No Magic Bullet

Ok, so I’m no Pollyanna.

I will wait for the gasping and fainting from shock to subside.

I tend to see the glass half empty and about to fall off the table, where it will crash to the floor in a spectacular display of What Gravity Does. I am a master at the art of defensive pessimism, a mastery born of getting epically catastrophic news rather too many times.

This doesn’t mean I have no hope. Hope really does spring eternal, even if it’s just a tiny kind of stunted looking sprout in the garden of yikes we tend here. But hope does live.



FALSE hope I have a huge problem with. False hope is like fake flowers in my garden.

                                            I don't think blue roses occur in nature. Yergh.

Ew.



This kind of builds on my last post (if I asked you to read this blog, it was for my Ode to Oncologists, please do read that…and feel free to read on, if you can stomach it). I suppose I should insert a GIANT OPINIONS ABOUT TO COME FORTH! Warning here….



A ginormous part of the reason we so trust our doctor is because she has never given us false hope. When things have been dire, she tells us. You have to be educated about the enemy you fight, and if things are grim I need to know so my spouse and I can choose the right weapons to fight. We know that the statistics of success with any chemo protocol are garbage. We know this, and no one ever promises us otherwise.



That said, we do have hope, because within our community we know kids who have found stability. For 5 years my second born WAS one of those kids. I have to hope we can get back there again. Today a spot of headache and dizziness have made that hope slippery…sigh.



Understandably, any parent in the spot we are in would LOVE promises of sunshine and wellness and sparkly rainbows. All of us would LOVE the magic bullet, the thing that will make all of this suffering go away. Heck, that’s why so many parents and family and friends of people battling awful illnesses work so hard for research dollars.

not this kind of magic bullet, we do have one of these for

all the healthy smoothies my kid refuses to drink.

 

(As a side note, there is a reason most anti-cancer/anti-NF efforts are geared towards treatments and less towards prevention. Imagine a house is on fire. Smoke! Flames! Alarms! Your first efforts of course are to rescue anyone inside and put out the blaze. While those flames are burning you may want to hold off on studying why the fire started and how to prevent future fires. You quench the flames FIRST. That is why research tends to have that treatment bias. As a parent searching for an extinguisher, I appreciate this. It’s really NOT a pharmaceutical conspiracy, I promise. There is a reason. ).



Unfotunately, there is no magic bullet.  (except the one above)



Yes, we can do things to be healthier, eat right, exercise, brush our teeth, floss, wear a seatbelt, wear sunblock, get enough sleep, find spiritual and emotional support. We can and should do these things…



But there is no magic recipe for healing. Sometimes it happens, sometimes it doesn’t. Some illnesses are more curable than others. That’s just the way it is.



From a religious standpoint (my lens here is both secular and religious), God promises us that He will give us the desires of our heart, He says He has a future full of hope for us…but He doesn’t exactly specify WHEN this stuff is going to happen. Religious texts (Bible and otherwise) are full of stories of people who generally had a really rotten time of things. The best, most faithful people got smote. Life happens, even to good people. Some of their stories truly don’t end well…but we believe that ultimately there is more beyond this life.



As friend to a lot of people who have lost their children, this hope is so critical, this hope that we will meet again somewhere where brain tumors and NF and cancer are not even memories.



God promises He will be with us, even mid-smitefest, even if it doesn’t feel like He is. Sometimes that means stable scans and a break from chemo. Sometimes that means having the chutzpah to go into chemo with a smile and an awful animal joke for your oncologist.



And my point is?



God does NOT promise that if we eat a certain way, or exercise a certain way, or buy a certain program, that we will be “doing His will!” and thus be preserved from illness. He does not say this. Ever.



Even if good looking and charismatic people say that He says this…He doesn’t. Within a variety of faith traditions, that’s pretty easy to check. He doesn’t.



Promising people cancer immunity if they cut out sugar and avoid traditional medicine and buy a particular (expensive) program of wellness because That is What God Wants…this makes me insane. It’s not true, and for people desperately wanting that magic bullet, people wanting to be faithful to a Judeo-Christian understanding of the world, this goes beyond marketing into cruel manipulation. Saying people who choose traditional medicine and leave the program die…unconscionable.



