As child I didn’t know what to think of her. In comparison to my timidness, her larger than life personality left me awe struck. She was powerful and feisty and when she left everything felt renewed. I often wished she … Continue reading
For 5 years I’ve spent my afternoons in this same spot. In a creaky rocking chair , feet on the windowsill, making heart shapes with my feet against the glass, watching my children live the memories they will carry with them forever in our yard. Their shouts and squeals muffled but the joy on their faces bright against the blankets of snow. Little red noses and cheeks, trees dancing as they’re tickled by the feet of a child in their branches, sticks vanquishing enemies, spinning round and falling back to look at the sky. I want to live right here forever. And yet every three months I find myself in the same spot. Living in the week ahead. Unable to swallow past the lump in my throat. Tears that fall without reason but are anchored in a place of great love. Eight days. Eight days between now and forever. As everyone on the internet posts their word of the year my only thought is please don’t let ours be cancer. I don’t need a word to define my coming year. It seems a gross extravagance for a family that is currently living in 12 week intervals. I want to speed up time and get the MRI over with and at the same time desperately wish I could slow it down and live in this most blessed place with my feet pressed against this window forever. I’m unable to do either. Life continues at the same speed no matter how hard we dig our feet in. Please join us in praying for our sweet boy over these next few days. Pray for peace in the waiting. Pray anesthesia goes smoothly. Pray that the phone ringing brings the word stable. Stable.
The Spring before Holden was diagnosed I attended the first Sweethearts Ball. For those of you who don’t know what that is it’s a fundraiser in Coeur d’Alene for a camp for Children with cancer, now called Camp Journey. I ate dinner and shed a few tears as I watched the video about the camp. At the end of the night I wrote a check, walked to my car, let out a big sigh and prayed, “God thank you that my children are healthy. I COULD NOT do that!”. Now I used to imagine that at that point God said, “Wanna bet?!?” I promptly forgot all about that night. Life doesn’t stop and kids with cancer is not fun to think about. Four months and 27 days later I found myself in the ER at Sacred Heart staring at a doctor who had just said, “Well, it’s cancer.”, while picking her dinner out of her teeth.
An hour later when the the elevator opened on the 3rd floor the word Oncology hit me in the chest and took my breath away. As we entered the unit I was horrified as we passed room after room each with a little bald head in it. Before that moment I honestly thought Childhood cancer was so rare all kids were treated at St Judes. How could I not know places like this existed an hour from my house? I thought cancer doesn’t happen here. It happens on TV commercials and sad Facebook posts. I would soon realize how wrong I was.
The next day we learned that Holden had Rhabdomyosarcoma. In my mind I spelled it over and over afraid I would forget. This makes me laugh now because that’s not exactly something you forget. A few days in the hospital followed by a port placement surgery and a stay in the PICU and ready or not, we were shoved face first into treatment. 11 months of chemo and 6 weeks of radiation. I’ll spare you the details because I’ll cry my mascara off and frankly there are not words that big.
Now that Holden is off treatment I’m surprised that it’s not as easy as I thought. On one hand mundane ho hum every day life is AMAZING. And I get to sleep which is again, AMAZING. On the other I am in constant fear of the unknown. Google is not my friend. But the hardest thing by far is that I want to be in two places at once. I desperately want to go back to a world with out childhood cancer or at least where I could push it out of my mind. I wish it never happened. I wish I didn’t have to wonder about every bump and bruise that before cancer I would have shrugged and said, he’s a boy who plays hard. I wish I could cleanse my mind of the reel of horrifying images of my son in pain that will never leave me. I want to go back to a world where my child doesn’t scream in worry, “I don’t want to have cancer again” after he gets sick in the car.
