Miracles Remix

Miracles Remix

Today’s Gospel at our Church was the story of Jesus healing the blind man—this story always grossed me out a little (spit and mud? Ew), but at the same time moved me, especially once I had a child who was going blind day by day in front of me.  As the deacon spoke during his homily today, my mind wandered back to when G’s vision was failing at a rapid pace.  Back then, if Jesus had offered some spit and mud for G’s eyes, we would have added that to the chemo regimen and showed the Pharisees some Jersey style onco-mom attitude if they had a problem with G getting healed on the Sabbath.

You wanna piece of ME?

Obviously, that did not happen.

But still—G’s vision improved. We aren’t sure why. Anecdotally, I think it had to do with changing chemos. Her tumors never got smaller after that first chemo fail, or the second chemo fail, or the third chemo stability/bone marrow burn out.  But her vision improved.

We gave BACK the Brailler.

A Brailler. G used to cheat and look at the dots to read things.

The only time I ever celebrated cheating. ;)

That was a miracle.

It wasn’t the miracle we prayed for. It wasn’t a clear cut miracle of complete healing or woohoo. But the day G told me she could see stars… “ you know, those tiny white things!”…that was a miracle.

She still has no peripheral vision in any direction. Her left eye still is weak (to her sense, she can’t see out of it, but she actually can). Within a narrow field of her right eye, she is correctable to 20/30. That is a miracle, based on the “counting fingers” report of 2004.

Making peace with miracles remixed is an ongoing work.  We’ve had other Miracle Remix kinds of days—March of ’06, when we found out the weird tumor thing G had going on after 18 months of chemo had NOT become stage four gliomatosis cerebri (a game changer, prognosis wise). We got to restart chemo #3. That was a miracle. The next 6 months AFTER that miracle day were brutal (Transfusionfest 2006, neutropenia-induced hospitalization, allergy to one of the chemo drugs), but it WAS a miracle.

My girls, with neurosurgeon Dr. Storm (the only guy

allowed in G's brain) and Research

genius Dr. Resnick(and his daughter), at Camp Sunshine.

Miracle Monday, 2012 – the day we found out the Avastin/Irinotecan/Temodar mix had dramatically reduced the tumor mass that had explosive growth while G was on the clinical trial.  I literally almost unraveled that day. That was a LEGIT miracle, we had never seen that kind of shrinkage EVER. We got to do nearly another year of that chemo, and it kept working (and has continued, after the fact to keep G’s tumors stable). Miracles.

Scientific progress—miraculous. Inspired. Fought for. I will take any kind of miracle that comes, even if it is ultimately in IV form in a day hospital, or in the skilled hands of a neurosurgeon. 

For me, one miracle--being able to talk to God again without using colorful language. And I don't mean red, orange, yellow, green, blue, purple. Or chartreuse. THAT was a different kind of healing miracle. Not the one I prayed for, but a gift that helped me keep on going in the face of extreme medical yikes back in '05 and '06.

yeah, not so much. I had no issue with

Jesus, just God. This is why I don't teach theology.

That guy with the muddy and healed eyeballs? He was grateful.

I am grateful.

Not going to lie, I would be totally cool with the complete healing kind of miracle. That just isn’t the kind we are going to get, and I have made peace with that, really.

But I do wonder, some days, if I am doing enough with the miracle of time we have been given.  Having more time is truly the greatest miracle of all.

As I type this, G is pondering what classes she should take at Community College (“Mom, what is “Aperture in Photography?”).

Time is the greatest miracle.

I don’t want to waste it.

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.