My Week of Interviews – And Sharing One with You!

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Mother’s Day was certainly unique this year due of the COVID-19 pandemic. For me, the week leading up to Mother’s Day was interesting as it was full of video interviews and preparations for various opportunities to share my story.

  • I recorded an interview with a local pastor (and friend of mind) for his Mother’s Day message
  • I recorded an interview with my local church that was used for the sermon application
  • I did a Facebook LIVE interview with my cousin, who is a children’s pastor in Erie, Pennsylvania where we talked about parenting during this pandemic
  • And I did an interview with author and speaker (any my personal friend) Sara R. Ward, for a Mothering Strong Under Stress Virtual Summit
  • Then, I found out that an interview I recorded last fall was set to air on Mother’s Day as well. 

I felt like a “virtual movie star!” Haha! Thankfully, in “real time,” I was able to stay in my pj’s on Mother’s Day to watch these things from my family room. Then, my family made me lunch and we had a wonderful, relaxing day together. Yay for pre-recordings!

I wanted to share one these interviews with you today. I am grateful to Mitch Kruse of Restoration Road for this opportunity. I hope it encourages you!

Feel free to share and send me your feedback! I love hearing from you!

Have a great weekend!

Christy

This Too Shall Pass, But What Will Remain? PART 1

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As the COVID-19 virus continues to affect our world and our daily lives, I have been reminded of another time in my own life when my plans were canceled, and fear of the unknown loomed heavy. As I’ve reflected on that time, I’ve been comforted by the reminder of lessons learned.

Because these lessons were derived from pain and trial, I certainly don’t want to take them lightly or waste them by not applying them when they could once again be relevant and uplifting. Therefore, it is with that heart and motive that I share these thoughts with you.

In 2007, my husband and I were told that our then only child, our two-year-old son, Karson, had cancer. Our toddler entered a three-year chemotherapy regimen involving port chemo, oral chemo, steroids, 22 spinal taps, injections, and more. Karson’s immune system was hit hard, and we therefore had to self-quarantine for months on end. We spent the first year of his treatment in very strict quarantine; wiping down surfaces and hand sanitizing became second nature to us. We practiced social distancing, even with relatives, and we kept in touch by sending VHS tapes of cousins playing and chatting before the days of FaceTime would have made this much easier! I remember looking at my calendar during those years and having absolutely nothing scheduled other than chemo or clinic appointments.

If you had told me, before that dreadful day of Karson’s diagnosis, that I would basically have to cancel my life, I would have told you I couldn’t do it.

If you had told my busy and social self that I’d have to stay home and away from friends and family for the sake of potentially saving someone else’s life, I would have doubted if I could make the right choices to comply.

If you would have told me that many hardships were in my future, the stuff of parenthood nightmares, I may have fallen into the fetal position and begged it not to be so.

And yet, through those three years of pain, isolation, fear, and unknowns, there was goodness too.  There was mixture of tears and laughter, dread and hope, exhaustion and persistence.

And three responses rose to the top of the heap of emotions.

Grief, gratitude, and giving.

I grieved. Oh, did I grieve! I grieved the loss of life as I knew it. I was sad that I would not experience the normal “preschool life” with my little boy. He would not be allowed to have the typical play dates and parties that his buddies enjoyed. And neither would I. I would miss out on many events, and my dreams were shoved to the back burner.

The grief would come in waves. Some days I’d feel in control. I’d be okay. I’ve got this. I can do this. I’d think. Other days, I knew I could not. It was unpredictable and often, life felt surreal. But, I learned to look grief in the eye and call it by name. I didn’t have to like it, but I needed to acknowledge it. How else could I move forward if I did not acknowledge it as a barrier to my healing?

Now, with the changes to our lives and plans due to the Coronavirus, I think we need to grieve. It’s okay to give yourself permission to be sad. I’ve heard of family vacations to Disney being canceled, anniversary trips to Italy sidelined, senior athletic seasons being abruptly cut short. It hurts. These things are heartbreaking and deserve to be grieved. Grief is not reserved for death alone. Grief is valid for any loss. And so I think we should grieve these personal losses, and the changes brought on by this new period of quarantine and social distancing.  If they aren’t worth grieving, were they really worth doing in the first place?