“Claiming” healing as part of a program may make you feel good, but I just have not EVER seen God be like “Oh! Phew! You loudly and publically CLAIMED healing, THAT will make all the difference, those quiet prayers were just too blasé. “ Actually, I can think of at least one or two times where God was like “hey, don’t make a big show of praying so people are like, Whoa, that is some hard core praying there.” “Claiming” healing should not become a commercial for a product or program. That is exploitive of the person who is sick, and again, just cruel. Really, really cruel.



And I should say, we have gone to healing services with my G, one with a very famous priest who has a healing ministry. I was so leery…and we got there, and he was the most unassuming man I’ve ever met. “I pray, and sometimes God sends healing,” he explained. No conditions, no “you have to DO THIS”, no guilt or rules or anything. Just a simple faith that hey, asking God for healing never hurts. And he took about 30 seconds and said a simple prayer with my G, quietly, so only we could hear, just asking for healing. And you know what? 6 months later she was sicker than she had ever been, but honestly, MOMMA had been healed of guilt and anger and hurt. I was able to help G, and cling to hope because that quiet, humble prayer so touched MY heart. Didn’t see THAT coming…



I don’t think God is looking for any kind of endorsement deal. He doesn’t need extra publicity or residuals from having His name appear on “wellness” programs.



We all just do the best we can. No one should feel guilty for doing the best they can. No parent of a kid with cancer or a brain tumor knowingly or unknowingly GAVE their child this illness. Implying that choices create cancer “95% of the time” holds a particularly vile form of guilt for parents who are already suffering. Using that guilt to sell something…



Sigh.



I think I have said my piece. My heart is so full every single day for our friends battling, for our friends mourning their lost children. My heart breaks when I think too much about the moment we are in right now. My heart shudders when I fish out the separate calendar I have (once again) just for medical stuff, or when my kid tells me her head feels “funny”.



That’s why I have to say this. And because the claims I mention were made very publically by someone who knows my children pretty closely, I do take it personally. How can you know us and say these things? What cognitive disconnect exists that allows these ideas to ferment in your mind?



But now I have said my piece, and I have to let it go for now, even though I know, despite my efforts, these words will likely never get where they need to go. Now I will go back to silliness, and I will write down the ill-advised tattoos thing in my head and Zen and the Art of Sparkly Rainbows. No more heavy stuff for a while.  Actually, we have some very exciting happy stuff happening in 2 weeks... : )  : ) 

the tattoo I saw that inspired the Blog in Waiting can not be reproduced in a family friendly manner, ahem.  So enjoy the sparkly rainbow.

Thank you to anyone who read this, and can hear it. I appreciate that. And I do pray for our friends every day…that God bring healing, and if not healing then grace for the moment.



You are all much in my heart.

What Not to Say: Holier than Thou Caution Point

WHAT NOT TO SAY: Holier than Thou Proceed With Caution Point

e. Not on the DON’T say list, but on the “say carefully” list : “Well, we will pray for a miracle! God can do a miracle!”

Miracles are AWESOME!

We have just come to realize that miracles are rare, and that God still loves us even if we don’t get one.

Miracles are tricky. Everyone hopes for the miracle for their child. We do. We see the statistics, we do the research, we hope, we pray, we dance by the light of the full moon, we do whatever it takes for a miracle. And we have SEEN miracles in our friends, and we rejoice in each one. But sometimes miracles are not The Way We Would Like them to Be. And sometimes, saying over and over that “we’re praying for a miracle”…well, it’s demoralizing to the parents who have come to the realization that this doesn’t seem to be the way things are going to work out. When it becomes obvious that this isn’t going to happen, saying it just makes things worse. Pray for us, pray for our treatments, pray that things get better, even PRAY for a miracle, but just be careful how you announce that intention.

I don’t want to miss the moment God has given us by wishing so super hard for a moment that maybe isn’t meant to be.

