And so we go... one step at a time up the mountain

I have been home now for a few days - a week? My memory is still crap, so forgive the lack of clarity. Each day presents its challenges, though all things considered I am getting stronger and making progress. 

This journey isn't for the faint of heart, and I can imagine and see why some might give up instead of standing up, and there's no judgment there. The days are long, the nights sometimes longer, but each new morning is filled with possibility. 

And along the way is the love and support and encouragement from friends and family, who are praying for us and sending healing thoughts. 

How could we walk through this life without that strength? I don't know that I could. What about you?
 

Onward and upward

Oh, what a whirlwind this is! One moment I'm recovering, the next there's a tiny setback, so we persist through those. I won't let tiny inconveniences stop me, as exhausting as it is to always look up, look forward, keep pushing. 

I don't have much more to impart at this point. I'm just happy to be hope finishing my recovery, clean of viruses and funguses and anything else that could derail me. And I'm grateful for each of you who follow the journey and join with your prayers. It takes a village to raise a child... and a village to help a grown woman heal and thrive once again. 

I know it'll be a while before I can dance, so for now I stick with walks and exercises to strengthen and get me there eventually. 

It's hard to live under the illusion that you're mostly in control to realizing there's nothing you actually control except your attitude and how you respond to things.

So we keep fighting, one foot in front of the other, one bite after the next, working toward independence.

Onward and upward!

Where have I been these past months?

I have been "asleep" for the past few months, or more accurately, in a mental fog so thick, you can't see your nose. I am waking up in the hospital once again, learning I've been here before, and finding out there's all sorts of issues I have to face, mainly an HHV6 infection (human herpes virus 6). I have a pole with meds and fluids and who knows what else next to my bed. And I don't remember anything from round one. 

Honestly, I don't think I want to remember any of it. By all accounts, it was the fight of my life. Well, I find myself still fighting. I am a ghost of who I used to be, down to skin and bones. Hospital food isn't too bad, unless you're dealing with food aversion (why not add one more thing to the list?) I am told I wasn't so far off last time and managed to recover, so that's the goal now - get home to recover. 

I am coming out of the fog now, though I find myself in a mental loop where things repeat themselves over and over again, and I don't know which instance is reality. Yes, that's quite a bit of fun. According to me, I've spoken to my husband seven times this morning... except it's only been once. 

As I sort through all this and work on grounding myself, I also look at the time I've been here. Ten weeks so far and counting. Ten weeks I mostly don't remember. It really is difficult to keep a good attitude and hope alive when you're in the hospital this long. And yet, there's only one way forward - one step at a time, one foot in front of the other (ok, truth be told, I'm walking with my feet spread out these day to try to stay balanced. My grandma would be aghast! Ladies walk in one track).

My husband, my dad, and my girls have been troopers through all this. I rarely am without a family member in here to keep me company for a little while, in spite of the 1.5 hour drive, traffic, and all those wonderful surprises you can find in freeways in Southern California. 

I've been so touched by the many messages and support. They really do lift me up and help me keep fighting. If I don't reply to everything, please understand it isn't a lack of willingness, but a lack of bandwidth. 

As things progress, I hope to continue with updates through here. And I hope they progress enough that I can go home in the next ten days or so. The finish line is visible, please don't let it shift on me yet again.

Emotional Marathon

I am exhausted. I feel like I've been running on this emotional merry-go-round for half of the year, from diagnosis on February 8 through today. I live in limbo, waiting to move forward and get back to my life, and trying at all times to make the best of a shitty situation. 

There, I've said it. It's a shitty situation. 

My transplant schedule has been pushed several times now. First, it was to be on July 5th, but the donor fell through. Then July 15th pending donor confirmation. Then 22nd with donor confirmation. Then 26th because I'm so much stronger than I was (yay!) that I can handle radiation (that's a mixed boo and yay, because ultimately it's a good thing). Then it was August 2nd because, surprise!, I tested positive for COVID. I've been chasing a negative test and got one on Thursday, but City of Hope's swab goes as far as your brain (or so it feels) and detected lingering virus, so yes, you guessed it. Pushed again to August 9th pending a negative test.

So today I rant and complain and cry and feel angry and frustrated... and that's a lot of 'ands' without any commas in between. My English teacher would fail me. 

The days blend into each other, and I feel like I accomplish nothing. It's a study in patience, a virtue I don't have and one for which I try not to pray - the Lord has ways to send you reasons to become patient instead of just injecting some of the stuff into you. 

It's a study in trust, as I try really, really hard to let go of the things I can't control and trust that God has a reason for allowing this to happen, and his reasons always will be better than mine. I'm on a schedule, and He reminds me I can't control life. I hold tightly onto the wheel instead of letting Him drive, knowing fully well that I don't have the roadmap and without it I wouldn't know where to go. 

He's cleared the way for me, surrounded me with people who are integral in this journey, placed me with an amazing medical team, and I think He's asking me to let go, to rest, to go to Him, as I'm weary and burdened and need rest. He's asking me to take His yoke. Some days, like today, it's harder. 

It is hard to reach deep into oneself to find the strength to prepare for the next step. I don't want to go back to the hospital. I am traumatized from my first visit, which as we all remember was less than ideal and brought with it serious complications. That said, I cannot sit here forever in eternal pause. So, I dig deep in preparation, and while I know I'm not ready, I mentally get myself there. And it gets yanked right from under my feet. And here I find myself, asking why I have to wait. 

Until I got COVID, I had not asked "why me?" Self-pity is not conducive to anything good. Today I didn't ask that, but I asked why. I felt deflated, defeated, and at times like a total ass because at the very least I woke up today and I have a fighting chance. 

Summer was the better schedule, before school starts, while Larissa is home. I wanted to be discharged before she goes back to college. Instead I get another week with her here before she leaves. That's the silver lining. 

And maybe I can learn to finally let go of the wheel and take a rest, trust the process, and hold on to His hand while he leads me up this very steep mountain, where the terrain is uneven and difficult, where the fog is so thick I can't see beyond my nose. He sees. That should be enough. 

My word this year has been hope. It's chased me from the moment I was diagnosed. It's fueled me and given me wings. It's seen me through the worst of it. 

Now I have to let go of the anger, frustration, disappointment, and focus on hope. And on all the things I have for which I am grateful. Even in days like this. 

Surprise!!! The good, the bad and the ugly.

As I get closer to my transplant date on July 22nd, I find myself trapped in an emotional loop and working on letting go of the things I can't control. It's like a constant game of "what now??"

The Good: So, what now? I had my clearance appointment with my bone marrow transplant (BMT) doctor, who again is one of the best under whose care I could be. 

He was pleasantly surprised at how much progress I've made since he last saw me (a few days after discharge in late March) and how much stronger I've gotten. I look good! I have good energy! I'm no longer looking frail and weak! I'm still young, under 55!

