Dearest Don Raine || Ed. 3 This Was 2017

I regret that I didn’t write and share photos more in 2017 in this special space. The loss of Grandma Mary at the end of 2016 extinguished a spark in my heart. I worried that the spark could never return. I now know that her death changed me, Leah, as I know myself, evermore. It feels like I had to get used to this new version of me all year long. If you should lose a physical part of yourself–this is what I imagine it would feel like. How does one begin to live anew without want for what was lost? A leg, hands, sight, or hearing?

I find my motivation to keep going and learn how to live this new way comes from the truth that I am not alone. I do feel alone in grief. However I try to focus on the logic that there is a togetherness for us all. As humans we hurt, despair, weep, disbelieve. And if any other human can feel what I feel and keep going? Well, then I can, too. So that is what I can tell you about this year for me. It probably sounds horribly depressing, but you have to find the hope I have there inside it. The spark.

2017 began in a wake of grief, and 2018 will, too. But let’s keep going. There are joyful moments yet ahead.

In 2017 – Daddy solidified his place as your best friend. You would never admit this; daddy might not even agree. You spend more time with daddy than anyone else. Because he is now a stay-at-home dad, he keeps your world in order. He cooks your meals and is your chauffeur, supervises your schooling and makes sure you do your homework, takes you out for adventures, plays video games with you, and also steadfastly continues to count down from 300 every night to help you fall asleep. Already in your short life, he has taught you what you need to look for in a best friend: devotion, humor, and companionship. We are still working on the quality of compromise.

In 2017 – You hit your independent stride. By the end of the year, you learned a lot at school but also taught yourself that you can enjoy doing things on your own and take the lead when you want to. You wake extremely early but don’t expect much from us. You enjoy your alone time; talking to yourself in the bathroom, dressing yourself (this part is so entertaining to me), brushing your teeth, and playing by yourself. You are comfortable entering a room of children that you don’t know and making friends. If we let you, you’d already be riding your bike to school by yourself or just getting your drivers license already so you can go to your cousin’s whenever you want. You taught yourself how to play more video games and puzzles. You LOVE word searches. You strongly believe that you know everything about everything, especially now that you learn more in school. You inform me when your artwork is pointillism, about the traumatic plight of the pilgrims, and the right way to sing songs. Most exciting for daddy and I? Your ability to read on your own. You grew leaps and bounds with your reading this year. I’m a little proud to brag that you read at an intermediate level already at the age of 6, along with only 2 other children in your first grade class. You went from reading your first book to us in May (I cried) –Dr. Seuss’ Green Eggs and Ham to plowing through chapter books like the popular Captain Underpants series by Dav Pilkey. (And don’t EVEN ask me why adults want to CENSOR this book from children like you. Goodness gracious. These are the times.) We have throughly enjoyed the pleasure of telling you that you may read in bed until you fall asleep, when you are unwilling to stop after we read as a family, or because you are just having a hard time falling asleep! I also cried the first time that I walked in to check on you and you were asleep with a book on your chest. Clearly, daddy and I value reading.

However, looking ahead to this new year, we’ve got a squad goal: greater independence in the kitchen. Daddy and I tend to spoil you by serving you like we are your slaves. Let’s get you making your own bowl of cereal for crying out loud.

In 2017 – You are having the time of your life. I am amazed at how much FUN you have at your fingertips. Dare I say, you are super privileged. You’ve got a crew of neighbor kids to run around with, opportunities to travel, go camping, and explore museums and parks, as well as enjoy your hobbies – biking, reading, playing video games, and training to be the next American ninja warrior. We are doing our best to keep it all balanced, as parents our age seem to obsess over. You know, SCREEN TIME. It’s a thing. You are also learning to enjoy food beyond your sweet tooth. We are so proud that you are willing to try anything that daddy cooks or any restaurant we take you to. This is also something parents our age seem to obsess over. PURE, ORGANIC, NATURAL, DON’T EVEN CONSIDER A HOT DOG OR SODA. I think we are teaching you something in between the extremes, but if there is one thing I could name that is maybe the top joy in your life — It’s a serving of ice cream at the end of a long day. Well, actually, ice cream anytime of the day, of course. But ice cream before bedtime is a ritual from my childhood that you gladly embrace today.