I know there are folks who will disagree with me on this, but here’s how I see it:

My child has pretty massive, diffuse, multi-focal brain tumors. Those tumors have NEVER gotten any smaller. Through 3 chemos in Chemo 1, and now onto Chemo Redux (aka 5 years later/protocol 4), no tumors have ever shrunk. On any given day I know we have several hundred people praying for us (which is very humbling). G has received our faith’s “Anointing of the Sick” at least once, if not more (funny side note, she just now, as I was typing, asked me about that. Weird.) Are the prayers NOT working?

Well, my kid goes to school every day. She takes a Modern Dance class. She loves American Idol and cookbooks and Scrabble and anything animal print. To look at her you would NEVER know that she has massive brain tumors. Her life EVERY DAY is a miracle, I’d say.

We’ve had some other miracles, too. Just not the big “tumor be gone” miracle that we hoped for. And you know, it took a lot of years, but I have accepted that. I may not be all woohoo about it, but I have accepted it. We’re in a marathon, and as long as we get to keep running, we’re good. That acceptance was something of a miracle for me.

It’s that moment when finally we realized that a stable scan was good. Better than good. Miraculous. It only takes one scan with significant tumor growth to remind you of the joys of stable.

Kind of like a song from Fiddler on the Roof…, “Wonder of wonder/ miracle of miracles! God took a Daniel once again! Stood by his side and miracle of miracles: Brought him through the lions’ den!”

The lions didn’t go away, or poof into the night. But they kept their hungry mouths shut. Miracle!

Our miracles include

1) me realizing that G was not being cosmically punished by God because I was so horrible. This one took over a year to get to, and when it finally happened, it was pretty miraculous. That is also why I get psycho about ANYTHING that makes parents think their child’s tumor is the parent’s fault. The agony of that is indescribable. I still have flashbacks (walking into the atrium of the main hospital on the most recent scan day and hearing the Gong/ding/pop of the fun interactive sculpture thing they had gave me a moment of “breathe!”…the PICU used to overlook the atrium, and our first night at the hospital, waiting for brain surgery, that sound, that happy gong/ding/pop kept going all night long while I sobbed and asked God why had he punished my child and not me…but again, I digress). Getting past that moment was a miracle. Strangely enough, I got to that moment after bringing G to a special Healing Mass thing. Hm. And then G's condition imploded...see point 2. ?But I understood, miraculously, that our dire circumstances were NOT a cosmic smite.

2) Having G confound the doctors in 2006 when it looked like things in our universe of yikes had just taken a frantic downward spiral in which the future was measured in months not years.

3) Giving back the Braille writer because my kid was cheating by looking at the dots to figure out the letters. Yeah. My kid was using her eyes to CHEAT AT BRAILLE. That was a miracle.

4) Watching G “dance” in the Nutcracker 3DAYS after shunt revision in December, her 3 inch incision covered by her curls (our neurosurgeon is a magician!) . Miracle miracle miracle.

5) Starting a phase II clinical trial of a drug that wasn’t invented when G did chemo before. Miracle.

So we’ve had some miracles, things that were life changing and unexpected and huge. But we’ve had to CHANGE our definition of what a miracle is. And, more importantly, we’ve had to help G change HER definition. As she is older now, she gets the YIKES in a way she did not in first grade. She fears scans. She worries about missing school. When she knew she had to start chemo again, she whispered, through tears, “will I lose my hair?” I can’t carry the scary for her anymore.

Occasionally someone will say something to G about a special prayer or moment that Is So Amazing, , If we only go here, or do this or do that, she will get better. Or someone will tell her if she gets whatever relic/picture/sparkle Mary/religious object THAT can heal her.

This, to me, verges on What Not To Say, because while G understands the yikes now, she does not necessarily understand the nuances of religious objects and how they can help us focus on GOD, not on some perceived power the OBJECT has. God has power. Tchotchke, not so much.

Except the Perler Beads that seem to be taking over EVERY INCH of my kitchen, thanks to my industrious 9 year old who has an almost religious zeal in spreading those plastic beads EVERYWHERE. hm.


Some of this approach is just part of one version of our faith tradition, and I know it is generally said in love and hope. I love religious shrines, I find them peaceful, hopeful places. Some people do find miracles there. We have not. I know God can heal Genna here at home, or at CHOP, or in the middle of the deep blue sea. But even if He doesn’t, He does not love her less. .