In between the waves of grief throughout our long cancer journey, I also experienced swells of gratitude. I learned to be thankful for things to which I’d never before given much thought.  A late night playing with toys on the family room floor by the light of the Christmas tree with my little boy who was healthy enough to use his imagination and laugh. Friends who took the time to bring a fast food meal to my front door. The fact we lived in a world where our son could have access to medication and benefit from brilliant minds who commit their time to research.

Gratitude was a game changer for me. It rerouted my train of thought from self-pity to the realization of the gifts I already possessed.

Today, in the midst of the chaos of COVID-19, I hope we can all strive to be grateful. We can hope to spread something that is not viral, a new perspective and goal of aiming to find the good in the difficult. To realize the gifts we have in 2020. Internet connections, which allow virtual meetings, emails, video games, and e-learning. What an amazing opportunity to connect and dream together about how to not just survive, but thrive. Our virtual capabilities are now our reality. Thank goodness we have such a wonderful ability! Board games, television, face-to-face conversations with our quarantine pals, phone calls, books. These things are all gifts. Have we noticed how wonderful they are recently? Have we been thankful for them or have we been taking them for granted? And once again, I’m so thankful for those who dedicate their time and talent to finding treatments, tests, and cures for our ill. It’s impossible for me to fully express my gratitude to these selfless and brilliant individuals.

And finally, the third response that rose out of the fire of our childhood cancer journey was the desire to give. Obviously, I first wanted to give all that was needed to my son. I gave him love, syringes full of medication, rides to the ER, and mashed potatoes at 3:00am when his little steroid-filled body craved them. But I learned to not just think of our family and myself, but to see the bigger picture. There were many families on the 5th floor of our children’s hospital who fought cancer just like us. Many had it worse than we did, and my heart broke for them. I wanted to give back when the timing was right, and in the years since we climbed out of the cancer trenches, wounded, but not lifeless, we have given back. We’ve served on committees, shared our story in front of crowded gymnasiums and banquet halls, attended chemo appointments with other sick children, answered the questions of panicked parents who are following in our path, donated our money, and more. And I don’t say that to get credit or recognition. I say this to show you that the desire to give grew out of pain. And it produced beautiful fruit!

In the midst of this pandemic, I hope we can all remember to give. We can remember there is a bigger picture. It’s not all about us. There are many who are weak and marginalized who can use our help. Part of that help looks like us following directions to quarantine and utilize social distancing. Part of that help may be leaving some items on the shelves once we have enough. Not plenty, but enough, so that others can get what they need as well. Some of that giving may be with your own children while they do their schooling at home. What atmosphere are you creating in your home in which they are learning? Is it one of panic, dread, and complaining, or one of hope despite grief and gratitude despite disappointment?

In April of 2010, our son received his last dose of chemotherapy. That too did pass. Now he’s 15, cancer-free, and healthy. We didn’t know this would be our happy ending when we first heard his diagnosis. We didn’t know that someday he’d be a tall, smart, and happy high school student instead of a chubby, bald and sickly child. But our journey did come to an end. We eventually returned to our regularly scheduled life, though we were changed tremendously through the battle. We learned many things, not the least of which were three main responses: grief, gratitude, and giving.

This Coronavirus pandemic will someday be finished as well. We’ll look back at these weeks and months and tell our next generations about our losses and quarantine adventures. This too shall pass. It’s true. And what do you we want to remain? What will rise to the top of the heap when all the dust settles?

For me, I hope to once again find I’ve learned to grieve, have gratitude, and give. Lessons far too precious to waste.

It’s My Book’s Birthday!

Today, after three years of labor, my book has been born! (Phew!)

I’m so excited to announce that my first book, Brownie Crumbs and Other Life Morsels, is now available on Amazon in paperback, and for the Kindle.

You can find it here:

 

Also, I had a book trailer made to give everyone a short glimpse of what the book is about – much like you’d discover from reading the back cover. If you’d like to see it, it is here:

 

 

And finally, if you’d like to follow my writing page on Facebook, you can find it here:

https://www.facebook.com/christycabewriter/

Thanks for your support, reader!

