Simply Emerging

Simply a mom emerging from childhood cancer.


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allistaire

Dear Allistaire Kieron Anderson – beautiful name, soul, and child,

Your mom asked if friends would write memories of you and the meaning you hold in our lives. Yet, a single card would not be adequate. Truly, this blog post is woefully inadequate. How can a piece of paper, bits of electronic data, or even all of the words imaginable capture the meaning of your precious little life to me? How special you are, for what you’ve done, both literally and figuratively, for me and so many others.

I first met you shortly after your second birthday. I remember your bald little head and your tenacious little spirit, cruising the halls of the cancer unit on a tricycle. You had energy and fire! At the time, Caden was refusing to get out of bed due to the pain cancer inflicted on his bones. Watching you gave me my first dose of hope at a time when my spirit was painfully crushed. You showed me the resilience of children through your bubbly personality and silly antics, all while tolerating the onslaught of chemo and cancer treatment, stuck in a hospital, connected to an IV pole. The way your mom personalized your hospital room, complete with decorations and a cute card on the door with your picture and the quote, “Though she be but little, she is fierce.” It gave a feeling of home away from home to an otherwise sterile environment.  She protected your nap time with little signs indicating as such.   Everyone who encountered you there knew you were a loved, cherished child. You are a prime example that the children cared for in that hospital have stories and are unique little people, not just another patient. In fact, you taught me that you can love a nurse enough and draw that love back in to the point that she can no longer be your nurse. But isn’t that what this life is about? To love others as God himself loves us? Thank you for being that tangible arm.

You played a part in showing me a level of joy I did not know was possible before cancer. The immeasurable tears, heartache, pain, and fear felt for your life during your first relapse gave rise to simple yet intense bliss in seeing you hike the M trail near your home and riding unfettered on our boat. Oh, to remember the days when such basic things felt so impossible, but to witness you do these, yes… overwhelming joy and gratitude.

You have been a friend to my children. Your bond with my son, only possible between children that have experienced what you two have, has been an important part of teaching challenging life lessons and healing. Your giggles will always resonate in my heart over that crazy pair of clowns pretending to be doctors in the hospital hallway. Is there really anything more precious in this world than the laughter of a child? You’ve impressed us with your ability to down syringes full of medicine in record time yet take hours to finish a single cup of milk. Caden feels quite indebted to you for introducing us to the most wonderful Pagliacci’s pizza (me, too). In your final days at home, thank you for asking to see Caden and Camryn, and giving them the opportunity to see that though cancer threatens your life and ravages your body, your spirit and playful nature remain.

Allistaire, because of your life, I have been introduced to people that have changed mine. Your dad with the gentle way he speaks to you and a friendship with my husband due to the mutual understanding of the horrors they’ve witnessed (the mutual love of whiskey helps, too). Your sister with her longing for adventure but sensitive heart – a friend that always wants to play. Your many aunts and uncles with their awe-inspiring athletic abilities and a fierce love for family that would make the world a better place should all know such endearment. Your grandma Jo Marie with her strong, yet caring nature, and her faith holding her, despite the incredible hardships she’s experienced. Your aunt Jo who, at the sudden loss of your uncle Jens, asked, “What are you up to, God?” rather than the “Why?” so many of us wonder. Though a young woman, she shows such spiritual maturity in those words. These beautiful hearts within our own community that I likely would not have known, if not for you.

And of course, your mom, my first friend behind those heavy, foreboding double doors to a unit no parent ever wants to have their child behind. First her friendship, and then her faith, proved to me what genuinely beautiful is. She encouraged me to take the next steps with my faith, growing my relationship with God and knowing my Lord Jesus with so much greater depth. The mutual fears and hopes we’ve shared, the countless tears and hugs. The courage shown with our promise to never turn our eyes from each other’s pain. The power of expressing our experiences, though words are inadequate. To wonder at the grand intricacies of God’s creation. The motivation to change, find a cure for this wretched disease, all while “lifting our eyes.” Her honesty and loyalty have shaped how much I value these attributes in others. Friends on this earth, sisters through Christ.

Through your final days, I have been blessed to witness the amazing love of others, all because of you. I have only seen a small part of the outpouring of love and support for you and your family, yet it is profound. In this broken world, it is humbling to see such demonstrations of goodness, of humanity’s desire to serve.

