That Which Is Above

The question I get asked perhaps more than any other is, “How is Izzy doing?.” I have learned to smile gently and respond with simplicity, “Really well, thank you.” Often times people take the question further, “So she’s going to be okay, right?” At this point in the conversation I clear my throat and disassociate. My mind goes somewhere else while my mouth continues to speak, “No, probably not. She will likely be on chemotherapy for the rest of her life, until she’s not. But today she feels good so I’m thankful.” And that, in a nutshell, is the everyday I live in. A constant flux of wanting to live with intention and needing to disassociate. Like the person asking questions, I want to believe everything will be okay, I want to hope for the impossible. But as the mother who has walked a very long six years, I need to disassociate from truth. I need to disassociate from my own story.

Next week will travel back to Cincinnati for two days of scans. The first scan will tell us if the radiation did what it should have – if the spots (only one was active) are gone. The second scan will look for Neuroblastoma activity throughout her entire body. If any spots remain in her abdomen or if there are any new ones anywhere, this scan will tell us if they are active. When I told Izzy we were having scans next week she boldly declared: I wish we could have scans the day before Thanksgiving because then on Thanksgiving we could have something to be thankful for – my good scans.

Several weeks ago we had photographs taken of Izzy wearing my wedding dress. We pulled the fabric tightly together, then clamped it behind her. There was so much fabric, so much beading – it weighed her down when she walked, nearly causing her to fall on more than one occasion. It was freezing that night and she told me later she thought her fingers might fall off. Standing in that park with the bitter fall wind I remember thinking – please don’t let this be the last time I do this – as I adjusted her veil. The rest of the time I stood to the side while the photographers did their thing. The sun began to set as they positioned her here and there.

When I got back the hundreds of photos an old friend graciously took for us this is the one that stood out to me. All of them were breathtaking, but this one pulled at every string of my heart. This, my friends, is a picture of faith. She is clothed in white, in innocence, and she is seated in a posture of gratitude. The air surrounding her is freezing, yet she appears completely unaffected by the conditions of this world. She is focused not on that which is around her but on that which is above her. Her smile, her eyes, they seem to stare into the heavens. It’s as if she sees the Lord and believes with entirety that He sees her too.

I don’t know what news we will learn next week. Nor do I know how that information will impact the next three months of our life. What I do know is that on December 23rd – the six year anniversary of her diagnosis – we will go downtown and serve ‘people with no homes’ (that’s Izzy’s token phrase) and we need your help. When Izzy first learned of people with no homes, she was overcome with compassion and anger. Her compassion was towards their predicament and her anger was towards me. She was furious that I would not bring them all home with us to live. After several nights of talks and tears she was determined that if they could not live with us the least we could do was take blankets to them. Last year Bundle Up grew including more of you and impacting more “people with no homes.” We gave a blanket just like we had the first year but we had so many additional donations of cash we also gave hats, gloves, socks and food gift cards.

This year we decided to be more intentional about the giving. Let’s pool those efforts together and give every person something more than a blanket, something more than a pair of gloves. Let’s give people that have ‘no home’ something that is practical for their unique circumstances – a sleeping bag. There are thousands of people that follow Izzy’s story. If just 200 of you give a sleeping bag or donate $20 for us to buy one on our own we could make a huge impact this December 23rd. We could turn a day the enemy meant for evil for our family into a day that blesses hundreds. Here’s how you can help:

  1. Buy a sleeping bag and have it shipped to us. I’ve created an Amazon Wish List and added it below. Just click on the link, buy the bag(s) and they’ll get shipped directly to us Bundle Up Wish List
  2. Donate cash for us to buy sleeping bags with. I’ve created a GoFundMe page for these donations. Give what you feel led and we’ll do the rest: Bundle Up GoFund Me
  3. Donate a new or gently used sleeping bag on your own. Just email me at mollymattocks@yahoo.com and I’ll get you our address to drop it off.
  4. Show up downtown on the 23rd and help! We’ll be meeting at noon at the Indiana War Memorial – look for the Bundle Up Banner and a small, blue canopy. Last year so many folks wanted to stick around and chat after they received their gifts so this year we will have cookies and coffee to help create an atmosphere for this. Just email me if you’d like to donate cookies or coffee too!
  5. Host your own Bundle Up in your home town on the 23rd in Izzy’s honor. Yours can look however you want. Stick to Izzy’s original vision of blankets if you want – we don’t care!

So that’s it, really. Regardless of our circumstance there is always hope. Izzy reminds me of that and she reminds me to live and give with intention. I don’t want to forever be a person who lives everyday disassociating – I want to be fully present, to be intentional about the words I speak and the choices I make. I want to be like her in this photo: focused not on that which is around me but on that which is above me.

Blessings on you today and LIFE for Izzy!

The Valley

Finally it feels like Fall. My favorite part has been the evenings, as the sun goes down, the sky grows a tiny bit pink and the cool air comes. It is then that I notice the changing of the leaves, notice the many that have made their way to the ground from their homes in the sky. And it is in those moments that I remember the hope that Fall has always brought for me.

I went to a Liberal Arts college in the Midwest. Back then, Fall meant sitting on blankets in the Valley of our campus. It meant studying in that crisp air and watching leaves chase one another in circles. It meant the start of a new school year, the start of becoming the person you always wanted to be and having the life you always dreamed. Sometimes I think back to the things we used to talk about on those blankets and in that Valley. I think about the lives we wanted for ourselves and the world we wanted for our generation. The thing about Fall in the Valley is that it was a new semester, a fresh start and no one could tell you who you had to be. In that Valley we carved out little dreams for ourselves, little lives of fiction we wanted to wake up in someday.

