call I would be able to trust that an ED visit was most likely going to be the “safest” and preferred choice of the physician.

It didn’t take long before en route to the home hospital I became acutely sick (in my mind) with edema and an occulded trach. I maintained a relaxed pose lacking any kind of distress as hand off was given from the EMS crew that’d picked me up along the way. When the resident recognized me a surge of fear ran through me. What was I like the last time she saw me? Was I septic and confused to extremeness? Was I trying to survive another flair of angioedema without any other help only to be defeated when I failed and landed myself in the ER?

I never asked nor did I know the answer to those questions. I did know that I felt the incredible kindness and compassion flow from her heart. I begged for the visit to be short and that was the original plan and goal. It started. A couple hours later and my face quietly became rose colored and my harms covered with patterns of histamine release. While the fever seemed to disappear and oxygen maintained appropriately I was perfectly set up for a discharge only to have a reaction that mimicked Will Smith’s infamous scene of chugging benedryl in Hitched.

I bought myself an admission, but only to the floor. My heart relaxed a little knowing just months before this identical ER visit would’ve been a mandated ICU stay. We had progress, in my books.

Greeted by my family on UCH’s med specialities floor I took in the sight of my loving team members from beyond past to most recent. An overnight stay seemed like it would really take care of most things and hopeful to return to our white picket fence of a yard and playing with my dog. The following morning resulted in a low fever of 38 C. A minor concern in my eyes, random fevers and respiratory buts felt routine. Anna, my RN, continued to laugh and joke and smile with me but stopped talking about “getting out of here to get to go have fun” and focused more on relieving the symptoms as they piled on. Within 24 hours my temperature spiked to 40 C and stayed there. Tylenol and the kitchen sink couldn’t do much. I tried to grin and ask about going home for Christmas but the mood of the room changed. Anna expressed concern that out of her experience being my nurse so frequently I was more than just a little sick to her. She compared my status to that of when I had sepsis last.Days blurred together as Toby sat on the end of my bed only leaving my side for short bathroom trips.

When kids are sick most of the time they cling to mom or dad or family. I have an extended family made up of environmental cleaning staff, CNAS, volunteers, EMTs, paramedics, nurses, nurse practitioners, PAs, respiratory therapists, attendings, social workers, patient advocates, med students, interns, residents, and so many more at UCH. It wasn’t an easy path to come to this point. It involved tears and frustration and arguments just like I’d had growing up with incredibly caring and phenomenal parents. Now I have more trust in providers than I have in the past 10 years, well I guess more than the average. I have the ability to listen more effectively and communicate as well. I don’t give up at the first sign of personality conflict, but try to find common ground. I have discovered the difference between wellness and illness can be an “I” and a “we.” I have a long road ahead of me but I have a team of cheerleaders right beside me, inpatient or outpatient, the latter being preferred. My mind is to my wellness as wind is to sailing.  At the end of the day I feel horrible that I have been almost every type of patient that frustrates all of us, especially myself, the types of patients that get joked about by too many even. I am so grateful and proud to have come to the point where I have. Healthcare 3.0 care as a result of not just one individual, but a family of providers and people. I have learned that even the best of care cannot be 3.0 without the patient’s simultaneous effort to be 3.0

What it means to be a 3.0 patient:

These are just the basics of what I have observed

1.       Communication- everything starts with this. If I as a patient do not present my symptoms verbally or physically (physically, is dependent on my provider being very attentive too), than I cannot expect change. This leads to the first sub point

a.       Honesty comes in all aspects of the care process. Being able to be forefront about EVERYTHING that applies (sometimes its hard as patients to know what to say versus what not to say, and its hard on the other side too to know whats important versus whats not). So both honesty in presentation, not faking symptoms, and honesty in the other parts of the process.

