Tag Archives: Strength

Tribute


It’s happened again. Though Megan’s been in remission for going on three years now, I’ve stayed connected to the HLH and histrionics Facebook communities. I do it to pay forward the life-saving support I received when I was suddenly thrust into the “most wonderful group nobody ever wants to be in” (as some have called it). The group saved my sanity at a time that was in great jeopardy, and so if I can help some of the terrified and bewildered newcomers with a two minute message, it’s the least I can do. But as has happened far too often over the last three years, tonight I opened Facebook and learned that another precious little soul had lost his battle against that vicious killer.

“Baby” Leo was no longer a baby. A 5-year-old who loved Spider Man and nacho cheese Doritos, Leo had two bone marrow transplants in his young life, and spent more of that life in hospitals than at home. No one except those who’ve faced a BMT knows what horrific stress the process is. In addition to the very serious medical risks, you’re basically told to pack for the hospital for 6-12 months. How in the h%## do you pack up your life for 6-12 months? But BMT’s are only done as a last resort. When that’s your family member’s last resort, you simply go home and pack. That’s been baby Leo’s and his mother’s life for most of at least the last three years.

If it sounds like I know Leo and his mother, in a way I do, and in a way I don’t. I’ve never met either of them; they live in California, and I live in Arkansas. But for the last three years, I’ve followed their journey with both fear and hope. I saw pictures of a little boy’s signature thumbs up. I regularly “liked” his mother’s updates and commented encouragement from time to time. I followed his ups and downs, noticing that if the news was good, the posts were more frequent. When there’d been no news for awhile, I learned to dread the next update. I prayed to God for Leo’s complete recovery many times. Today, at 5:06 a.m., little Leo’s journey ended, and I find myself again sobbing for an innocent child I never met.

As grossly inadequate as it is, this is my tribute to Leo and his brave mother. I need her to know that her son, in his too-brief life, made an impact on a stranger. As I hoped and prayed for Leo, little Leo gave me hope right back. His thumbs up, smiling pictures were the pictures of a fighter. He survived challenges that those of us who knew how bad the bad news was didn’t think possible. And his mother…she was my hero. Always finding the positive, even in the tough times. Always fighting for her child, always working to give him a good life, in spite of the monstrous crap histio puts your body through. You are both my heroes. I am so very sorry for the loss of your Leo. It’s the world’s loss. What’s left now are the memories of an unforgettable little boy, and a faith that God has healed him completely at last.

“And tonight I will fall asleep with you in my heart.”  –unknown


Walking In My Shoes


I have a $5.87 pair of Walmart tennis shoes full of memories. I can’t seem to part with them, though I’ve gladly purged everything else associated with that dark time. I instead occasionally choose them from the closet, strap them on, and begin my trip down memory lane.

Three years ago this month, I took my baby to the ER after dinner. After ten trips to the doctor and countless tests and scans in the last six weeks, we still had no answers, only agreement with a mother’s diagnosis that she was very sick. We’d watched her mysteriously but steadily deteriorate until that night, when we made yet another desperate attempt to get her help. After a couple of hours at the ER, we got our first distant hope of an answer, from a doctor who said she needed to be at Children’s in Little Rock. He saved her life, the first of several times to follow. After another hour waiting for an ambulance, I learned there were none. How does an entire region of half a million people run out of ambulances? At one in the morning, I signed her out of the ER against their wishes, gassed up the car, and started off on the three hour drive. We arrived at Children’s at 4:30 a.m. with the clothes on our back…we were finally going to get her answers and relief. It ultimately took another two and a half weeks for those answers, as she careened to critical. Complete treatment was still months away. I knew none of that yet when I found myself at Walmart, 36 hours after driving to the ER, needing everything from a toothbrush and toothpaste, to a jacket in July and warmer shoes than my little slip ons, since they keep an Arctic temperature in hospitals. The cheap tennies fit the bill, and I’ve had them ever since.