I initiated a heavy talk with Izzy’s oncologist earlier this week. I emailed him, saying there were some things I needed to talk about. When the phone rang that night and I saw the number on the screen I walked away from Izzy and her homework. I found my way to our deck where the crisp, fall air met me. This was not going to be like a conversation in the fall air of the Valley. We sat in awkward silence for a few moments before I started…

“So, the pathology reports? You had emailed me but we haven’t had a chance to talk about them,” I asked, easing my way into the call. He began to talk about genetics and proteins, variables and mutations, things that were completely over my head. He asked me if it made sense and I laughed, “Not even a little bit but I think what you’re saying is good. Right?”

He hesitated, “I wouldn’t say it’s good. I would only say it’s not bad.” I felt a tinge of sadness in the silence. I thought about what I really wanted to ask him and then I toned it down about a thousand degrees. What I really wanted to say was: How long do you think she’ll live? How long do we have? Just guess. Instead I said, “So is this what we do now? We just watch it and wait? Over and over again until -until we don’t?” He conceded and I felt another tinge of sadness. “It’s a waiting game, Molly. We just don’t know. What we do know is that Izzy is different. The disease has always presented differently in her. She isn’t in pain and she’s living a fairly normal life right now. That has to give us hope.”

With Neuroblastoma, hope means a few years. Results that are ‘not bad’ imply time for her to live her childhood, nothing more.

Years and years ago when I sat in the Valley dreaming about my life, this is not what I envisioned. I’ve been thinking about that Valley a lot because Izzy brought this gem home from school last week – a worksheet listing things she hopes for: to get into college, to have a family and to have fun. My heart broke into a thousand pieces because all that she wants just seems like not that much at all. And all that I want for her is to sit in the Valley and dream. But that’s not the valley we are dealing with these days…

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; Psalm 23:4

To be honest, I never knew what this ominous ‘valley of the shadow of death’ was until a few years ago when I was struck by an image. When Izzy was going through agressive inpatient treatment I spent hundreds of nights curled up in the hospital bed with her, promising not to leave her alone. I made an internal promise to ‘lay with her always’ and continued to snuggle with her back at home each night until she was asleep. One night, when I closed my eyes I saw myself sleeping on her grave, her body several feet below my own, separated by the earth. I remember thinking: even then I will stay with you, baby girl.

To walk in ‘the valley of the shadow of death’ is to walk with that image in the back of your mind everyday. To walk with the knowledge that death is chasing you, or someone you love. It’s to walk with the weight of that day in and day out.

I don’t know how long we will walk through this valley. Don’t know if Izzy will ever make it to a blanket in the middle of the Valley where I used to sit. But this much I do know, just as the Psalmist says, “I will fear no evil, for I know (God) is with me.” He is a good God. He will be our hope when we can’t find any, our heartbeat when we can’t feel our own. He will pull us through the fear and the pain to a better place – somehow, someway.

Blessings on you today and LIFE for Izzy.

Empty Chairs

There are some places that embody an almost tangible sadness. Places where the atmosphere is saturated in heaviness. Where it feels like every day is a rainy day with no sign of the clouds clearing.

One of these places is a Pediatric Oncology Unit. From the inpatient floor to the clinic for labs and chemo, the atmosphere is the same. Some of the children look sick. Some of them don’t. Some of them are smiling and laughing, some of them are dry heaving into basins. But the atmosphere isn’t just heavy because of the children. Behind every child fighting is a parent dying inside. A parent who has been told things they can never forget, has seen things they can never unsee. In the eyes of these parents, through quiet strength, you will find a deep sadness. One that is so overwhelming it cannot stay contained within. It seeps out through their pores and fills the air of these sad, quiet places.

One mother sits in the lobby typing away on her laptop, her daughter waiting for chemotherapy. The mother, middle-aged and plain is wearing a rubber bracelet with her daughter’s name on it. It bounces on her wrist as her fingers peck away at the computer. She wears the bracelet to show she’s fighting too. She wears it because somehow it helps her find hope. Hope that her daughter will be one of the few to overcome.

A young couple walks in with a stroller, checking their infant in for radiation. They do not speak to one another but wear matching shirts with their child’s name on it. Silently, they stand in agreement that they are “Fighting For XXXX.’

Then there’s the mother that sits in the consultation room crying. The doctor has just left and after some time alone she makes a call from her cell phone. Her words cannot be heard through the glass but they don’t need to be. Everyone on the other side of the glass has made one of those calls. Each one of us has had a similar talk with a doctor and then sat alone afterwards in disbelief that this was happening to us. That our baby, our child, was sick. Through the glass we grieve with her and through the glass we understand.

All of us are praying the same prayers. Most of us are even praying them to the same God. All of us are gathering those in our communities around us to join in, we are desperate for others to believe with us that our children will pull through.

We sit in these clinics, these lobbys, these parent lounges, alone but we are united. But as we sit in silent camaraderie we wonder: will it be yours or mine? Because we know it can’t be both. That’s perhaps the thing that makes these quiet places so horribly sad. It’s not the things that those who fill them don’t know, it’s the things that those who fill them DO know: some of our children will not make it.

As much as we hate sitting in these clinics, we realize it is a privilege to continue doing so. As much as we hate sitting in these clinics, we realize the only thing we would hate more is not being able to. There are so many parents I have met along this journey that no longer get to fight because the fight is over for their child. There is now a permanent hole in their home and in their soul. And as much as I hate being here, those parents would give ANYTHING to be sitting in the empty chair next to me.

