"To breathe easy is to live free". I saw that quote before Elias' transplant as he lived in a state where CF had robbed him and our family of so much. Now post transplant this is what that quote means to me.
It means breathing room air without being tethered to an oxygen concentrator or Bipap machine.
It means enjoying taking a shower because the humid air doesn't make it impossible to breathe.
It means deciding as a family to go somewhere and just leaving.
Not having to ask parents to come along to help with Elias and the kids and if no one is free, not being able to go.
Not having to calculate how many oxygen tanks we will need for the number of hours we are gone.
Not having to leave him at home because today just isn't a good day.
Not having to bring a wheelchair along.
It means making plans and not planning on having them ruined by yet another exacerbation and hospital stay.
It means not living in a hospital recliner and showering in a public hospital shower for months just to make sure his anxiety stays controlled and I don't miss the Dr's rounding.
It means walking by my husband as he lay napping on the couch and not pausing just to make sure he's still breathing.
It means not reaching my hand out to touch him at night for the same reason.
It means sleeping in the same bed again rather than him sleeping in a recliner in the living room.
It means family vacations.
It means running in the yard, play with our kids and teaching our son to ride a bike.
It means walking the dog.
It means walking down the stairs to basement to do laundry and back up again.
It means going from less than 20% lung function to that of an average person.
It means no oxygen concentrator, no continuous IV's, no feeding tube because it just takes to much effort to breath and eat at the same time, and no chest tube hanging out of his chest to prevent another pneumothorax before transplant.
It means no regular visits from home health and infusion nurses.
It means not fighting every. single. day. to figure out how to get him on the transplant list and hoping that lungs will come in time.
It means scars that symbolize life and a future as well as emotional and physical trauma.
It means conversations about going back to work some day.
It means more holidays, birthdays, anniversaries and years together.
It means living life like a fairly normal family again.
It means so much more, but ultimately it means more time, more experiences, and more memories.
Monday, April 22, 2019
Thursday, January 3, 2019
Dreams and goals
I'm currently reading "Girl, Wash Your Face", by Rachel Hollis. I'll admit, I resisted reading this book for a long time. It was so hyped up and I often find that when something is really hyped up and I finally indulge, I am left disappointed. Maybe I expect something more after all of the hype, maybe I expect to be deeply and profoundly changed and then I'm not. So I didn't read the book or listen to the book.
But then I had a break from school and while I didn't read the book I had bought the book and it was sitting on my Kindle, waiting to be opened. So, I opened it and began reading and it did actually begin to resonate with me. Then I reached a chapter that challenged me. Do you ever read those books of encouragement and hit a spot where every page or every paragraph even forces you to stop reading and process what you read and how it pertains to your life? Maybe you don't, but I do. It's like I can't go on reading until I stop and reflect and pray, but then I also have to keep reading.
This chapter was about dreams and spoke to me and forced me to stop and really reflect on my dreams and goals and what those looked like for me. Before my husband's double lung transplant, I had the goal of starting an amazing birth centered business. A friend of mine and I even talked about starting it and we looked for spaces to rent. But the timing never felt right for either of us so it was pushed to the side. Since then, whenever I read books or blog posts similar to what I'm reading now, I always correlate it to my business as a massage therapist and doula and the business that I have envisioned for so long. But life changed after his transplant and new dreams and goals began to unfold. Yet, I had trouble applying many of these things I read to this new goal of becoming an RN and hopefully, eventually a nurse practitioner, and I had to reflect on why I could only read these books and posts of encouragement and success through this lens of the business that may or may not even be in my future at this point. In doing so I realized that my mentality needed to shift.