Yes, I have made considerable progress, gotten stronger, put on the weight I'd lost, gotten my hair back, keeping a positive attitude as much as I can, and leaning on my faith every step of the way. 

The Bad: Well, maybe it's not really bad, but getting stronger comes with the news that I can now handle total body irradiation (TBI), which I was sooooo happy to skip when I saw it wasn't on the schedule.

What this means: a mixed bag. It does reduce the chance of relapse after BMT, improves engraftment, and it does attack any potential cells that might have started to grow in my central nervous system (CNS), though that was negative when I had my lumbar puncture and a dose of chemo was administered. It does increase the chance for other cancers and cognitive issues down the road, though I'm told that is minimal. The risk/benefit analysis comes out higher on the benefit side.

How much higher, you ask? Well, what a great question. And here's where things get tricky - there is NO data. None. Zero. Zip. Especially considering that whatever limited data there might be is all lumped together and not segmented - age groups, physical status, comorbidities, cytogenetics (mine are not good), and so forth. 

My daughter asked me, if there is no data, how do they know there's an actual benefit? Smart girl. I'll be asking the radiation oncologist that. 

The Ugly: Radiation will suck. I will be admitted two days earlier than anticipated. I might lose my hair again (ok, that's just an inconvenience and not a serious concern). Side effects are the pits, and I've pretty much coasted so far (let's not bring up c diff, that was a totally different ball of wax). I will be in the hospital at least one more week longer than anticipated after BMT. Relapse is still possible. 

The Balance: I had my pity party yesterday. Many tears flowed, several tissues were used, and there were moments in which I felt almost nauseous. Could I live with not going through radiation and not having tried everything I could to fight this? Can I put aside the constant question of whether the leukemia will come back, waiting for the other shoe to drop? Can I buckle up and go through radiation? 

No, maybe, yes. 

I am physically stronger than I was and emotionally stronger than I think. I have responded well to therapy. I was in the clinical trial with a drug that is very promising. Aside from the cancer, I am in great health. We found not one but three 100% matches. The odds are indeed stacked in my favor.

The Internal Battle: A dear friend of mine recently reminded me: "You know, Jesus is in the boat with you". To which I replied: "Yes, but HE'S SLEEPING!!!" We laughed, she said, "but he's in the boat." 

Well, here I am, with a death-grip on the rail, afraid of things I can't control. I am working hard to let go of said
rail and instead go and rest next to Jesus, who after all is at the wheel. My prayer these days is still for complete healing, but also to be able to remember all the consolation He's already sent my way, so I can fight those moments of fear and doubt and cling to hope, work on trust. And yes, I do know that trusting in God's plan is the hardest of all, because it means acknowledging that His plan and mine might differ, but that His plan is always better. 

My spiritual director told me maybe this weight I'm feeling is not so much the weight of the world but the weight of love, of all the prayers being offered for me, of God's love for me, and maybe I just need to stop and let that love in, accept it, all of it. 

So, help me Lord to let go of the rail and rest in you. 

Limbo, expectations, hormones and other random thoughts

Disclosure: In case the title didn't give it away, this is a long, rambling assembly of thoughts and feelings. You've been warned. 

Limbo - it feels like floating sometimes. Days run into each other, morning turns into night without much to report. In this limbo there is too much time to wonder, project, feel and hope for. There is the constant need to remind myself that this journey is long, twisted, and requires me to take it one step at a time. There is too much time to hear about other stories, other journeys, some with the outcome I hope for, some not so much. And thus, there is much time to worry if I let myself feel that. For the most part, I refuse to. 

On the other hand, in this limbo I also project - I plan for the future, for when this is behind me, for the things I want to do, like a trip to France with good friends, going back to Hawai'i and visit turtles, taking a cruise for our 25th anniversary, celebrate three years of birthdays that didn't get properly celebrated (it will be epic!), and so forth. 

I also have to think of the possibility, because there is always one, that I may find the end of my journey sooner than expected. And those moments are driven by motherhood. My two girls. If I were to not be here, what do I need to tell them that can't be left unsaid? I remember the hospital days when I was so weak and out of it fighting c diff, and thinking I should've written letters for them, letters I wouldn't get to write in my weakened condition, things I wouldn't get to say if things didn't turn around - and that was a very close reality I'd rather not go through again. 

So I find myself starting these letters, which take me to projecting where I don't want to, getting into a funk, and pulling myself out of it. I have my girls here this summer and plan to enjoy that, and maybe here and there give them some pearls of wisdom, and here and there find the time and emotional fortitude to get through letters I hope won't be needed, letters that can stay unopened for years to come. 

In this limbo, I'm also learning to adjust expectations. I think the fact that I am tolerating chemo and treatment so well has led me to believe that everything will be achieved in the same vein (ok, I'm also an overachiever) - so I should achieve full remission after this last treatment, which wasn't the case. I should then have a couple of weeks to recover, a "mini vacation", which won't come. So, after a brief moment of disappointment and tears, I refocused on the important and positive news. I am responding to treatment. I am in good shape to move forward. Going into the next round of treatment will get me there and give me the best starting point for a successful transplant. 

I told my doctor he needed pom-poms as head cheerleader. He was so good, so clear that I'm doing really well, so positive that I'm on the right track. I am so blessed to have a good team, to be responding well, to be at home with my family and eating my own meals. I have no right to complain, and I have every reason to continue to be grateful for the blessings, for each new day, for the ongoing prayers and support that come from so many, for the frequent signs I find along the way through which God reminds me He is by my side every step of the way. 

I feel well, I'm getting stronger, I'm gaining weight (in a good way), and I'm also getting hot flashes. How's that for a segue? Yes, hot flashes! Every woman's dream... the bad kind. Hormones are so underrated. When you stop producing them, you figure that out. Hot flashes that sent me into the fridge the other day, only to find out that doesn't really work. And moods... my husband's road to holiness comes from putting up with a bitchy, unreasonable wife more often than either one of us bargained for. Though my job is to help him get to heaven, this is probably not how we envisioned that journey. 

And let's not forget the unspoken truth of growing facial hair that wasn't there before. This is adding insult to injury. Dermaplaning might be promoted for "peach fuzz", but let me tell you it's excellent for not-so-subtle facial hair. Calling it a beard would be hyperbole, though sometimes it feels like it. Gratefully, my eyes aren't as sharp as they used to be. Sadly, my children have eyes like hawks and find it incredibly funny.

The journey started with a dramatic "BAM!" and has eased into what I only hope isn't the eye of the storm. I know times to come will be harder, as I continue to climb this very steep mountain. My eyes remain on my feet, one step at a time - I might be a coward after all, with a bit of hiding my head in the sand. At the same time, though it sounds like a contradiction, I keep the chin up, because as I've come to say, you can't fight if you're not looking at the enemy straight in the eye. 