It’s not the children or the parents in these clinics that break my heart the most – it’s the empty chairs. Each empty chair tells a story. Some tell stories of healing and a cure but many tell stories of a disease that won. And if you’re a parent whose child is fighting this disease for the fourth time, the stories of healing and a cure seem far beyond your grasp.

On days that are just too much and nights that bring pain beyond comprehension I often think of the empty chairs. I am reminded of the privilege it is to still be sitting in one and I make the conscious decision to be grateful for it. I am not willing to give up my seat without a fight. Not now, not ever.

Blessings on you today, LIFE for Izzy – and may we never forget those families represented by the empty chairs.

The Journey Continues

Most of you know by now that on July 19th we learned of Izzy’s third relapse. The days since then have blurred together, one day seeming to begin before the day prior even ends. I have drifted through these past few weeks on the wings of distraction and emotional distance before finally crashing to a place of acknowledgement. I can’t remember the exact moment of impact, the exact time I inhaled acceptance and exhaled disappointment. It just happened.

Back in January I decided to make ‘resilience’ my word for the year. That word would take up residence in the forefront of my mind. It would be the lense to which all events of the year were seen through. One night I remember laying in bed with Carter and praying the Lord would help him to develop ‘resilience.’ Not having much context for the word he asked me to explain. I told him ‘resilience’ was like standing at the shore. It was like standing with your toes barely in the water and then beginning to step out, one foot at a time further and further. I painted a picture with my words for him of a wave crashing towards you, knocking you down. I told him resilience was how well you could stand back up after the fall. Then I told him to pretend the waves kept crashing, each time knocking you down. I described how hard it would get to stand back up after each crashing wave. Told him what I wanted for my life was to always get back up. To always keep walking forward even when the waves wouldn’t let up.

I want so much for our journey to bring hope but even more than that I want that hope to be found authentically. The truth is, if I were to use that same illustration today, I would say I am currently face down in the sand with waves crashing over my entire body. I’m not even trying to stand anymore, let alone walk forward.

Each one of us will experience pain and suffering in this life, of that there is no question. There will be a season for each of us when we feel as though the world is falling apart- I get it. I have accepted that we live in a fallen, unfair world. We will all experience something that makes us feel like our heart has been ripped out. The image that keeps coming to my mind is the ritual sacrifice scene from Indiana Jones and the Temple of Doom. You know the one, where they rip the guy’s heart out? But as I’ve been thinking about that scene I keep thinking: that is not what this feels like. See in a crazy kind of hell, they would put the heart back in. They would rip the heart out, yes. But then they would put it back in just long enough to let the man feel hope and relief. Ripping the heart out once would be painful but to do it again and again and again would just be cruel. THAT image, that is pediatric cancer with multiple relapses. That is learning to live with doctors telling you your daughter won’t.

The first time Izzy got sick was absolutely devastating. My entire world turned upside down and inside out in an instant. With each relapse, the upper case ‘C’ in cancer has grown smaller and smaller. Each time the word carries less and less weight because each time it is just more and more of the only thing she has ever known.

This past Monday she started oral chemotherapy at home in addition to an IV drug she will receive once a month at the hospital. She woke up at 5am today crying because of the pain in her legs the IV drug is causing. Next Wednesday we will travel to Cincinnati for twenty rounds of radiation. She will miss over a month of school and grow more and more tired with each round. She hopes to keep playing soccer on the weekends, to keep being able to ride a bike through all of treatment but I watch her struggle to go up and down the stairs and I wonder. I hope and I fear and I wonder.

It’s good for me to write. Good to put words to the emotion that I feel. I haven’t written an update yet because when I looked at the words I tried to put together they weren’t the ones I thought people wanted to read. Today I woke up and decided I didn’t care. If you want to follow our journey, I welcome you to. But I will not promise to make it pretty because it’s not. I will not try to wrap it up with a pretty little bow because I can’t.

I wholeheartedly believe that God is walking on this journey with us and I believe he will redeem it. But I will not pretend to know what that looks like and I will not throw around the name of Jesus in a certain way to give people warm fuzzies. God deserves more than that and so does Izzy.

I am so grateful for every day that I have gotten to be her mother and I will continue to ask for more time on this journey with her. I would be honored for you to do the same

Blessings on you today and LIFE for Izzy.

The Second Half of Hope

Izzy bares a striking resemblance to me. Her eyes, her nose, even her heart. She is half me and that means her story is half mine. When I look at her life and all that has come from it I cannot help but remember that she almost never was. Izzy almost didn’t exist because nineteen years ago today I attempted suicide. Each year on this day I celebrate that even though I chose death, life wasn’t ready to let me go. I chose to share it with you this year because I know there are so many who struggle with depression, fighting to keep their head above the water. To those fighting I say: you are not alone.

19 years old, I sat alone in my room and chased a bottle of Ambien with a cocktail of NyQuil, Benadryl and Dramamine. I emptied bottle after bottle telling myself I had to be sure to take enough because the only thing more pathetic than my suicide would be failing at it. Pill after pill slid down my throat until carefully I covered my tracks before climbing into bed. That covering – placing the empty bottle of Ambien back in the cabinet where it belonged – saved my life. A few minutes later my mother would go to get that bottle, offering me my nightly pill that was helping me sleep through depression. Had I left that bottle in my room everything would have played out differently. She would have gone to look for it in the cabinet and not finding it would have opened my door to see me sleeping in bed, the bottle on my dresser. She would have told me goodnight, would have closed the door and not knowing, would have left me to die. The next half of my life would have never been, my children included.