When it comes to honesty I believe that being able to communicate with my provider what my concerns are and what my goals are, have the most important component for me. If I can’t address my concerns, including my anxiety, about my care whether that be the next steps or the past, than I am not going to mentally be able to manage either.

b.      Trust- This is incredibly difficult part of care. I wish I could spend more time with my providers giving them more information on why I make the choices that I do, so they could better understand what is going to be successful for my care and whats not. When I think about the “whys” I think about wanting to explain sometimes my verbal reactions to ideas (not necessarily bad verbal reactions, or whatnot). I want my providers to see beyond the 10 minutes that they get to spend with me to understand that the difficulties I have, go way beyond today. I broke my first bone at age 8, and it took 17 breaks to finally come to the conclusion this wasn’t normal. I have a track record with providers that they have said something, and unfortunately my body hasn’t followed suit. That does not mean they did not practice good medicine, and were not right in whatever instance; however, it does have an impact on how much I “trust” the process of whatever is going on ER visit or hospital stay or outpatient follow up. I have recognized this and worked hard to communicate my concerns, and learn that I am much happier when I can find a way to accept the where my physician stands and trust them. Sometimes this means saying “I am scared about xyz currently, I know this might be ridiculous.” My provider responding, yes that’s a little out there and here is why we don’t have to worry about xyz right now and here is when we’re going to worry about xyz.

2.       Attitude

a.       Gratitude

b.      Love/compassion

c.       tenancity

d.      Not getting butt-hurt

3.       Responsibility

I see you not ICU . . .a non hospital update!

Non-hospital update:

I'm so excited that I get to share that I once again judged debate this weekend. It has been an incredible week and I'm just on cloud 9 right now. I have no idea why, well maybe I do, but I am so incredibly happy after debate tournaments.

Denver East ran a great tournament and I have been asked to go be a judge for their team on the weekends and potentially travel with them. Its not anything official but I am honored that they've taken interest in me.

I am also known as the judge who makes jokes and has a cute dog. I hope this is good? I hope students don't feel they are at disadvantage with Toby in the room, I know I have been incredibly impressed with the rounds I've been a judge in so if they are impacted they truly need a disadvantage to level the playing field.

I also have started swimming again which is very exciting for me as well :)By swimming I mean I've gotten in the pool 3 days this week and by the 3rd day swam a total of 500 yards. I am trying to remember to take it easy and one step at a time. I so badly want to be the athlete that I see in my head but even more badly I want this to last and not result in hospital stays.

I also had a wonderful appointment with my doctor this week and we discussed a return to Iowa. I had a phone call with the dean of students at Coe as well. I have been saying for the past 4 years I am coming back so I'm not making any promises about it all but Coe is in the cards.

I am 10 credits shy of my associates degree after FRCC didn't give me the credits I was told I would get but I am hoping to CLEP out of those 10 credits. This means that really the next step is for me to get my bachelors degree and I'm ready to be a student again. My gut says so at least. The biggest hurtle for me will be finances but I have faith I will continue to apply for scholarships, and work hard to make it happen. I have seen some pretty amazing people work their way through college though it may be a little different in my ability to do so, this is what I want more than anything these days (and the past 8 years).

Everything can change so fast for me in a minute that I'm just taking it one day at a time and enjoying my hope.

I have also been blessed with a great bible study group that I have even face-timed with in order to attend and they were the ones that suggested that. To have people who go so far to include me is amazing. I've always been blessed by the people around me and I feel I have been given way more than I could ever even hope to return in a lifetime so I can only continue to pay it forward in hopes I make a difference for someone else.

I am babysitting for a wonderful family in Denver as well just once a week, but its perfect for me right now. I have eased them into my circumstances and feel already very loved by their family and the situation.

Friday I had the best of surprises and had not 1 but 2 phone calls from my my soul-friend Tess, the one in the navy. She said "I needed a pep talk from the strongest woman I know, so I had to call you." I couldn't believe the words she uttered and I repeated them directly back to her. I love getting support others and getting to be a friend and she is one of the greatest things that has happened in my life. Honestly my whole EMT experience really has been that way (Tess and I met in EMT school). So thank you to my EMS family even if I don't get to be on the streets with you and even in the classroom for the most part, know that I smile about the good things and feel very blessed by all of you.

Every day is a fight for everyone. We all have struggles and there is no way to compare them. So know that I am sending love to you all. I have given beyond what I "can" in the past and I cannot do that again. I end up taking way more in the end. So I am here for you but with boundaries.