In 2017 – There are some tough life questions you are continually contemplating. You are learning what pain, loss, and suffering are. You know daddy has cancer and what different things happen to people when they have cancer. You understand the concept of history and know what war is, which means you are very interested in learning how to discern what is real and pretend. Seeing commercials and knowing more and more people reveal more to you about death, illness, disabilities, and injustice. You process these by observing my lead and then asking questions at random moments where I am so caught off-guard that it almost makes me laugh. I hope you will always talk to me. You also have your cousins who are trying along with you to make sense of these things, and they had to learn about illness and death even earlier than you. Mostly, we show you that there is much to be learned in nature about peace and strength. There is the comfort in the science of our world as well as hope in what is mystical and we just can’t explain. And when we talk about death, we talk about love.

In 2017 – I’m pretty sure I am a solid 2nd place for the best friend category.

I am always treading water as your mother; I get pulled under by my health issues but fight to stay above water for moments where I can be childlike and joyful with you. I give you my best when I have it, and that seems to make you happier than ever. When I don’t have my best, I hope you don’t notice. But I know you do. Still. As your 2nd best friend, you like when I am lying with you and we are cuddling. You appreciate that I take great care with the pain you have in your legs. When you have strong emotions, I don’t ignore them or tell you how you “should” feel. I am willing to help you maybe go a little wild and crazy at times? I have taught you already that a good 2nd best friend is a little wacky, creative, affectionate, and ready to fill in when best friend #1 is down for the count. I’ve got daddy’s back and I’ve got your back, buddy.

When I think about all of these attributes and adventures that have developed and taken place in just this one year for you, it is so unbelievably hard for me to imagine what I would share with you on January 1st, 2019! I am looking forward to more joyful moments. We are so blessed by everyone in our lives and the beauty around us. Here we go…

(love, mama)

Why I'm Writing Holiday Cards Now

Our culture loves itself a holiday card! There seems to be a mad dash in the month of December to get. those. cards. out! I have always been caught up in that race, but not because I felt pressured to participate. I genuinely loved the act and the intention. Just maybe not the deadline.

I have always had a very old-fashioned sensibility that values practiced penmanship and all types of stationary as well as fonts, typewriters, and printmaking. If you know me well, you know that you are going to get a birthday card in the mail, every year of your life, even if you are turning a very boring age like 43. (Apologies if you are 43.) Although, I am actually not as consistent as I’d like to think I am. I will spend $8 on a single card because it is made by letterpress or another once obscure technique. I select an appropriate stamp that matches the theme or colors of the occasion or card itself. I get excited when the post office releases new stamps. I get excited when I take the cap off of a new fine point pen. And the feeling of sending my words, written on paper, out into the world to someone I care about? It is my sacred and humble offering.

When I was little, my mother had one closet for all of the miscellaneous in her household and in that closet there were plastic baskets and shoe boxes full of greeting cards, for every occasion, waiting to be signed and mailed or delivered with a gift. I have followed in her footsteps, collecting cards over the years from boutiques all over the country, or as gifts, bought online, and from when I worked at Hallmark and then a stationary boutique in Chicago. I have had friends tell me that I should design my own line of cards. I considered it after Dan’s diagnosis…It was so hard to realize that there is no “card” for moments in life such as those. There is no card for a miscarriage. There is no card for a suicidal death. There is no card for anything awkward and unusual and outside our standard comfort with etiquette.

To cope with Dan’s diagnosis, I cleaned and organized cupboards, drawers, and closets. I purged things. I bought things. I rearranged furniture and then rearranged it again. My mother once told me, as a child when I was rearranging furniture in my room for the 12th time that month, that she used to rearrange furniture when she was a child. She often rearranged the living room and every time her father would shake his head that she moved his favorite chair and move it back. She and I either had an obsession with interior design or we were pushing and pulling and changing because we didn’t know what else to do.

When I took a break from this, I grasped for anything else that I remembered enjoying with such fervor as a child: Drawing, quietly, focusing on a single photo, object, or image, and copying it. Playing piano–where it was just a blur of notes on a page and my fingers rushing over keys, but my mind could slowly ease into it. Writing. I wrote blog posts as if they were diary entries.

