Becoming a Nurse Coach

I remember the first time I heard the title "holistic nurse" and a spark ignited within me. I thought, wow that might be the perfect field for me. I knew prior to going into the nursing profession that I wanted to integrate holism and integrative medicine into my nursing practice. I thought the only way I could do that was by becoming a nurse practitioner. Then I found a Bachelor's Degree program that focused on holistic nursing and that will equip me to become certified in that arena. This program has been teaching me how to be more holistic as a bedside nurse, but something was missing. 

Enter nursing coaching. 

Nurse coaching is a board certified health coach role with the knowledge and background of a nurse combined with integrative and holistic modalities. 

When I learned about this possibility, I knew this would be a great fit for me. I could begin practicing holistic and integrative medicine years before I could even finish my NP. That doesn't mean I won't still pursue that, but that DOES mean that I be able to begin seeing clients this year rather than in 6 years for example. 

I was watching a video today of a woman around my age who also lives with Cystic Fibrosis like Elias who was emotional about feeling as though her healthcare was out of her control and I thought to myself, "this is why I am so well equipped to be a nurse coach". I understand the patient and caregiver perspective and struggles while also understanding the role of the nurse and western medical field (including the good and the bad that comes with that). I know what home life with a chronic disease and medical management looks like. I understand how hard it is to be a caregiver and still have to figure out how to prioritize your own health. I also know what it's like to not do that well, and then have to make major lifestyle changes to prevent chronic illness from also affecting you. 

As a nurse coach, my clients will not face judgment from me. We will partner together to figure out what your unique needs are and where we need to focus our time, attention, and goals. Together we will take a holistic and integrative approach to create lasting lifestyle that supports holistic health. 

I am so looking forward to learning how to better support my clients and patients. 

Reclaiming my Health

 About two years ago, I was sitting in a lecture in nursing school about obesity. Throughout this lecture we  laid out all of the risk factors that come along with being obese. Now, I don't give BMI too much power over my life because I know that it is an outdated and inaccurate way to measure health, however we also discussed that waist circumference is a more accurate measurement of risk factors as carrying weight in one's abdomen increases their risks of diseases such as high blood pressure, high cholesterol, and type two diabetes. I sat in that lecture acutely aware of my own weight and went home and measured my waist. 

When my husband Elias was sick and frequently in and out of the hospital prior to and following his bilateral lung transplant, I put on quite a bit of weight. I was in survival mode. I ate what sounded good, I didn't have any extra energy to devote to exercise. I had two year told twins and a husband in end stage lung disease to take care of at home. I was not a priority in that season. Everyone told me to take care of myself as well, but that did not feel realistic. Once we were on the other side, I knew there would be time for me, I just needed to survive that season. 

Fast forward two years, and I was no longer in survival mode, but I had made no progress in reclaiming my own health. So I sat in this lecture and processed how I was married to a man with diabetes and I knew what that involves. I knew that high blood pressure and high cholesterol run in my family and I also knew that with my husband's health history, my family was relying on me to stay healthy, even if they didn't know it. 

It took time and supplements, but eventually I turned back to the eating plan I knew and trusted. I began preparing healthy meals for lunches that kept me out of the freezer and canned soup aisles. I incorporated gentle exercise as time and life allowed and slowly the pounds began to come off. 

Today I have found myself at the same weight for almost a year. It is not where my goal was set, I am still working on that, and I still have to work at making healthy choices every time I eat, but it also comes more natural now. My waist circumference is in a healthy zone, and I am the lightest I've been since our first year of marriage. I know I am healthier, I know I have reduced my modifiable risk factors. I am not perfect, I have not arrived, but I am a healthier version of myself and now I am beginning to also focus on my mental health. 

Changing my busyness mindset

 Lately I've realized, I need to work on my mental, emotional and spiritual health. I often view my life as busy and overwhelming, and this weekend, God was speaking to me. Yes, my life IS busy, more than I would really like if I'm honest, but I was reminded that at times, we need to adjust our mindset. I can view my life as overwhelming, or I can view it as rich and interesting, with various opportunities to learn new things. Yes, this leaves me tired as the end of each day, but it can also be fulfilling with the right mindset. 

Currently, I am working two jobs. I work part time as an RN, primarily working with COVID patients. I also work 2 days a week as a massage therapist from my home office. In addition, I homeschool my children and am working on my Bachelor's of Science in holistic nursing. When I list these things out, the weight can feel suffocating, but when I break them down I can view them objectively. 

The first thing I have had to do is remind myself that homeschooling my children does not contribute to my busy. Yes, homeschooling is a time commitment, but it is also an honor and privilege. It is an opportunity to teach my children, connect with them, watch them grow, and learn alongside of them. Raising them and time with them is my most important job. 

Working on my Bachelor's is also a time commitment and one of the things I could take off of my plate for awhile if I need to, but it has also kept me grounded during this crazy season of COVID nursing. It gives me hope and purpose and reminds me that there is a place for me in this field when I question if I belong here. Holistic nursing focuses on care and connection with patients, while also caring for myself as a nurse. It renews my excitement in this field and gives me to tools to make this work less stressful and overwhelming, especially as a new nurse. 