Thank you for all of these amazingly precious memories and gifts, Allistaire. Bet you didn’t know you could do such things in six short years! Though today our tears fall like the spring mountain rains and our hearts burst with the thought of the suffering you’ve endured and the impending loss of you, we have faith in seeing you once again, in a perfectly healed body, with joy greater than what you showed us on the M trail, your giggles echoing through heaven. We love you, Allistaire Kieron Anderson. May you be greeted with a “Well done, good and faithful servant!” upon your entrance to heaven. We will continue to honor your life by working toward a cure and remembering all that is special about you.

With love always, Pam

To read more of Allistaire’s mom’s blog, go to: http://www.conglomerationofjoy.com

.allistaire.

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What to Say When There is Nothing to Say

This is a great piece that really speaks to my experience as well. When in doubt, just love.

A Generous Helping

As a victim of a poor memory, I remember only flashes of our first weeks in the hospital. Visits, conversations, tears, rooms, tests, scans – they all run together in my cloudy mind. There is, however, one event I recall with perfect clarity.

He texted to ask if it was okay if he stopped in on his way home from work. I wasn’t sure we needed a visitor, but Kylie agreed. Freshly diagnosed with Ewing’s Sarcoma, we were in the pediatric cancer wing where Kylie had begun her first round of chemo. By the time he arrived, our patient was sleeping and I got up to greet him quietly. I remember he put his backpack against the wall and opened his arms to hug me.

 

I am not a hugger…

This is weird…

He’s here for Kylie, not me…

Do I hafta???  Why????

I’m okay, I don’t need this…

Not a…

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reframing

Three years ago, we took our annual family vacation to St. George, Utah.  It’s the first place you come to that is desert-like sunny and warm in mid March, driving due south from home.  We take pictures on the drive down of the truck thermometer featuring well below freezing temperatures and huge snow banks in the morning, and by late afternoon, the pictures show temperatures in the 70s with sun blazing through the windshield.  Three years ago, on this vacation, Caden intermittently complained that his legs hurt throughout the week.  By the end of the drive home, he was screaming in agony.  It was the beginning of our nightmare.  Caden has heard this story countless times, as people often ask how it all started.  When I asked him recently if he remembered going to St. George when he was little, he told me he didn’t, but he knew the story.  “That’s where my cancer started.”

So when I told him we were going there again for spring break and that he could swim in the pool all day long, he was thrilled.  But, I think he felt , and I felt, a little apprehensive.  This was a place with difficult memories.  Guilt-ridden for me.  Painful for him.  I know it was not reasonable for me to think he had something like cancerous lesions throughout his skeleton and a tumor pushing on his brain three years ago, but he did.  My theory of jealousy toward his baby sister and basically telling him to power through it seemed reasonable.  But in hindsight, it hurt that I didn’t take it more seriously.  It was the last days of naivety, before our world came crashing down.  If I only knew…

We made the trip this past week.  I quietly hoped no one would say that their legs hurt (his sister is now almost the age he was three years ago) and that the drives would be scream-free.  I stood in the place where I specifically remember watching him limp.  I processed it, acknowledged what had transpired the last time I was there.  And then, we achieved my primary goal: we reframed.  We made happy memories.  The kids played in the pool for obscene amounts of time, their only complaints of their dry, cracked skin from so much mineral sunscreen and hours upon hours in a chlorine pool.  We now associate St. George with fun, our family enjoying time together.  Our experience is not confined to the raw hindsight of our blind innocence and the horror about to unfurl.

It’s been exactly one year since I’ve felt compelled to write here.  (crazy irony)  I guess you could say I’ve been busy reframing, too.  Enabled by no longer working (thank you, cancer), I started a weekly Bible Study some friends were an active part of.  I needed to reframe my view of my faith.  I’ve been soaking in knowledge of the Bible ever since, learning more about the God I had grown up with but had kept in a box.  My view was that He served me when I needed Him, when really, it should have been quite the opposite.  When Caden didn’t respond well to chemo and my prayers were not answered the way I wanted, that box shattered.  I felt alone, abandoned by God, lost in my faith, confused and disoriented.  Those days were quite dark, but that’s where God does His greatest work, He needed stubborn old me to be there.  I needed to reframe my view of Him, rebuild our relationship.  This reframing process, driven largely by this Bible Study with nightly lessons, has enabled my faith to be more at my core, a more guiding light of who I am, not in a box opened when it benefitted me.  This process has consumed much of my time through reading and thinking, in a more inward sense.  I don’t often feel the same urgency to express outwardly.