I keep fighting, I keep praying, and I keep keeping on. Thank you for the prayers, good vibes, positive thoughts, support and love. I will never find the words to adequately express what it all means to me and how it propels me forward.

About the Hair...

Yeah, about the hair. I feel compelled to say something after posting a picture of me with my bald head (though actually there is hair coming back in, but you can't really see it). 

I know that hair for the great majority of women is tied very closely to their identity. How could it not? It frames our faces, defines our looks, and in many cases it's a source of pride and certainly a source of vanity. In spite of most of us having love-hate relationships with our hair, it is so tightly tied to how we look that it becomes part of who we are. 

For many years now my hair has been a source of experimentation. While most women tend to change their hair at tipping points in their lives, for years now I've been changing mine every couple of months to avoid getting bored. Short, bob, mid-length, and even long when I can muster the patience for it. Then pixie it is with one swift salon appointment, and back we go again to play with it. I don't think I have been attached to my hair since my teenage years. 

I knew chemo would take it, though I expected it to happen later in the treatment. Instead, mine started to fall the week after my first round. I've always been told I have a lot of hair, and I didn't really believe that to be true until it started to fall. Copious amounts were left in the shower and on the comb, and I still had a head full of hair. I resolved to get it cut short as soon as I left the hospital. As many of you know by now, that hospital stay was extended beyond anything I could've imagined, and at some point during that stay a nurse helped me cut the whole thing off.

I'm completely at ease with my bald head - probably because it turns out my head is fairly round and symmetrical. I posted a photo of me bald without expecting the overwhelming response and encouragement that followed - and I must confess I don't feel like I deserve much of it. After all, it wasn't so much proof of bravery as it was just an update. A "this is what I look like right now" kind of statement. Still, I am grateful for the support and the encouragement, and all the compliments - if a girl has to fish for it, I guess a bald head is a good lure! 

I don't post this to minimize the struggle of those for whom hair loss is another kick in the gut. After all, I've had other ways in which I've felt that kick, that loss, and that struggle. 

My struggle has been the loss of muscle tone and physical strength. I went in strong, swimming three times a week, dancing, walking, jogging, lifting weights. I came home with a walker, unable to lift anything heavier than my phone, and most certainly unable to keep up with exercise. And as I type this, I don't know when I'll dance again. 

Hair grows back, that's the good news - and I'll be a silver fox. And physical strength? I can get that back too, though it will take some time. I am putting in the effort - hey, I can now do bicep curls with 5 lb dumbells instead of 2 lb ones, walk a mile in 18 min and walk up the stairs! When will I dance again? That, I don't know. And for me, that's a real kick in the gut, but I assure you I will.

So friends, thank you for the encouragement and all the beautiful words. I will post a picture of the new hair when it comes. And when I dance again, you will most certainly know. 

I Got Knocked Down...

I got knocked down. Hard. And I will be the first to say that it is a lot easier to be positive, stay strong and cling on to my faith when I'm standing. Instead, I found myself on the ground, and like a stray dog, being kicked while I was down on top of everything else. 

However, as the song says, "I get knocked down, but I get up again. You're never gonna keep me down." No, you're never gonna keep me down. It's taken a lot of fortitude and effort, and yes, a lot of that faith that at times seemed to betray me, to get back up and get ready to continue fighting.  After all, you can't fight your enemy if you're looking down. 

At the risk of boring senseless whomever is interested in reading this, I will go on and tell the tale. Fair warning: it's going to be a long entry, since I haven't updated this in a couple of months. It also might contain too much information, but then I've never been that shy. 

My last post left us at the point of waiting for the chemo to do its thing and drop all my values, which would lead to me being defenseless and at high risk for infection. The good news is I reached remission after that round. The bad news? I wish I'd ended up with a cold, but instead I got hit with the mother of all infections, the one and only c diff. In my case, because as my husband says I don't like to do anything half-ass, I ended up with megacolon. I had doctors in and out of my room - internal medicine and oncology were expected, and to them were added infectious diseases, gastroenterology, and surgeons.

Surgeons, you say? Yeah... they watched me like hawks for three days and were a hair away from taking me into the OR to take out my colon. Aside from the long recovery and life-altering implications of such a surgery, there was the question of whether I could even survive that in my condition: neutropenic (no immune system defenses to speak of), low platelet count and anemic. I was getting blood and platelet transfusions, and everyone around me looked worried. I was miserable and fairly out of it at this point, so weak I couldn't get out of bed or even hold my phone. But even in this state, I knew surgery was a bad idea. 

I was given shots to stimulate my bone marrow, so I could get some defenses and help fight the infection, which meant potentially poking the sleeping bear. Eventually everyone wised up to the fact that my small intestine wasn't working, so taking oral medication for c diff was pointless. That also meant my stomach had to be full of food that never made it through. I had an NG tube put in (a tube up my nose and down to my stomach), which I will say was one of the most traumatic experiences I've ever been through. And I had a rectal tube added to the mix to help empty my colon. Medication had to be delivered that way as well, since orally wasn't working. 

Add insult to injury, and when you feel that not much more can be taken away from you in terms of your independence or dignity, you end up in a ginormous diaper because you can't get out of bed and take care of yourself in the most basic of your needs; someone else has to take care of you.

And to make things even more interesting, I had two different PICC lines, both of which threw clots, so my 44 days in the hospital were spent mostly with peripheral IVs that had to be redone over and over again, because my veins won't last. I am what they call a "hard stick". I was famous with the phlebotomists. (I was down to two almost-failing IVs and no veins when I was discharged.) 

Things started to improve slowly and enough to keep me out of surgery. I qualified for a fecal transplant, which made all the difference and saved me. I had my doctors looking into it, and I was consulting with one of my best friends, who also happens to be an infectious diseases doctor (and a bit of a star at that). 

There were many moments of fear - fear of surgery, fear of not pulling through and leaving my children and husband, fear of losing so much time the leukemia would be back, fear of running out of veins. Here I was, stuck in a bed in a hospital with time to burn, and burn it I did with doubt, fear, and many questions, with prayers, having to remind myself God had not abandoned me and so I shouldn't abandon Him in my hour of need. 

I spent time contemplating my desert and wondering how Jesus bore all that pain for us. I spent a lot of time asking God to pull me through, offering up the pain for others, and wondering why our Lord's timing seems to always take us to the brink. I spent a lot of time asking for Mary's and Joseph's intercession. And yet more time clinging on by a thread, when despair wanted to take over and doubt clouded my vision. They say, "if you are clinging by a thread, make sure it's one from His garments." 

Oh, how I asked Jesus to let me lay my head on His lap and comfort me. How I asked the Father to reassure me. There were many signs all along that did just that, but of course we forget when the rubber hits the road. Some may call it coincidence, others the universe... I know it's God looking out for me. And while He does seem to have a penchant for the dramatic and takes me to the edge of reason, I can't but believe that He will get me through. 