Fortunately, my methodical placing of the bottle back where it belonged saved my life. When my mom saw the bottle in the cabinet she reached for it. With that reach she felt its emptiness and with that emptiness she knew.

An ambulance would arrive at our home before I was unconscious. They would find me running in my front yard until I collapsed. In that moment, as they put me on a stretcher in the middle of my front yard, my failure at death outweighed my failure at life. My world and every car that drove by watched it all.

For years after that night I walked with great shame. My entire world had seen that I was a failure. There are glimpses of that night that are etched in the stone of my memory but the shame I walked with for so long has dissipated.  The events that took place leading up to that night – the damage of a toxic, abusive relationship – have not left permanent marks on my soul. Mercy has washed away the memories. Forgiveness has washed away the shame. Most importantly I have learned to walk forward with hope.

Hope is a crucial piece of living fully. It’s what keeps us going. The first 19 years of my life I couldn’t fully grasp that. I thought hope was believing in the best possible outcome. But that is only half of it. Over the next 19 years of my life I would learn the power in choosing to let go, in completely surrendering that which is in my control and that which is not. I would learn that true hope is believing in the best possible outcome while equally walking in surrender. THAT is the second half of hope. That is part of what I’ve learned in this second half of my life and I’ve learned it through my Izzy.

Every night I pray the exact same words over her. I have done this for a while, believing she would memorize them and join me in praying over herself. She has not. Yes he has memorized the words but she prays them over me, not herself. Each night I climb in bed with her, placing my hand on the site of her original tumor – the left side of her tummy. She puts a hand up near my face then repeats each sentence after me:

Jesus, thank you for Izzy (Mommy)

who is perfectly and wonderfully made.

Watch over her while she is sleeping

and help her to not be afraid.

Lord I ask you to cover her with peace,

to fill her hope and strength and love and compassion.

I ask that you continue to bring healing to her body

and fill her with LIFE.

As Izzy says the last line she pulls her hand back from me and extends it out in the air with all five fingers spread a part. It’s a little like she’s making a powerful declaration and at the same time releasing everything she just declared to the One above.

Hope is Izzy’s hands at the end of our nightly prayer: the first half a powerful declaration and the second half a release.

Today is important to me because it puts my 38 years in perspective. The years before my suicide attempt (1-19) and the years after (19-38). The second half of my life has not been the fairy tale I wanted. Clearly I have walked with both unimaginable pain and fear. Sometimes I have walked with grace and honor and sometimes I have not. But I am still walking and I encourage you, no matter what you’re fighting, to do the same.

Keep walking – hold your head high and don’t ever apologize for who you are. Don’t fall captive to shame or fear.

Keep hoping – believe that the best outcome is still possible. But surrender it all anyway.

Blessings on you today and LIFE for Izzy!

Falling Against the Wind

Monday morning I went for a run after I got the kids off to school. Per the usual it wasn’t raining when I started and quit almost the moment my foot hit my front step. But for two miles there was a constant stream of water from the heavens. It was hard to look up, my head hid in the grey, cotton hood of my sweatshirt. I stared mostly at my pink, wet shoes as they splashed on the barren country road. When I did look up I was instantly captured by the rain in front of me. I couldn’t help but notice that regardless how gravity tried, it could not make the rain fall straight down. The wind was blowing so hard it made the rain appear to be falling almost sideways.

For the rest of my run I thought about the raindrops and how, in spite of all their aerodynamics, still some times there was too much pushing against them for them to fall straight. As I ran with my head back down, hidden in the security of my hood, my  mind wandered back to my own life and the life of my family. I begin to think about how even though we were created to fall so gracefully from the sky, we have found ourselves falling against the wind for as long as I can remember.

Today is Izzy’s ninth birthday. With her in remission and off chemotherapy I often find myself forgetting so much. I find myself living so freely, completely independent of where we have been or where we may ever go. It’s a gift to feel that – to walk in such normalcy, whatever that word is supposed to mean. The problem with walking in moments of normalcy is found when you remember all that is not normal. Like a smack in the face, glimpses of reality come from nowhere reminding me of it all. The pain, the suffering, the fear. The past that should have been, the innocence that was stolen, the days that can never be given back and the peace I know I may never feel again.

The truth is, like every parent, I want time to stop right where we are. Not just because she is growing up but because she is living. She is thriving and I want to experience this forever. She has defied the first set of statistics over the past five years and I celebrate that. I rejoice and stand with thanksgiving – forever grateful for not only what has been but what has not been. But next month. Next month will bring the two year mark since the cancer returned again and we were told the unthinkable. Told the five year survival rate for relapse was less than 1 %. Can you even imagine the weight of walking with that? Can you imagine living with that knowledge and watching your daughter live without it?

Do you remember those paper chains we made as kids right before Christmas? Each night you would tear off a link of crinkled construction paper leaving the chain a little shorter. As a person obsessed with numbers, there is now a permanent paper chain in my mind. It once held one thousand, eight hundred and twenty five rings on it, each representing the days we were told were left for her – best case scenario. Today, on her ninth birthday, I will tear off the seven hundred and thirtieth chain, leaving not even eleven hundred left. Eleven hundred days. These rings feel much heavier to my soul than construction paper. More like rocks, the weight of too many of them becomes unbearable. Over the years I have found a direct correlation to the weight we carry and our ability to find hope. When we walk with more than we were intended to carry, hope seems a permanent fixture in the distance that we will never reach. The weight of our burden prevents us from stretching to the place that hope lies.