Oh how I desperately wish I could go back. But If I was some how able too I would have missed out. I would have missed out on so much. I would have missed out on Sarah. I met Sarah our very first day in clinic. My husband and I were huddled in the corner of the playroom with that shocked, deer in the headlights, I can’t believe this is happening, first time in clinic look that all of us know well. We’ve all been that parent and we’ve all seen that parent. I was hoping no one would talk to me. Every one was smiling and it was so opposite of how I felt I wanted to stand up and scream “what is wrong with you people!” But Terry started playing the guitar and sweet Sarah started dancing. A bald head, in a pink dress, attached to an IV pole dancing with Joy unspeakeable. It flowed out of her infecting the entire room with it’s warmth. She danced when I wanted to run. She danced when other people would be feeling sorry for themselves. She danced and taught me that circumstances do not dictate happiness. That ho hum mundane life that I now think is amazing is because of Sarah. I sadly didn’t feel that way before cancer. There was always something else I needed before I would be truly happy.
I also would have missed out on really finding out where my true strength comes from. I watched Holden handle everything amazingly well. When we were in the hospital I would cry in the shower because he was being so strong and I felt like I had to match it. I didn’t want him to see me cry. Before cancer I muscled through everything on my own. I knew Jesus, I loved Him, I believed in Him, but I could and would do everything on my own. I was so mad at Him after diagnosis I had a hard time praying. But I could feel his presence everywhere. In the midst of the most trying time in Holden’s treatment I found this quote by Brennan Manning:
“When tragedy makes its unwelcome appearance and we are deaf to everything but the shriek of our own agony, when courage flies out the window and the world seems to be a hostile, menacing place, its the hour of our own Gethsemane…The night is bad. Our minds are numb, our hearts vacant, our nerves shattered. How will we make it through the night? The God of our lonely journey is silent. And yet it may happen in these most desperate trials of our human existence that beyond any rational explanation, we may feel a nail-scarred hand clutching ours…In our vulnerability and defenselessness we experience the power of Jesus in His present riseness.”
This became my battle cry. It doesn’t sound brave because in our most trying times sometimes all we can mange is a whimper. When everything is upside down and the heaviness of the pain you carry is unbearable what we need most is not to hear platitudes but for someone to grab our hand and walk with us. I orginally used to imagine that God said, “Wanna bet” In that parking garage almost 3 years ago. Now I know he said, “I will help you.” And He did. Even on the days we weren’t on speaking terms I could feel Him holding me. The fear hasn’t gotten any easier, the pain is still heavy, but I know I’m not doing it alone and that makes all the difference.
I had a hard time writing this speech. This is my third try. They all seemed lacking. Lacking because Childhood Cancer is no small thing. As much as I have tried to measure it with words over the last few years I haven’t been able to. I don’t have words that big. But I will keep trying, because for every child with cancer there are thousands of people who are just like I was before.
It rained today. It poured, and I felt like I was drowning. The rain was too much of a parallel to my own life today. Every time it seemed to let up it would begin again, but harder, like it was trying to suffocate you and wash you away. I wished it would stop. Having the outside world match your inner pain is overwhelming. But my son looked at me and said, “Mom, the mud puddles are going to be awesome!”
Where are my mud puddles? I want to run through them laughing and soaking up the rewards of the rain. But some days they never come. It just rains. Days when you feel deep loneliness in a full clinic because families you started treatment with are home, cancer free, and you are still there. Days when a bald little girl with a doll brings you to your knees because she reminds you of another little girl who now walks with Jesus. Days when a father throws his coffee against the bathroom wall because it all hurts too much. Days when you walk down a hospital hall filled with children you don’t recognize because they’re all new and it breaks you. Days when the tears are unending. And days, upon days, upon days filled with doubt whether you made the right decision and knowing it will be months before you find out. Months. Days that run into nights where sleep never comes but you are so tired. I am tired and Holden is tired and the finish line for the marathon we never trained for seems so very far away. And all I can do is sit. Sit, breathe through the pain, and let my heart cry out to Jesus because I don’t have the words. I simply don’t have words that big.