Working as an RN during the COVID pandemic has challenged me and stretched me. It has forced me to take patient loads that I did not think I was capable of. It has challenged me to take care of very sick patients, under additionally taxing circumstances than what "normal" nursing would look like. I often view this work as overwhelming, but it is also an incredible learning opportunity that will likely not come around again in the near future (we certainly all hope it doesn't!). I am trying harder to think of this work as rich, and interesting. Work that promotes growth. Shifting my mindset even before I go into my day, trying to maintain a positive outlook. 

Working as a massage therapist has been a love of mine for nearly 10 years now. It keeps me rooted and grounded, and fulfills that need for caring on an intimate and 1:1 level. It allows me to care for people in the way the I want to as a nurse, but don't typically don't have the time for. It is peaceful, allows me to tap into the spiritual guidance of God and my intuition, and connect energetically with my clients to better understand their needs beyond just the physical. It leaves me feeling well rounded in my professional life. 

Yes, my life is busy, but it is also rich, exciting, interesting and full of learning opportunities that I didn't expect to have. Now I am doing the mindset work to change my outlook from overwhelm to thankful and fulfilled. 

Choosing family over money

Oh it has been so long since I have blogged. I have missed this therapeutic outlet, but have not felt that I had the time or energy to devote to blogging the past several years.

I have recently experienced many life changes, I have graduated nursing school and have begun my career as an RN. I began working full time, overnights. Recently my schedule switched to the part time schedule I requested, and I will be switching from night shift to day shift soon, which comes with many perks, but less pay.

This is when the doubts have begun to creep in.

When I first began applying for nursing positions, I knew that I wanted part time to be an option. I knew that this was the only way I could effectively balance work as an RN, my business as a massage therapist and my roles of mom and wife to my family. My family however was my biggest motivation. I have felt as though I have had to put my family on the back burner for the past 3 years as I have focused on getting a degree that will provide better for our needs and grant us the security of health insurance and consistent, reliable income. School demanded 30-40 hours of my time each week before I added in time spent studying, completing projects and clinical paperwork, and most of these hours were during the few hours when the rest of my family was home, but I was not. I also continued to work as a massage therapist, trying to honor both time with my family, my own personal schedule along with the schedules of my clients. I had limited evening hours, no weekend availability, and a group of clientele who were only available during those hours that I wanted to make space for with our requiring those clients to wait a month or longer to get in. I always felt stretched too thin and as though I was not able to give enough of myself to any of my responsibilities, especially my precious family, and I knew that once I graduated,  I did not want to, and could not continue to live that way. We all deserved more. So I requested to work part time and I felt so much peace with that decision. It felt right. I felt deep in my soul the peace that comes with choosing to live off of less money to have more time with my family. 

Now that my part time schedule has begun, I feel more relaxed, more at peace, like I can really balance work and family life better than I have for the past 3-4 years, at the same time the fear and the doubt of what if it's not enough has crept in.  We have put off so many projects, goals and dreams due to money. What if this choice means that I am setting us up to continue to struggle financially? At the same time, if I really stop and think, I KNOW that with responsible spending, we will have enough money to live off of. It may not be a lot to other people, but it will be enough for us, right now, and each year we will reevaluate what our needs are, and readjust as needed. For now, I will try to keep the fears and doubts at bay and relish in the time that I get to spend with my children and husband.

To Breathe Easy is to Live Free

"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.

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.

Star Wars and Butterflies

Next week my sweet baby boys will go to school for the first time. They are 4 and will attend our public school district's half day pre-k program. My one son, Lucas, is so very ready. He is incredibly social and is looking forward to making friends.

He is what one often thinks of when they think of boys. He loves to climb and jump off of things (even though he is afraid of heights). He loves trucks and construction equipment and Star Wars. We have however tried to not feed into too many gender stereotypes while raising our kids. We haven't been perfect and our home is mostly filled with toys that would traditionally be thought of for boys but we also have things like a toy kitchen, a teapot set, dolls and a Peppa pig dollhouse that our other son absolutely adores.

I can't say that it's because of this, but we are cautious not to tell our boys that certain toys and certain colors are for girls, so when asked what his favorite color is, Lucas might tell you "all the colors of the rainbow". He has pink and purple leopard print slippers that he picked out once and that he loves because they are "beautiful". He also has a couple of shirts with glitter or sequins that he found on a clearance rack after the 4th of July and that he loved because they were shiny. So it didn't surprise me when I stumbled across some backpacks online and he told me that he wanted the one with the butterfly. It was pink and purple and clearly made with girls in mind. It was also far too small to take to school and he already has a small backpack, but had I been in the market for buying one, I would have absolutely purchased him that backpack because pink is just a color and butterflies are beautiful.

My fear as Lucas heads off to pre-k is that he will express his love for all the colors and things that are beautiful and that it won't be long before another child will tell him that those things are for girls because that is what that child has been taught. Lucas is a child who has a strong will and personality but is also sweet, sensitive and easily influenced by others. I so desperately want to keep my children innocent for as long as possible. To spare them the judgment of others and the boxes that we are all too often placed into. Kids are so authentically themselves at 4 and I so want to preserve that in them so that they will grow into authentic adults, but we all know that kids are shaped by their peers, for better and for worse, and that we all raise our children differently, much in part based on how we ourselves were raised.

