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Sharing Kara

Today is the anniversary of my daughter’s death, but it also an anniversary of a beautiful life. I’ve wanted to share this story since the first friend stories of Kara started surfacing, but my story didn’t fit the “instant best friend” mold, so I held back. Nonetheless, it’s a beautiful and important story, and has left a lasting impression on me.

I met Kara Tippetts after her cancer diagnosis. I had caught bits and pieces of her blog posts from mutual friends, and knew she and Jason were starting a church plant based out of the church I attended through my teen years. When we were wanting to find a new church home a friend reached out and said Westside might be a good fit for us, and that she thought Kara and I would hit it off and have a lot in common. So, we went.

We awkwardly tiptoed into the back of the small room where the tiny crowd was meeting, unsure what to expect. Obviously in a crowd that small, new people stood out. We were greeted by all kinds of people, repeatedly introducing ourselves and giving the short version of how we came to be there. I wasn’t sure how Kara was even doing, or if she was well enough to be there, but my wondering was quickly answered as I saw her bounding energetically across the room to greet us with a beaming smile on her face. She had been through surgery and finished grueling rounds of chemotherapy, and had been regaining some of her strength and growing tiny sprouts of fluffy hair on her previously bald head. I had my tiny baby boy recently released from the nicu, and she scooped him right up and cooed over him and joked over him having more hair than her. Then, barely knowing our names, she insisted we come home with her for lunch. Of course we accepted, and I spent the rest of the morning being intrigued by the joy that poured out of Kara, the ease with which she talked to everyone, and the relaxed demeanor she held even with her young children sprawling on the floor, spilling cups of water, and rolling crayons under the metal chairs.

After the church service we got the Tippetts address and briefly talked about stopping at the store to grab some provisions to make sandwiches. Again I was struck by how unconcerned she was at things not going according to plan. If I had been the one having people over I would have been thinking about it for days ahead of time, not brave enough to just throw open my doors and figure it out later. I liked Kara’s calm confidence.

When we arrived at their house and clamored inside, the first thing I noticed was the kitchen trash. I know, weird, but hear me out. The trash was full. It had reached its max capacity, and as I stepped closer I could detect the discarded fruit peelings giving off a sweet rancid smell as they sat in the warmth of the kitchen. My mind raced for a second; “oh no, I need to help, she must be completely overwhelmed!” My eyes darted around looking for Kara so I could ask where she needed me to lend a hand. But she was perched comfortably on a chair, chatting and laughing with a few of the others who were gathering to eat together. I suppose that’s the first thing I noticed because it’s something I wrestle with and long to be free of. The pressure to make sure things are presentable, comfortable, not embarrassing… but on that day I saw a glimpse of what it was to put your focus on the people rather than the pretense, and it was beautiful. Kara didn’t stress about stinky kitchen garbage, or not having a menu planned out for lunch, or whether or not all the shoes were stashed in the closet, because she instead spent her time investing in people’s hearts and making them feel right at home regardless of what was going on around them.

In the months that followed, as Kara had to go through more treatment to battle back the cancer, she warmly accepted the help of the community around her. She allowed me to make the birthday cake for her boy’s 7th birthday, which was wonderful to take one thing off of her plate by doing something I enjoyed.

Knowing that cooking dinner is not my greatest strength, I didn’t sign up to help bring meals, but eagerly volunteered to make school lunches for the kids and help with house cleaning to lesson the burden of all the things that took precious time away from loving on her closest people. It was humbling and also comforting that Kara allowed us to help her, as we all felt helpless in so many ways. I’m good at cleaning, and it gave me joy to be able to do something useful. Kara was supposed to be resting, and sometimes she was, but other times she was offering a cup of tea and telling me she felt guilty that I was cleaning for her while I was toting my own tank of oxygen along behind me. I told her how meaningful it was for me to be able to help a little bit when so many people had been there to help me too.

We sat on her bed on her birthday, my daughter’s anniversary, and cried over the sadness of being separated from our loved ones, and imagined over what Heaven is going to be like. We talked about my baby leaving for the place she knew she was leaving her babies for. It was so meaningful to be able to talk about the hard things with someone who didn’t shy away from the raw and broken parts of living. (Kara wrote about that day Here)

One of the last times I got to visit with Kara she had to pause often to catch her breath while speaking. She was growing frail and the cancer had brought harsh edges and hollow eyes, but her smile still gleamed big. She was so sick, and we all knew her time her was growing shorter, but she was still asking me how *I* was doing, and if there was anything she could do for me. She always joked that we we needed to stop competing with each other for the hardest story, because it seemed like every time we got together there was another bit of hard to swallow for one of us. This woman, nearing the end of her days saw my comparatively minimal struggle and she offered me the meals in her freezer that had been brought to lessen her own load!