This has been a difficult journey so far. I knew it would be - I never could have foreseen how hard though, and it's been hell. And there is still more to come, but I am tackling it one day at a time. 

I am home recovering and preparing for the next fight. With the weeks lost, the leukemia cells are back, and I'm going into a clinical trial that is coupling a targeted therapy with the standard of care therapy my doctor wants me on (I'm not strong enough for the chemo option). The goal is to get back to remission and then undergo a bone marrow transplant. While I didn't want to see it back, this therapy allows me to be home, eat at home, see my kid, sleep on my bed, exercise and get stronger to prepare for the transplant. 

I've lost all my white hair. The brown hair hung on stubbornly, and Kat had fun shaving it off. I was right, my head is better than Jim's, and he has a pretty decent one! I am rocking the scarves and hats and channeling Audrey Hepburn. I plan to be a silver fox when the hair grows back (which, shockingly, it's started to do!)

I have weight to put on (silver lining: I'm sure I can fit into my wedding dress AND my dance competition costume from 1996!) and muscle mass to regain. I was lucky to go in fit and strong, but I came home with a walker and needing help to get off the couch or walk up the stairs. I have made significant progress in the past two and a half weeks. I look like I'm 5 months pregnant, but I looked like I was 10 months pregnant at the beginning of c diff, so things are improving. 

And I remain oh so grateful to all the friends who've reached out, dropped off meals, sent cards, and prayed for my family and me through all this. There have been days I couldn't stand, and our community - you - have propped me up. 

I am keeping my sense of humor, and I'm holding on to my faith and my God. He's got me, He's carrying me, and He's lighting the way. There have been many blessings along the way and several beautiful outcomes resulting from my 44 days in the hospital. God doesn't waste an opportunity. He has led me to the cross where his love poured out, brought me to my knees as I lay me down, and now He is working on ridding me of myself so I can fully belong to Him. I've sang this song many times, afraid of what would happen with a prayer that's so dangerous because it will upend your life. I just have to remember He remains in control in the eye of the storm. 

So, chin up, one foot in front of the other, and to tackle what's currently in front of me. The rest will have its turn soon enough. 

(For those of you who'd like to hear those songs: Lead me to the Cross by Hillsong United and Eye of the Storm by Ryan Stevenson)

TheDaysAreBlendingTogether 

Day 11 and counting... Finally had a doctor tell me what to expect regarding when I can go home. She let me know this first phase is a three to four week hospitalization phase... three to four WEEKS... that's a lot of days. I may or may not be half way through. I may or may not have cried when I heard that. 

I'll get back to that, but first some good news. We got the cytogenetics back, and the cells are negative for the worrisome mutations. I'll take that! Next generation sequencing takes a while longer. I know it still depends on how I react to treatment and, as we travel down this road, that will determine which direction we take at each fork on the road. I'd like to request a straight, boring, route please. 

I now have a PICC line on my left arm, and the peripheral IVs have been removed. I am regaining range of motion (one of the IVs irritated the inside of my elbow, which was very painful). I can now get my hair in a ponytail! And with a PICC I can take showers! It's the little things, people...

I am grateful that I've tolerated this first round of chemo fairly well. There are a couple of small sores in my mouth that make eating even more difficult, there's loss of appetite and changing taste (combined with hospital food). Not chemo-related but AML related, my gums haven't completely receded, so biting and chewing can be problematic.

This week is all about waiting for values to drop, come back up, and assisting me to keep my counts above acceptable levels (I guess I have to remain functional). Monday I get another bone marrow biopsy - it's the weirdest thing to feel them drill through your hip bone... Then we wait for results to see if the chemo did what it was supposed to, and I can move into the consolidation phase. Once my blood levels are at acceptable levels without support (no transfusions), I can go home. No idea for how long at this point.

So, back to the long-term residency I now am coming to terms with... I remain the fun patient. I'm getting to know all the nurses and the staff. I'm hearing their stories. And I'm doling out life advice - I feel like Charlie Brown's Lucy, "the doctor is in"! I might just become the "Dear Abby" of the fourth floor. And I may be trying to convert the chaplain to the Catholic faith. To his credit, he continues to come back and hasn't run away. 

My room is covered with posters and pictures of my family, which reminds me every day why I fight. I have a Wonder Woman banner that reminds me that I've got this. I now am the proud owner of a Wonder Woman robe, WW socks, and golden cuffs! I wore the robe to walk around yesterday, showing it off. I have books, coloring books, a bowl full of Jolly Ranchers and Ghirardelli chocolate (I have to share all that...), and so on and so forth. All reminders of the friends who are rooting for me. 

I have more up moments than down and continue to work on keeping a positive attitude. I don't know if I've absorbed all of this or not, and I know it's early yet and it will get worse before it gets better, but I'm taking the bull by the horns and letting this bitch know it ain't taking me down. 

And while thedaysareblendingtogether, I feel surrounded by love, support, encouragement and prayers from you all. Everywhere I look the same word keeps coming up: Hope. If God is telling me to have it, I'm listening and following his clues. He's shown up every single day, never letting go. I am so grateful for that. 

My husband is my rock. My children are holding up and handling this as well as could be hoped for. And my parents, well, they worry, but they are keeping the faith. 

So, I hope every day. I try to surrender every day (that's really hard for me), I refuse to worry about the things I have no answers for and try not to fear the things over which I have no control.

I remain so grateful for you all. You spur me on, push me forward, and prop me up when standing becomes difficult.

Thank you for lighting my path with your presence. It's humbling and overwhelming and so, so appreciated. 

 Learning Curve - Keeping it Real 

Oh, the things you learn along the way. The things you didn't think to expect, or the things you hoped you wouldn't have to deal with. 

It's not that I shouldn't have been prepared for it. After all, I have a whole bunch of information on chemo, what it is, side effects, etc. It's just that I focused on the obvious ones - nausea, loss of hair, mucositis, weakness... you know, what you think of when you think of chemo. 

Then there's the let's-not-really-get-into-all-the-info attitude to avoid a case of hypochondria, to which I am not prone, but still. And then there's all the other stuff that isn't even listed, because it's not a side effect but more of a consequence of spending time in a hospital. 

Raise your hand if you know that I love food. Ok. I LOOOOOOOOVE food is more accurate. Well, finding out that chemo messes with your taste buds is adding insult to injury. There's loss of appetite, but no surprise there because everything tastes bitter and metallic. It sucks. 

I also need to wash my hair. At this point of my stay, you can probably figure out how many days have passed by the look of it. A short cut is in order, because this is not sustainable. 

I had an issue with my PICC line - a clot, so they removed it and hooked me up to two IV ports on my left arm instead. The right hurts, the left can't move that much. Friends, when you have limited use of your arms many things come into play: you start hoping you are ambidextrous, you try to figure out how to brush your teeth and eat with the wrong hand, you wish for a fairy godmother to come and tie your hair for you, and you pray to all the angels and saints that you can at least wipe your own butt. 