So promises of healing or imminent miracles “if only you believe enough” go on the Don’t Say it List. We don’t need to test God’s love. We are sure of it. My kid believes God loves her. She LOVES to have people pray with her. For all my aversion to being The Center of a Holy Moment, G LOVES it. She really does. So I won’t get in the way of that. And she LOVES religious tchotchke. Who am I kidding, I find a glitter Jesus to be a kind of religious pop art that appeals to me in a purely humorous way. And I think God has a sense of humor (have you SEEN my childrens’ hair?). So that’s cool.

But please don’t promise my kid things only God can deliver, or imply if we just do the Right Holy Thing, voila…miracle!

Sigh.

Now, back to your regularly scheduled programming…next up, Normalcy is Not a 4 Letter Word.

What Not To Say: I Thank God Almighty That I'm Holier Than Thou

The Post I have Hesitated to Post…

Previously, on What Not to Say…

So I had a block of time last Thursday to just sit and think, in between snippets of Adele and the jackhammer like sounds of a Siemens Magnetom, and I realized that there might be a niche market for a new show called “What Not To Say!” A couple of my fabulous sisters will swoop in on unsuspecting people who say ABSOLUTELY THE WRONG THINGS when dealing with catastrophe. They would burst in unannounced, surprising the miscreant mis-speaker, and take them on a whirlwind training of WHAT NOT TO SAY. At the end, the reformed guest will be better prepared for the next challenging conversation with someone who is being smote.

This episode is a tough one. I should say up front, I am devout within my faith tradition (Roman Catholic). So I speak from love, really.

WHAT NOT TO SAY #3: “I thank God Almighty That I’m Holier Than Thou!

This episode is tricky. Certainly the “God doesn’t give you more than you can handle” can fit under this heading. We have relied on our faith to get us through catastrophe, and obviously this particular point will be different for people with varying ideas about God and the cosmos.
But perkily saying things like,

a. “I have a special needs child (not life threatening), and I just told God, I know you may want him back someday, and I am ok with that, if you want him back he is YOUR child, I am only given him to take care of for a little while!”

…well, I think I actually said, “I am not ok with that. I want to keep my child, thank you.” I almost snapped and said “Oh no you didn’t!”, but I refrained. Barely.

Look, dealing with catastrophe is so personal. If you deal with a challenging but not catastrophic event with the attitude I just outlined above, kudos to you for achieving such a high level of spiritual maturity. But that might not be a helpful gem to share with a parent fighting pretty desperately TODAY to KEEP THEIR KID HERE WITH THEM. HERE. ON THIS PLANET.

We believe in Heaven here. We regularly pray to all of our friends up there, especially those who meant so much to us early in our brain tumor journey, friends who battled cancer or brain tumors who did not survive. The night before G started chemo this time around I imagined calling all of our Heaven friends together…Nora, Marge, Sandra, young Nora, Hadley, Timmy, Dani-Ella, Emma, James, Joe, all the Grandmas & Grandpas…I called them all, and they came together in a big room in my mind, and I spelled out the game plan…they needed to bug God every day for this blasted chemo to work. We would hit the tumors with everything known to science on this end, and they needed to pull for G on their end…G knows she has a team on the other side of the field, and that helps her. I could really see this in my head, and it helped ME.

We believe we will all meet again. But super-spiritual reflection about “I’ll give my child back to God freely!” from someone not in the battle doesn’t come across as shared wisdom, but rather as condescending spiritual one-upsmanship .

We may need to come to ACCEPT that reality some day. Just not today.

I have heard other brain tumor parents share their acceptance of their child’s imminent death in a way that is heartbreaking and full of dignity. This is different than someone whose child IS NOT in that moment saying “I’m ok with God taking my child”. It’s easy to say that when He shows no sign of doing such a thing. Theoretical acceptance is Very, very different than the mightiness needed to gently lay down the sword and hold your child as they step into Heaven.

