When Mama Has Cancer

Less than six weeks after the scans showed no signs of cancer, the monstrous beast returned with a vengeance, raging through my body.  It has infiltrated the bones in my leg, has taken over the lymph nodes in my neck, has spread to my stomach, and has extended from the back of my shoulder all the way down my rib cage.  The pain is excruciating.  Food doesn’t stay down.  I now sleep most of the day.  From zero to completely invasive in less than 6 weeks.

When I was first diagnoses with stage 4 metastatic cancer a little over one year ago, I knew it was terminal, but I held on to hope that I could fight it.  At least for a little while.  And because I had no idea how long the journey would take, I haven’t shared too many details with my two youngest children.  I didn’t want to scare them.  I told them that Mama has cancer, but all that has meant to them up until now is that I went to a lot of doctors’ appointments, that I had lots of medicine, that I took long naps, that many of our friends helped us with meals and babysitting, and that I cried every day.

And to them, cancer meant that in just a few short months, my appearance completely changed.  Watching me become bald (due to the chemo), watching me lose so much weight that I look skeletal, and watching me lose the use of my arm and hand and leg (due to nerve damage caused by the tumors) has been especially frightening for them.   Every day my heart rips into pieces when I hear them pray, Dear God, please help Mama’s cancer to go away.

A few days ago, when I found my 11-year old son sobbing, something he never ever does, I held him close and asked him what was wrong.  Through his tears, he tried to catch his breath long enough to look at me and say, I just want you to be healthy again!  I knew then that it was time to tell them the truth.  My hospice team has predicted that I most likely have just a few weeks left, and now my kids need to know that as well.  I need to prepare them for what will be happening to me.  For what will be happening to them.  It was time for them to understand what Mama has cancer  really means.

I said as gently and tenderly as I could, Honey, my cancer isn’t going to go away. I’m not going to be healthy again.  I explained that I am going to die.  And that means I am going to leave and not be able to come back again.  My 5-year old daughter, who had joined our conversation by then, asked if we could maybe FaceTime, and through my own sobbing, I told her I’m so sorry, Sweetheart, but no, we can’t do that.  After I leave, you won’t see me again.

I tried my best to pull myself together long enough to let them know that God loves me, and He promises that if I believe that Jesus died on the cross to forgive my sins, I can go to heaven and live with Him.  And heaven is such a really great place to live!  There is no cancer there.  There is no pain, no medicine, no doctor’s appointments.  And there is also no tears.  Right now I am so incredibly and deeply sad that I will be leaving my precious children – the older ones as well as the younger ones - that I can hardly bear it!  I don’t understand how this is even possible, but when I am in heaven, I will no longer be sad.  I won’t need tissues anymore.

And when I go to heaven, I will get to see Jesus, the One who is my very best friend!  The One who has never stopped loving me.  The One who has been with me during the darkest of nights and has, despite my doubts and faltering faith, never given up on me.  On that day when I go to heaven, He is going to put His hands on my face and touch what I imagine will once again be my long brown hair.  He will look into my eyes and say to me, Hello Beautiful!

I assured my kids, as best as I could, that not only would I be ok, but that they would be ok too.  That they have an extraordinary dad, one who loves them so, so much, who will still be here to take good care of them.  That they have older siblings, extended relatives, and close family friends who will make sure they have everything they need.  They may be sad, but they can know with certainty that they will be safe.

There have been a lot of changes in our home and in our family over the past few years.  Foster children have come and gone, older siblings have moved out on their own, and mama has cancer that is quickly causing her to become a very different mama than the one they’ve always known.  One who is always in pain, who is frequently sleeping, who can no longer brush hair into a ponytail or pour a glass of apple juice.  But through it all, through all the changes they have witnessed and experienced, I want them to know that the one thing that will never ever change is how much I love them.  Even when I am gone and they can’t see me anymore, I will never ever stop loving them.

That was a really hard day.  A really tough conversation to have with two innocent children who are just trying to understand what is happening to their mom.  But I want them to know the truth.  I want them to know that it’s ok to talk about these things, to ask questions, to need more explanations, to try and find the words to describe our feelings.  

We probably used up an entire box of tissues that day, but even that is a good thing.  Emotions aren’t bad, and whatever we are feeling – sad, confused, scared, maybe even angry – its ok to feel those things.  No matter what we are feeling, God is right here with us.  The same God who is with me now, who is comforting me and loving me through this physical pain and emotional grief, is the very same God who will be with them, who will comfort them and love them through their sadness and their fears in the weeks and months to come.