I am told I may get unplugged today at some point, and I have already warned everyone who will listen that I am making a run for the shower, washing my hair, and recovering some semblance of self before they try to hook me up to anything else.

Other than that, I'm peachy! 

Indignities aside, I remain grateful for every blessing that surrounds me. And the occasional Brahm's Lullaby that plays every time a baby is born is a moment for rejoicing in the miracle of life. 

As I told a dear friend of mine earlier today, I have all of you, so I can have this. 

Paying Attention to the Landscape

So, I'm now driving down this road with no real control on the direction or the wheel, just a clear understanding of the destination and every ounce of my being focused on that. By the way, tangent, as most of you know, I'm fairly self-sufficient and a problem solver... except when I get lost. Then I panic, hysteria can easily take over, my brain shuts down, I start to shake and sweat. It's not a comfortable place to be at all. 

Back to my point (I hope there is one). I'm on this road, no map, no GPS, learning to be uncomfortable, refusing to panic, and working on trusting completely in God's love and direction, because after all, the will of God will not take you to where the will of God will not protect you.

The road is unknown, and I've already experienced both a smooth patch of pavement and a couple of minor bumps. 

The smooth patch: cytogenetics are coming back little by little and my leukemia is negative for a mutation that would have made this fight harder. Yay!! Good news!!

The bumps on the road: I developed DVT (deep vein thrombosis) along the PICC line, so they had to take that out. My right arm hurts, my left arm now has two IV lines going to deliver what I need, my nurses are finding creative ways to take my blood pressure (legs), and blood is being drawn from my hands. I'm a hot mess, my hair needs washing, and to add to it, I've started to feel queazy. I had a few hours of wanting to 'be brave', then I said, why??? Drugs are my friends.

And here's the thing: we can focus on the road and the bumps, or we can also take in the landscape. Funny story and second tangent: we used to drive down the toll road and every spring the center of it will fill with the most beautiful, full array of zinias and lupine - an absolutely breathtaking display of the beauty of nature. I looked forward to it. I mentioned it to Jim one day, and he asked "what flowers?" Stop and smell the roses...

Don't get me wrong, I'm watching the road ahead because there will be bumps, and I don't know what those look like yet. I know this journey will get way worse before it gets better, the road will twist and turn, there will be dark spots, there will be hills that might seem too steep, things I'm not prepared for. And along the way, there will be flowers, and sunshine and beauty too. 

And speaking of the landscape, yesterday as I hit this bump on the road and let it overwhelm me, I was showered with love just at the perfect moment. I'm now surrounded by posters of family pictures, a Wonder Woman banner reminding me that I've got this, I have a Wonder Woman gown, books of encouragement, dry shampoo (trust me, it's necessary), a box of chocolates, chocolate pastries (yesssss!!!!!), cards, all sorts of helpful things and a reminder that I'm not alone. Thank you, thank you, thank you for this - y'all know who you are.

Am I scared? At times, yes. But I won't let that take over, this is not the center of my life, and this bitch ain't taking me down. 

Stop and smell the roses, because the journey might be bumpy, but life is still beautiful. 

Road Trip Detour - the New Journey

Ah... We have our plans, our destination, our map in front of us, and all of a sudden, wham!!, it all changes. In the blink of an eye our destination reroutes, like a bad GPS mistake, except it's not a mistake and you can't make a U-turn. 

That's where I find myself, unable to make a U-turn. And I know there's a reason for that, so I'm examining the new landscape and figuring out how to navigate it, because I know there's a branch on this road that takes me back to my original destination. 

Getting a leukemia diagnosis has abruptly changed our lives. Concern, stress and more questions than answers are a huge part of it, but so are faith and courage and strength. We choose to lean on the latter, because the road ahead is uncharted. I don't have a GPS for this. 

It is a humbling experience as well, and not just from the physical standpoint that health is not a given, but from the emotional standpoint to see the overwhelming support and love that is being poured on us. It has been such a source of comfort and a blessing beyond words. It is humbling to know that people care this much, and even more so to see how they see me, because I don't see me the same way (I mean, I know I'm pretty cool, don't get me wrong, but this is so much more). 

Today, my counts continue to go down, as expected, all within range. So far, I can tolerate the 24/7 chemo drip thanks to antiemetic meds. I am neutropenic, so higher risk for infection and thus not allowed any visitors, not even my husband for whom I'd gotten an exception (covid restrictions are in place). That's a small price to pay to stay as safe and healthy, all things considered. Next week, counts will really go down, and I expect I'll feel way worse, but that's for next week. Once I complete this first cycle (of several), I'll know better. For now, it's two weeks in the hospital, one week at home if things go as hoped for (no infections, no reactions, counts going back up as planned). 

I try to keep my sense of humor. I'm using this picture of me from last summer because my hair really looked great, and that's going to go away. And when it does, don't be surprised to find a poll to see who is the best bold head - Jim or I. Hair will grow back, and that also will be a surprise (can I end up a redhead with fabulous, shiny curls?)

I am still wrapping my head around this; it's been a whirlwind, and there are ups and downs. I am holding on to my faith, which is at the center of my life, working hard to trust God completely (He sometimes makes it hard). I am holding on to prayers and love, because that will get me, us, through this. I am grateful for all the things that have happened along the way to pave the road ahead and allow us to walk this journey, and I pray that I can walk it with grace.

I am grateful for my husband, who is my absolute rock and my forever guy. I am grateful for my children, who are holding up and working through this and keeping their sense of humor, keeping the faith. I am grateful for our friends and our community and our church and our faith. I have so much to be grateful for, all the blessings God continues to provide, and the signs that serve like a beacon to keep my eyes on Jesus. 

In terms of badass women, I have Wonder Woman on my FB profile, but I'd start with the Virgin Mary, because she had to be badass at the tender age of 14 and trust completely. I want to trust like her and let her guide me closer to her son, Jesus. There's Catherine of Siena, who got the Pope to get his act together and return to Rome. There's Joan of Arc, also a teenager who fought like a soldier. And from the fictional ones, well, Wonder Woman. She is fabulous, let's face it, and I may not have the boobs, but I want to have the attitude. 

Love to all. More to come. 

Happy New Year!!! It’s 2021 and we’ve survived 2020.

How do we do the past year justice though? While we’ve all been waiting to leave it behind and start fresh, so much has happened that can’t be just swept away. And the challenges we faced are still around – after all, the date doesn’t affect the virus, and the pandemic continues to rule our way of life.

For us, 2020 started in the most spectacular way. We found ourselves in Nashville, after 23 years off the competitive dance floor, reclaiming the world champion title in the UCWDC’s World Championship team division. And we killed it. We really did. We loved every second of it, and to this day I hear the crowd, the applause, and see the standing ovation. I’d missed that feeling. And that could hardly be seen as foreshadowing of what was to come only three months later. 