The night before Kara passed away I had a dream that she died. It was so vivid that I woke the next morning and checked to see that it was just a dream. Kara was still here, but something in my soul knew the time was coming. It was Sunday morning and Jason stood in front of the gathering of people at church and announced he would be taking some time off to tend to his family. When he stepped down from the podium I saw that he was going to walk right by me and I remember quickly turning my eyes away because something in me felt like he would see the remnants of that dream in my eyes and he would know. Jason already knew. Kara went home to be with her Jesus that day, in the paradise she wondered over during her long goodbye.

I shook my head in amazement the first day I met her, and I shook my head on the last day I saw her; this woman with a heart wrenching story and every right to be withdrawn and discouraged challenged me to open my arms to the messiest of life and embrace all of it; not just the planned menu and the tidy house, but the hearts that need to be seen and loved and made to know that they matter.

Kara was never my bestest friend like so many others could laid claim to, and I didn’t get to know the vibrant before-cancer Kara, but our lives crossed paths exactly when they were meant to. The friendship we shared left me with lasting memories and important lessons that I will always carry with me, and I’m so grateful that in spite of her plate full of friendship and family and tragedy and grace, she so eagerly made room to see me and welcome me in.

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Different

This past March we celebrated Ellianna’s 7th birthday. I thought we pretty much had the hang of that down, but this year was a different kind of day. Since we had moved out of Colorado, there was no visiting the cemetery to leave notes and flowers or eat cupcakes near the etching of her beautiful name. It felt hard and sad and unfair to be so far away from the town where we were closest to her. There was still celebrating; there was cake and pictures and remembering her big eyes and her tiny fingers, and there was wondering over what our sweet girl would be like at age 7. But it was different. I had more tears and some angry feelings about being so far from all the tangible places of her.

In April I made a whirlwind weekend trip back to Colorado for a conference, and got to stop by her resting place to leave fresh flowers on my way to the airport out of town. I experienced deep gratitude to get to be there, as well as a downpour of guilt and regret, and sadness to have to leave again. In the months of not visiting that place, a multitude of emotions had built without the trigger of release. I boarded my plane with scratchy red eyes, and a rosy face washed clear of my morning makeup.

Now July is upon us again, and we are remembering the day that we sang over Ellie and kissed each baby piggy toe and watched her body give up its hard fight and her soul fly free of all the hurting. This July though, we are back at the foothills of our breathtaking Colorado mountain, on a brief visit to the city that holds the entire history of her short and beautiful life.

I wondered over what we would do to remember and celebrate our girl this July 14th; an exciting trip packed with joyous memories and reunions, punctuated by the difficult anniversary of one of our hardest days. In past years we have prepared care packages for other families with a little one fighting for life in the picu. We have escaped far from civilization to camp under the twinkling canvas of stars, and we’ve climbed sand dunes to release soft-glowing lanterns into the sky. We’ve had quiet days in at home, and have escaped for a night away to numb our minds with the unfamiliar.

I have some unresolved thoughts about the medical staff that cared for my girl, so I considered making care packages for the doctors and nurses and techs. Each time I started to collect items though, I came up a little bit blank and overwhelmed. The emotion connected to my interactions with the picu staff is strong and difficult to sort through. I decided to keep it simple; it was still a kind gesture of acceptance for these medical professionals, but without the intense process and emotional drain of gathering well thought out individual items for care packages. I called to ask how many would be on shift in the picu where we said goodbye, and brought down a yummy and filling breakfast for when they get to break away from the business of saving lives and tending to souls.

The healing for me was in the handwritten note expressing my thanks for this calling they’ve given their lives to. I know there are days it must feel like a thankless job, and it’s possible I was one of those parents who was so fearful and wounded that I came across as more critical than grateful. It helped me to at least say that I know they are human just like me, and are simply doing the best that they can with what they know.