And now, this winter, after the shock and loss just a month ago, and this continued static of cancer’s unpredictable strategy in each day, I am relishing my belated holiday task. I have decided to hand write messages on our cards. All 125 of them. Who cares that the climax of Hanukkah and Christmas came and went? Who cares that the New Year was already honored and cheered? I really don’t. I don’t really care when these cards will arrive–now or even after Valentine’s Day. Maybe March?

I just need to sit quietly, think about the faces of the people I am taking the time to write to, and put my pen to the paper. It is a pinch of healing in my process of living. Every stroke of ink is releasing a little bit of grief, a little bit of fear, a little bit of my weariness. It is a meditation also of my love for and trust in who we keep dear. So here they are: my simple thoughts placed into envelopes, sealed and carried away.

Guess What? I'm Still Here. And It's February

I ended the year 2015 with a bit of a bitter back glance (and a secret note to the future that I had better not get any more s**t.) This might come as a surprise because I talk so much about joy, gratitude, and hope in my writing on this blog. The truth is, after a year like 2015, full of a desperately sick husband on chemotherapy, a mother increasingly lost to me in the impenetrable fog of her own mind, closing two businesses that I started in good faith, crushing financial problems landing us in the office of a bankruptcy lawyer, and essentially pushing myself to the limits of my own strength in heart and mind–and then imploding into mania and depression, I was DONE.

Goodbye, 2015. I need a change.

2          0         1           6 .

It feels open and ready, gentle and generous. Each day is 24 hours of opportunity: chances to make decisions that encourage new ways of thinking, new ways of living. I am embracing that sense of freedom and cultivating peace and generosity toward myself. I am also taking some leaps of faith to align my values with day-to-day life. And guess what? It is so empowering! One little change leads to another, and another, and, before I know it…

Y         E         S .

This is living life. 2016 brings change that is soft and rewarding–but not without heartache. However I can say that my bitterness has evaporated, so my heartache can be teachable. This is all we can really ask for.

It does help that we are all medically doing very well! A recent visit with Raine’s pediatric urologist (for his condition he was born with–Non-Obstructive Bilateral Hydronephrosis of the kidneys and ureters) revealed that the concerns we faced 6 months earlier are now unwarranted. In fact, the improvement for Raine’s kidneys and ureters (all FOUR!) was so tremendous, they put us back on a schedule of just yearly check-ups. (Hurray!)

I am finally in the hands of a proper psychiatrist to manage my meds. Per her indication, I have a revised diagnosis of Bipolar I instead of Bipolar II. (I guess? I am not sure I agree...) She explained that I was born with this and we can see that rapid cycling was triggered as young as early childhood–about 6 or 7. Today, I am cruising along well on a combination of Lamichtal/Cymbalta/Trazodone and with her expertise, we are tweaking the dosing as we go along so that we can reduce my euphoric episodes as much as possible, without landing me in severe depression. I have missed meds on several occasions in the last four months and the significance is astounding. I know that I absolutely have to medicate in order to be healthy enough to take care of myself and my family. As I learn more and more about my condition and apply that lens to my life experiences, I can do nothing but grow by leaps and bounds in both understanding of myself AND having compassion for myself. This is a departure from my life-long habit of mental and physical self-blame, shame, and punishment. Of course, no need to go into great detail. Essentially–my diagnosis explains so much and ultimately brings me great comfort. Counseling helps Dan and I address how to make the best decisions for our family (and each one of us) with regards to my health. We have switched roles just a little bit! Luckily we have the same counselor we began with, who specializes in individuals and families with an advanced cancer diagnosis. This has helped us make further changes based on my limitations and taught us how to communicate better. I am working again, part-time, and focusing on a pretty tight regiment of sleep and wake times, meal times, and medication times. It sounds restrictive but I find assurance in what I believe is the simplicity of order. Clearly Chaos–even when extraordinarily beautiful–wasn’t working for me before.