Since then, in the few days since talking about what it means for mama to have cancer, our family’s prayers have changed.  We can continue to pray that God would help my cancer go away, and He could certainly choose to do that.  He is, after all, a God of miracles.  But if that day comes in the next few weeks when my body can no longer fight, on that day when I go to heaven, I don’t want my kids to be angry at God for not answering their prayers.  Instead, I want them to seek God in their grief.  To experience His strength and peace and comfort as He carries them through.  

And so, now our family’s prayers are full of gratitude and confidence.  Prayers that my children can continue even after I am gone.  We thank Him for His love and His goodness towards us.  We are so grateful that He is always with us, that He promises to never leave us.  We thank Him for giving us courage when we feel afraid, for shining His light into our hearts when we feel sad.  Last night, my 5-year old daughter prayed, Dear God, thank you that Jesus died on the cross so that we can go to heaven.   Oh, how it thrilled my heart to hear her articulate that!  Instead of Mama’s cancer causing her to turn away from God, it is causing her to draw close to God.  It is helping her understand the gospel!

Their mama has cancer, and sometime within the next few weeks, on that day when I go to heaven, their lives will be forever changed.  During their season of mourning, during their sadness and confusion and fears, it is my hope and prayer that they experience first-hand these unchanging truths in their hearts and in their lives: 

The forever love of their mama.  

The protective care of their dad.  

The collective support of those we call “our people.”  

The powerful presence of a good and loving God.

Mama has cancer.  Three little words that my children should never have to hear.  

God is good.  Three little words that I hope they will remember and believe and declare for the rest of their lives.

Know that the Lord, He is God!
    It is He who made us, and we are His;

    Give thanks to Him; 

For the Lord is good;
    His steadfast love endures forever,
    and His faithfulness to all generations.

 - from Psalm 100

What Pure Means

The kids had just finished up their lunch, and if I was smart, I would have kept to our regular schedule and settled them into their beds for an afternoon nap.  But the gorgeous weather outside was calling to me, tempting me to enjoy the sunshine on my face, even if only for a few minutes.

After quickly tying my hair into a ponytail, I unfolded the double stroller and buckled the two little ones into it, and helped the older ones fasten their bike helmets into place.  The sun and fresh air that day felt just as glorious as I had hoped it would!

We hadn’t even reached the end of the block, however, before the delightful moment ended.  The baby started crying, and when I stopped to pick him up, he vomited all over me.  Meanwhile, the ones on their bikes were getting a little bit too far ahead for comfort, and I yelled out a reminder to them to Stop at the corner! 

My fashionable neighbor arrived home at that exact moment, and I’m sorry to say that inwardly I cringed a little bit.  She climbed out of her Cheerios-free car and walked towards me, her heels click-clacking on the sidewalk, a dazzling smile on her face.  I felt instantly ugly. 

While I struggled to clean up and comfort the baby, and look frantically down the street towards the diminishing figures of my children on their bikes, she stood right next to me trying to engage in conversation.  In her hand was a leather Bible and a cute little flowered notebook. 

Apparently, she had just arrived home from a weekly ladies’ Bible study.  The one that she led.  At the church where her husband was a pastor.  Great.  Now I felt instantly ugly and inferior.  I am certain that as she was standing there looking at me, she was thinking to herself, This lady needs Jesus!

Because the children who are always with me have varying sizes, shapes, and skin tones, I am pretty much a walking advertisement for orphan care.   When I confirmed that yes, these little ones with me were indeed my foster children, she blurted, Oh, that’s wonderful that you do that!  My husband and I have talked about getting involved in foster care, but we wouldn’t want to give up our date nights.

The Magic of a Wish

What could possibly be more magical than a Ball?  The sequins on my royal blue gown catch the sparkle from the crystal chandeliers overhead, and it doesn’t seem real.  I feel like a common villager, trying to pass as a princess.  I can hardly believe that I am the same person who, just a few hours ago, was checking our son’s lab results, confirming the next appointment with his specialist, and measuring out his daily medications.  That was real life, messy and routine and sometimes exhausting.  But this opulent ballroom with cocktails and hors d’oeuvres and the small ensemble in the corner playing beautiful classical music?  This is magical!