I could point fingers and choose to hold a grudge for our experience in that picu, but I’m trying my best to instead remember the shining moments of grace and kindness that were scattered throughout those dark days. There was the tech who sat and talked with me honestly about what his job was like, and enthusiastically encouraged me to pursue my hope of a job inside the picu. There was the nurse who in the middle of all the chaos took notice of my wincing and offered me some Motrin from her own purse to help keep me on my feet in the marathon hours of standing at that tiny bedside. There were the nurses who went scrambling for the right sized hat to snuggle over Ellie’s hair when the fresh wounds on her head made me feel panicked while I was holding her. There were the kind nurses who gently helped me bathe and dress the breathless body of my little love, and carefully made treasured keepsake molds of her perfect hands and feet. Those are the moments I want to dwell on when my mind wants to wander and question and doubt and wonder how things could have been different.

As painful as it was to walk back through that slick-floored hallway to the picu doors this week, there was a bit of healing in getting to offer loving kindness to the very people that were part of one of my deepest wounds. I hope that our gesture will help renew their fire to keep fighting for the tiny lives that rely on them, and to keep offering gentleness to the parents who may seem ungrateful and unkind in the terror and pain of watching their little loves hurt.

Our visit to the foothills of the Rocky Mountains also allowed us the privilege of visiting the cemetery where our sweet girl was laid to rest. We soaked in the comforting warmth of the sun as we sprawled on the fresh grass surrounding her headstone, and arranged a masterpiece of flowers that only barely began to capture the miracle and the beauty that was our Ellianna Grace. My littlest scrambled around picking every dandelion he could find to carefully place by her name, just as he has done since he was barely crawling around. We reminisced about the butterflies, the rainbows, the family that came to link arms with us. One of my littles retreated in tears to the car, overwhelmed with the weight of it this time. It changes a bit each time; little pieces of the joy and the sadness and the beautiful and the hard to look on have different meaning as each of us grow and learn and experience more of this life through which we filter all of our deepest emotions. We were honored to get to remember our girl in this place this week, and we surely are the luckiest to be the family that calls her ours.

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Mailbox Love

Remember that feeling you had as a kid when a package would come in the mail with your name on it? Pretty great, right? Then you become an adult and you realize the mailman mostly brings bills and junk mail, and it’s nowhere near as exciting. Aldulting. Blah.

Well someone has been giving me that giddy little kid feeling lately, and I have to say, it’s still pretty great. Let’s not sugar coat things; this is proving a tough and uncomfortable season of life for me right now. I am struggling with fear and frustration and pain, and there is seldom a day that rolls by lately that doesn’t bring a sob session. Or four. Somebody knows that, and has been going out of their way to drop some smiles on my doorstep, and it’s the best. I have received several packages lately, shipped out with encouraging words and containing big eye crinkling smiles.

As I’m grinning over these meaningful gifts that are fun, encouraging, and brightening my days in the best of ways, I’m thinking… what if we all did this? What if we all took a minute to let someone know that we see them and we care for them and we are a friend in whatever their fight may be? I feel like there would be a lot more happy going around.

It doesn’t even have to be anonymous; sign it, or make it a secret, but reach out and do something that will bring a spot of joy to someone’s day. Even if you don’t know what they’re going through, you never know when it might be just the right time to let someone know they matter. Send some fun or inspiring socks, a sweet treat, or a mug and a new coffee to try. Grab a card that simply says “I’m thinking of you,” mow or weed someone’s yard, or leave a bag of groceries on their porch. I guarantee you that regardless of what season of life a person is going through, it’s going to be a little bit better when they know someone out there cares for them, whether you reveal who it is or not.

So get up, look around, find someone you can bring a smile to today. You won’t regret it, and neither will they.

And to my secret mail angel out there… thank you for noticing, for caring, for taking the time to reach out. You’ve brought some of the best smiles on the hardest days.

Please leave me a comment, it lets me know you’re listening!

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Mixed Feelings

My little guy swiped the tears off of his face with the back of his arm and grinned as an excited squeal squeaked out. He had just suffered through painful Botox injections in his legs, but was quickly distracted by the huge bin of toys and games that was plopped in front of him to choose from.

I couldn’t help but crack a smile as well, and thought, there it is, reminding me again; grief and joy coexist.

