I distinctly remember my first time visiting the childrens’ unit at Cedar Springs Hospital. I was new to the city as an EMT, and while I had run my fair share of adult psychiatric calls, this was my first child. Actually, in my naivety, I didn’t even know there was such thing as a psych unit for kids up to that point.
There I was, walking into the building for a boy under the age of 6 with an arm injury… thinking he must have been the son of someone who happened to be visiting. I’m certain there was an audible squeak of my boots stopping abruptly against the hard floor as I turned the corner to find the entire wing of the building occupied by children of various ages. A staff member began rattling off the details of how he fallen out of bed, and my mind was searching for the inexplicable reason that he had been sleeping in a tasteless wooden bed in a duplicated room with hard sterile floors instead of tucked into the shelter of his parents’ hugs and kisses in his own familiar bedroom. I was silently trying to piece together this mystery when another staff member ushered my patient into the hallway; a dark-haired little guy, hardly taller than my hips, padding silently in red footie pajamas.
That night I learned one of those hard life-truths that you don’t learn little by little; one of those truths that smack you in the face like the concrete-sting of a belly flop into icy water. Though I lost that bit of innocence on that call I still had many questions bouncing around between my mind and the soul that stared out at me from those young brown eyes.
It wasn’t long before running psych calls for youngsters wasn’t unusual for me. I ran the frantic 9 year old who pleaded with his grandma to give him one more chance after tearing apart the whole house. I ran the 15 year old cutter who had run away from home, and the 13 year old boy who successfully took his own life. I saw a new world of confusion and pain and I struggled to understand it. There were those who were vocal about their opinions; it was easy to assume that a lack of parenting or responsibility had created this brokenness, or that these were just bratty children needing firmer discipline. While I was never one to say it out loud, I suppose in some ways I thought the same thing. I wondered if the guardians were just tired of dealing with the hard work of parenting, and wanted to pass the adversity off to someone else. I wondered if these kids felt so invisible that their gashes and outlandish displays of defiance were the only means left to spark some flames of attention from the people they craved it from. While I refrained from joining in the open toxic banter of judgement, I still pondered these questions because some things you just can’t understand until you’ve tasted them more personally.
Fast forward several years to my own boy standing at the dawning of teen-hood. Two parents who loved him unconditionally, a stable home in which all his needs were met, a routine of discipline and appropriate freedom, and yet his soul was changing, darkness clouding his once crystal blue eyes. Despite all the good things in his life my young boy had experienced tragedy that he was never meant to have to bear. His normal had been ripped and shaken by such affliction over a short amount of time his soul halted in shock from the uprooting of all he knew to be true and safe. So began this terrible and frightening battle of his entire being trying to reconcile things that his young soul was not created to understand. He learned to build impenetrable walls to guard his bleeding wounds from further pain. He forced himself to not feel so that he would never again know the devastation of a hurting heart.
Somewhere between watching his destruction from an utterly helpless distance, and screaming helpless tears into starlight night after night I came to understand the full story of that boy in the red footie pajamas.
It’s not for anyone to judge why these kids are the way they are, because the truth in all of them is that at some point they experienced a hurt that was more than they knew what to do with. There are insecurities and scars and genetic dispositions, and I guarantee you not one of these kids suddenly woke up one day with a desire to be angry or dangerous or out of control or truthfully, an outcast. There is a world of hurting young people who need not our judgement and our assumptions, but our understanding and our unbiased desire to reach out to them and help fill those gaps and holes that created their unbalance to begin with. What would the world look like if all the adults stepped up to give the attention and meet the needs that these kids so desperately need met?
It is with greatest sincerity that I say thank you to the adults that have stepped in, or even been forced in, to stand in the gap for my son. I get it, I do. I know that your 25th patient contact of the day is exhausting. I know that you came in not feeling well to begin with, or with your own trouble going on, and yet you still showed up to give of yourself to help my boy, and so many others, with his healing. I know that in the big scheme of things, the little issues these kids are making monstrous seems so outrageously ridiculous that’s it’s tempting to give a shoulder-shake of reality. I know that after a long day, 2am was not the time you felt most compassionate when you had to get up and deal with a new admission, or a meltdown, or a half-hearted suicide attempt for attention, or an all-out brawl. I know that there are a lot of days you wonder why you chose this, or you think about moving on. I know that it may seem thankless and pointless some days, and that you may question whether you are even making a difference. The truth is you are some of the bravest, most selfless, most compassionate people to walk this earth. This world does need you, and you are making differences, even if they are tiny baby ant steps. In our universe, those ant steps are huge.