The Lord is faithful to give us freedom in exchange for our burdens but he is also faithful to respect our privacy and our will. He will not force our burdens out of our clenched fists. We get to chose what we do with the weight we were never meant to carry. If we hang on to it, we will eventually find hope unattainable and freedom impossible. But if we can set the burdens down we will find hope well within our reach as the gentle breeze of freedom carries us there.

Many years ago our doctor told me that I would have to learn to live knowing that Izzy might not. In that moment I hated him. I hated him because I thought doing so would be quitting. I thought doing so would be a sign of weakness. But as the months and years have passed I have found great truth in his words. I still pray for healing every night. Still lay hands on her belly and speak life into her body. But as I leave her room I have learned to accept that her living isn’t dependent on me. And that means my living can’t be dependent on her either.

In three weeks we will head to Florida for spring break, enjoying a normal, restful week at the beach. The week we return we will head back to Cincinnati for scans to see how she is doing off chemo. I don’t know what the future holds for us today anymore than I did five and a half years ago. Don’t know if she will continue to be a miracle or if the Lord will call her home. But the truth is, its not my choice. The only choice I have in this is whether I will hold tightly to the weight, keeping hope and freedom out of my reach or if I will surrender it. Some days I make the wrong choice but some days I do it right.

For the greater part of nine years we have been falling against the wind and its exhausting. But here’s the thing about rain: the smaller the drops, the easier it is for the wind to move. But the bigger drops cannot be moved off course easily. The bigger drops have enough inertia to overpower the efforts of the wind. Today, I’m thankful to be in this massive storm with the daughter the Lord has given me. The wind is only blowing so hard because she is so hard to move. She is a God given force to be reckoned with.

Blessings on you today and LIFE for Izzy.

 

 

 

 

A Walk Through The Waiting

Tuesday Evening: The Night Before

I sit on the floor of her room watching as she packs a tiny suitcase for her doll. Filled with tiny pajamas, a tiny blanket and a tiny bear it looks nothing more than a chore any other little girl would complete on the eve of a trip. Until she finds the tiny oxygen mask and packs it too. This is different, I think. This is what makes her different. 

Carefully she then undresses her doll replacing the pink shiny dress with a hospital gown. She begins to talk the way she always does before these things. She tells me her new doll is nervous about having her first set of scans. She has told her all about what to expect but still the doll is a bit afraid so Izzy goes on with more detail of what she can expect. 

For many years Izzy has managed her own fears and confusion by role playing with her dolls. The dolls have changed from time to time, even once it was her favorite stuffed elephant, but the story is always the same: the make believe friend is nervous about having a scan to look for cancer in her body. The scans make the doll nervous like Izzy once was. The equipment, the noises, the needles and masks. 

If asked if she, too, is afraid Izzy will always say, “No, I’m not afraid but I’m a mom. I have to take care of my daughter and let her know everything will be okay.” Isn’t that what mothers do, after all? We take care of our children – telling them that everything will be okay – even when we, ourselves, carry the very same fear. 

Wednesday: Scan #1

We sit quietly in the prep room while nurses and assistants come in to take vitals and write up notes. Izzy takes her doll from the stroller she has been pushing and climbs into the chair, holding her tightly in her arms. She whispers to her softly and I cannot hear her quiet words. 

A new nurse comes into our room. She works with the anesthesiologist and needs to go through Izzy’s history. She needs to confirm the things that have been in her chart for years. Things I will confirm again tomorrow. She begins to call off every procedure, every diagnosis, every complication Izzy has ever had like they are just words on a list. These words carry no weight for her yet they pull me down further and further as she calls them off. 

“Adrenalectomy, tumor resection, bone marrow transplant,” I nod. “Recovered pulmonary hypertension, esophageal strictures, hearing loss,” I nod again, saying only the word: correct. “History of multiple chemotherapies, radiation, a g tube placement, a g-j tube placement, multiple central line placements, a port,” I sigh this time as I nod, listening to the list continue. I tune out the words she reads finding too much pain in each of them. I grow bitter wanting to lash out at her: how many ‘words’ are on your own daughter’s list. It becomes too much so I fixate on the cartoon playing on the screen. She continues, “high blood pressure, intestinal obstruction, nightly feeds,”  I continue to agree. The cartoon is an older episode, one that has played over and over again during our years in this very hospital. This cartoon, I’m thinking, is one of the most constant things in our life. This cartoon, this complete fabrication of reality, is more constant than my daughter’s health has ever been. Izzy is kicking me now, noticing I have drifted off so I adjust myself and tune back in to the nurse.

“She needs to receive a dose of Dex before she wakes,” I say. “Sometimes they will give fentanyl too, right after the propofol drip finishes. Either is fine but she needs one or the other.” The nurse scrolls back through the notes in Izzy’s chart to confirm my request and agrees that I have told her what is needed. “And I’d like her to have an extra bolus of fluids. 500 please,” she says okay and continues typing.

Soon we walk back to a different room where they are waiting for her around the bed she climbs into. She covers herself in her purple blanket, left arm wrapped around her elephant. Then she pulls the doll upon her chest laying her in an identical position – covers her also in a purple blanket and places a stuffed bear under her left arm. With her right hand, Izzy places the mask over the doll’s face and then tells the team who has been most patiently waiting that she is ready. The anesthesiologist places a mask, not much bigger than the dolls, over Izzy’s face and tells her to breath slowly. She continues to hold the mask tightly over the doll’s face in unison with the anesthesiologist.  The smallest body in the room she is the strongest force, completely in control of all that surrounds her.