I have felt bound by a very long season of grieving; one fresh struggle after another for a seemingly endless stretch of time. As I told a good friend the other day; it’s just a constant game of Russian roulette and we keep getting the bullet. I’m sure that’s not the case even though it feels that way sometimes. I have also seen that life does not pause to wait for the hard thing to be over; it scatters the joy right in with it. And thank goodness… am I right? I shudder to think what these dark days would feel like without the fresh breaths of laughter and excitement. Admittedly, I also struggle to fully appreciate the joys sometimes when I am grieving hard.

These past few weeks have been a more prominent example than most of this roller coaster of sorts. I sat across the table to sign for the closing of our beautiful new house crouched over from the fresh surgical scars of a few days prior, celebrated the excitement of boxes and furniture coming in the door while resenting the limitations that kept me from helping to carry and unpack. My flowers bloomed beautifully while my vegetable garden was laid to waste by the weather. Summer break and the delight in bikes and popsicles and lightening bugs and new friends, was coupled with a traumatic fall from a tree that landed my oldest girl unconscious and in an ambulance. On the same hand, the devastation and helplessness I felt over her injuries was bathed in the gratitude that it was not as disastrous as it easily could have been. I received insurance approval for a wonderful new device to help me walk more normally on the tails of hearing hard news from a close friend, and had a weekend of celebrating my newly sixteen year old boy and Father’s Day, coupled with anxiety and new testing for another unknown of my own. There is no time to stop and celebrate the victories or grieve the losses, there is simply a perpetual circulation of the highest highs and the lowest lows, and the best I have found is to drink deeply of the holy graces and allow yourself to feel the depths of the sorrows, and keep moving forward with them.

I know I’m not alone in this. I realize each of you dear readers face your own highs and lows with the revolutions around the sun, and I hope it gives us so much more kindness and understanding for each other. I haven’t mastered this, no; it’s easy to let the sting of the hard bleed into the moments that should be celebrated, but I’m trying ever so hard to fully embrace both, are you?

Please leave me a comment, it lets me know you’re listening!

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Oh! It’s here!

Soooo all the cyber moms are posting these great photos of their kids with cute first day of “x” grade signs beside great photos of their kids with cute last day of school signs, and precious little memories and goals from the beginning of the school year, and now the end of the school year. A few cute mamas dressed their little humans in adorable outfits on the first day of school, and managed to find every piece of the same outfit (still in pristine condition after four semesters of pencil lead, slime, sun-cracked rubber swing sitting, railing sliding and surprise chocolate milk) on the last day, and they adorably represent just how much the little ones have grown, and I’m like, ummmm… I remembered to make mine wear shoes to school on their last day today?? 🙌🏻

This school year crawled by and was over in a snap all at the same time. I watched my brave babies tearfully struggle the agony of being the new kids in a new place, saw them dig deep, face fears, forge friendships, and carve small places of triumph and comfort for themselves in the face of a strange new unknown. They stepped in so timid and unsure, and marched out with confident and maturing faces lifted toward the sky.

It has been a wild school year of ups and downs and all things new, and my heart-blood thrums with pride at watching them own it. They are my inspiration, my motivation, and my reasons to bravely walk into each new mystery with sure and expectant steps. We may have missed buses, overlooked library books, stuffed leftover pizza into crumpled lunch sacks as an afterthought, and played hooky a day or two just because our feet and our hearts needed to snuggle together under the cover of a thick sky and a crackling hearth, but… we made it! Another school year stronger and wiser and refined by all the scorching and applauding of an ever-turning globe, and I will stand tall and smiling for every single proud day as I cheer for these magnificent little world-shapers of mine. Well, ok, I will occasionally take a break from cheering and ask them what in the world they are thinking, but then we’ll get right back to it! I am continually learning from them as they take on the world.

Well done babes, well done!

Celebratory “ice cream!” (Blended frozen bananas & sprinkles😉)

Cannot wait to pull away from our moving boxes sometime this weekend to celebrate big!

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Someday. A letter to my children.

There has been a lot of praise this week for the Mothers. I love and cherish each and every “you’re the best mom in the world,” but I can’t help but wonder what my kids will remember of me long from now. It flatters and humbles and melts me in a puddle to hear them say they would pick me again out of all the moms, but I hope they know that I am equally aware of the holes I have left them.