This book that I am reading does not only apply to entrepreneurs. Yes, the author herself is a very successful entrepreneur and many of my friends who have been inspired by this book are also entrepreneurs, but she is not only speaking to this population. She is writing to anyone and everyone who has any sort of dream. I realized that I keep watching my friends on social media who are amazing, strong and successful female entrepreneurs who are rocking the businesses that they built and that is who I dreamed of being and I have had a really hard time letting that go. Some parts of that are envy, some are grief. To stop and chase a new dream has, in so many ways felt like I am giving up something that could have been great before it became great. But I also have a family to support and it takes an unpredictable amount of time to grow a business that can solely support a family of four. So, when I really stopped and thought about what my current dream was, it was exactly that. My dream is to be able to support my family so that we can collectively meet our goals that we always talk about, but can't do right now and my new dream of being an RN will allow me to do that.
Nursing school is hard, that alone should be goal enough and I don't give myself enough credit for walking this path. The end goal however, is to become an employee and even before massage school, my goal was self employment. This has been a huge shift in mentality for me. That is years of seeing my life play out one way for one event (decline and transplant) to change my whole trajectory and it has been a process that I am continuing to work through.
I read another book this past and in it, the author talked about how we often have life events where we have life before that event and then there is life after the event. That event is declined transplant for us. I am not the only one who's goals and dreams have shifted, and I am really starting to feel that shift in my heart and soul in a good way, Elias has experience that shift as well. We have both grieved, we have both dreamed and we are both on new path than what we were on before.
But then I had a break from school and while I didn't read the book I had bought the book and it was sitting on my Kindle, waiting to be opened. So, I opened it and began reading and it did actually begin to resonate with me. Then I reached a chapter that challenged me. Do you ever read those books of encouragement and hit a spot where every page or every paragraph even forces you to stop reading and process what you read and how it pertains to your life? Maybe you don't, but I do. It's like I can't go on reading until I stop and reflect and pray, but then I also have to keep reading.
This chapter was about dreams and spoke to me and forced me to stop and really reflect on my dreams and goals and what those looked like for me. Before my husband's double lung transplant, I had the goal of starting an amazing birth centered business. A friend of mine and I even talked about starting it and we looked for spaces to rent. But the timing never felt right for either of us so it was pushed to the side. Since then, whenever I read books or blog posts similar to what I'm reading now, I always correlate it to my business as a massage therapist and doula and the business that I have envisioned for so long. But life changed after his transplant and new dreams and goals began to unfold. Yet, I had trouble applying many of these things I read to this new goal of becoming an RN and hopefully, eventually a nurse practitioner, and I had to reflect on why I could only read these books and posts of encouragement and success through this lens of the business that may or may not even be in my future at this point. In doing so I realized that my mentality needed to shift.
This book that I am reading does not only apply to entrepreneurs. Yes, the author herself is a very successful entrepreneur and many of my friends who have been inspired by this book are also entrepreneurs, but she is not only speaking to this population. She is writing to anyone and everyone who has any sort of dream. I realized that I keep watching my friends on social media who are amazing, strong and successful female entrepreneurs who are rocking the businesses that they built and that is who I dreamed of being and I have had a really hard time letting that go. Some parts of that are envy, some are grief. To stop and chase a new dream has, in so many ways felt like I am giving up something that could have been great before it became great. But I also have a family to support and it takes an unpredictable amount of time to grow a business that can solely support a family of four. So, when I really stopped and thought about what my current dream was, it was exactly that. My dream is to be able to support my family so that we can collectively meet our goals that we always talk about, but can't do right now and my new dream of being an RN will allow me to do that.
Nursing school is hard, that alone should be goal enough and I don't give myself enough credit for walking this path. The end goal however, is to become an employee and even before massage school, my goal was self employment. This has been a huge shift in mentality for me. That is years of seeing my life play out one way for one event (decline and transplant) to change my whole trajectory and it has been a process that I am continuing to work through.
I read another book this past and in it, the author talked about how we often have life events where we have life before that event and then there is life after the event. That event is declined transplant for us. I am not the only one who's goals and dreams have shifted, and I am really starting to feel that shift in my heart and soul in a good way, Elias has experience that shift as well. We have both grieved, we have both dreamed and we are both on new path than what we were on before.
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