I know I can't shelter him from the boxes that society has built and that tell him what things are for boys and what things are for girls, but I do hope that I can continually remind him that it's okay to be who he is. That is it's okay to like all of the colors, it's okay to have emotions and express them. It's okay to cry and that he doesn't have to be "tough" because he's a boy. That it is okay to be authentically himself, a lesson I'm still trying to learn as an adult.

Why I Don't Share About My Childrens' Stories

If you have followed me long either here or on Facebook, you know that I'm not shy about sharing details about our family.  I've shared many details about infertility, adoption, Cystic Fibrosis, Down syndrome and my husband Elias' double lung transplant journey.  Sharing tends to be therapeutic for me.  It makes me feel like I'm educating others and raising awareness, hopefully resulting in more people being more understanding and sensitive to a variety of situations.

You may have noticed however that there is a topic that I don't share about and that is why my children were placed for adoption.

I learned early on from an open adoption Facebook group that I am part of that, as adoptive parents, our childrens' adoption stories are not ours to share.  It's easy to forget when they are babies that our children will one day grow into older children, teenagers and adults that may not want their story shared with all that know them as well as those who don't, but were friends with their mom on Facebook.

I get asked somewhat frequently why my twins' birthmother "gave them up" (sidenote: we used the word "placed" instead of "gave up" because she made a plan for adoption, chose us to be the adoptive parents and then lovingly and physically placed those babies into our arms and family).  Some adoptive parents strongly feel that this is none of anyone else's business and will say so.  I do however understand why one would wonder why a person would place their child(ren) for adoption.

If you aren't part of the adoption world, you wouldn't be familiar with all of the various reasons that women and couples choose adoption for their child and for many it's really hard to fathom being in a position where one has to make that decision.  I am usually met with assumptions that she couldn't handle two babies, or that being raised in our family was somehow significantly better than what their life would have been like with her. I'm sure some wonder if it was because of Asher having Down syndrome. We've even been told that they are so lucky to have us, when in fact, they would have had a wonderful life full of love and care had they never been placed for adoption, their life would have just been different just as my life is different than yours.

I usually respond to questions about their placement by saying that their birth mom wanted to "give them more".  Those are her words, not mine, but they fit nicely.  It often feels vague and leads to assumptions, but I struggle with telling people it's just not any of your business so I usually follow up with trying to explain that it isn't my story to tell. It's her story and it's their story, but it's not mine and they can decide if and when they share that story as they get older. Heck, they don't even know all of the details of their own story yet to have a say in it.

So, for now, I don't share. It may feel vague and ambiguous. I promise it's not to make you ask more questions or wonder more, it's just to give them the opportunity to share their own story when/if they are ready.

I'm Glad I Didn't Know

I've said it before, but I'll say it again.  Sometimes being part of the CF community is hard.  When Elias and I were dating and when we first got married, we didn't really know anyone else with CF.  Facebook groups weren't a thing as far as I know, at least they weren't popular if they existed at all and honestly his health was not in a place where either of us felt like we needed that kind of support.

The longer we were married, the more various things came up that others didn't quite understand.  I wanted to connect with CF wives that were on the same infertility journey we were on.  Then as his illness progress, I wanted to talk about what we were going through and ask questions to those who had been there or at least understood where we were coming from.

Thankfully, I found another CF wife through a CF FB group and I have since connected with several groups for spouses of CF patients or lung transplant patients.  In these groups we have some light hearted conversations, but we also talk about some really tough things.

Things I'm glad I didn't know were in my future when we were dating, engaged or newly married.

Maybe that sounds selfish or naive and more than likely I would have just thought that that would never happen to us because we were both convinced that he would have his original lungs until he was in his 60's or 70's because that is what he was told growing up.  Now however, I see things through different eyes.  I see couples who are young and engaged and just starting out on this CF journey together.  Many of them with spouses who are still quite healthy and hopefully will be for a long time, especially with some new promising drugs that have come out.  I see these couples I think that I am so glad that I didn't know what was ahead and that I didn't always have that in the back of my mind or hanging over my head.

Had I known what I know now, there are definitely things we would have done differently that may have preserved his health longer, however I would have also lived with far more fear and uncertainty. Today I read stories of lung transplant recipients that are well over 20 years out from transplant and doing great which gives me great hope.  Then I read stories of those who never even make it to 5 years and my mind begins to wonder where Elias will fall on that spectrum.  I think of when I finish my first step in school in 2 years and what we can do after that, but then in the same thought I wonder where his health will be.

We are not supposed to live in fear and for the most part, I don't anymore.  I can't however turn of the part of my brain that knows how quickly things can change.

Facebook groups are amazing for support and I have built some incredible relationships with women in these groups.  I am so thankful they exist, but they are also a double edged sword and sometimes they can take away our ability to live a life of naivety and blind hope/faith, appreciating the present and not worrying so much about the future.

I'm glad I have them, but I'm also glad I didn't know.