I know writing helps a lot of people release their emotions.  Writing has helped me put it out there, capture my thoughts and feelings at a given point in time, but I have not found that release.  Where I have found it is in running.  I know, right?  I’m not what you would call an athletic person.  But, it is where I find some peace.  I think, process, and pray.  It’s quiet time – just me, the road, and God.  I can cry, rage, ponder, or just be.  I can be fueled by the emotions.  This reframing of my mind (and my body) is a good thing.  And if it hurts or I get tired, it takes one simple memory of my child in cancer treatment to keep going.  My son taught me what it means to never give up.  He has endured so much more than I ever will.

The one thing I refuse to reframe, however, is my recollection of Caden battling cancer.  I hold onto that with a white-knuckled grip.  It’s not that I want to hold onto something so painful, but it does not deserve to be forgotten, simply left behind, like it didn’t happen.  Because I know there are thousands of kids, some of them our friends, going through those same horrors, right now.  The medical version of child abuse.  But it’s all we have, it’s our hope, for which I am so thankful.  As I read the book, “The Emperor of All Maladies”, about the history of cancer, I was horrified to read about the seemingly barbaric treatments in the mid 1900’s.  Children destined to die, but given all kinds of poisons in desperate attempts to save them.  And then I read the list of these poisons, many the same as those intravenously streamed into Caden over 50 years later.  They seemed so barbaric then, and they do now, too.  Our society has certainly gotten better at treating cancer, but we have a long way to go.  I hold onto this, refusing to let my perspective change, because I hope and pray that one day, I can look back and reflect on how ridiculous and hazardous Caden’s treatment was, because all children will be easily treated and cured.  A cure will be found.  And then maybe, just maybe, I will reframe.

.reframing.


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gladness

I’m guessing I was about Caden’s age (5 years old) in my first memory of public speaking. In front of the whole church, I recited, “Today is the day the Lord hath made. Let us rejoice and be glad in it.” I never really thought too much about the meaning behind Psalm 118:24, other than it was an easy one for a little kid to remember. But now I’m often saying it to myself. Even, if not especially so, on the challenging days. Those days when I know Caden will be poked with a needle or will need to take medicine with the hopes of knocking out any remaining neuroblastoma cells, I remember that psalm, or song, as a way to center myself and focus on the simple gift of that day. That it is a gift and we should be glad.

Each morning in the agonizing days (the word “agonizing” doesn’t even do it justice) of Caden getting scanned and waiting for results, I remembered this psalm. During the really scary moments, I would beg for mercy, but as the sun rose on a new day, I would rejoice and be glad in it. It kept me focused on the peace of that moment because I knew my world could be thrown into the most horrible depths of darkness with a single phone call. Or, as was the case a week ago Friday, I could collapse on the floor with tears of relief, gratitude, and joy when the news is continued remission.

Gladness takes on a new depth now. It’s not, I’m glad I got a good night’s sleep or had a tasty meal, although those things are lovely and I certainly appreciate them. It’s finding gladness in the hardships. A twisted appreciation for the goodness intertwined with struggles of our new normal.

A friend’s daughter relapsed again recently and she had a new central line placed today. I can’t imagine seeing a tube going into your child chest, knowing it goes up their neck and down into their heart to make the administration of chemo and blood draws easier, and all that the line represents ever gets easier. This foreign body is a potential source of life-threatening blood infections, especially in the immunosuppressed. A fever is a true emergency. I will never forget Caden’s fever of 109. Thinking back, it almost doesn’t seem real. Anyways, I know when we wake tomorrow morning, Caden will be poked for a blood draw, but I will find gladness that he does not have a central line, on so many levels.

Days like today, I find gladness and freedom that Caden does not need any medications. No schedule to follow or remembering needed. I think of friends with children with chronic illnesses. They will probably never have that luxury. Caden needed a heart medication at 2am for the first year of his life. I can laugh at such hardship now, but at that time, it felt like such a burden with no end in sight. Parents of celiacs, diabetics, or kids with severe allergies must feel like they are constant alert, watching out for things that might harm their child. We all have our hardships, some public and others private. Fight to find gladness in the day the Lord hath made.

Then on the days when I do have to give Caden medicine, I am glad he tolerates it relatively well and has that option. In the childhood cancer world, it’s all about options. Caden doesn’t have too many options left, but even just one gives us hope, and for that I am thankful. And gladness in the day the Lord hath made. It could be the day when one of those options becomes Caden’s cure. Maybe it already has.

When the winter wind blows, rattling shingles on the house, and the snow flies with wind chills dropping well below zero, there is gladness because it means we are home. We have shelter. I was going to write that in all things, you can dig deep and find gladness. But that’s a lie. I know sugarcoating can feel isolating and in the depths of your personal hell, even the greatest of optimists may be void of gladness. I am lucky to be in a position right now where I can choose gladness. It has not always been that way.