“When tragedy makes its unwelcome appearance and we are deaf to everything but the shriek of our own agony, when courage flies out the window and the world seems to be a hostile, menacing place, its the hour of our own Gethsemane…The night is bad. Our minds are numb, our hearts vacant, our nerves shattered. How will we make it through the night? The God of our lonely journey is silent. And yet it may happen in these most desperate trials of our human existence that beyond any rational explanation, we may feel a nail-scarred hand clutching ours…In our vulnerability and defenselessness we experience the power of Jesus in His present riseness.” –Brennan Manning, Abba’s Child
I haven’t prayed in months. Okay that is not entirely true, I say bedtime prayers with my children, I pray for people that ask me to pray for them, and I have tearfully pleaded for the lives of other children at the clinic. But I haven’t prayed for my son. I know a few people that probably gasped reading that last sentence….please do not call me and try to bring me closer to Jesus.
Please do not misinterpret my lack of prayer as a lack of faith. It’s not. I believe that God is bigger than cancer, I believe that God’s love is perfect and never ending, and more than anything I believe that God has a plan for my life and that it is better than any story I could write for myself. I never would have imagined that plan would include my child having cancer, but it does and I trust his plan. Every time I begin to say that prayer my breath hitches in my chest and the words never come. Because I know that God could say no. He could say no, and I’m selfish and I want to see that amazing smile, hear his sweet giggles, and watch his curious eyes discover new things for the rest of my life. If I don’t ask God can’t say no, right?
I know that sounds a bit childish but I can’t think about the big picture, it’s scary and I think that is ok. God is a big boy and can handle my fear. And when I really think about it I know I don’t need to pray that prayer. He knows my heart and has been with me every step of the way. I can feel Him as I sit in an empty waiting room every morning while Holden has treatment. I can see how he prepared our family for this journey long before it started. And His love engulfs me as I pull out of the hospital parking garage every day, turning up the radio so Holden won’t hear me cry. He holds me and I hold Holden and I silently hope that I will always be able to.
Today was hard. I hated every minute of this morning! People are always saying how strong we are and it makes me want to roll my eyes and laugh. When your child has cancer you don’t have an option. You can’t curl up in a ball and cry because it’s too hard even though that is the thing you want to do more than anything.
We are in our final days of radiation treatments. I am so happy that Holden and I will no longer have to get up at 4am every morning I could cry. This has been the hardest phase of Holden’s treatment so far. The whole family is exhausted and burnt out. Holden is currently in a lot of pain, his skin purple and peeling and from the sounds of his cries, internally is probably just as bad. The worst part…I can’t do a thing about it! No matter how much I want to I can’t kiss it and make it better, take his pain away, or take his place. There is no explaining anesthesia to a 2 year old who wakes in the middle of the night thirsty, he just cries and asks why you are being mean to him. Sometimes he looks at me and his eyes ask me why I am allowing them to do this. It is heartbreaking and I feel helpless. Completely helpless.
“God will never give you more than you can handle.” “You’re such a strong person.” “Keep your chin up and everything will work out.”
In the past 2 weeks my husband and I have been told these things repeatedly. Not only is the phrase, “God will never give you more than you can handle”, not biblical, it is also devastating for someone who does indeed have more than they can handle. When a person you met 30 seconds prior, tells you your child has cancer, it will in fact, be more than you can handle. When you repeatedly have to hold down your screaming child while they poke him, it will be more than you can handle. When your child goes into surgery and you return to an empty, deafeningly silent hospital room, it will be more than you can handle. When they hand you a 3″ binder full of information on your child’s cancer, it will be too much. When your child wakes at night in pain and there is nothing you can do about it, your heart will break. When they tell you your child will not make it through the next 12 weeks without at least one blood transfusion you will feel the walls crushing you.
I am not strong. Piles of laundry have brought me to tears. I wake each day just thinking of the next step because that is all I can bear. Cancer is too big, too much, but driving to the hospital I can handle. Then walking into the hospital. Having his port accessed. Step by step until we get to the end of the day. And taking it step by step, I still sob when I go to the bathroom.
I won’t even address the third comment. Because everything might not work out and that thought alone IS more than I can handle.
God never said that we wouldn’t have more than we could handle. He did promise to walk with us and help us carry the load. I carry the next step, He carries cancer. Sometimes this brings me comfort and if I am being honest, sometimes it doesn’t. But I am clinging to that promise right now. I am weak, He is strong. I can’t handle cancer, but He can. Nothing, not even cancer, can separate us from His love.