Dan’s cancer remains stable–no change whatsoever–by evidence of his latest set of scans. These are expected results for ALK tumors that have had first-line treatment with Cisplatin followed by maintenance with Alimta. However, Dan is charting 2016 off the map. He’s outside the box of norms for his diagnosis and treatment. We can no longer compare him to any other previous patient “like” him. This is beautiful and brings great hope. He will complete one year of maintenance chemo in March, with no reason to stop. Dr. Duffy emphasized that with no indication of even the slightest change in the locations of his tumors (which we presume to be all necrotic, right?!) and the sight of otherwise healthy lymph nodes, organs, and brain tissue, his next scan or two will be no cause for alarm (a vacation from scanxiety?) Dan is competitive and couldn’t help himself from asking her if he set a record. She laughed with him and revealed that her only patient to last this long on maintenance (before the cancer activated again) was 12 months. He pumped his fist and cried “Yes!” I assured him there would be no trophy for this type of thing. Dan pushed further: “What about your friends here? Can you ask around?” Dr. Duffy explained that the other oncologists don’t utilize maintenance chemotherapy in the way that she does. “OK, how about the East Coast?” He wanted her to text Dr. Shaw and find out what her record is. I laughed and laughed, trying not to resist it. Cancer providing us an echo of silence in our lives gives us a levity we grew unaccustomed to. It’s not a blessing you ever expect to be grateful for–but here we are.

Somebody get this guy a trophy.

One Month in Photos || December 2015

Jim and Char arrived again on December 9th to stay with us for ten days. I had quite a bit to do on my holiday to-do list, so it was great to have extra hands to help and keep Raine entertained. He is really loving his special time with Grandma and Grandpa when they visit! He especially likes to play iPad with Grandpa and show him his toys. He is a little less interested in Grandma until mommy and daddy leave, and then he gives hugs and holds her hand. Dan was feeling pretty well the 2nd week of December, so we made it out to some holiday parties together and he was able to help us with our baked goods for friends and family. And of course, he was thrilled to use his Traeger grill again and cook for his parents, as well as take them out to his favorite lunch spots. With him at work, I concentrated on my business, cleaning/organizing our home (the ever-fulfilling coping mechanism…how many times can you rearrange things?!?) and setting up some new connections for guest blogging and adding new features to this blog. I am pleased to announce that I will guest blog for LCA for Valentine’s day. I’m really looking forward to that and reaching a greater audience. I’m not sure where this is all taking me, but I’m content to be along for the ride.

The latter half of December was tricky as the house quieted after Jim and Char’s departure, I continued to try to do pop-up shops, and Dan fought a common cold in addition to new side effects of the 3rd chemo round. I now get Raine to and from daycare, feed him, bathe him, play with him (basically try to keep him entertained, alive and safe, and in bed. Surprisingly, this is NO SMALL FEAT.) Our routine used to primarily call for daddy’s help with all of that, while I was typically working late at the store or focused on my computer for my business. But now Dan needs to rest. So my obligations have shifted. I would like to say that the switch to a more prominent mom-type-role is going well, but I’m not feeling naturally suited to it. I’m not a cook. I’m not very adventurous. I am in pain or tired so often. I’m stressed out about the drastic change in our budget. However I am doing my very best to be intentional with Raine. I try to keep myself in the moment and embrace silliness, be prepared and/or adapt to sudden changes, and keep my patience. I am sure he eats too many french fries, watches too much iPad, and complains to his friends about how lame I am playing CARSANDGUYS. But there is no shortage of cuddles and kisses, compliments, and tender care.

There will come a day when concepts of cancer and serious illness will begin to percolate in his mind, and then realizations about losing loved ones. He will connect dots and have more questions than we can probably imagine that don’t have easy answers. I am doing my very best to make sure he continues to have the most firm foundation of support and love from Dan and me. What we have established and build now together, each day, can never be taken away or undone. We continue to love to cuddle in bed together in the morning. I’ll admit, I really love blankets and pillows and lounging. It’s gold. Add chocolate to that mix, and I am in heaven. Especially on a bright, quiet morning with my boys –all four of them– cuddled around me. I just feel like the luckiest version of myself ever possible.

Those are the moments I am looking forward to in 2015. I want to smother myself in moments of touch, kisses, glances, giggles, and nearness. Good conversations and long stretches of reading. I’m looking forward to creative projects, and more food and drink, of course.