I can’t help staring at our son all decked out in his black suit and tie – the first one he has ever worn in his life – and admiring how dashing he looks.  The blue sash across his shoulder, the one with the words Wish Kid on it, make him seem almost royal.  He and the other Wish Kids like him, are the reason everyone is here.  We have been invited to this Wish Ball, an annual charity gala to celebrate the wishes that have been granted to children with life-threatening medical conditions.  If the cost of admission is having a child with a life-threatening medical condition, it is a steep one indeed!

Fighting the Fear

“No, Mommy!  Please!  No!”  His desperate screams fill my ears and I have to turn my head away so that he won’t see the tears that threaten to leak out of the corners of my eyes.  So that he won’t know how much his helplessness and vulnerability break my heart.   Oh, how I long to rescue him from this pain!  To protect him from this terrifying situation that causes him this out-of-control panic.  Instead, I hold him even tighter, pinning his arms so that he can’t move.  He may believe at this moment that I am the worst parent in the world by subjecting him to this agony, but I know that this is what he needs in order to be healthy.

“Sh, it’s okay,” I keep whispering into his ear.  “I’m here, Sweetheart.  I’m right here.  Just squeeze my hand.  Sh.”  I continue to hold him securely while he continues his frantic cries.  He is unable to hear my words of comfort.  The roar of fear has caused his ears to be deaf to my voice.  He is so blinded by terror that my face, the room we’re in, everything becomes fuzzy and out of focus.

I pray silently, Please, God, let this be over soon!  The phlebotomist patiently attempts a third and then a fourth time to locate a good vein, to draw enough blood to fill 10 – yes 10! – vials to be sent to the lab for testing.  With each passing minute, with each painful stab of the needle, with each piercing scream, it gets increasingly difficult to watch.

I knew when our little foster baby had his organ transplant four years ago that it would mean life-long concerns about his health.¹  I knew when we adopted him two years ago that it would mean a life-long commitment to his care.  That it would mean sacrificing countless hours, summoning boundless energy, and experiencing immense inconvenience. 

What I didn’t know, what I never could have planned, was the indescribable love in my heart for this resilient child.  The unimaginable heartbreak of watching him endure repeated medical tests.  The fierce protectiveness that I feel for him every time we step foot into this place.

And I didn’t know how significantly the medical trauma of his early years would affect him.²   That it would cause him to have such ongoing fear.   That every time he has a medical procedure, even a minor one, he is re-traumatized, and the healing has to start all over again.

Normally, getting your blood drawn should not be such a traumatic event.  It shouldn’t be such a major ordeal every single time!  One would think that after being subjected to various medical procedures hundreds of times over the past six years, that he would get used to it.  What is he so afraid of? Why doesn’t he just remain calm and hold still?  He knows it’s going to be over in a few minutes.  Why isn’t he brave enough to fight this fear?

Finally, mercifully, the needle comes out, the band-aid goes on, and I reassure him once again that I am here, and that he is safe.  And he is safe . . . until next time.

The Long Road of Healing

Don’t cry little one.  Take my hand.  Let us walk against the wind together.  Let me be the hand that guides you back to hope.  Back to love. – source unknown

Sometimes I forget.  I forget the years of his life that he spent alone.  Trapped in a crib that was less like a bed and more like a cage.  No matter how much he cried, there was no one to comfort him or hold him or rock him to sleep.  And sleep was rare for him, not only because of the constant pain caused by his medical condition, but because of the strangers who came in his room, coming in at all hours of the day and night.  Strangers who would do painful, excruciating things to his frail body.  He would scream and wail, begging them to stop, but they only restrained him more firmly, pinning down his arms and legs so that he could not escape their torment.  Sometimes I forget the horrible trauma that this child has experienced.

He may have no specific memories of those early years.  He would never be able to articulate now what happened to him, or describe why, even though it’s been several years, he continues to have frequent nightmares and unexplained anxiety.  Why he doesn’t want his Mama out of his sight for even a second.  Why hasn’t he gotten over it yet?  He has been rescued from that former life, and theoretically he should be living happily every in the safety and security of his loving family. 

Unfortunately, it’s not that simple.  His body remembers.  His cells have not forgotten.  His soul bears the invisible scars of being abandoned.  The excruciating physical pain.  The utter helplessness.

Is it any wonder that he is plagued by fear?  That unfamiliar situations cause him stress? That he is hyper-alert to his surroundings at all times and doesn’t tolerate surprises or unexpected changes to his routine?   Even being hugged too tightly or being pinned during a tickle fight causes terrified shrieking.  The uncertainty and insecurity, the hidden wounds that are still healing, have taken a terrible toll on his behavior.  The behavior that everyone can see.