So thank you for what you do day in and day out; for the sacrifices you make and the things you endure so that every story has a chance at a happy ending, and that every hurting young heart that crosses your threshold knows that someone fought for them, even the boy in the red footie pajamas.
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This was such a rotten week you guys. I would recount it for you, but seriously I spent so much of it face down I’m not even sure which days were which.
Mostly what I want to share with you about this week though is today. Today was a day of scrolling through the camera reel and remembering, or maybe just really seeing for the first time the big and beautiful and maybe even amazing things that had everything to do with survival, whether I knew it at the time or not.
There was ugly. There were struggles and new limits and fears and just brokenness, but won’t you look with me? See the undeserved beautiful that cast a beautiful afterglow through the storms.
There were tender snuggles.
There were endless warm blankets and hard day socks. Never forget a pair of hard day socks.
There was HILARITY (slash panic) when my children somehow just haphazardly grabbed a mole and brought it into my bedroom to show me. A MOLE people!!
There was awe at the perfectly inspiring timing at which my sweet mama shared her sky with me from several states away.
There was giggling and excitement as the kids set up our tent in the backyard for an end of summer camp out, which I could see in plain view from the giant bay window at the foot of my bed.
There were breathtaking flowers along the walkway to the hospital.
I wasn’t stalling, there were like, a LOT of them!
There was cheering as my soon-to-be-school-goer beat me at his new letter sounds game.
There was the sweetest little pregnant mama houseguest who seems to think I’m the bestest snuggler of all….
And after… I lost count how many… days of not leaving home for anything other than the doctor, after a few dry runs and a lot of help from my wingman this morning, I busted on out with my two big boys for this…
I don’t quite remember how I got back into the house, but I did in a sore, exhausted, pale-ish, and wonderfully happy and satisfied heap, where I intend to stay well into the snuggles of the evening. Who knows, maybe we will find another adventure or two to cram in before sundown. 😉
Look back through your own week; did you miss any hidden gifts that might have been the very things that carried you to the weekend?
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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.
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.
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?
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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.
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!
Tecpr2 and Kif1a.
6 months ago I would have looked at these strange symbols and had no idea what gibberish this was. Today though, those 11 characters form the mold of a very different shaping of my life.
I have sat on this for some time. Partly because it has taken awhile to start to gather my thoughts. Also because some part of me must have been hoping for something different.
For years we have been treating two of my beautiful little ones for weakness and tight muscles in their lower bodies. For one of them we attributed it to his premature birth, and the other we figured was just growing faster than her muscles, as she stretched lean into her preteen years. We had literally the best therapy team on the planet; their skill and knowledge just off the charts, combined with the loving compassion that has allowed them to become dear friends well beyond just therapists. When we moved out of Colorado though, we had to start over. It was a very lengthy process of finding a new primary doctor and trying to get the kids set back up in therapy.
It was the very first time our 12 year old girl had been seen by her new pediatrician. Honestly, I was expecting to walk in, explain we had been doing physical therapy for tight muscles and frequent ankle sprains, and be quickly ushered out with a prescription in hand to continue our weekly routine. This doctor took pause though. As she evaluated my girl’s tight muscles, and noted her brisk reflexes, she suspected something more. She did give us the referral for physical therapy, but she also sent us with a referral to be seen by a pediatric neurologist. I really hardly gave it a second thought. It was not uncommon for us to be sent to a specialist here or there, and after what we went through with our youngest daughter, I never minded an extra appointment just to give us some peace of mind.