Happy Birthday, Book!

Christy

Our Reality (TV). 

  
We are not exactly “camera ready” people. We’re far from glamorous. Very far. We’re just a regular, plain, run-of-the-mill family. 

 But we’re willing. 

And it appears that’s almost as good. 

Willing to tell our story and then simply showing up when we’re called. We’ve tried to make that our practice. 

Recently we were asked to share about our son, Karson’s, battle with leukemia. How he is a survivor, and the amazing research being done that has helped make this our version of reality TV. 

The camera man and reporter met us outside on a 90 degree day. I started to melt from the heat and could feel sweat rolling down my back before we even began the interview. My husband, Kraig, had driven straight from an appointment with our eye doctor where he’d had his pupils dilated. After being asked to remove his sunglasses for the filming, Kraig squinted his way through the next hour and we laughed at his expense. I got emotional about the topic as I answered the reporter’s questions with honesty and openness. This all made for a less than perfect shoot. 

But that doesn’t really matter. 

What matters is that we were able to share our story.

That maybe another family out there who is currently in the trenches, watching their child fight a serious illness, will see a glimmer of hope. 

That maybe some more attention will be given to pediatric cancer research. 

That maybe someone will feel a little less alone in their struggle.

That maybe gratitude will trump the pain. 

That maybe this will be the boost someone else needs to share their own story. 

That maybe willingness and showing up is even better than perfection and glamour, after all. 

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Here’s the link to the news story: 

After the Cancer Diagnosis: 5 Things I Learned When My Son Got Really Sick

k31_2I have to admit that sometimes I still cringe when people refer to me as a “Cancer Mom.”

I never signed up to join that club. The cost to join is enormous. But, join it I did on February 9th, 2007 when my then-two-year-old son was diagnosed with leukemia.

To say that the journey of helping a child through cancer treatments is a long, tough road is an understatement. It’s just plain rotten.

And, though it’s been several years now since my son finished his chemotherapy treatments in 2010, I still can clearly remember the questions and emotions that arose within during the deepest trenches of his journey.

I’m far from an expert, but  I am a Cancer Mom. And so today I share five things I learned when my son got really sick.

1. The learning curve is steep, but you can make the climb!

The overwhelming days right after diagnosis

I’ve never felt more overwhelmed or confused in my life than the first few days of my son’s diagnosis.

I do not have any kind of a medical background, so when the nurses would say phrases such as “Ped’s Hem/Onc” and “We’re going to do an LP to administer IM,” I wasn’t sure if we were still speaking English. It’s okay. You’re not alone.

There is SO much to learn about blood counts, medications, clinical trials, doctors, Child Life… even where to park at each visit to the hospital—it’s overwhelming. But, you can do it! There are no learners more eager than parents wanting to help their child.

ASK QUESTIONS! Write them down and take notes. You may even feel like you’ve earned a medical degree by the time it’s all over… but come to think of it, I never have received my diploma in the mail.

2. Your doctor’s name is not Google.

I love to read and follow various blogs and news sites. And, when my son was first  diagnosed I was so tempted to “Google” every symptom he presented. I wanted to know statistics and treatment plan expectations, etc. I think research is wonderful and statistics are helpful overall, but when you’re running on little sleep and your heart is broken, it’s better to get your information straight from the doctors and nurses that are caring specifically for your child.

Sometimes too much information at your fingertips can only lead to confusion, fear and frustration.

3. YOU are your child’s biggest advocate. Speak up!!

Healthcare professionals are superstars. They are invaluable, awesome heroes who help us throughout our child’s illness. But they are human.

Sometimes the people taking care of your child might be making a decision they feel is best, but you have a hunch that there is a better option. SAY IT! You are your child’s biggest advocate and you must speak up. Doctors and nurses appreciate parents and guardians who take a proactive role in their child’s care. Listen, ask questions, listen some more, and then share your opinions and follow through with the care plan.

4. Make the most of it.

If we’re being honest here, we all know that being a parent of a child with cancer is no joyride. At times it’s just plain crushing to your spirit. But, there are ways to make the most of the journey—even if it’s not how you would have designed your moments of joy.