In March, as we all know, the world shut down. I was sent home to work remotely (something that would have never happened before!) And the timing was just right. The pandemic took hold of everything and sent us into lockdown – and sent some into frenzied toilet paper, sanitizer and canned goods overbuying – and the kids and I went home. Well, one of my kids had already been home unable to make it into school, as most of you already know. I was able to focus on her more and help her get through the months that would come, struggle with her to get the work done, and limp with her to the finish line of 8^th grade graduation. Getting furloughed on June 1^st could have been a terrible blow, but instead it was a considerable blessing.

Things got canceled. The senior class of 2020 was robbed of every end-of-school tradition and many a graduation. Our 8^th graders saw their trips, dances, and other traditions go out the window. And yet, selfish as this is to say, my kid all of the sudden didn’t have to miss those things she’d looked forward to for a long time, she didn’t have to cancel all those plans she’d made and watch her hopes and wishes leave her behind. While most kids suffered greatly from the emotional toll this all took on them (and justifiably so), mine found relief and an easing in her daily list of things she couldn’t face or achieve. 

During all this, I was at peace. I had faith that things would work out. I had planned to spend the newly-found time on my hands helping my husband, but alas, as most of you would have (and probably did) predicted, that didn’t last long and our marriage is better off for us having given up on it. He put all his energy into work and made up for my loss of income, even through the brief interruption during which he dealt with COVID. Again, we were lucky, as he had mild symptoms and was back on his feet in 10 days. He’s had some minor cognitive issues that are resolving themselves, but nothing that impairs his ability to work or be effective and generally awesome as he usually is in his work. Nothing can get this guy down, especially when he puts his mind to it and when his family depends on him.

2020 was a shitty year. And it was a good year too. There was loss and there was gain. There was grief and there was rejoicing. There were canceled plans and there was more time with family focusing on what truly matters. 

Having a teenager with major depressive disorder is hard, heart-wrenching, and exhausting a lot of the time. God, as you might have heard, has a sense of humor and way more faith in us than we ever seem to have in Him. Well, in His infinite wisdom, and apparently thinking that I am made of far sterner stuff than I think I’m made of, he decided to send us another one. In September, I got custody of my 14-year-old niece, and shortly after I got guardianship. She has been living with us since then, and now we have three girls under one roof (did I mention I always planned to have no more than two children?) It’s a long and convoluted story involving too many stories I don’t want to share this publicly, mostly because they’re not mine to share. Suffice it to say that her depression is mostly situational, and thus living with us has helped improve that greatly. She is my brother’s daughter and had been living with her mom since my brother went back to Peru two and a half years ago.

Her coming to us meant our small house became even smaller, and while we’ve been talking and talking about getting a bigger house, we’ve never pulled the trigger. Well, 2020 was the year we finally did that, and I am typing this from my new chairs in our new living room, next to the Christmas tree we put up the day before Christmas eve… it’s been busy.

We’ve lost friends and loved ones this year, and it sucks that we can’t come together to grieve and remember them, finding comfort in our collective memories. So yeah, 2020 also took away that from us. And while we all can complain about technology and how impersonal everything has become, technology has helped keep us together and connect with each other and get through these rough patches honoring the memories of those we love. 

2020 is the year when we couldn’t celebrate Easter and go to Mass and receive the sacraments. Oh, how painfully difficult that was… and yet, it allowed us all to become hungry for that which we so sorely missed and so many times took for granted. And it forced us all to be creative. We are so very grateful for our priests and parish team that came up with ways to keep connected and connecting, that brought us Mass online to help us bridge the time until we could come together, that had our priests doing drive-through blessings for Easter, and so many more ways in which they kept us going. Now, we bundle up really well and go to church outside in the cold at times, masked, distanced, and grateful to be able to be there. 

Yeah. 2020 sucked. And 2020 rocked. And we all want a do-over, but if we are to be honest, we only want a do-over for some things and not others, because there have been blessings all along and all around throughout this whole year. And isn’t that just life? Good and bad, ugly and beautiful, neat and messy, tragic and hopeful. It’s always a mixed bag. It always will be. And so, while we welcome 2021 with the hope of a vaccine and a light at the end of the very long tunnel, let us count our blessings, let us be grateful, let us remember the things we learned this year and the priorities we refocused on, and let us seek a better normal than the one we had, because out of all the things that sucked before, the rat race is what sucked the most.

Thank you, 2020, for the many moments of light among the darkness. Welcome 2021… a new year, renewed hope, and an opportunity for us all to do better.

 

Merry Christmas

It's that time of year yet again. And I bet it snuck up and in a panic many made sure gifts were bought and wrapped, photos were taken, Christmas cards were ordered and mailed (or maybe that's in process). I know I've enjoyed a few cheesy movies and now am getting ready to celebrate Christmas Eve.

And it's not about the presents under the tree, or the decorations, or the dinner. Look around the table - it's partly about that. What is it about? It's a celebration of the birth of the man who would change the world for the better. The God that came to us, trusting that we could take care of him in the most vulnerable state of a baby, born of a woman who had the unshakable faith and courage to say "yes". It's a reminder that He came for us - to serve, to love, to save.

And in two days, the world will "move on" and take decorations down, shopping season over, ready for the new year and resolutions. Do yourself a favor - if you are going to have a resolution, let it be to allow yourself to be vulnerable to the God whose birth you celebrate today. Let it be to allow Him to touch your heart and light your path. Let it be to take the time to find Him in the many ways in which He is working in your life, so that you can walk the journey He wants for you.

It's been a rough year for us. Having a child with depression and waiting for months for something to work (it hasn't yet), taking each day at face value and trying to not worry about the future, falling apart at times and crying tears of frustration and pain is not the best way to walk into the holiday season. At the same time, we have so much to be grateful for and can see God working on our lives every day in more ways than I can count. And yes, there are the days when my prayer is angry and frustrated and not willing to acknowledge what He is doing instead of what I want Him to do. j

Still, this season is a reminder that my God loves me particularly, and you, and my neighbor, and those who follow Him and those who choose not to. It's a reminder that He came for me and for you and for every single one of us to show us a better way.

Let this season be a step toward that better way.

When trying to find the light, it's not all or nothing.

It's a broken world in need of light. It's a cruel world in need of kindness. It's an unforgiving world in need of understanding. It's a divided world in need of love. Be the light. Speak truth in kindness. Seek to understand. And always, always, do everything from love. ❤️

I wrote these words several months ago, so I wouldn't forget them. They were meant to be the start of a new blog - or perhaps the closing of it. With so much going on, I never got around to writing a blog to go with it. And today, with so much going on, I can't help but write.

Bear with me for a little while, as I try to make sense of all the thoughts swirling in my head. Each could be the start of its own diatribe, so I will try to stick to the ones that somehow can "stick" together.