We pulled her out of school early one afternoon to have our first trip to the Children’s Hospital to meet the neurologist. I was still limping along on crutches after hip reconstruction, my littlest guy was tagging along as usual, and I expected we would be in and out. After answering a slew of questions, the kind doctor with an accent I struggled to understand began examining my girl. He tested her reflexes again and again; reflexes I didn’t even know existed (did you know there’s one on your chin??). Back and forth he went, stretching and re-stretching the muscles of her legs that refused to soften. The room was mostly quiet aside from the occasional question, and the sound of my little guy playing with a toy dump truck on a nearby shelf. Then with a reassuring smile, the doctor said he needed to ask a fellow doctor a question, and he left the room. The minutes started to drag, and the dump truck had been abandoned for clingy questions of when we were leaving by the time the doctor came back in. He had with him a confident and no-nonsense woman who introduced herself as the chief of pediatric neurology. She proceeded to repeat some of the stretches and tapped reflexes again with the funny rubber wand. “Do you see what I mean?” our doctor asked, and immediately my back tightened and I was acutely aware of the thickness of the air I was trying to breathe. The chief doctor agreed with him, and our doctor motioned to my young son now curled up on my lap, and said, “he has the same thing.” At that point, even though it wasn’t even his appointment, the chief asked if she could look at our boy also, and she lifted him up on the table to engage his muscles and reflexes as well. And then she asked if she could check mine. My mind was whirling at this point, with a hundred different questions.
When the examination concluded, the youngest went back to perusing the shelf of toys and books, and the Chief of Pediatric Neurology turned to address us. She said, “in all my years here, I have only seen one other patient with these symptoms, and he had HSP.” She went on to explain that she would request a geneticist to come talk with us, then she bustled out of the room. I sat there wide-eyed, my heart pounding with a sense of dread. Our kind doctor went on to explain that Hereditary Spastic Paraplegia (HSP) is an extremely rare, inherited condition that causes progressive weakness and spasticity, most often of the lower extremities. He said that they would have to do a brain and spine MRI and some genetic testing to confirm, but clinically he was already giving the diagnoses of HSP based on his exam. He said we would need to be seen in the physical rehab department for Botox and AFO’s (ankle braces), and that we needed to increase the number of days in a week we were receiving physical therapy. He was so kind and gentle, and after so many harsh and busy doctors, it was such a gift to my heart that this doctor showed intense caring and compassion as he delivered the news that was about to change the landscape of our future. A woman from genetic counseling came up and asked me about a million more questions, and then we walked back out into the brisk gray to go on about our lives.
The approval for the genetic testing took for-ever, and once the blood was taken, it took even longer to get the results back. In the meantime we set about getting the MRI. The first time around my girl walked in brave, but when the icky contrast was pushed through her veins toward the second half of the scan, she got uncomfortable and wiggly and eventually they had to discontinue the scan. The second time we scheduled it, I requested she be sedated so she would be more comfortable for the two hours laying flat on her back in this noisy tube. If you have read my take on the MRI experience (click here), you will know it’s not my favorite thing, and I was feeling very protective of my little treasure, and a little sad they hadn’t sedated her to begin with so we wouldn’t have to go through this again. The second time we showed up for her brain and spine to be scanned, we got through the fear of another IV, and then she drifted off into a silly, giggly sleep while the great machine rumbled and clicked. After that it was a lot of weeks of waiting, and not only did the thoughts leave the forefront of my mind, but I truly started to convince myself that the results were going to come back fine and we were going to move forward grateful that this wasn’t going to be part of our story. I mean really, there has been more time than one that a doctor has gotten me all worked up that my kid has something serious wrong, and it’s turned out to be nothing. We’re good.
I’m sure by now you have figured out that we did not get that “nothing” report that I hoped for. We came back in to go over test results and for an official exam of the baby boy of the house, and received the confirmation that both of them have mutations of the genes Tecpr2 and Kif1a. My sweet babes, 0.5 in 100,000 people with this neurodegenerative disease.
Later I will share with you what we have learned so far and what the immediate future looks like for us. There has been grieving, but also hope and determination as we figure out how to best roll with this new challenge.
Determination is strong, joy reigns, hope is *always* here.