My son loves trains and so for three years of our life we rode the People Mover train between Riley Hospital for Children and other nearby hospitals in the IU Health system. Back and forth, back and forth. It’s free, and honestly, it’s less than thrilling, but to my son that was something to look forward to each time we went to Riley. We found joy in that crazy monorail.

At home, there were nights when my son would wake up starving at 2:30 a.m. because of being on steroids. I never dreamed I’d be making mashed potatoes and chicken nuggets in the middle of the night for a chubby, bald, demanding toddler. But, looking back, I  remember some of those moments with actual fondness. Sitting across from a little boy who couldn’t shove the food into his mouth fast enough in a quiet, still house was actually kind of precious. We talked together and made memories.

It is possible to make the most of even the darkest nights.

5. Find something to be thankful for every day.

Some days it may be really hard to find something to be thankful for if you’re watching your child suffer, but it’s not impossible. And, I’ve found that gratitude takes up a lot of room in your heart and tends to push out some of the less-attractive emotions.

Look around. What do you see that you are thankful for today? Is it something as simple as a short hug or conversation with fellow cancer parents down the hall? Is it the fact that we have access to world-class care and medications in our country – and right in our home state? Is it the sparkly sticker that a volunteer stuck on your child’s hospital gown, earning a smile from your precious patient?

The fact is, no matter how bad you have it, there is probably someone who has it worse.

Even if you have to phone a friend for help, try to find something to be thankful for every day.

Daddy Loves You

IMG_4051 2My memory of the moment is both crystal clear and fuzzy at the same time. It’s hard to explain, but yet if you’ve ever been in shock, you’ll understand.

My body felt numb and weak and apparently that was obvious to those around me because a nurse pushed a stool underneath my legs and helped me sit down beside my son’s hospital bed. I hadn’t even realized until I sat just how much I needed that support.

My two-year-old son, Karson, was laying on the bed along with Lyle the Lamb, his stuffed companion. My husband, Kraig, stood on the opposite side of the bed and rubbed Karson’s little back. Our heads were reeling with the news we’d received just mere hours before. Doctors were telling us that our toddler had cancer. Now we were crammed in a small procedure room at a children’s hospital watching them prep our son for a bone marrow biopsy.

I was experiencing feelings of denial and shock. Our son had been limping for a week and he presented only mild cold symptoms. Why were they suddenly throwing around words like, “leukemia,” and “chemotherapy?” Wasn’t this just a virus that would pass on its own? Do we really need to do this procedure?

But deep down I reasoned that if these trained medical professionals thought there was enough evidence of cancer from a small bit of blood work, then I must allow them to proceed with further testing of Karson’s bone marrow. They had explained that leukemia starts in the marrow and they must take a look to find out what type of leukemia we were fighting.

And so, in what was literally half a day, we went from a normal morning routine to that dreaded procedure room in a hospital two hours from our house. I can still smell that moment and feel the sterility and darkness of that room. It was awful.

To be completely honest, I’m not even sure I want to draw up those memories or that emotion ever again. I wrestle sometimes with the watershed moments that were burned into my mind in the coming three-and-a-half years of my son’s chemotherapy and treatment. Some memories can bring the sting of tears in a matter of seconds. I used to see them often when I closed my eyes at night. Now it’s much less frequent, but the pain is just as raw. It hurts. So you may ask why I write about it or even bother to relive it at all?

I guess I don’t want to waste it.

As awful as Karson’s cancer was, there was so much good that came from it as well. Most of that good came in the form of God’s gentle presence in the midst of the rough storm. Kraig and I learned so much and felt like we were matured in our faith in a way that would otherwise not have been possible.

And on February 9th, 2007, as we took the first shaky steps into that journey, my husband… my son’s father, told me of how he now understood the love of our Heavenly Father in a deeper way. It was the first of many things we would learn along the way.

Kraig recounted the horrible moments of having to physically pin Karson down on that hospital bed as doctors used a large and painful needle and tools to extract bone marrow from our little boy’s hip. Karson was awake and acutely aware of the intense pain. As he lay there on his stomach, his face was turned toward his daddy who was firmly holding him still and talking to him. Karson was screaming and crying for the pain to stop and looking at Kraig with questioning eyes as if saying,

“Why, Daddy?”