It's About More Than Just Physical Health

As a doula, one of the things that I was taught is that giving birth is about more than just "healthy mom, healthy baby".  Of course every parent is happy that their baby is healthy and that the mom is healthy physically, but typically the saying "healthy mom, healthy baby" disregards the feeling and emotions of a mom who may be struggling with a birth that did not go the way that she had desired.  Her birth may have been traumatic physically or emotionally.  She may have wanted one birth, such as an unmedicated birth and ended up needing a cesarean and she may be struggling with that mentally and emotionally.  Yet, she may feel as though she can't bring it up because she and her baby are physically healthy and she is told that that is what really matters.

I see this a lot in the lung transplant community as well.  Someone posts something in a Facebook group that they are struggling with.  It might be medication side effects, fears of rejection and/or infection, difficult recovery, depression, anxiety, etc. and inevitably, there will be people who comment "yes I struggle with that, but I can breath!".  I think that every person in lung transplant groups value the gift of breath.  Those in these groups are either waiting for lungs, have received lungs or have cared for someone in end-stage lung disease and through the transplant process.

As Elias got sicker and every breath became more difficult, I used to pause as I walked by him sleeping on the couch to make sure that he was still breathing.  I saw his pain and his struggle and I hated the fact that even if he was ready to die, if his body wasn't ready, then his suffering would continue.

On the other side of transplant, I was initially angry that he needed new lungs at all.  The statistics haunted me and I felt like so much time had been stolen from us and our future.  Then came the long recovery, the change in life plans to ensure that I could care for our family no matter what his future held, the psychological scars, and the medication side effects such as hand tremors, horrible memory, nerve pain in his feet, sweating when eating and more.

I posted once about feeling as though the statistics were this cloud that kind of hung over my head, impacting so many of our life decisions and some people were supportive, but others of course were not so supportive, because well, at least he can breathe.

When people voice their struggles, they are oftentimes treated as though being thankful for the gift of breath and lungs means that they can't also acknowledge the difficult parts of transplant. As if those two things can't co-exist or at the very least, being able to breath should mean that the hard parts are insignificant.

Because of his donor, Elias and I have been given almost an entire extra year together.  He has been given the opportunity to spend more time with our twins than ever before and to develop relationships with them that he didn't previously have.  We can do things as a family, and this year he will not only be home for Christmas, but he will remember it, or at least he will be fully conscious (he still has a horrible memory ;) ).  He CAN breathe and that is something we are incredibly grateful for and something we will always be grateful for.  At the same time, we acknowledge the hard things that we have been through and the things that continue to be hard.  Overall life has continued to get easier and some medication side effects have lessened.  I have hope for the future that isn't always overshadowed by fear anymore.  At the same time, we continue to discuss big future plans with Elias' unpredictable future in mind so that we can prepare for that.

Yes, being physically healthy is a gift and is important. Being able to breath is something that one shouldn't take for granted.  However, that doesn't mean that we should dismiss one's struggles, fears and emotional health because those things are important too.

One year since transplant referral

A year ago in October Elias was referred for transplant. I remember that part of that brought us peace and clarity because we had been talking about transplant and if it was time, but we didn't know what his doctor was thinking. It was good to be on the same page and have a plan, but it also signified something else. It was the moment where our focus changed from him getting better, to knowing that he wasn't going to get better. From that day forward the focus became on keeping him as healthy as possible for as long as possible and to get him listed for transplant as he would continue to deteriorate, coming closer to death than I could have ever imagined.

Tears stream down my face as I write this and remember. We had no clue what the next several months would look like. I am still astounded by how quickly things moved and his disease progressed  after that.

One of his clinic nurses told us that normally, testing took about 6 months for one to be approved for transplant, thankfully his transplant clinic did a lot of that testing on site during his three day evaluation. We all knew he may not have 6 more months.

The following month he was evaluated and then his health took a sharp decline in December. He said his goodbyes, I felt so cruel keeping him alive. Telling him to wait just two more weeks until his insurance changed. Two weeks felt like a lifetime for both of us and I wasn't sure he was going to make it. I will never forget the day he told me that he was ready to die, that he couldn't do it anymore.

But he did make it and his new lungs came in the nick of time.

I would have never imagined a year ago that I would now be sitting here, and he would already be 9 months post transplant. I would never have imagined that he would have gotten sick so quickly. Looking back those months felt like an eternity with my daily fight with the insurance company to get him coverage that would allow for him to be listed. Yet at the same time, they passed all too quickly because I knew he needed more time. Losing two week to communication breakdowns at his transplant clinic felt devastating.

I often say, and you have likely read it before, that life is not what I imagined it would be post transplant, but it is far better than it was last year and for that I am eternally grateful to his donor, her family and to God for his lungs that came just in time.

When Being Part of a "Tribe" Hurts

As a Down syndrome mom and a CF wife, I have sought out support via Facebook groups. These groups are made up of Down syndrome mom's of a variety of ages, those that have adopted children with Down syndrome, those with multiples, and those parenting little ones born the same year as Asher. I'm also part of CF wives groups, Project CF Spouse and Lung transplant groups. Each serves their own purpose and I tend to turn to different groups for different questions and different support.

These groups can be amazing when one needs support and has a million questions that others with other experiences can chime in on. They have equipped me with questions to ask Dr.'s and given me hope when it was fading.