Love,
Julia and Toby

"Yes, I swim with a Trach."

What follows is my practice essay for part one of the CLEP college composition essays. I had 30 minutes to write my essay ( I used 40 but handwritten so I’m hoping that I can give myself some slack for the first practice essay). The challenge is to respond to the prompt:

There are no challenges so difficult, no goals so impossible, as the ones we set for ourselves.

I have attached the link below for the rubric the essay would be assessed on. Please feel free to comment with feedback or email me.

Scroll down to First Essay: Directions and Scoring Guidelines

https://clep.collegeboard.org/exam/college-composition

I whispered to my mother (with an accompanying heavy glare) “No, stop, I already know.” I didn’t really know the answer to the question. I had spent endless hours thinking about it and doing research. I did know the answer Dr. Mathew Clary would give.

               “So, can she swim with the trach, should she?” my mother posed the question I’d spent all of my time pondering.

               “Yeah, sure, I mean keep the Trach capped but a few splashes should be fine.” Dr. Clary openly responded.

               “No, no, swim, like laps and such.” My mother corrected Dr. Clary’s landscape he’d so quickly painted. I received the equivalent of a doctor’s “professional” spit-take in the form of a facial expression.

               “You’ve got to be nuts!” I grinned, I knew this was the perfect challenge for me. “You are out of your mind.” Dr. Clary, still, profoundly flabbergasted by my persistence to swim with a trach, continued to utter statemenets reflecting amazement, but not exactly a presecription for exercising in the water where death loomed in the unknown. I had my end goal laced into my mind. I would one day find myself jumping off the starting blocks racing my way through the water with a tracheostomy in place. While there is nothing easy about the goals I place in front of myself, the challenges that line the path are merely impossible to those unwilling to try or those on the outside. I have found the goals other individuals set for myself are the impossible.

               I am the younger of two type A incredibly driven females, comparison came naturally. My older sister by 4 years competed as a student athlete, achieved honors academically and athletically throughout high school, so there would be to expect nothing less from “Little Beckley.” By th second month of my Freshmen year, it was evident I would not trace my sisters footsteps in achievements as the expectation I had felt from others. A month before conference championships in high school swimming, medical problems that appeared to be deadly reactions to many things, including the pool, kept me on the side of my sister’s steps. I quickly began to take myown untraveled path. I still ahd my own dreams and goals but they were focused on my view of possible and my passions. In the end I too graduated with academic success and athletic success in my goals.

               I didn’t swim competitively again until my freshman year of college. I found myself struggling with health again; however, this time I had a continuance of broken bones plaguing my dreams. I was not excluded from swimming in the first meet but I was not cleared either as a potential underlying fracture had not been evaluated. When the assistant coaches asked if I would be swimming as I loaded the bus, I grinned, “S***, I’ve forgotten my suit, I’ll be right back.” I swam my fastest 50 free at my first college swim meet with what later showed as a stress fracture in my left foot.

               As I smile nostalgically at my past with swimming, I see the goals I’ve achieved and the ones I did not. The goals set by others were truly impossible. Each challenge I tackled to my own personal goals, was not easy but I made my it all possible. The spirit of the statement “There are no challenges so difficult, no goals so impossible, as the ones we set for ourselves,” reflects the human nature to push boundaries which is also reflected in my own goals; however, as a romantic I believe anything is possible.

               6 weeks later I returned to my ENT’s office. Before leaving I pulled out my phone “Oh, I would like to show you something.” I pressed play. A neon inverted video proceeded of a girl swimming, accompanied by words and music. (https://www.facebook.com/beckleyjulia3/videos/vb.1369626920/10205343264445652/?type=2&theater)

               In a different wave of astonishment Dr. Clary looked at me “That’s you?”

               “Yes, I swim with my trach.”