Suddenly her eyes move from the doll up to me and she panics letting go of everything and reaching for me. She is half awake, half asleep the drug beginning to take over. I take her hands and put them back exactly where they were before. I place one hand over her hand that holds the doll mask and my other over her hand that holds the elephant. I squeeze them firmly and warmly, assuring her with my eyes that I am there. I tell her, as mothers do, that everything will be okay.

Within seconds she falls asleep and I am asked to leave the room. I kiss her forehead and walk away heading down the long, white corridor to wait. 

Later that night I lay in a hotel bed wondering still what the test results will show. The doctor has emailed to say he is out sick and we would talk tomorrow after Izzy’s second scan. I think about the waiting and how I hate it. I think about how even though the waiting holds so much fear it holds so much hope as well. I think that maybe tomorrow I will wish I could come back to this place of hope. Think maybe this night will seem peaceful compared to what I feel. 

Then I think back to the thing Izzy said to me a few weeks back, the thing that has been in and out of my mind all day. I think back and I wonder what I will think about it once I get the results tomorrow. Its this thing she said that I can’t stop thinking about. This heartbreaking, beautiful, matter-of-fact kind of thing. This is what the thing was…

It was just a week or two ago and I was lying down with her before bed talking about the things of our day as we always do. Somehow she started on the subject of school and went on to tell me they were studying countries in her third grade class. She was studying Israel, her namesake. I asked her what she was learning about it and she began to describe to me what a beautiful place it was. A valuable place that bad people were always trying to destroy. I began to remind her why we had given her the name Israelle – because the people of Israel were God’s chosen people. What a beautiful thing to be – His Chosen One. 

She thought about it for a while and acted as though she had never heard that before even though she’s been told it many, many times. The room grew quiet but before long she broke the silence with her revelation, “Mama, I think I know why I have cancer.” My stomach dropped and I wished I could undo our conversation. I hesitated, “Why’s that baby?”

“Because my name is Israelle,” She declared, her words making the darkness of her room even darker. My heart ached and before I could begin to think I desperately blurted out, “Why would you ever say that?” 

“Well it’s just like the country, with people always trying to destroy it. But God saved the country … and it’s kinda like that for me you know, because I’m a survivor.” 

Thursday: Scan Day #2

She is back in the scanner sound asleep now as I sit in the designated waiting room for radiology patients. My heart is pounding and I feel my stomach creep and crawl within. I no longer feel the hope of not knowing, I feel the fear. It is surrounding me, over taking me and I want to either vomit or pass out. I know that someone back there is looking in her body at this very moment. Someone knows the thing I want desperately to know. I picture them all standing around her sleeping body talking about what they brought for lunch or what they watched on tv. I wonder where they put her doll. Wonder if they set her aside with dignity or cast her carelessly into a chair or table. I put in my headphones, close my eyes and wait. 

By the time we have picked her up in recovery and taken her to the oncology clinic it is all I can do to not cry. To not scream. We sit in silence in our room for an astounding thirty-nine minutes before the doctor opens the door. We are handed papers, conversation begins and finally, twenty-four hours since the first scan ended I finally know. She is still fine. The scans both revealed no change. She is stable. She is in remission. We will scan again in the middle of April.

This kind of waiting has become debilitating for me. My entire body is almost numb now. I do not feel joy but I choose it. I do not feel thankful but I choose it. I do not feel anything but I choose to not let that steal this moment. In this moment I am reminded of the ongoing attempted destruction of Israel and I hear my daughter’s words boldly in my mind: God saved the country…and it’s kinda like that for me, you know because I’m a survivor. 

Blessings on you today and LIFE for Izzy. 

Re-Birthday

It was early January, 2012 and we sat in her hospital room in the deepest level of isolation she had ever been in. Only one adult was allowed in the room with her around the clock and no one under the age of eighteen. We were allowed one visitor at a time but with our distance from home there were never many more than that anyway. She had been given high doses of chemotherapy beginning on Day -7 to kill nearly ever cell in her body. Unlike regular chemotherapy which left some cells behind, this killed everything. In the weeks to come she would shed her skin, her fingernails and any eye lashes she had left. But for today, today was Day Zero and she was finally getting her stem cell transplant. On the Transplant Floor this day was celebrated as her Cell Day. They hung a birthday sign above her door and the Child Life Team came in isolation gowns to sing ‘Happy Cell Day’ (to the theme of ‘Happy Birthday’ of course, for today was a day of re-birth). A day to start over in hopes for a cure.

Over the next two months I watched as what I knew of suffering was redefined. Most days she lay still in bed, fixated on the TV but not really watching. The morphine pump was running almost constantly so she didn’t feel the full magnitude of her pain. She was too weak to stand, to even sit, to even smile. Smiling required moving her mouth which was filled with bleeding sores that went all the way down her esophagus. This made the constant vomiting horrendously painful and she fought it every time. She didn’t want to throw up because she knew the acid from her stomach would burn the sores as it worked its way up her throat and out her mouth.

Those were the days when her hearing really started to go. We didn’t have hearing aids yet so she couldn’t hear my goodnight whispers in her ear anymore. Couldn’t hear the morphine pump beeping. Couldn’t hear the tv very well, though I’m not sure she was really watching anyway. She just stared into it day after day, the whites of her eyes growing grey as her skin continued to flake off.

A few weeks in she hit rock bottom and nearly went into kidney failure after a complication from the chemotherapy took over. For days we waited to see if they could get her through it. We delayed the radiation she was scheduled for waiting to see what would happen. The radiation would hit right next to the left kidney and we knew that if we began before her kidneys recovered we could send her into complete failure.