“Why are you letting them hurt me?”

“Please make it stop!”

And oh, how we wanted to!

Kraig and I would have crawled onto that bed in a heartbeat and taken that pain instead of watching our son have to experience it. But we couldn’t. We knew that we had to allow to the doctors to proceed. We had to allow them to extract bone marrow so that they could determine what course of treatment would be most effective for fighting this cancer. But we couldn’t explain all of that to a two-year-old. Even if we had, he wouldn’t have understood.

And so as Karson screamed and pleaded with his Daddy, all that Kraig could say in response was,

“I love you, Karson.”

“I love you, buddy.”

“Oh, Karson! Daddy loves you so much!”

It was heartbreaking and profound.

And as Kraig shared with me later, he thought about how many times in life our Heavenly Father has had to hold us down through pain, trial, sin and ugliness. And we don’t understand it. And perhaps even if He told us, it wouldn’t matter. All we need to do is look into his eyes and hear His words.

Daddy loves you.

1 John 3:1 says,
See what great love the Father has lavished on us, that we should be called children of God! And that is what we are!”

I don’t get it. I can’t mentally grasp it or figure it out. I don’t know why my Heavenly Father has allowed pain in my life or my child’s life. I simply don’t know.

Yet the lesson Kraig learned in that moment, I continue to learn as well. I submit to my Father’s hands holding me firmly through the pains of this life, and listen to his almighty and loving voice reminding me of His unconditional love.

I know my Father’s love. And that’s all I really need to know.

A Thanksgiving Dinner

As a guest blogger for Riley Hospital for Children, where our son received treatment for cancer as a small child, I’ve been asked to write about a variety of topics. Recently I was asked if I could write something for the hospital to post on Thanksgiving Day. I thought about it for awhile and then wrote the following entry. I cried as I typed some of the words. Though it’s been several years, (Karson was diagnosed February 9th, 2007 and underwent more than three years of chemo until April, 2010) the emotions are still “raw” and just under the surface. I suspect this may always be the case. But, I felt so grateful and blessed as I recalled this day and so I thought I’d share my thoughts on my personal blog as well as on Riley’s: http://blog.rileykids.org/

Happy Thanksgiving!

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A Thanksgiving Dinner

My husband and I sat in the cafeteria at Riley Hospital for Children and watched as our son scarfed down his meal. I slowly ate my own food as my stinging eyes tried to hold back tears. The lump in my throat was hard to clear as memories flooded my mind.

I thought back to four-and-a-half years before that day when we sat in that very cafeteria, at a table just across the way. As I glanced at that empty table I recalled our first meal in that cafeteria. My husband and I could barely eat, but we were encouraged to do so by our own parents who had come to support us. Our then two-year-old son had just undergone a terribly painful procedure called a bone marrow biopsy and he was now laying beside our table in a red Riley wagon. He was twirling his fine blonde hair between his forefinger and thumb trying to soothe himself with a habit we knew would soon be taken from him with his impending hair loss. Karson had no interest in eating that night. He didn’t even want to sit up or smile. Our hearts broke with the news that our toddler had cancer and we had more than three year of chemotherapy ahead of us. It was going to be the fight of our lives.

As I refocused my eyes back on the present and on our son who was not only sitting up at the table, but laughing and showing off his trademark large appetite, my heart filled with gratitude. We had fought the fight. It was behind us now and our son was alive and well.

Those four years in between those two meals had been filled with valleys. Some moments are difficult to recall and even harder to share. But that day in the cafeteria, it hit me. Not only was that moment a blessing, but there had been thousands of blessings all along the way. Sometimes in my grief and exhaustion I failed to be thankful for them. Now I began to mentally count them.