The Chapter I am in: Learning to Dance

     We walked around the tennis courts at City Park in Denver looking for the perfect spot. I knew this park well from years of playing tennis there against Denver East High School; however, today's visit was different. Megan, a dear friend from Coe College, was visiting for the week. She had never been to Colorado, and per tradition needed to go dancing in Colorado to check the state off. We would spend less than 30 minutes going over the basics of Lindy Hop (a type of swing dancing). Following dancing lessons with a brief intermission for food and than off to Baur's to listen to the Spicy Pickles while dancing the evening away. I only danced for a few songs with Megan throughout the evening but it was the start of something incredible. Surrounded my a new community to for myself and Toby, I found happiness and hope; the intangible feelings I had been short on many times throughout the past year. A couple of days later we went dancing again at the Mercury cafe, and Megan helped make sure I was prepared. I pre-treated, taped my ankles, and felt great going into the dancing. I got to dance with a few very experienced dancers making it easier to follow.
     The importance of my dancing story is not just how happy I was and am dancing but how I have applied this to my life most recently. In the second grade I remember learning how to dance, I don't know exactly what type of dancing but I do remember something about "the pretzel." I thought I was happy with the level of my dance knowledge as is and didn't feel that I could really dance anyways if I tried (not just intellectually but more out of physical fear, and I still have this struggle). After recent conversations I was reminded of this idea of freedom from illness and health, living much more than I have. More and more that feeling of freedom has appeared in little bits and I've thought about having better grasp over health. This idea has always been the goal but I feel that I am coming into a season of which I will learn to live again but not without obstacles. So I've decided to think about this in comparison to learning to dance "again." While I may have known some basics years ago of dancing and life, I am learning the basics all over again. Listening to both the music and my body I will learn to follow the rhythm. I will find pattern in my feet and breaths I take to have better autonomy and management of how I move my body and flow through my life. I will learn the basic movements and basics of living all over again. In the end of this chapter I will find myself with a different level of life and dancing.

Thanks to Brooke Jostad, for posting a question on Facebook of "what would the title of the chapter of life you're in be?" Please feel free to respond in the comments or email me at joulesandjules@gmail.com or fb respond! Prayers and love to all!

Changing the Game

          Packing my bag frantically I ran through my head everything I would need to bring. There was the the obvious survival needs, clothes, food, and Toby. After the essentials most 22 year old females would need I pulled out the big teal bag, "the drug bag." I packed 3 different nebulizers (2 portable and their charger and the charger that allows them to be plugged into the car, and than the big nebulizer too). Why would someone pack 3 nebulizers? Because the mesh cap has failed before, the batteries have died, and so many things that seem preventable. That word "preventable" haunts me. Several weeks ago an idea had popped into my head, a metaphor. I've realized over time my thought process has been warped to where I have scenarios that can play out in my head as sometrihing starts to go wrong and I typically try to optimize the "having a life" aspect figuring that even being the most of proactive I'd end up in the ICU at some point or the ER or whatever you have it. I have been living in a pinball machine. No matter how hard I try to change where the ball goes it ends at some point. I have gotten very very good at playing pin ball too. Remember the last two flippers right before the end? I've mastered the art of pushing that ball back into play when it seems like its doomed. 

        I look at how my friends play pinball. I listen to their challenges they all face and declare I don't want to do it that way. I declare I don't want the world to see me as a pinball player and I wouldn't make my facebook all about playing pinball, and than it happens. The game ends or I need advice on different moves, and than I judge myself. It seems so simple right? Just walk away from the pinball machine. Or "just get a job" and make some money and you'll be fine. 

        I have no answer to this problem tonight but I wanted to start writing some and just share. I wonder if I can change the game. I wonder if I can de-construct the machine and change how it ends. I wonder if people who've played it once or twice can give me the best advice. I wonder if those watching for years on end can make a difference. This is by no means the perfect metaphor but it was a starting point for writing.