What's on top of my mind, and probably yours? This pandemic. This period of isolation and how it's affecting everyone of us.

For a little while, it seemed like we could come together at last, grasping the need for humanity and compassion to move us through the newest crisis, since it seems crises are the most powerful catalysts to bring people together when need supersedes anything else.

We all went into isolation, some of us kicking and screaming, but all of us willing to do what we could for the common good. And yes, some of that was motivated by fear of what we still didn't know.

Now isolation is wearing out on us and our patience wearing thin. And fears are heightened - fear of contagion, fear of exposure, fear for the vulnerable, fear for loss of jobs, fear for loss of income, fear for the economy. And fear has sent us back to our corners, from which each side is ready to tear the other up because the other is heartless and soulless and cares nothing about saving lives, or heartless and soulless and unrealistic to not see the economic ramifications of a situation that is unsustainable.

Folks. It is not all or nothing. I, like many of you out there, have parents in their 70s with serious underlying health conditions and loved ones with compromised immune systems that make them most vulnerable to this virus. I, like many of you out there, want to protect them and figure out a way to spare them.

I also worry about the economic ramifications of all this. On the micro, more human level, I see people losing their work, unable to put food on their table and feed their children, worried about how they will make their next rent or mortgage payment. I see and know people who've put blood, sweat, tears and everything they have into their dream of having a small business that now is about to sink. As you extend beyond that, you can see sales tax, income tax and business tax revenues will plummet through this, leaving us all with severe budget deficits that will affect the most vulnerable once again, our education systems and public services, and lead to increasing budget deficits and debt. I don't care what side of the aisle you are on, this should concern you.

I also know this virus can't be stopped. It can only be slowed down. The measures we are in were not meant to eradicate the disease. They were meant to flatten the curve. And by all indications, we have achieved that. Some locations have been hammered, like New York. Others haven't seen nearly the numbers they expected to see because we stayed at home.

Don't skewer me for my next statement, because it is not meant to be callous. These measures were not taken solely because of mortality rates (which are still not fully known but believed to be far less than originally anticipated). They were taken so that we could take care of those who would need acute care, produce sufficient testing kits, hopefully find an effective treatment and eventually a vaccine. We can't stay locked down because of lives that will be lost. Yes, I hear you screaming at me right now. Yes, every life is important. However, if we are going to call a lock down solely on the fact that a disease can kill, then we will lock down for the flu, for pneumonia, and for a host of other transmittable diseases over which we have no control (and as a side note, we would all have to vaccinate, as varicella, mumps, etc., also can kill).

We have to get back out there responsibly, so we can continue to control the spread of this disease.

When one side says "reopen!" it doesn't mean fully, without precautions, without protective measures, without caring for those at highest risk.

When the other side says "stay home!" I hope it doesn't mean completely, everybody, but those who don't feel safe coming out.

There has to be a balance. Reopening is all about finding that balance and moving forward.

So, it seems the thought on top of my mind was just this one. And the words on the opening paragraph still apply, because in the end we do need to be kinder to each other and open to listening, open to dialogue.

I don't discount your need for safety, your worry for your health and that of your loved ones. Please know I share in that concern for my own family. And I fully understand the need for you to stay home if that is what you must do. I also know that people out there are desperate, not because of the inconvenience of all this, or because they can't get their nails done or their hair cut. They're desperate because they are sinking into quick sand, and there doesn't seem to be anyone around who will get there in time to help save them.

I pray for the sick, for those dying alone. I pray for the workers who have lost their income and the small business owners who are losing their businesses. I pray for those entrepreneurs out there who have had to let go of people who depend on them, as they close business locations. Let's pray for each other, for wisdom, for kindness, for compassion, for understanding, and for open hearts. And let's figure out a way to move forward.

We will never forget... but haven't we?

It's that time of year again... a mixed bag for our house, since we celebrate birthdays (my daughter's, my dad's, my cousin's) and yet remember that fateful morning on 9/11/2001. The day we all promise to never forget. The day that took the lives of so many. So every year, I wake up to the reality that, while I post happy birthday messages for my daughter, so many others remember the lives of those they lost.

And we say it again in posts, with pictures, in our words - Never Forget.

But I think we have.

No, we haven't forgotten the horror. We haven't forgotten the tragedy. We haven't forgotten what we were doing, where we were, how we found out. We haven't forgotten the victims nor the heroes. We haven't forgotten that we made a promise to not forget.

We have, however, forgotten what else came out of this tragic day. We have forgotten how we came together in support of one another. We have forgotten how we all seemed to be kinder, more patient, more understanding - even on the California freeways, which is to say something. We have forgotten that on that day and after, what brought us all through was love and celebrating what is good in life.

We have forgotten that during that time, at some point, this touched us so deeply, we all wanted to be better people and create a better world.

As St. Mother Teresa said at one point, we have forgotten that we belong to one another.

We have forgotten that the only way to dispel the darkness is to be the light, and that the only way to combat hate is to love.

We talk about it, though, only to turn around with another post filled with expletives and hateful words and statements - either directed to a type of people, or to our neighbor for disagreeing with our views, or to the people on the other side of the political party isle. We fill our walls with sentiments about justice and kindness and love of neighbor, and then we follow that with statements that project anger and hatred and insult.

So, we have forgotten some of what that day initially instilled in us. And in doing so, I think we have forgotten how to best honor those lives lost - not through division and hate, which is what took down those towers and took away those people. We best honor those lives in the same way the heroes who ran into those buildings honored them - compassion, caring, kindness, determination in the face of fear, hope in the face of despair, light in the face of darkness.

To repeat another often-shared sentiment, in a world where you can be anything, be kind.

Be the light.

Happily Ordinary? Hardly

 

Social media - our lives revolve around kittens, memes, sometimes political rants which seem to be the only thing that's allowed to be ugly. We share all the ways in which our lives seem perfect, or perhaps happily ordinary.

The truth, in the meantime, is that behind closed doors, away from that peeping-Tom window of social media, we all face a struggle. We don't talk about it - dirty laundry is aired at home only. We don't share except with a few, because it's painful or maybe because then it becomes too real.

In the end, how many of us are struggling in isolation? Or how many of our loved ones at home are struggling in their own silence, while looking perfectly fine, animated, even happy?

Well, my kid, for one. And I share this because maybe your kid is too, and you know it. Or maybe you don't.

She is funny, witty, animated, weird in the best of ways. She is bright and creative. She is a force of nature, and I'm sorry for whoever may be crazy enough to stand in her way. She's like a firework - filled with energy and light, beautiful and striking, and a bit dangerous too.

And she's struggling. She's hurting. She's crushed by this pain she's not able to let go of or work through, because it hurts so damn much. On a good day, she may be at a 4 on a scale of 1 - 10. And even at a 4, she's considered suicide.

Yes. That dirty word. Suicide. The one we don't talk about.