As the months went by and remission kicked in, our worry began to fade that we’d need another sudden run to the hospital. We finally unpacked the overnight bags we’d kept at the ready for so long; the shoes now sit next to their colleagues in the closet. When I now occasionally pull them out, they take me back, to a time of crushing fear and stress. But somehow they haven’t stored up any residual bad feelings. Instead, they remind me of how far we’ve come, of what we survived. The memories aren’t good, but the ending was. I learned how strong I can be when I need to, which is useful, because I know the day will come when I will need to be that strong again. When I do, the shoes will be there to remind me that I can.

“Life is tough, my darling, but so are you.”  –Stephanie Bennett Henry


Forgive


“Forgiving is not forgetting. It is remembering and letting go.”  -Claudia Black

I’m making progress on this one. We’ve all been hurt to the quick by people in our lives. Some of these scars are drive-bys:  a passing but cutting wound inflicted by someone who’s otherwise a minor player in our lives, except for that moment when they’re inflicting a lasting wound. We remember, often for years. What they did or said hurts, generally because they poked a spot already soft and sensitive inside us. It’s hard not to internalize these reinforcements of our deepest fears. Sometimes these are one-off inflictions which scab over, but sometimes they cumulate, one on top of another, and never fully heal. Either way, we take these blows and carry whatever part with us that we seem unable to set down.

Then there are the slow motion injuries, delivered by someone not easily steered clear of:  a bully at school or work, someone in a position of authority, a family member. These long-term assaults on our psyches are a whole other thing altogether. Each one is unique, depending on the relationship, the giver’s intentions, and the relative power of each party. If we’re not careful, these experiences can erode our humanity, turning us into someone we wouldn’t otherwise be. Heaven knows, I’ve struggled with that at times over the years. 

But I’ve turned a corner. As I’ve put more years on the odometer, it’s getting much easier to let go. Not fully easy yet (I’m not sure I’ll ever get there), but definitely much easier. I’ve lost too much of my life carrying around baggage that only poisons me the more more tightly I hold onto it. I’ve decided I’d rather be happy. And so, I now work hard at letting go much faster. Sometimes that means walking away from a situation or a person or even a whole chunk of your life, if that’s what it takes to move on. But more often, it just means taking the thing in your hands, turning it over and studying it for a short while to mourn or to learn, having a good cry, and then setting it down and walking away. And not looking back.

“The weak can never forgive. Forgiveness is the attribute of the strong.”  –Mahatma Gandhi


Children’s Hospital

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September is Histiocytosis and Children’s Cancer Awareness month

“Children’s hospital” is an oxymoron–not just two words that don’t belong together, but a thing that shouldn’t have to exist at all. Kids are supposed to be the healthiest among us. There’s something not right with whole buildings dedicated to things that go wrong with them.

Children’s hospitals are a bizarre proposition:  a place where the parents are as dependent as their children, depending on doctors for their schedules, their information, their hope. We’re easy to recognize in the halls, even without our special tags associating us with our VIP’s. You can tell us by our not-at-our-best appearance and by one of our standard expressions of fear, worry, or fatigue. We observe an assumed code of avoidance as we pass each other in the hallway:  because we don’t wish to be seen in the clothes we slept in, we grant each other the silent dignity of ignoring each other’s unwashed hair and tear-streaked face. Our zombie appearance barely conceals the grief and guilt and sheer terror on the inside. I often wept uncontrollably as I stepped outside of the hospital during our long stay, temporarily shedding the armor that I wore inside to protect and fight for my child.

Our children’s rooms are places of tenderness, but also of terror, where every day, every visit by a doctor has the ability to change our lives forever. The hallways are no refuge. Here other parents’ children are being moved to their next test or procedure:  bald, staring vacantly, heavily bandaged, hooked up to machines. We passed too many children’s rooms where, day after day, the only visitor was a nurse. A child without an advocate, without love, is the saddest of all.

There are also wonderful stories in these places, stories of healing and miracles and love. These stories must be what makes it possible for the dedicated staff to get up and face each day. Yet I am dismayed that these institutions are needed at all. I look forward to a place and time–somewhere, someday–when no child will ever hurt again.

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” –Revelation 21:4


Rest


Why does it feel so good to lay your head on your pillow at the end of a long day? I understand the biological need to recharge, but why would God have made us so that we need rest in the first place? The Bible says on the seventh day, after He completed His creation, that even God Himself rested. Clearly, rest is good.