       Friday I was so excited to go see the concert with Jules and even more lucky to spend a good hour talking with the Flobots after and getting to sign with them. You see 6 years ago I went to my first official concert, the Flobots, at New West Fest. Rachel, my sister, was in a coma at the time. Each band member signed a shirt for her with a personal message. The shirt hung in her room throughout her recovery and at home too. 6 years later and she had just returned from teaching in France. I got to share that they were apart of not only her recovery but my own journey. I quickly learned that one of the band member's wives is a speech pathologist too as I went to cover my trach to talk each time but was consistently reassured it wasn't gross and I didn't have to do so. I also got to sign with a lot of them as they too are asl students. It was the most incredible night but it had its concequences. So what if I hadn't pulled back on the plunger to push the next ball into the pin ball machine game that night? What if I had stayed where I was. Would I be fulfilling the plan for my life or was I going against the plan? Is this my fault? 

     What I do know is I have to believe I have purpose for my life. I have to believe that I am getting better even if it is simply my ability to handle hospitalizations. I love what I have done and my regrets lie in the relationships lost and the people whom I've harmed through my choices. I apologize quite humbly to those who've been on this journey and no longer can tolerate me. Thank you to those who are new to this and those who are old to this. Here are to more days of playing the game, and hopefully changing it too.

What it Means to Be Here

                If we're going to have this talk, I'd like to prepare you a little bit. I want you to know that if I could redo the past 20 years I would most definitely take different turns. I do not believe would be who I am without the difficulties that I have had, nor would I have developed the same relationships I have had.

                My most recent difficulty has been that I stopped sleeping due to the angioedema, and bone/joint pain. I injured both my shoulder and tail bone in the previous months which has led to significant amount of pain. I didn't want to ask or take narcotics because I do not believe narcotics are the solution for my pain 99% of the time, and I have no interest in becoming dependent on narcotics.  Considering the amount of sleep issues I had I don't know if this is one of the wrong turns I took.

                As a result or perhaps well deserved I also ended up getting pretty sick from the asthma and allergy side of life this past month and that was difficult. Finally I had emotional stressors and physical stressors that I pushed through. As a dear friend has told me "You tell your body what you want it to do and it will do it, but what are the concequences of doing it?" So I struggled on the physical, mental, and spiritual side greatly in the past couple of months and I asked for help but kept getting arrows of getting help else where. Finally the week of Christmas my mind and body broke down completely.

                Christmas eve was enjoyed over multiple ED visists and a final admit on christmas morning only to quickly get discharged (my request due to anxiety of being in a hospital and knowing that was a contributing factor). We (my second sister, Emily) and I drove than to my "Aunt's" house in Denver. I attempted to make it home from there and ended up on another ambulance to swedish where I did at least get 4 great hours of sleep. After being discharged Emily and I made our way to her apartment where we made it through a swelling episode. Unfortunately I took on someone else's problem that night and not only had to call an ambulance for someone an hour away and horrible snow conditions, but got my car stuck and bought myself another ambulance as no one is going to leave a 20 year old in a snow storm with her car when she is swelling and her BP is dropping. Got quickly discharged from Sky Ridge (hospital number 4/5 of the month), once again at my request.

                My parents rightfully worried did not allow me access to the car that had all of my medicaitons in them as it was towed. Me in a manic state had the taxi driver take me to walgreens. I knew that I could at least get medication that was needed and due at the time. My next step was that we would drive through Boulder and Longmont up to Fort Collins where I needed to take care of a Dog as well as where my house was. There are more family dynamics that complicate the issue, but nothing that my parents or any family members have done wrong. (remember everyone has the same goal but there are 40 ways that look like they might get us there and 10 are sketchy, and 10 are frustrating and 20 are a coin flip).

                So back to the 26th of December, I was in the taxi monitoring things with my new bp cuff and new pulse ox. I had some apple juice to make sure my body had some energy to deal with the swelling that was occurring. I wrote on my new whiteboard some affirmations to make sure I stayed with it and got through everything. I knew I needed a nebulizer treatment as I had the flu and knew that I minimum needed an albuterol treatment. We made it to Boulder and I begans tightening up more, (anxiety most definitely a factor), but I had no medication except for epinephrine pens to use which I didn't want to. I also had the swelling but the trach was in and it was open. The final factor is my brain has recently been throwing in some pretty scary neurological symptoms, which to my knowledge I believe was my brain's way of saying "I'm done bitch, give me help, I can't cope any longer." Perhaps there is a more legitimate medical reason as well. So the result was we called an ambulance and from my memory talking with dispatch I couldn't say what exactly was going on and repeating phrases became incredibly hard.