The morning our son had been taken from us by a surgeon we’d met just moments before, I’d felt fear, sadness, and dread. But now I thank God for that brilliant surgeon and his colleagues who operate on the sickest of children with delicate care and skillful hands every day. When I watched a toxic poison dripping into my son’s IV line I wept bitterly as I grieved the loss of healthy cells and life as I knew it. But, now I thank God that brilliant doctors and researchers have figured out how to treat diseases in such efficient and effective ways. When a friends’ child was not as fortunate as my own and lost their battle, my heart broke. But I continue to give thanks for each heartbeat, smile and moment those parents, and each of us, are granted.

That day in the cafeteria at Riley, it struck me hard that each step in life is a gift. Every moment, even the ones I’d rather forget, have something for which to be thankful. And as difficult as it is for me to understand, I believe that sometimes the trials of life turn out to be part of the blessing.

And on that summer day in the Riley cafeteria, I sat with my husband and healthy son and enjoyed a thanksgiving dinner.

Bear Cub on a Barbie Bike

Down the street my little bear cub rode on the pretty, pink and purple Barbie bike with it’s matching girly training wheels. It should have been ever so cute.

But it wasn’t.

The bear cub on the bike wasn’t my little, pigtailed, feminine three-year-old, but instead her tall-for-his-age seven-year-old brother. His knees came up above the handlebars with every turn of the pedals. The training wheels gradually bent upward as his body weight tipped from one side to the other. His red helmet clashed with the pink and purple paint. And frankly, he looked pretty ridiculous.

My bear cub on a Barbie bike.

I call him my bear cub because he’s my son and because I turned into a Mother Bear that afternoon. I guess if I’m being honest with myself, I’ve been a protective and fiercely loving Mother Bear for seven years.

That’s really the whole problem here.

You see, when our son was a toddler he was very ill and endured over three years of chemotherapy after a devastating leukemia diagnosis. During that time we hibernated. I was a Mother Bear with a sick little cub and I did all that I could to keep him safe and sound while he healed. Our hibernation did not include bike rides because they could lead to falls and scrapes and bruises, especially for a child who often had low platelets and was very fragile. And since he never asked to ride a bike, we simply didn’t put him on one.

Today he’s a healthy and strong young man who was the tallest child in his first grade class. He plays basketball and baseball and swims like a fish. He’s big for his age and you’d never know by looking at him that he fought cancer as a preschooler. He’s growing up right before our eyes.

But he still can’t ride a bike.

And one thing he learned in first grade was that his friends can.

Now he knows what he’s missing and he wants to learn… desperately enough that he was willing to ride his little sister’s girly bike.  We’d tried his own bigger and boyish bike over and over again to no avail. He just didn’t have the experience of riding a smaller bike to know what it felt like to balance without training wheels. My husband even tried putting training wheels on his bike, but bikes built for 82 pound kids just aren’t made for training wheels.

So there we were on a sunny Sunday afternoon going down the sidewalk in our neighborhood. My son on the bike and me walking behind with my eyebrows raised and jaw clenched… just waiting for the poor training wheels to finally burst off and the exhausted bike with it’s rider collapsing to the ground. But, that did not happen. In fact, he did very well. Granted he had to get off the bike every once in a while to kick the bent training wheels back down so they’d reach the ground, but otherwise it was smooth sailing.

Until he rode by a yard full of kids.

Now, thankfully my little bear cub kept pedaling on and was completely oblivious to the conversation that took place amongst his peers. But I wasn’t. I was walking far enough behind that by the time I got to the kids I could hear their laughter, see their pointing and understand their mocking comments about the big boy riding a small pink bike. And oh, did my Mother Bear instincts kick in! I kept on walking and kept my mouth shut, but I sure wanted to go give those little kids a grizzly piece of my mind!

I held on to my tongue that day, and other days my husband and I held on to the back of my son’s bike desperately trying to help him learn to balance.

But it’s hard to know when to let go.

I probably should have let go years ago and allowed my little cub to ride a bike, even though it was scary for his mother. I probably am not a good one to help him learn to ride his big bike now because I’m afraid to let go and watch him fall.

But I can’t hold on forever… it wouldn’t be healthy if I did.

In fact, I’ve had to let go more often. I’ve had to let go of his bike and I’ve had to let go, albeit ever so gradually, of my children. It’s good for them to learn to ride a bike, even when they fall and get hurt. It’s good for them to grow up and become more independent and confident, even when it hurts my heart.