Now here’s my challenge to all of the parents to young children… Find genuine gladness in the craziness. The epic messes throughout the house. The sibling bickering and fighting. The sleepless nights. Ignoring you or even disobeying. The power struggles. You know that moment when you think your kids are driving you absolutely insane? Ask for grace, but choose gladness. Because you have your children.

.gladness.


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illusions

It’s been a hard couple of weeks.  The kids have had bad colds and pink eye.  And Caden has scans coming up this week.  The week prior to scans is usually intense as the tension leading up to them builds.  As many times as I might tell myself to chill out or recite Proverbs 3:5, it’s subconsciously there.  It’s a funk I won’t get out of until we get results, hopefully.  I acknowledge this edginess for what it is and manage it as best I can.  But, between the illnesses and scanxiety, it’s been challenging.  Oh, and there’s his medication that makes his skin insanely dry and can affect his mood and other things.

Caden’s been lethargic, had low grade fevers some afternoons, lost his appetite and probably a little weight, his eyes have been red and irritated with dry skin and constant eye drops, he’s been grumpy and clingy, not wanting to go to swimming lessons, and crying out at night.  He’s even said his leg hurts a few times but only in passing and doesn’t show any obvious signs of limping or anything.  One evening he burst into tears with his dad, scared that his cancer might come back.  Since his dad wanted to address it, I went into our bedroom with Camryn and released some of the tension he was probably sensing, sobbing the tears I try to keep from him.  Cami’s wide two year old eyes looked at me and she just kept repeating, “Don’t be sad, Mommy.  Don’t be sad, Mommy.”  I don’t want this to be the mommy she knows, but she has almost her entire life.  It feels like an illusion.  Essentially all of the symptoms could be explained by the cold, or his cancer could be back.  Neither would surprise me.  We can be hopeful and stay positive (which we prefer) and explain it away with the cold.  As his cold is getting better, things seem to be improving.  But are we living in an illusion, using the cold as a way to mask the fear of the alternative?  Or, are the approaching scans tainting our vision so that all we are see are signs that point to cancer when all it really is is a bad cold?

Three young moms, two close friends of friends and one of Caden’s nurses, have had their worlds turned upside down.  Two with cancer and another in a horrific car accident.  I genuinely feel for these women in a way I didn’t before.  Sympathy, knowing nothing I say will change the hardship in their hearts and the journeys they must face.  Beautiful moms, lives interrupted by things that don’t make sense and aren’t fair.  I can’t help but think that this world is just an illusion for the greatness of heaven.  There simply has to be more.

Today, we went to the kindergarten registration kickoff.  So many emotions wrapped up in one simple task.  Happiness at the prospect of Caden going to school.  Anger that I should have been doing this a year ago.  Fear that it might all be for not.  I met with a wonderful woman about developing an individualized education plan for Caden due to his chemo-induced permanent hearing loss.  She was very helpful, talking about the process and the support Caden would get so he would receive a quality education, all the way through high school.  This type of discussion felt foreign to me.  Thinking that much about Caden’s long-term future, like it’s a guarantee.  My heart was crying out, please let these be my worries.  His hearing loss and maybe other delays caused by the treatments.  I desperately want this planning for his education, this kindergarten registration, to be for a purpose and not just an illusion.

.illusions.


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lessons

I sometimes wonder why I started this blog.  Most recently, I’ve been writing about Caden’s diagnosis, which I may or may not post.  It’s, at times, hard re-living that.  Am I doing it for Caden?  No.  Shortly after Caden was diagnosed, Jason started writing.  I didn’t even feel like I could complete a comprehendible sentence.  There’s no way I would have captured all that Jason did that first year.  That will be there for Caden if he ever chooses and is able to read it.  The few times I did write in Caden’s journal, and now as I write these blog posts, it emotionally exhausts me.  Then why?  To impart some sort of knowledge to the rest of you?  Nope, that’s not it either.  But I guess that’s maybe why I usually share what I write.  I don’t expect anyone to truly understand what goes through my head and what we have been through.  Each person’s journey on this Earth is different; each with their own hardships and challenges.  But I appreciate reading about how others handle the good and the bad.  So why???  It’s because I’m scared.  Scared of somehow losing the insight and value, the lessons, brought forth by this great challenge in our lives.

There’s so much I want to forget.  The pain, the heartbreak, the tears.  No, not mine.  My child’s.  I want to forget that.  I want him to forget that.  But I don’t want to forget what I’ve gained from living through that.  When you lose so much of what you thought your life was about and experience difficult emotional pain, you can be destroyed by it, or you can fully feel it and allow it to change you, shape you, remold you.  I like to think of it as God’s hands at work.  Guess I was made of some hard clay that had to be broken first.