Someday, my sweet babies, when I’m no longer here to look over your shoulder or come running from another room, I hope you remember that I absolutely loved being your mom. I hope you believe me when I say that you were my world. I hope you remember all the silly times and happy times and treasured memories we made, and that they bring a smile to your face every time you think on them. I hope you remember the sad and the hard times too, but I hope what you remember about those times is that we made it through. We didn’t always have the answers, and maybe we didn’t always choose the best choice, but we stuck together and we looked to Jesus, and we kept on pushing forward until things got a little easier. I hope you remember that in the sad times you still brought me much happiness.

I hope that you know how keenly aware I was of my mistakes. I hope you’ll forgive me for them; for being too protective, too selfish, too impatient, too narrow-minded, too angry… I hope you believe that I was doing the best that I could at the time. At least, that’s what I thought I was doing.

I pray that you not only forgive my mistakes, but that you learn from them and carry into your own families a deeper knowledge and a better way than I had. I hope you’ll carry some of me too; like getting up early to make a big Sunday breakfast and singing at the top of your lungs like you just don’t care.

Please forgive me for the empty spots I left and the hurts I caused. I know they are there. Forgive me for not being brave enough and humble enough and wise enough to always see them. I so desperately hope that there will be strong and meaningful people in each of your lives who can speak truth and strength to where I gave you weaknesses, and you will discover yourselves more whole.

Each one of you were the most precious, unimaginable gifts to me. I could never have dreamed of being given such blessings as you. You rocked my world and colored it and made it full of laughter and music and fun, and I could never have lived such a magnificent life without you.

Thank you for teaching me to look outside of myself; to relax, to trust, to slow down and enjoy, to take risks, to fight, to have courage and hope and ambition. I hope that the string that I gave you is enough to hold onto and run into the world; exploring and learning and conquering and becoming everything you dream you can possibly be.

I hope you will feel glad that I was your mom. I hope you can keep the good parts of me and ditch the bad, and keep making an infinite number more of the best of yourself.

You are my children; you made me a mama. Showed me how strong and how flexible and how silly and how important I could be, and it was incredible.

I love you each; from the bottom of the ocean, to the top of the sky.

Love,

Mom

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For the Mamas. And everyone who ever came from one.

No thing in life has ever made my heart beat so proud, so fierce, so gentle, so unequivocally bursting with the highest and lowest of all emotions as being a mother does.

It has made me so many things. I have been the young teenage mother, naive and unsuspecting. The energetic working mom, balancing a career while serving growing little hearts at home.

I have been the expecting mother, dancing over a positive pregnancy test, and the would-be mother staring in disbelief at an ultrasound screen that has gone silent. I have been the adoptive mother, gathering the seeming endless trail of papers required to welcome a lonely heart Home, and I have been the foster mom who had to say goodbye with a desperate prayer for a loving mother to come.

I have been the woman struggling with infertility and avoiding going out in public for the pain of seeing maternity clothes and new babies. I have been the mother of a perfect natural delivery and of an unplanned and frightening c-section.

I’ve been the mother pleading for a miracle over a quiet hospital bed, and the mother staring down a deep gash in the earth where my child would be buried.

I’ve been the homeschooling mom, and the mom that packs lunches before the early morning school bus. The mom who cheers and waves and beams with pride, and the mom who aches over the heart of a wayward child. I have been the mama supported by a loving husband, and the single mom trying to hold it all together through long deployments.

I have been the mother who delights in adventuring and the thrill of trying new things, and the mother who grieves over being too ill to make it out of bed.

I have been enough to know that there is no “right way” to mother, and that we are all just doing the best we know how, and that the one thread that runs common among all mothers and would-be, have-been, and almost-mothers is the unbreakable thread that formed when we realized we could or would or had to belong to something smaller but greater than ourselves. Something that held the power to provide us with our greatest, most intense moments of joy and fulfillment, and also the lowest depths of grief and insecurity.

If you are a mother, have a mother, know a mother, want to be a mother? That’s something. That is one ridiculously terrifying and exuberantly thrilling job description that no one really lets you in on until you’re in the thick of it. And this world needs you and your desperate love and reckless hope and selfless ambition to keep the heartbeats of all of us thrumming to find our places and our purpose in this crazy life.

I leave you with this…

We all have come across people in life that tend to make us feel better about ourselves and how we are doing. It’s human, it’s our nature to compare. So imma give you a free “feel pretty super good about yourself” right now, or at least next time you’re wondering if you’re the only mom who does these things you will know you’re not alone.