At the same time, they can also come with pain. When you are part of a group of mom's with children who are more prone to illness, many of whom were born with heart defects, there can be a lot of pain, sickness and even death. Each time I read a story of a little one who has passed away from heart complications, pneumonia or a common, seemingly minor illness that turned fatal, my heart breaks. My heart breaks for their family and for their loss. For the loss of a little life that will leave a gaping hole.

As a CF wife and a transplant wife, these groups can also contain a lot of pain. Like the Down syndrome groups, there are amazing stories of hope, encouragement, laughter, victory and joy. At the same time there are a lot of stories of sickness, concern, fear, and even death. And again, even though I may not have ever met these individuals in real life, my heart breaks and aches for them and their families.

There is also another reason though that being part of these tribes can hurt so much when we hear of these losses, and it is because we are all acutely aware that it could be us and our families. Not that we ever want to make someone else's loss about us, because it's not about us. It's about them and their family and their loved one. At the same time we might be affected deeply, profoundly and personally because we know that we could be one illness away from standing in their shoes, making the same unthinkable announcement.

Asher did not have heart issues like many babies with Down syndrome and has been quite healthy. The stories of little ones passing away in my mom's groups affect me deeply because I can't imagine losing one of my babies, but I don't often feel like that could be me at any time. It could be, because there are no guarantees in life, but it's not something I have to stare in the face every day.

Elias on the other hand is a different story. I always thought he was a really healthy CF patient until last year when his health plummeted faster than I knew was possible. This week, the loss of a CF spouse has affected me deeply and profoundly. Maybe it's because there are similarities in their family to our family. Maybe it's because Elias was so close to not getting his lungs in time or maybe it's because I feel our future is less guaranteed than others. This family's loss is not about me and my grief or how I have been affected in ways that have surprised even me, it is about them and their grief and their loss and how they will be the ones that have to move forward, yet we still hurt for them, with them and sometimes for what that would look like if it was us.

Sometimes there is so much grief and pain and hurt in the "tribes" where we also find so much support, that we have to step away for awhile to keep ourselves mentally healthy. It's not healthy to live in fear of what if when one has a healthy, or mostly healthy, child or spouse at home. It's not healthy to frequently grieve possibilities that aren't happening or grieve a person that is alive and well.

Having these groups offer so much: hope, support, encouragement and understanding, but sometimes we have to also take care of ourselves and our mental health and take a step back for a bit.

Transplant and Infertility

Infertility awareness week begins today. Most days, infertility is far from my mind. If you have followed our story for very long, you know that it wasn't always that way. In fact it used to consume nearly every thought, but now I can go quite a long time without thinking about fertility or infertility. Then, out of nowhere, that familiar sting or pang of jealously will return, catching me off guard and making me wonder, "where did that come from?".

I have always wanted more than two children. When our twin boys joined our family I was indescribably grateful for the blessing that they were to our lives and family, but I was also convinced that more children would be in our future. I had plans and hopes of eventually adopting internationally and eventually trying again for a biological child (more for the experience of bearing a child than having a child with our genetic makeup). I think I was convinced that our family couldn't feel complete with two children, or maybe it was more that I didn't think it could feel complete if it didn't look the way I had dreamed of it looking long before we had children.

As the months passed with our two sweet boys, I came to the conclusion that despite the fact that I would love more children, I could indeed be happy with our two boys and our family could be complete with the four of us. Maybe our hearts were being prepared for just that.

Last year, before we knew what was to come, Elias and I had started talking about trying one last time for a biological child and when we might  do that. He wanted to do it sooner than later. I felt like I was in the trenches with two two years and couldn't imagine adding anymore children to our family. As he got sicker, we both new that this was a conversation that was going to be put on hold, possibly permanently. Our focus became about keeping Elias alive for the two little boys we already had. I had no idea how fast things would progress with his illness, all I knew is that caring for two toddlers and a husband in end stage lung disease was more than I could handle and a third child had no place in that. We didn't even know if Elias would receive a transplant to be around to parent another child and raising three children as a 29 year old widow also didn't sound appealing.

So now what? He has received his transplant. One friend described it as "life-extending" when referring to her own husband's transplant, which I really liked. It acknowledges the gift of extra time while also acknowledging that this is not a cure nor it is a guarantee. There are those that do choose to add children to their family after transplant. There are couples that do IVF or adopt if the husband has CF and there are women with CF who carry a child themselves after transplant. The reality is, for us, with Elias having CF, we are still infertile and now we have the added layer of him being post double lung transplant. We now know what it is like to have children and have him be very sick. We are well aware that that could happen again in the future. We are also well aware that he could have another 20-30 years ahead of him where he could not only parent another child, but watch all of our children grow into adults. This also means that IF we choose to try and have more children, we actually have to choose and be very intentional about that. We can't be a couple that says, whatever happens, happens. We won't be one a couple that is blessed with a surprised pregnancy. We have to very intentionally and definitely decide if adding more children to our family is right for us or not.

Infertility is a fickle thing. It can consume thoughts, or it can lie dormant for awhile and sneak up on you. It can feel helpful when one knows for sure that they do not want children or any more children or maybe just no children during a certain season, but it can be unbearably painful when one would give anything to be a parent or have one more child. Now we find ourselves in a season of life where many of those our age are growing their families and we will be deciding if we will choose to say that our family is complete or if we will attempt to add more children.