It’s hard to know when to hold on and when to let go.

But it seems like letting go is necessary. I’m going to have to send my children off to scary places… like second grade… and heaven forbid, middle school and high school. It’s why I get choked up at the end of Toy Story 3 when Andy’s toys are all waving goodbye to him as he heads off to college. I’m just afraid I’m not going to handle my own kids growing up with the grace and poise of Buzz Lightyear.

But grow up they will. I really wouldn’t want it any other way. But it’s hard. And I know those who have children who they have watched graduate from High School, enter the work force, and walk down the aisle, laugh at me and think I ain’t seen nothing yet.

So please, don’t remind me. I must take this one day at a time. One letting go at a time.

I’ve stopped hibernating now and I’m doing better at allowing my little bear cubs to roam on their own and grow to be more independent and confident.

And Barbie bikes, high school graduations, or wedding days, I pray that this Mother Bear will enjoy both the holding on and the letting go as my bear cubs grow up before my Mother Bear eyes.

The Truth About Riley Nurses.

I have been asked to be a guest blogger for Riley Children’s Hospital, where our son received much of his chemotherapy and treatment for leukemia. I will periodically be writing entries on this blog that pertain to our “Riley Journey.” The hospital will then pull entries they feel are appropriate and put them on their Riley blog here: http://blog.rileykids.org/ This is one of those entries. I thought it was fitting for National Nurses Week (May 6-12, 2012)
Thanks for reading! 

The doctors at Riley are amazing. Their knowledge, research, and leadership are stellar and effective. I am so very thankful for them.

But, let’s be honest here. Where would we be without the nurses?

I think even the doctors would agree that the care given by the nurses at Riley Hospital is what makes the “wheels go round.” The doctors are the engines, but nurses are the coal that stoke the firebox of care given at Riley. And that makes the Riley Express sail full-steam ahead!

Not to single out any nurses, but I know first-hand that the ones on the hematology/oncology unit at Riley are amazing. I remember walking into that unit for the first time ever with a very ill child. My husband and I were shell-shocked, stunned, in denial and overwhelmed. The nurses knew not only how to handle our little boy, but they knew how to handle us too. We were given “baby steps” and the nurses knew just how much information to give us along our difficult journey.

During some of our son’s painful procedures the nurses were the ones who pulled up a chair for my wobbly body and slid it under me while gently patting my shoulder. They didn’t judge, mock, or express inpatience. They were calm, soothing, smart and even witty.

Our son’s nurse practitioner became like family over his three plus years of chemotherapy. She knew his likes, dislikes, temperament and medical chart. She always had time to listen to him and could amazingly always “find” Thomas the Tank Engine in his ear while looking through the otoscope. She helped put him at ease through countless blood draws and spinal taps, making them become almost effortless instead of dreadful. It takes a special person to do such a thing.

She not only listened to our son, but she listened to us parents. She was knowledgeable and yet not intimidating. She was realistic, but not overwhelming. She was sweet and friendly and gentle. She made the “wheels go round” during our trips to Riley. She’ll always be a part of our family’s history. We send her a Christmas card… it’s the least we can do!

So, as wonderful as the doctors are at Riley, I just wanted to take a minute to thank you nurses. You probably don’t get as much “limelight” or attention. You do a lot of paperwork and busy-work, but please know that to us Riley parents it’s NEVER busy-work when it has to do with our child.

THANK YOU nurses for ALL you do for the children of Riley Hospital! Keep that Riley engine running full-steam ahead. Your passengers sure are grateful!

Parental Brain Delay

Do you remember those commercials several years ago that showed two images and claimed: “This is your brain…” and, “This is your brain on drugs?” Well, I think maybe we could draw a similar comparison in another category called: “This is your brain…” and, “This is your brain now that you have a seriously ill child.” Yes, the two images would appear quite different, I’m sure. I haven’t actually seen my brain since having a child diagnosed with cancer, but I’ve certainly missed some of the activity that used to go on up there.