Being who she is, she's evaluated the pros and cons and decided she'd be stupid to go through with harming herself or worse. Two things keep her from it - food (she's her momma's kid, after all), and knowing that this won't last forever.

She's in therapy. There's no traumatic event, loss or situation that seems to be the root cause, so even less reason to suspect there's something off. She's now been prescribed an anti-depressant, because her suicidal thoughts are so frequent. And I don't know if this hurts me even more because finally something can be done to bring her some relief and help her cope, or because it's bad enough to require a prescription, or because it's just hurt for so long to not be able to make it better.

It's not major depression, but minor (or so we are told, and thank God for that). And yet, "minor" is such a deceivingly innocuous word.

If you saw her, talked to her, spent days with her, you would never know. This is her normal, she carries it within her and holds on tight.

And I hurt, because there is nothing I can do to solve it NOW. Because what I want to do is scream and fix it with a magic wand that will make it all ok. And I know I'm doing all I can, and that this is temporary.

Why am I sharing this? Because life isn't made just of photos, and kittens, and memes, and the FB posts on the stuff we are willing to share. Because maybe, just maybe, I can help one more person out there face her or his own situation. Because maybe I can help someone else. Because more kids than we think experience this.

And to those of you who've known and continue to pray for her, thank you. You are my angels on earth.

Why fit in when you were meant to stand out

The other morning I found myself almost snorting coffee through my nose, as I came across this article on the Hipster Effect. The article talks about how hipsters, who want to be counter-cultural, end up all looking the same. The part that almost made me snort was that some guy saw the article and the photo used for it and went after the MIT Technology Review for using his photo without his consent.

Except, he wasn't the one in the photo.

He just looked exactly like the guy in the photo. Which comically underscored the point of the article.

And that got me thinking. In the end, we all want to fit in, or probably more accurately, we all want to belong. That starts with the way we look - most of us don't want to stand out. We don't want to be underdressed or overdressed for the event. We don't want to stand out by asking a question or voicing an opinion. We want to be part of that group of people who are having such fun or carrying on interesting conversation.

And we all run the risk of becoming part of the herd, of choosing not to voice our thoughts when that's exactly what is called for, of condoning behavior and thought that are opposed to our values and beliefs.

We often wonder how evil happens in the world, and we forget that all evil needs to succeed is for good to do nothing.

But I digress. The point of this blog is fitting in (or not).

Don't get me wrong. I have nothing against fashion trends - except when they call us to expose things better left to the imagination. And if you know me, you know my love of shoes. I will not ever protest high heels and how we ladies conform to the excruciating experience of walking if skyscrapers all night because they look so very good. And I really have nothing agains people wanting to fit in - it's how communities are built.

And I do see the point of going against the culture, especially when the culture has turned the world around us into a version of the Stepford Wives. But just changing the way we dress or the cars we drive isn't enough, even though it might be a visible sign of resistance - until, as the article above points out, it isn't.

So, I challenge all of us. Let's look around us and take a look at the world today - at the culture, at the trends, at the way in which our focus has shifted to place importance and emphasis on things that shouldn't matter as much as people. Let's take a hard look at shifts in values and attitudes. Let's take a pause and figure out why shouting and vitriol have replaced dialogue, reason and collaboration.

And let's be ok with being counter-cultural. And I don't mean wear a beanie and a plaid shirt, grow a beard and a man-bun. I mean be kind. Be courteous. Be considerate. Put people first. Give others the benefit of the doubt. If we're going to be wrong, let it be because we're coming from a place of grace and not a place of judgement. We don't have to shout and be the loudest, most strident, most vulgar voice in the crowd to be heard and make a point. Let's remember all human beings have inherent dignity.

Why fit in when you're meant to stand out?

Stand out as the best version of yourself, and give others reason to notice you in your humanity.

Love, more than a feeling

A friend of mine once shared that, when her husband drives her crazy, she repeats to herself "I love my husband, I love my husband, I love my husband." I am sorry to say that's not what goes through my mind when my husband drives me crazy (big surprise, I know). 

In fact, recently, he and I got into a heated argument (that sounds so much better than a fight), the details of which are not important for this post. Except to say that later that day, before Mass started, I knelt and prayed for the desire to forgive him (yes, I was still mad). And wouldn't you know it, shortly after that prayer our priest announced we'd be hearing from Paul's Letter to the Corinthians, about love being patient, kind, and forgiving all things. God does have a sense of humor.

At the end of the day, I relayed the whole story to our priest, details of the argument included. He laughed and said "I envy your relationship." I was more than surprised and asked what exactly he envied about all that, to which he replied "opportunity for holiness."

And that's the crux of it all. Love is not a feeling, or at least not just a feeling. 

When we think of love, we think of the warm, fuzzy-brained, butterflies-in-stomach kind of love that is part of a romantic relationship; or the enormity of the feeling we get when we look at our children (at least when they're behaving); or our friendships. There are any number of things that can evoke that feeling of love. 

Seldom do we think of the sacrifice that love entails - the giving of self, the denying of our own desires at times, the reprioritizing, and so forth. Ask any married couple that's been together for decades, and likely you'll hear a lot of "it's hard work." 

It is hard work, because love is also an action. And a choice. And in the Christian life, sacrificial to the point of suffering. 

And the point of love is not that we will feel warm and fuzzy for the rest of our lives, waking up to our love of the past fifty years, gazing into each other's eyes. The point of love is we walk this journey together, helping each other become the best version of ourselves, choosing each day to love, to put the other person before us, to give our all with no expectation of a return - and really, if both people are giving their all, there are huge returns. And let's face it, that's a lot easier said than done.

The point of love is also to love our neighbor like ourselves - and that includes helping the needy, feeding and clothing the poor, and helping make this world a better place with whatever gifts we have been given. The point of those gifts is to share them in love of neighbor. And again, easier said than done.

Easier said than done, because somehow we've become a world that fears sacrifice, avoids suffering to the point of closing our eyes to the suffering of others, and sees any type of discomfort, inconvenience, and pain as the things to walk away from, as if they were wrong for our life.

Well, guess what? Like it or not, life is filled with pain and suffering. They can't be avoided. We can, however, encounter grace in them, if we only saw them as opportunities for holiness. Whether it is because we sacrificed something for the benefit of someone else, or accepted whatever cross we have in this life and carried it with grace, or joined in the suffering of others to help them with their own crosses. 

Life is filled with opportunities to give, to love, and to do so sacrificially. It's a daunting thought and a scary proposition. It is, however, what we all are called to do, if we only pay attention to the inner voice that wants more for us than fleeting pleasure in a world that will do anything to drown us in its noise. 

How are you loving today? How are you choosing to give to others? How are you sharing your gifts to make this world a better place? 

Choose to love and open yourself to the possibilities. It is a daily choice, and though we may fail in different degrees on a daily basis, we have each day to start over, to try again, and to do a little better with every step we take.