Finding A Balance

One of the topics that comes up when one is being evaluated for a double lung transplant is a list of things that one will need to avoid after transplant. We didn't get a comprehensive list at that time, were informed that with the patient being intentionally immunosuppressed for the rest of their life after transplant, to keep them from rejecting their new lungs, there are precautions that have to be taken.

Interestingly enough, each center has it's own standards and list. Some sound a bit irrational such as not being around young children at all, others are more reasonable like just don't let young children climb on you and cough in your face when sick.

There are mixed approaches in the post transplant world. There are some that say my new lungs are a gift and I will do anything and everything to protect them, that includes going to extremes if I have to. There are others who say, the point of getting a transplant was to live, so I'm going to do just that, even if that means taking risks.

I can be hard to find the balance between living in a bubble and throwing caution to the wind. Right now we go out in public, but Elias wears a mask if we are indoors in a public place such as the grocery store or an indoor play place. His center would prefer he not return to work for a year to build up his strength and focus on appointments, but he will also be the most immunosuppressed for the first year, so avoiding germs in the workplace might also be wise. Some go back sooner, others aren't able to return to work at all. We use extra caution washing fruits and vegetables now and despite his strong desire for cooked sushi, we will not be partaking in even that for the first year just to be certain that there was no cross contamination. If I get sick, one of us might sleep in a different room and we carry hand sanitizer everywhere. I used to be the anti hand sanitizer type person, but no more. I don't yet use any essential oils on Elias so that I don't stimulate his immune system to reject his organs further and we have told friends and family that if they are sick, they unfortunately won't be able to visit.

We will still be able to travel to places that we have dreamed of visiting. We can continue enjoying family traditions like going camping, he just has to be careful not to sit in line with the smoke from the fire. We were told no real Christmas trees, but other centers say they are fine. That is a choice that we will have to make. Will not going to cut down our own tree take away from Christmas and if it does, do we decide that is one area that we are willing to take a little more risk? Especially since centers with a more strict set of rules didn't warn against that one?

You can ask on forums and get a range of answers or almost any topic, each patient has to decide where their line is. Do the rules in place allow patients to feel as though they can still live life since that was the point of transplant in the first place, or do they restrict them to the point of feeling that they have actually lost a quality of life from going through with the surgery?

We are finding our own balance, figuring out where to take extra caution and what means really living and making the most of this new life.

Let's Be Honest

We've been in the hospital for a long time. Nearly 3 months to be exact. 3 months of ups and downs, good new and bad news, 3 months of hospital food and sleeping in a recliner most nights and 3 months of a lot of sitting. With a lot of sitting comes a lot of time to think.

As I sit and think, I think about what I want to be when I "grow up". I love what I do. I love being a massage therapist, doula and placenta encapsulation specialist. I love the flexibility of being a small business owner and setting my own schedule, but I also can get overwhelmed with all that comes with that.

Even more than that, I realized this past year that as of right now, I can't support our family off of my small business income. The hope would be that I wouldn't ever be in the position again to have to support our family off of my income alone, but that might not be a reality for us.

The thing is, lung transplant does not have great success rates. We were told to see the statistics, but not dwell on them because CFers tend to do better than other transplant patients because they are younger and stronger at the time of transplant. But I'm a numbers persons and when I see the numbers, it's hard to unsee them. 5 years post transplant only 50-55% of patients are still alive. That's the flip of a coin. I'm acutely aware that there may come a time again when I have to single handedly support our family financially and right now I can't do that.

So I've been thinking a lot about other areas that I'm really interested in. I've been thinking about returning to school for awhile so that I actually have options if I want to enter into a new career or if I find myself in a position where I have to support our family on my own.

We have been incredibly blessed to receive so much support that we can live here in Pittsburgh until Elias is cleared to go home and not have to stress about how we will pay the bills and rent both here and in NY. It's been such a gift and incredibly humbling When Elias had to stop working in August, we only had enough finances to get us through a couple of months at most in NY, I wondered how we would get by and I don't want to be there again if we don't have to be.

But there is another thing, something that is even more crucial. Health insurance. As a self employed individual, I do not get employer based benefits and Elias has worked in positions where he either received no benefits or part time benefits that were not comprehensive and left him "underinsured". With the changes that are happening in health care in our country, having employer based coverage might be our only option and that is if they don't deny him coverage based on his preexisting condition.

So I'm thinking about going back to school, so that I have options for a career that I will enjoy and that can hopefully provide health insurance for our family and will allow me to support our family on my own if need be.

"What Do I Know of Holy?"

Over the past year, my faith has been challenged in ways I didn't expect. I've learned that I understand very little about God and his ways and I've had this desire to explore that further, to "figure out" who God really is beyond what we are told or taught. To really understand the character of God. What I've found is that I have more questions than ever.

I tend to be analytical. I like things that are more concrete like math and certain sciences like myology. With math, there is one answer. There might be multiple ways to get there, but there is *usually* one right answer. With myology or muscles, each muscle has attachment points and actions. A muscle cannot move in way that it's not designed to move and function. It's concrete and easy for me to understand, it's logical and can be rationalized, but the abstract stuff is harder. The gray area where there is more interpretation is harder for me. It leaves me uncomfortable and with a lot of questions that don't necessarily have answers.