I have been at this mothering thing for 15 years and 11 months. I have most definitely done one and all of the following, some of them on more than one occasion:

1. I have *actually* pulled over and made a kid get out and walk the rest of the way home.

2. I have let (begged?) my children to stay home from school because I was too exhausted to drop them off and pick them up.

3. I have mistaken one of their adorable drawings of a person or a flower for something completely unrelated and crushed their little spirits.

4. I have let my children have cereal for dinner and dessert for breakfast.

5. I have pretended to make a call and given them the “oh sorry honey, they didn’t answer,” when I couldn’t fathom adding one more friend or activity to our day.

6. I’ve been distracted when I was supposed to be watching their super-coolest thing and missed it and told them how amazing and incredible they were anyway.

7. I have gone to bed before my children and told them to remember to tuck in the little one and then turn out the lights.

8. I have forgotten it was picture day at school and been reminded by a portrait of haphazard hair and a tacky two-years-outgrown T-shirt with an obnoxious graphic on the front.

9. I have spent endless time on meal plans and grocery shopping and stocking up on all the good stuff and then been so bone-weary I have ordered delivery or let them eat whatever they felt like anyway.

10. I’ve forgotten to replace pearly baby teeth with shiny quarters and blamed it on them for putting it too far under their pillows.

11. I’ve been late getting them places because I can’t decide on what to wear, and then let everyone assume we were late because of the kids.

12. I have secretly wished that for Mother’s Day I could have a small break from being a mom.

There you have it. Wherever you are in your motherhood, hopefully that gives you a reason or two to feel better about your tireless efforts to safely and effectively grow your little people into productive, well-adjusted adults with very little scar tissue. Just remember, there is no one-size-fits-all-mothering, so keep doing the best you can with what you know. Warrior on mamas!

My kids; here and in Heaven, biological and not, have made me so much of who I am, and I am all the better for it. They challenge me, inspire me, forgive me, empower me, love and accept me in ways I never could have imagined, and I truly am the luckiest girl in the whole wide world for getting to be their mom.

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What’s Making Me Tick

I carry with me “get out of jail free” cards for whenever I am somewhere a metal detector is involved. Rumor has it if you listen closely enough, I actually tick. I digress… One of my cards is for the medication pump that delivers meds into my spinal fluid, one for the metal coils that are part of my G/J tube in my abdomen, my port usually gets “bomb-sniffed” just because it shows up even though it isn’t metal, and this week I added a new card to my stack. I have the opportunity to try out the Walk-Aide; a device strapped around my upper calf that allows me to lift the toes on my left foot without the use of the brace I have worn for the past 5 years. Intriguing and exciting to say the least, and I have a feeling it will be worth being one more part bionic.

I have been switched back and forth between several different kinds of AFO’s (ankle-foot orthoses) over the past several years, depending on the changing severity of my weakness and muscle spasticity. They have all had the same goal though; to provide lift to my toes and ball of my foot, which isn’t getting the message down the nerve from my brain. Without help I cannot completely clear my foot when I’m walking, which leads to lots of awkward tripping and stumbling. I managed to keep up for awhile, even finding a way to get a foot-drop brace crammed into my duty boots, but it hasn’t always been the most comfortable.

Enter this fancy new device called the Walk-Aide. After some playing around with where the electrodes need to be, my orthotist located the exact spot that the nerve is in my leg to tell my foot to lift. She then worked through trial and error to find just the right timing and intensity to provide electrical stimulation to the nerve enough to lift my foot for me every time I step. The shock is pretty intense and often surprises me, especially when I get up from sitting for awhile, but it’s a pretty incredible feeling to be able to walk around barefoot, in my favorite shoes, or *gasp* in sandals without a bulky brace. I have been buying bigger shoes and work boots in order to accommodate my braces the last several years, and have had to completely avoid things like well, pretty much all pretty shoes and things like flip flops and sandals. Needless to say, I’m pretty stoked at the idea of being to wear whatever shoes (or no shoes!) I want, and still be able to walk in a more normal gait pattern.

They are letting me trial it for a little over a month, so I’m hoping that will give me time to adjust to the discomfort of the stim, start waking up some of the muscles I haven’t used in awhile, and give my hip and thigh a break from doing all the week. The deepest hope is that my health insurance will acknowledge the benefit and agree to help with the cost. If not, and I still decide it’s worth working for, my big girl and I have decided to do some art and projects and stuff to sell to earn the money needed to buy the device for me without the help of insurance.