I’m fascinated with the concept of rest, probably because I’ve never been good at it. I’ve always been restless, feeling like I have to be doing something. Even when I was just sitting, I was reading. Or paying the bills. Or organizing something. That is until recently. Since Megan’s illness, I’ve slowed down. It was understandable when we were in full stress mode, but it’s lasted. It would be easy to assume that it’s the result of a fundamental change in perspective, which did happen. But that’s not it. Somehow, I’m more tired. I still want to get up and organize the pantry and weed the garden and clean out the garage. But for the first time in my life, I don’t feel like it. I’ve lost something permanent, some reservoir of resilience.

I’m learning that life doesn’t get any easier…it’s been a mild surprise. I somehow had the illusion that one day it would. That once I got through school or established in my career or some money saved that I could relax. But the challenges just mature as we do. And if you’re a parent, then you suffer others’ challenges on top of your own. Yet I’m surprisingly not discouraged by this revelation. In a strangely comforting way, it’s almost a relief. I’d hate to get too comfortable with this hard life. I’m pretty sure that by the time it’s done with me, I’ll be ready to let it go.

“Any fool can face a crisis–it’s the day to day living that wears you out.” –Anton Chekov


Perspective 

I met a remarkable young person recently. A friend of my daughter’s, we visited her in the hospital where she remains months after a horrific car accident which killed one parent and injured the other. In addition to this gaping loss, at 17 she now knows that she will not walk again. It’s more than anyone at any age should have to bear.

As someone who suddenly learned that there is an invisible subculture, hidden and present every day in every hospital in the country, I know what it feels like to have your life turned instantly upside down. I know what it does to your sense of safety and normalcy to spend every day in fear of the doctor’s next pronouncement. To live your entire existence in a 12×20 room which beeps incessantly, with constant interruptions which simultaneously wake you and allow you to sleep. Still, I was a little apprehensive at what we would find on our visit. What do you say to a young person who’s already lost more in her short life than I have in my much longer one?

What we found left me in awe. We visited a girl who has retained a wicked sense of humor, which she unleashes regularly. I met a girl whose smile lights up a room. I met a girl facing her altered future with strength and resilience. I have a new hero.

There is much to worry about in our world today, and I regularly weary of the headlines. But our future lies in the hands of our children. Our fate rests with the generation which includes this brave young woman and my own bright and caring daughters. I believe in them. In them, there is much room for hope.

Dear young people:  Do not bury your talents, the gifts that God has given you!  Do not be afraid to dream of great things!”  –Pope Francis


Time

I don’t know where the time has gone. We’re creeping up on Megan’s 17th birthday; later this summer her kid sister will follow her siblings into teenagehood. Seventeen. It sounds so near-final. I know I shouldn’t look at it that way, but it’s hard not to. Her brother left home a year older and never came back. No boomerang kid, no summers and Christmases back home the way I’d reassured myself it would be. He simply walked away, shoulders back and unblinking, straight into the sun and his future. Of course I’m proud of his independence and happy that he’s happy, but weekly phone calls and annual visits are no substitute for hugging him goodnight every night.

It’s impossible to say what path the girls will take. Our own journey would have been unbelievable at that point in our lives. We all must find our own direction, stumbling and feeling our way, getting extraordinarily lucky sometimes, falling face first into the pavement others. Our scars either make us hole up and hide away, or they leave us stronger…limping and bruised, but wiser and more certain of what we believe in.

I am just as optimistic about our girls’ futures as history has proven  that I was right to be about our son. They are optimists. They know how to laugh. They are smart. They are so very strong and independent…I never worry that they’ll allow themselves to be taken advantage of by anyone. But I also know that they will make mistakes…some big…and they will get hurt. And I will continue to hurt when they do, just as I always have. Except that I won’t always be right there to rub their backs and say soothing things to help make it better. I will have to count on who they have become to get them through from here. I know I won’t be ready. It’s a good thing that they will be.

“The greatest gifts you can give your children are the roots of responsibility and the wings of independence.”  –Denis Waitley