                This time in the ED the doc in charge quickly discharged me with anxiety. I quickly rebounded in front of the patient advocate and called dispatch such that there would be record of how this went down. At this point remember I had 4 hours of sleep in a 24 hour period. Incredilby stressed not only because of my own health but its been a month of trauma all around (putting a dear friend's cat down, finals week, and having a friend in the ICU). So I was put on an M-1 hold and a different doctor saw me. I don't actually really remember everything but I continued to get more physically sick. I got taken care of physically but was taken of steroids abruptly. If you were my friend my freshmen year of high school you might remember some of the mania I had than after abruptly being taken of steroids. It is apparent now that most likely I have a form of Bipolar, and as doctors have said a very mild form; however, it is complicated by steroids and the medications I tend to need regularly.

                I spent around 7 days on the mental health floor to get me back to baseline physically and mentally. The hardest part for me is accepting that I most definitely suffer from a mental illness. Even though I have tremendous coping skills from all the trauma I have been through it was time that I got help in pulling those coping skills out as well as giving me a break from family dynamic stress. I also didn't have to deal with my angioedema alone for the entire week and I saw no friends suffer by watching me go through it. It sucks that I needed that much help but I will say I had been askingaserious pyschiatric help for the past couple months in doctors appointments as many will note. I met some amazing people and truly had a wonderful time growing on the behavioral health unit. I could not thank AMR, PVH EMS, PVH, MCR, UCH, and BCH enough for the help and kindness that has been shared despite any severely abnormal behaviors I had.  If you're reading this and have been a provider for me at some point in time, note that your work will never go unnoticed in my life. I will always be paying it forward; however, it is time that I take over my own care and hopefully learned the lessons needed to be truly successful. I do ask that you don't use me sharing that I have Bipolar as a way to justify anything you thought was weird about me, perhaps use it to recognize my strength instead.

                To end this note I'll type the poem I wrote while I was in there. It is incrediby important to me share that I am proud I was there as I start my EMS career. I recognize that not all may see it way. I encourage you to try to see it as a benefit to my growth as a provider especially considering our current crisis with not only providers experiencing depression but also patients throughout our nation. I was never in a state that I considered ending my life, but my self harm became forcing my mind and body through more than it was able to handle. If I asked or ask you for help and you say no don't feel bad at all, I am incredibly cognisant of boundaries and would prefer to have boundaries than for you to break your back picking me up.

What being here means:

It means I didn't give up,

It means I raised my hand for help,

It means I have people who care about me,

It means I never gave up,

It means I am loved,

It means I love myself,

It means I love my future.

Thanks Mom and Dad

Mom and Dad,

Where to start, well I suppose I should explain this letter is typed because I couldn’t write the amount of words that are going to come out down without hurting myself nor could I keep up with my mind. Oh and don’t cry either.

No this letter is not some psychological break through, crazy enough to believe especially considering the words that are about to be said (don’t worry its good stuff, I promise (yeah I do lie a lot, but I really am not here)).

Second warning, this is not well edited so Dad don’t take your fine tooth come through this letter it’ll get stuck on the first line.

Third warning, you’re probably going to want to pull this out from time to time, and I suppose you can but remember that I may or may not appreciate that but whatever that’s your life choice.

Okay here’s the meat and potatoes if you take one thing, well actually I’d appreciate it if you took more than one thing, so here’s my bullet points.

·       You can be right approximately 99.99999% of the time. (I was going to say you’re right, but I’m afraid you might take that as me saying you’re always right, two very very different things. I am still your daughter so I can’t admit that you’re always right yet). That .000001% of the time that I disagree with you and turn out be right matters though okay.
·         Stop worrying. You’re friggen parents of the year already okay. I think we can stop with the stupid ER/ICU/Doctor visits and just call you parents of the lifetime. Despite how much I might of f’ed up (yes that is fudged, I am an angel). You’re amazing.
·         I am grateful for every second that you have poured into my life whether that be through thought, or actual time. No matter what I have said in the past lets just unring those little bells and ring the big ben clock so you hear me. I love you. I am grateful. I am the luckiest kiddo in the world to have not only you for parents, but to have had the incredible family that I have.