I have learned this past year that I don't want superficial answers or a superficial understanding of God. I want to go deeper and I struggle to find comfort in platitudes that are well intended, but not necessarily encouraging. I want to peel back the layers of the character of God, but I also want to be able to be at peace with having a God that I cannot analyze or comprehend. I want to be okay with having questions that have no answers, but I also want to be okay with being uncomfortable that sometimes there are no concrete answers.

When Elias got his transplant just in time, many people talked about "God's perfect timing". We tried to analyze and understand and rationalize why we had such a struggle to get to that point and why those lungs were meant specifically for him. That maybe if we hadn't had those struggles he would have had lungs that weren't as good of a match, or this or that. But God cannot be rationalized.

While we were waiting for insurance and transport it was also suggested that all would fall into place in "God's perfect timing". But what would have been said if he was one of the 22 people who die every day waiting for transplant? What if lungs never came and I had become a widow at 29 with two year old twins? How would the body of believers have supported me in that? We've also been told that how sick he was after transplant and his long recovery is why they like to transplant people before they get this sick. Was that all part of God's timing and plan, to make him wait while he got sicker and result in a more difficult recovery, or did God keep him alive long enough to show up in the nick of time with a good match?

We so want to understand God and rationalize every part of him and how he works, but maybe we're not meant to. Maybe we're meant to know and trust that in the good and bad, easy and hard, sickness and in health that God still good, still sovereign and that he still loves us in ways that we can't understand.

I've had to remind myself many times through this process that God actually loves Elias more than I do and that he understands and knows our suffering, our grief, our anger, all of it. That even when we feel alone, he has not abandoned us. This season of suffering has lead me in some ways into a deeper relationship with God, while also driving a divide between God and I. A divide that with time can be healed and repaired.

Then again, maybe I'm completely missing the mark.

"To begin with, that you can't grasp the wonder of my nature is rather a good thing. Who wants to worship a God who can be fully comprehended, eh? Not much mystery in that." - Papa, "The Shack"

A few months back, when we were just experiencing the tip of the iceberg of Elias getting sicker, another CF wife posted in one of my Facebook groups, asking if any of us ever felt like we at times were losing ourselves to our husband's disease. At the time I didn't understand. How could I lose myself to a disease that wasn't mine? I could see how he was slowly losing who he used to be, or rather, that who he was was slowly being taken away from him, but me? I wasn't losing myself to this disease. I didn't think that way mine to own.

But now, now I get it. I get how as a caregiver, you can lose yourself to someone else's disease. Your entire being becomes about caring for that person and fighting for them when they can't fight for themselves. Endless phone calls that make my blood pressure go through the roof and make me want to pull every single hair out that isn't already falling out because of stress. Trying to balance being a mom and a wife and a small business owner. Spending countless hours filling out paperwork on his behalf, driving him to Dr's appointments, sleeping in recliners in his hospital room or hotels or guesthouses for days at a time, dropping everything at a moment's notice to take him to the ER, and then trying to at some point go home and spend time with our kids, while relieving family who have been taking care of them, while he's stable enough to do so (I don't have a great track record with that by the way). I eat whatever sounds good and is available in that moment (and is usually unhealthy) and hardly ever get any exercise. To exercise I need to convince the boys that they actually enjoy walking in the stroller or go when someone is available to watch them. Practicing self care feels nearly impossible, there just isn't enough time left at the end of the day. Oh and did I mention that I do actually work occasionally?

Some days it feels like this is all I am, that there isn't time for me anymore. There is truly no truer test of love than walking the road of chronic, life threatening illness. You simply cannot fight this hard, day in and day out for someone you don't love deeply. I do it because he deserves it, but also because life without him is almost unimaginable, though I do my best to convince him that we will be fine if things don't go the way we hope, because with time, we will.

I shared with a friend tonight that this all seems so surreal. That last year at this time we had no limitations as a family and this year we are facing a double lung transplant as our only option for a future together. It's still hard to comprehend how his lungs changed so very fast, but I still hold out hope. Each time I talk with someone who has had a successful transplant, my hope grows and I cling to that because I see what we can be given. I'm not naive and I know that our story could be different, but for now I cling to hope.

Enjoying the extended baby phase

Lately when I pick up Lucas I am struck by how solid and long he feels. He's not particularly tall, in fact he's rather short, but to me it feels like he is all legs. He now speaks in sentences, is pretty much potty trained and tells me "no kisses!" as he wipes them away. And even though he is my baby, he is no longer a baby. At nearly 2.5, he has grown into a little boy who desires independence, and while he still needs his mommy, he likes to remind me that he can do it on his own.

Then there is my sweet Asher. Asher who doesn't yet have many words and still has that new toddler walk to him. Who loves to wave "hi" and "bye" at everyone he sees and can light up an entire room with one of those single words. He loves to kiss everything and everyone right now, making everyone he meets feel like the most important person in the world. And petit, not yet 30 inches tall, he walks up to me saying "ma, ma, ma" and stretching those little arms up at me to pick up him. When I pick him up, his still soft body melts into mine and I get to bask in the extended baby phase just a little longer.