Those were the darkest days of my life, that portion of treatment where she was the closest to death I have ever seen her. But I knew that going through it was her only chance for a cure. That’s all it was too – a chance. A chance for a better life, a chance to overcome the disease that was trying to take her life, a chance that – as we know now – didn’t work.

Today is the four year anniversary of that stem cell transplant. Today, January 9th, is her Cell Day or as I like to call it, her re-birthday. And while I am so unfathomably grateful that she is still alive four years later, I am still so unfathomably terrified of what the future holds as well.

She had her last dose of chemotherapy on December 23rd and in two weeks we will go for scans to see what is happening inside that tiny, strong little body of hers. I told her last night that our nurse wouldn’t be coming to the house today like she does every Monday. Told her that we were taking a short break from getting labs all the time. She smiled and raised her hands into the air. “YES,” she said nearly screaming. “I’m so excited Mama. So excited that no one will hurt me anymore.” My heart broke as it often does when she says things like that. When she speaks about the injustice she has lived.

Izzy collected beads during her 18 month inpatient treatment protocol. She earned one for different procedures, different horrors she endured. This one here was given to her for her stem cell transplant. Like the others, I will cherish it always.

 

 Writing has always been my outlet. The way I feel, the way I grieve. But as the months and years have passed I find I have less and less to say. For a season I wanted to reconcile everything she had gone through into some kind of sense in my brain. But I finally accepted that some things just can’t be reconciled. Some things will never make sense, will never be fair. So this week when she talked to me about the four kids she wants to have someday, two boys and two girls, I didn’t try to stop myself from feeling the pain. The pain of knowing all the things that she doesn’t know. All the things that have been spoken over her. Things like: she won’t live long or that she will never be able to have children even if by some miracle she does. I don’t want to try to make myself feel okay about any of that because I’m not.

But I also don’t want to miss a second of her life because I’m too consumed by pain or fear. So if there is ever a moment to celebrate her life I will take full advantage of it. Full advantage of celebrating every milestone – like a 4th re-birthday. So I’ll buy a cake, I’ll wrap a gift and after dinner tonight we will have a 4th re-birthday party. Through the pain and through the fear we will sing and we will celebrate. But not because I’ve reconciled it into anything beautiful – quite the contrary. We will sing and we will celebrate because I can’t turn it into anything beautiful. We will sing and we will celebrate because the whole thing is an unholy mess but she is still alive in the midst of it. And that is reason enough.

Blessings on you today and LIFE for Izzy.

A Cross Stitch Perspective 

Someone once told me that life was like the a cross stitch picture. That the happenings of our life were the series of stitches, crisscrossed thread and knots – basically, the complete mess that is the back of the canvas. She told me that only from heaven would we be able to see the front of the canvas. That only then would we see the beauty that each tiny stitch and knot had contributed to.

I suppose I believe that something like that is true. You see, I do not believe that things in life just happen without a greater purpose or without an opportunity for their redemption. Just like with cross stitching, I do not think there are random threads and knots all over the place. I think it feels like that to us sometimes. Feels as if our lives are just one big knot after another but I think that’s just because of the side of the canvas we are looking at. In the end I believe we will see the finished product – a pulling together of all threads to make something beautiful. Even threads of pain. Even threads of heartache. Even threads of the most unfathomable loss.

Today, with the recommendation of Izzy’s medical team we made the decision to end chemotherapy. She will begin her final cycle next week and after that we will wait and see what happens. They essentially told us we would “wait for the cancer to return.”

The chemotherapy that she started in the summer of 2015 put her in remission and has kept her there. Stopping it is a complete risk, perhaps the biggest risk I have ever taken in my life. But not stopping it brings risks of its own. Eventually her body will develop a resistance to the drug and so the tumors will begin to grow again anyway. If we stop before her body develops a resistance, the chemotherapy could potentially work in her again. 

The problem with High Risk Neuroblastoma is that after relapse a chemotherapy only works for so long. After a resistance is established to one, you try a second. Once resistance is established with the second you try a third and so on. You continue until there is no longer one to try or until the side effects simply become to unbearable. We have been told this many times and it never gets easier. Making the decision to stop feels like jumping off a cliff and just waiting. Will there be a parachute to catch us or will we crash violently into rocks and waves along the rugged coast?

Of the 365 days of the year Izzy will take her last dose of chemotherapy on December 23rd  – the five year anniversary of her diagnosis. On the five year anniversary of the day that changed our lives forever we will close out another season. That day we will also go downtown and pass out Christmas gifts to the homeless per Izzy’s request. We did it last year and this year we have decided to make it an annual tradition. We will choose to take what the enemy tried to mark as a day of PAIN and turn it into a day of LOVE. Choose to GIVE on a day we remember all that has been TAKEN.

We went away this weekend to a hotel with an indoor waterpark. Izzy ran around like every other child there- full of joy, full of life. Late last night I watched her play in the wave pool, waves crashing up against her little frame. From out of nowhere a baby girl, probably around one, walked up to me and smiled. With blonde hair and blue eyes she reminded me so much of Izzy when she was that age. Soon Izzy found her way back to me and soon the baby girl found her way to Izzy. They began grinning back and forth at one another, making faces and laughing. Izzy loved it. 

Eventually the little girl wandered out into the water, just far enough that the waves washed over her feet. Izzy followed and the two stood side by side for a few moments smiling and watching the water grab their toes.For just a moment time stood still as I watched the two together. I looked at the baby girl on my right and I remembered all that I had wanted for my own baby girl. I remembered the innocent way I had once held her and rocked her and dreamed of what her life would be like. Then my eyes went back to my own daughter, her frame so slender, almost bony from the effects chemotherapy has had on her appetite. I looked at her thinning hair and then I began to cry. I cried because her life did not turn out the way I had expected. I cried because I was jealous of the baby girl and the life that was most likely ahead of her. I cried because I now know a pain and a fear I had never known when Izzy was that little.