The lessons have not been instantaneous.  They have come with time, as challenges have come and joy has been experienced, all while wrestling with my own thoughts and perspectives.  They will never be static, continuing to shape me as time goes on.  As I think about the lessons I don’t want to lose, these are the ones that stand out the most.

humility : This might be my favorite.  Boy, was I proud of myself before all of this.  I took great pride in all aspects of my family, my career, my home, our stuff, you name it.  It wasn’t all bad necessarily, but it took having essentially all of it threatened for me to realize I have a deep respect for the humble.  I always felt like I needed to impress others and demonstrate my value to the world.  I had an answer for everything.  Not anymore.  What I do in this world only matters to God and myself.  I guess I’ve gone more introverted in a personal achievement sense.  More like the average person now.  My pedestal got knocked over and that’s a good thing.

living in the now : I’ve always been good with delayed gratification.  Because I lived in the future.  Everything was about planning, preparing, dreaming, and very little about just living.  Well, as you can imagine, I can’t do that anymore.  Our future is such a big unknown, I mean everyone’s is.  But ours is so day-to-day, scan-to-scan.  Living in the now, though, provides a greater appreciation for what is in front of you at the very moment, not what will be.  It has its challenges when it comes to taking a vacation or signing up for an activity in advance, but living in the now is something I wouldn’t have fully embraced otherwise.  I still have some work to do in this area, but I’m much more present than I ever was.

simplicity : Living in an RV for a year really taught me that we don’t need much to get by.  Our basic needs were met and it’s funny how you realize that’s all you really need.  I certainly appreciate the luxuries of a home more now, but I don’t need them like I thought I did.  It’s amazing how cluttered the mind becomes when there’s lots of stuff to distract you.  I certainly “need” a lot less now and appreciate the basics more.  I can let go of the excess and the unimportant more readily.

compassion : Gosh, how do I explain this one other than, it’s deeply rooted now.  This experience, the compassion I’ve received from others, and the compassion that I haven’t been given, too, has underscored the importance of this in my life.  I feel it on so many levels.  Now, when I hear that someone has lost a child, I don’t just think, “Oh, that’s terrible.”  I genuinely feel it and absorb it.  I don’t pretend or try to know how others feel, rather I respect that every person has the right to feel the way that they do.  Compassion, true and deep, keeps me from judging others because I know there might be something more there than I can understand.  Though far from perfect, I have more of it with my children, my spouse, strangers, animals, and even the houseflys that Caden insists I take outside rather than smoosh.  Honestly, TV and movies can be hard for me to watch at times because of it.  There is another side, too, which is a lack of compassion for insignificant things – my kid didn’t get in the same class as his friend, my baby won’t sleep through the night, my husband didn’t shovel the walk, I didn’t get the flight I wanted for a trip.  Things I probably would have complained about before.  I just can’t feel badly about such things anymore.  And things that have a feel of drama to them don’t go over with me well.  I have compassion for real, true pain.

financial freedom : Yes, I admit.  This one is really strange.  I tracked every last penny we owned before Caden got sick.  And when money suddenly doesn’t matter and you’re willing to lose everything you own of financial value to save your child, it’s a new perspective.  Now this wasn’t immediate.  It was definitely a process of letting go.  And in doing so, it was almost as if things were magically okay.  Of course, I was and still am at times mildly worried about how this all impacts us financially.  But, we have had what we need when we need it thanks to the generosity of so many.  Again, thank you, God.  He has certainly had a hand in that.  There’s no other logical explanation.  If you had told me to completely take my income out of the picture and add on a bunch of medical expenses, I would have said no way would it work, but it has.  Maybe it also has something to do with the whole “simplicity” thing, too.

appreciation : I have learned to appreciate everything.  The details in a painting.  The way Caden looks when he’s mad.  My dishwasher.  The glorious mountain views.  The space that needs to be cleaned.  My family under one roof.  The sibling arguments.  At times, there’s room for improvement, of course.  But I have a new appreciation for so much and value it enough not to busy my way through life anymore.

As I write, I realize the lessons are innumerable.  There’s no way I could cover them all, despite how badly I want to grab hold of them and keep them a part of me.  A friend whose child battled high risk neuroblastoma, like Caden, once said that it was the best thing that ever happened to her.  I am not gracious or healed enough to be able to say that, and probably never will be, but I do recognize the good that has come from the bad, the gems in the sand, the stars in the darkness.  They are there if you squint.

.lessons.