Today, my leg is absolutelyfreakingexhausted from walking around with it for various chunks of time. I’m committed to seeing it through though, and excited for the potential change that will make one more thing easier and more functional for me. Stay tuned!

endurance

That Thing You Do

Self care for me typically looks like getting myself to physical therapy every week, a sterile dressing change for my port every Monday, and making sure I keep up with the never-ending turntable of doctor appointments, medicines, infusions, and feedings. I read something recently that was a bit of new information about what self care really means, and it sounded kind of nice.

Last week I took an hour to sit in a cute little studio and get my hair done. For the first time in like… I don’t know. I actually bought a Groupon for it months ago, and it took all that time and one panic-stricken cancellation to get the nerve to show up. My sparkly eyed 5 year old sat in one of the washing chairs near me and gave me a reassuring thumbs-up every time I glanced his way. I braved a little bit of small talk with my stylist, and ended up with a cell phone number scrawled on a bit of paper, which after living here nearly a year and not having any friends to call my own yet, was kind of a big deal. Well, not that we’ll be friends, but we had something crazy in common, and now I have a person who has traveled before me and has understanding and experience to share with me when I need it.

I was mildly shocked and thoroughly pleased with the transformation a little TLC gave my hair that day, and realizing I would probably never be able to replicate the skill with which she had styled my hair that morning, I snapped a picture when I got to the car, before the unruly wind made an abstract art project of it. I shot the photo out to a few of my closest people, and every single response I got started with “holy!” Some of them were more repeatable than others. It felt good to feel pretty and girly and pampered, and before bed that night I took the time to paint some Spring color on my bare nails. Less than two hours of my week spent just on me had given me a splash of confidence and a smile of satisfaction, and I decided I liked it.

By the time the weekend rolled around I was weary and sore from our usual busy days of appointments and routines, and I decided that self-care, as lovely as it felt, is something that has to be purposely allotted for, or it’s not going to be a usual occurrence. I decided I would push back all of the work for moving and organizing and cleaning that never seems to end, and I would intentionally make my Sunday a time to get some things done for myself that *I* wanted to do. I remembered the refreshment of getting to take care of myself several days earlier, and I knew it would be equally rejuvenating to spend some time doing projects that brought more enjoyment and satisfaction than packing boxes or wiping down the bathrooms. I intentionally didn’t walk into the rooms I knew would scream for my attention, and I informed my man that the only three things that would top my to-do list that day would be to finish a scrapbook someone had asked me to do um…years ago, to finally put together the long overdo baby book for our youngest baby who is now far from infancy, and to begin twisting together the giant chunky balls of sorbet-colored yarn that have been patiently waiting to be woven into a blanket. I put on a funny and lighthearted podcast, cleared my craft table, scattered about all my scrapbooking supplies, and set about spending the day being productive in a most satisfying way. I mean, there’s nothing like the feeling of finishing something you’ve been working on for years, right??

I figured a list of three things was pretty attainable, and with my current energy level I got through only the first thing. Six years ago I was asked to make this scrapbook (how embarrassing), and Sunday I finally had it finished and ready to mail before I collapsed into bed. This was after a downpour of frustrated tears. Three things. I only had three things on my list and I felt exasperated and defeated that I only /barely/ made it through one. My husband doesn’t know how to be negative about anything, and he was quick to praise what I had accomplished and encourage me to keep trying. He’s right, it was a start, and even though it was just one thing, I did it, and one check mark is more than I had last week.

Knowing the affirmation and the joy that these small things brought me this week, it’s my intention to continue purposely making time on a regular basis to do things that are just for me, even if they aren’t on the perpetual merry go round of important things that need to be done. Some day I hope that includes coloring, binge-watching, and reading for fun, but for now it’s a good step to be knocking out some things that I enjoy doing that aren’t on the daily grind list. In the next few months when I go through a small string of surgeries, there will be plenty of forced sitting around.

I’d love to hear what your self-care looks like! What do you indulge in? Is it scheduled or do you do it whenever you can squeeze it in? Does it help you balance all the other areas of your life, or do you feel guilty taking time just for yourself? I haven’t quite decided yet…but I have lots more to practice!