While I don't rejoice in his delays, knowing that everything comes just that much harder for him, I know that I am allowed to enjoy this little extra gift that comes with that extra 21st chromosome because it won't be long when he will be telling me "I do it", or "I walking". When his little body will start to feel a little longer and more solid and he will wipe away my kisses. Today I get to enjoy having my baby be more of a baby a little bit longer.

The Gift of Time

The weekend before Elias was admitted to the hospital, we began talking about him going on disability or at least cutting back to half time work. The humidity was heavy and it was getting harder for him to breath. I called the Cystic Fibrosis disability attorney to talk about the process so that we could be prepared if we chose that route based on his Dr's appointment the following week. Money was a concern since Elias was our main source of income and received no time off, so he really wanted to work at least 20 hours a week (preferably 30). I wasn't convinced and said 20 should be his max, but disability might be a better option.

However, we never made it to that appointment. On Thursday Elias was admitted to the hospital in Syracuse and we both knew in that moment that he really needed to go on disability. It's humbling to live in a culture where men are expected to provide for their families while not being able to work. Even though women work outside of the home more and more, if one parent stays home, it's usually the mother. Disability has been hard to accept, but I reminded Elias that we have been given a gift. The gift of time. Not everyone gets the gift of time, but we do.

One of the beautiful things that has come out of Elias being home the past two weeks is his relationship with Lucas is changing and growing. Lucas has always been all about mommy. Over the past two weeks, I've been working on growing my business so I'm home a little less and Elias is home all the time. He's now starting to ask daddy to play with him when before it was all about "mommy play". It's been really sweet to see.

A couple of weeks ago I shared a blog post about some of the things I was thankful that Elias and I were able to do before his health declined this year like our year in Gambia, going to the Grand Canyon, even the years we struggled with infertility and had time for just us.

Today I'm thankful for simpler things.

Earlier this summer we went to Water Safari. Our tickets were paid for by The Northern Regional Center for Independent Living and there wasn't a rain date. The weather wasn't looking promising, but we got up in the morning and went. We were blessed with a dry morning with comfortable temperatures, just long enough to fit in most of the rides we wanted to try before lunch and nap time. As we finished our lunch, the rain came, but we were already planning on heading home so that the boys could sleep in the van on the way home. We had gone into this day saying that if the weather didn't work out we could always go later in the summer. Lately I've been seeing a lot of pictures of people who have been going to Water Safari before the summer ends and I have been aware that Elias could not currently go and participate. His health wasn't great then, but he was stronger than he is right now.

Today we went to the zoo. It was hard for him and we knew going in we might not be able to see the whole thing. He pushed through, wearing his oxygen, and even though he was quite tired by the end, he was glad he went. I am so thankful for all of the memories we have made and continue to be able to make. Life has taken on a new normal for us and what we can and can't do will likely fluctuate throughout the coming years, but we will choose to continue to make memories however we can with our gift of time.

Choosing to be thankful

This past winter/spring was a hard one for our family health wise. Most of you know, my husband Elias has Cystic Fibrosis. CF is a progressive, genetic lung disease and as we are learning, things can change very quickly.

As we've been adjusting to what we consider to be our new normal, we've also been grieving the things that we can no longer do as a family and what he can no longer do as an individual. However, tonight we were talking about all that we are thankful for and all that we have done.

We are so thankful that God called us to live in West Africa when he did. Six years ago we were living in The Gambia with no concerns about hospitalizations and IV antibiotics. We mainly had to focus on getting Elias' meds to him via visitors and making sure his meds stayed cold during times of unreliable electricity. This was an amazing time for us as a couple, relying on God and each other. Spending basically every waking hour together without the stress of jobs, finances or health insurance. This is the time when our infertility journey began to get a little bit more difficult emotionally, but overall it was a really rich time for us. As much as I have dreamed about the possibility of going back longer term, at this point, that is no longer an option for us as a family. I am so thankful that it was at one time.

Three years ago we chose to put plane tickets on a credit card and go to the Grand Canyon with my parents and my sister and brother-in-law. We were able to walk quite a bit and hike part of the way into the canyon. I wasn't sure if we should go. I wasn't sure if we should spend the money and we had also began the adoption process and we knew that calls for babies can come at any time. We chose to go and I am so thankful that we did. We just paid off the debt this past year from those tickets, but I don't have a single regret. The following summer the boys had joined our family and now Elias would no longer be able to do the hike we did. I am so thankful for that experience and those memories.

It took us 5 1/5 years to become parents. Most of those years I hated our infertility. It was another thing that CF robbed us of (98% of men with CF are infertile). But, I also tried to remember that we might not have the retirement years that so many couples get to travel and to have their time as a couple. I can now look back and be thankful for those years. Those years that allowed us the travel opportunities I listed above. Those years that we had just us to connect as a couple without the demands of children on our time. They weren't easy years, but they were our years.

We don't know what the future holds. A cure might be right around the corner. Or a clinical trial may stop the progression of his disease. He may be stable for a number of years or he may end up needing a double lung transplant. CF is unpredictable and I'm growing to dislike this disease more and more. Despite all of that, I will be forever thankful for the time we have had and the memories we have had the opportunity to make. We are thinking about traveling again, sooner than later, to make more memories before things change again. It may take us another 2-3 years to pay it off, but I know that we will have no regrets, we will only be thankful.