·         I’m going to screw up again. I probably already have and you’re just waiting to tell me or waiting to find out, but forgive me please. You’ve got 30-35 years on me and its just not fair because I want to be as smart and as amazing as you and even more so.
·         Thank you. That’s as simple as it gets. Thank you for the effort you have put into me and my life and my sister’s life.

• ·         Oh that’s the last thing. Rachel and I are no longer “teen” power, we’re “young adult” power. Watch out. Now that we really not only get along but truly see the value in each other, well lets just say the tramp stamps are not the only thing we’re going to work together on for mutual benefit.
• ·         Oh one more thing. I will gladly take care of you in your old age, but I’m totally going to be just as a pain of a but you are to me if you get alzheimers. Just saying so that we’re clear. I also charge at least 12$ an hour for any caregiving, but don’t worry I owe you a lot more than what you’ll spend on me so we can call it even.

Okay so yes this letter so is not organized, but that’s my brain and well you two made that life choice 21+give or take years and months ago to have me and well I’m what you have.

I know its taken you 40 years to get me to age 20, but I couldn’t be more grateful that it took so long because that means I got 40 years of life with you and if theres anything I’ve learned in the past 20 ½ years its life is short. Love every moment that you have even if it means loving the fact that you can hate the moment that you’re in.

I sure hope my kids are easy, or at least I hope that they have you around for grandparents because I can’t do what you have done alone at all.

I wouldn’t trade the world for any other situation if it meant I didn’t have the gratitude and love for the family and life that I have.

Thank you for letting me be stubborn, independent, tenacious, or whatever word we’ve called it besides
brat well and brat just so that’d I would make it to this point in my life and realize how much I have been given by whoever is in charge of this world (steelers, or god, whatever you pick I’m grateful). Thank you for fighting for me no matter the cost and thank you for stepping back and taking care of yourselves so that you could continue to fight for me later on.

Thank you for never giving up on each other and showing me what love looks like no matter what you go through or how much growing you have done.

Thank you for teaching me to always love my sister, even if that comes in “love” bites. Lets be honest we’re all happy I outgrew the biting phase (life could be worse ya know?). I will always be grateful for every moment I have ever spent with her and I am grateful to have become an older sister in some ways but more importantly to recognize how much I can learn from her. Thank you for making me say sorry to her (I don’t actually remember this but I’m guessing it occurred, even if it occurred with an eye roll), because I actually am sorry for anything that I ever did that would harm my sister. I promise no matter what I will always look after her as my sister (so good luck with the parenting crap cause we’re not easy and I ain’t trying to help anymore).

Thank you for never ever telling me no to my dreams. Thank you for telling me some things aren’t possible so I could prove you wrong, though I’ve learned I don’t always have to do this and its totally okay for me to listen to you every once in awhile.

Thank you for standing up for me when others have tried to put me down.

Thank you for pushing me to be the best human I can possibly be and encouraging me to have the heart for others that I have.

Thank you for teaching me how to laugh in the face of fear and struggles because its made life a lot easier.

Thank you for giving to others more than what we thought we could give whether that be friends who need a meal or the biannual fundraisers that you indulged in.  Oh and thanks for shaving your heads too. I don’t know many families that can say they all shaved their heads for kids cancer research but no kids in their family had cancer prior to doing so.

If I thanked you for everything there wouldn’t be any reason for you to listen to me anymore so this is where the letter ends. And its late. And I’m tired.

I guess it all comes down to if this was the end it’d be a happily ever after, so it’s a good thing that we have a lot of years left ahead of us until I turn 40. Good luck. Maybe the next 40 years will be a little easier now that we’re closer in the pages we’re on in the book of life.

Love you both. Don’t forget I’m still 20 so this doesn’t change everything. I still have sass to give and lots to learn.

Xoxoxo

juju