You know what I mean… trauma affects people. It affects us physically, emotionally, spiritually and intellectually. And since I aim to be brief here, I’m going to focus only on the intellectual component right now. I wouldn’t want to think too hard anyway and stress the brain cells I have left…

You see, five years ago our toddler son was diagnosed with cancer. My world completely changed. My routine, my hopes, my thoughts and my goals were all stuffed into an imaginary blender somewhere and turned on high speed. Everything was whirled around and plopped into my lap and was declared my “new normal.” And I accepted the challenge. When your child is fighting for their life, you don’t even think twice before engaging in the fight with them. I wished I could take the cancer from our son, but I couldn’t, so I did everything I could to help him through his long course of chemotherapy treatments.

But it was during those months of fighting and focusing on our son that my brain seemed to turn into scrambled eggs. And if you have, or have had, a child with a serious illness you can probably relate. I’m going to call it Parental Brain Delay or PBD for short. I was going to call it PFASIWTCATLBF for “Parents Fighting A Serious Illness with Their Child and Therefore Losing Brain Function”… but I thought that might be a bit much to remember, so let’s just go with PBD. Anyway, I use the word “delay” because I really believe the information is still up there… it just takes a little longer to get anywhere.

During the hardest months of my son’s treatment my brain felt like an empty waiting room. Clarity and discernment had not checked in at the front desk! I tried to remember certain events or moments that had occurred in the weeks before my son’s diagnosis, but they were fuzzy. Instead I’d hear medical terms and the names of cancer drugs echoing in my head “Intrathecal Methotrexate… Intrathecal Methotrexate.” Seriously, I did.

One night I literally begged my husband to play Trivial Pursuit with me just so I could utilize and exercise my brain. I could feel it turning to mush. And yes, we played Trivial Pursuit… and then I felt even dumber. Bad idea.

Another time while at Riley Children’s Hospital in Indianapolis, where we did a lot of the most difficult treatments,  I spoke even though my brain delay was in full-swing. You see there is a monorail train that runs from building to building on the medical campus where Riley is located. This train is officially called the Indiana University Health People Mover. Very nice. However, our son loves the Thomas the Tank Engine train characters and there is one train in particular that is long and sleek and grey- sort of like the People Mover. This train’s name is Spencer.  And so, as you can gather, our family affectionately called the People Mover “Spencer.”

And, to help our son keep a positive perspective on trips to Riley Hospital, we did all we could to make the day special and fun for him instead of solely focused on blood draws, spinal taps and chemo. So, every time we went to Riley (and it was many times!) we rode that People Mover after his appointment. Back and forth, back and forth, just for fun!

Well, back to my brain delay… one day a nurse asked me what we were going to do after our chemo appointment was finished and I told her proudly and with a smile that we were going to ride on Spencer. She smiled back sweetly and then wondered aloud who Spencer was. I felt pretty silly. If my brain would only have caught up to my mouth to remind me that not everyone knew the monorail as Spencer it would have been helpful. I felt almost as silly as the time I told a nurse that we’d help our son lay flat for “two Georges” until his spinal chemotherapy could work it’s way up and down his spine. To me, the fact that we told time at that point by Curious George episodes (which last about 15 minutes each and were much easier to relate as a span of time to our child) slipped my mind. So by telling the nurse that we’d help for “two Georges” instead of a half-hour earned me another sweet smile and blank stare.

And what about the time I was filling out one of the countless “medical forms” while at the hospital. Instead of writing my husband’s first name in the blank where it asked for our son’s father’s name I wrote “Daddy” instead. Yeah… oops. They needed me to be a bit more specific.

I know the nurses get a good laugh out of us parents suffering from PBD. They probably keep a notebook of our silly questions and faux pas in the break room, but they are sweet about it nonetheless.

So to sum up: when you are a parent of a child fighting a serious illness your brain cells are also fighting confusion and delay. But wait! The good news is two-fold!

First, you’re not alone! Come on, don’t even pretend like I’m the only one who has suffered from PBD… that’s right, own up to it, it will make you feel better!

And the second bit of good news is that brain function does seem to return. Now that I’m five years out from my son’s diagnosis I’m starting to feel those IV pumps in my brain pushing fluids again. There’s hope for you too!

Now wait… what was I talking about?