Soon Izzy raced back to me and I held her close, wrapping her in a towel. I dried her off, put on her cover-up and she told the baby girl goodbye. We walked away leaving them with their innocence and their dreams. We walked away with fear of our future as they stayed and played with hope for their own.

We have a plan for now until December 23rd and after that I don’t know what to expect. I do not know what December 24th or the days that follow will bring. I know only two things for sure: 

1. God is and always has been faithful – not to give us what we want but to walk with us through the good days and the bad. 

2. We must always walk forward with hope even when we have been told there is none – ESPECIALLY when we have been told there is none. Because what we do when there is no hope, how we choose to live in darkness, THAT is what defines us.

I have watched as it has defined Izzy and I can tell you this: Witnessing the creation of the cross stitching that is her life, even the messy and tangled side I can see, has been the greatest privilege of my own. 

Blessings on you today and LIFE for Izzy.

Forever Fall

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Fall is, by far, my favorite season. It is those classic cliches that I love the most: the crisp air, the turning leaves, the bonfires begging you to gaze into them. All that and more makes Fall my favorite. Makes me love it more every single year. For about one fourth of my life now Izzy has been around to share my favorite season with. Most Falls we have spent jumping into leaf piles and sitting around fires. Most Falls but not all.

The picture was taken four years ago. Izzy was three months into aggressive treatment, with 15 more ahead. At this point in our journey I was completely lost. I had been ripped away from my family and friends and was stuck in a hospital room almost constantly. Two hours away from everyone I knew, I was alone and afraid. In spite of it all, I still had one very fragile thing in this picture: hope. There was a thirty percent chance that this horrific treatment (of which the worst was still to come) would provide a cure. That somehow between the chemotherapy, the radiation and the stem cell transplant – somehow between her unfathomable suffering and the equally unfathomable grace of God – this nasty disease would be eradicated forever. But as life would have it, that was not to be.

One day the disease would come back and one day the doctors would look at me and say that there was no longer hope for a cure. They would tell me that all we could do was delay the inevitable. Our new goal became to give Izzy as many years as we could and to try to make them as painless and joy-filled as possible. You can imagine how that moment changed everything. How in that single moment in time life crumbled, never to be the same again.

So often we talk about how our life experiences create a ‘lense’ through which we ‘see ‘ the world. Over the past few years I have learned that what our life experiences do is actually so much more complex than that. I believe that we choose whether to let them mature us or destroy us. We choose to let them shape us or define us. But I have also learned to believe that our life experiences actually create the ‘skin’ around our heart through which we ‘feel’ the world. And on that day last spring when they told me hope was gone the skin around my heart grew thick and dark, rapidly covering the brilliant root of my soul.

This isn’t what my life was supposed to be like, you know. Haven’t you ever thought that before? Haven’t you ever thought that the thing that happened yesterday shouldn’t have happened or should have happened differently? That the end result should have left you in a different place?

Most of us think along those lines. When the life we wanted doesn’t line up with the life we actually have we tend to think that something is wrong. And it is. But not with the life we have. What is wrong is actually found in the life we thought we were going to get. That life, the one we wanted, is a fairy tale and our fixation on it can prevent us from fully experiencing the life that isn’t. We have to let go of our fairy tale before we will ever find peace in our reality.

Izzy has been fighting a cold for a week or so. That combined with two rounds of chemotherapy and she’s just wiped out. The past few days she has continued to spike fevers requiring us to take her to the Emergency Room. Today was Pajama Day at school and she cried that she couldn’t go. “I feel fine,” she cried, tears streaming down her cheeks, her temperature 103. I knew I couldn’t send her and it broke my heart. She slept most of the day and woke up this afternoon in a panic about gymnastics tonight – it was the first night, “Please, Mama, please let me go to gymnastics tonight. I promise I will feel good” She has been waiting for months to go. She lay her head on my lap and we sat in a ball together, both of us crying. She looked up at me when she heard the shudder between my sobs. “Why are you crying, Mama,” she asked, the whites of her eyes stained red. I took a few breaths and thought about how to respond.

“I’m crying for the same reason you are. I’m crying because you’re sick and I’m crying because I can’t make you better.”

“It’s okay, Mama. It’s not your fault I’m sick,” she said, coming up from my lap and wrapping her arm around me. “It’s nobody’s fault.”

I let her go to gymnastics tonight. I let her go for the same reason I am letting her participate against the recommendation of her medical team: because she’s a kid. Because this disease has already stolen too much. Because I’m her mother and I am her greatest advocate on this earth.

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I don’t know how many more Falls I will have with my Izzy. Don’t know how many more times we’ll lay in the leaves together and look up at the sky. That alone makes me want this one to last forever. I want these days, these ones from that life I didn’t want at all, I want them to be never ending. But as we know, nothing lasts forever and here’s the thing I love about Fall the most: the elegant way it teaches us that. It is during this one time of year that the earth shows us the beauty that comes from letting go. The leaves turn their colors and drop from the sky, creating a wondrous canvas upon on the ground. The branches of the trees stand empty and alone. They stand in a long and glorious pause – waiting, teaching – because even though it seems hopeless there is still more to come.

 

I encourage you to join me this Fall in letting go of the life you didn’t get and enjoying the one you did.

Blessings on you today and LIFE for Izzy.