To my brain tumor and NF family who have had to live this mightiness, my heart is with you.

b. “Well, this is God’s will for you…” or “God’s will be done”…

Yeah. I guess that is supposed to be comforting? Or that in saying this is what God wants, we are supposed to be ok with it? I am not ever sure what the thought process is behind this statement. Maybe it’s just a way for the speaker to a) make the utter unreasonableness of catastrophe seem logical or b) once again emotionally separate themselves from the pain of the other person’s moment. I really don’t know. But it isn’t helpful.

When G was first diagnosed, we had a week in which a) I found out she was going blind—like, truly blind, she had been compensating so well, and we had so many other chemo related issues then, we didn’t know b) something I treasured was lost c) our patio table got smashed in a storm. This was in between miserable treks to a hospital in another state every week…and G coming into my room every night at 3 a.m. just feeling sick…That table breaking WAS the straw that broke this maternal camel’s back. As I cleaned up broken shards of tempered glass from my patio, I burst into a song I composed for the occasion entitled “God Really Hates Me”. It had a catchy tune…

Ok, so I needed more than a little help at that point. I think God helps us through tough stuff, I don’t so much think His Joystick Really Does Get Stuck On Smite (yes, another Top 40 Hit of that particular season of my life).

Saying that catastrophe is God’s will for someone is kind of like singing the refrain to God Really Hates Me, but filling in YOU for Me. At least that’s how it comes across. Even Jesus had trouble with God’s will right at the end of His life. Did He do what He had to do? Yup. Did He pray “please God take this cup away from me?” Um, also yup. So if JESUS had to struggle with this idea….I figure parents struggling with this are in good company.

Whatever your beliefs about how God works, the “this is God’s will for you” doesn’t help people mid-crisis. Really. Unless you actually saw a heavenly finger writing those words on a wall, don’t say it. And even then…yeah. Please don’t say it. God’s will for someone else isn’t really ours to say.

Thanks to Christine Dalessio over at http://feminismthecatholicfword.blogspot.com for reminding me of this last one. I think I had blocked that one out!

c. I should add, too, from my friend Blythanne, that God may in fact “open a window when He closes a door”, but unless you are a nun singing to the Alps in a classic Hollywood film, OR you actually are sitting on the windowsill, maybe this should be a statement to avoid as well. Folks mid-crisis are not willfully ignoring God’s way out…and telling us the window will come is just insanely frustrating. Maybe it is supposed to be encouraging. But it is just insane frustration wrapped in a cliché.

What TO Say: Like before, “We’re praying for you”. That’s enough.

I know in really, really hard times, I have no words for prayer, and I deeply appreciate my friends and even strangers who pray for us. That’s a language that is never wrong, no matter the differences in dialect or vocabulary.
Or, if saying anything seems wrong, just send a card that says you are praying or just thinking of the person. One of the most beautiful things we ever received was a card that told us someone had arranged for a healing mass to be said for G at a special Catholic shrine…and that person was one of Dave’s coworkers, a lovely gentleman…who happens to be Jewish. We were so moved by that, the effort he must have gone to to figure out HOW one arranges a Mass…at a shrine…in another country…

With no words, he helped us along the path.

And….the worst thing ever said in the name of religion to parents mid-catastrophe: (and this is NOT something we have experienced, but I have friends who have endured this horror),

d. And I will simply answer it without speaking it. Kids don’t get sick because their parents are bad. Period. God doesn’t punish people by making their children sick. A child with a catastrophic illness is not a rebuke for parental sins. Yes. I do know people who have been told this about their children. Really.

To those who say those kinds of things: read your freaking Bible. The New Testament parts (ie the more “recent” chapters). The ones where He actually said things like “hey, this person wasn’t born blind because of the sins of the parents”. …I mean REALLY.

And I know, honestly, that I’m preaching to the proverbial choir here, NOBODY who reads this blog has ever done that. I am confident of that. But it merits saying, if only because of my friends who have had to suffer those hateful words. And if you want to share this…be my guest.

Sigh. Those are my thoughts about What Not To Say : Holy Edition . And thank you to all of those people who do pray so faithfully each day for my G. We are grateful. And I’ve stopped singing “God Really Hates Me”, so there has been SOME kind of healing here, right?