Jul 022012
 

Well. That certainly turned out to be the right thing to do- telling you guys about my struggles with Lyme and parasites and indecision.

I don’t know how prayer works. To tell you the REAL truthiest truth, I only believe a teeny part of the time that it works at all. Usually I think, WHILE I AM PRAYING- what the hell good is this going to do??? Which I’m sure God can’t hear. He can only hear my silent voice that is praying, not my OTHER silent voice that is mocking my own prayers. Thank God, he can’t hear that second voice. That would be awkward.

There is this scripture that says if you BELIEVE while you pray, your prayer will be answered. If you don’t, it won’t. Not a fan of that scripture. Still, I pray sometimes, and I know that with God, a teeny tiny iota of belief is enough. Faith as tiny as a mustard seed, He says, can move mountains. Last year I bought a bottle of Mustard Seed (now the ONLY spice in this house besides ketchup, which Craig says definitely doesn’t count because apparently he has joined some sort of Spice Verification Committee.) You should see how small these mustard seeds are. Like grains of sand. I Googled mustard seeds and found out first that mustard seeds are mentioned not only in the New Testament but also in Jewish, Hindu and Buddhist texts. And that when those teeny tiny mustard seeds are planted, they each grow six feet tall and tend to grow towards each other, creating a golden canopy. Comforting and protective, canopies.  Maybe faith is eventually a golden canopy? After it has plenty of time to grow?

Also comforting- the letters and emails and comments and silent prayers I’ve received from my monks during the past week. I can’t tell you how much they help me. I read every single last one, from the Hi G! beginnings to the Love, Your Monkee endings. I soak them in, read them to Craig and Sister and each one makes me a little stronger and more hopeful and AMAZED at the way that we human beings, with God, are able to turn suffering into triumph, beauty and HOPE to pass on the next sufferer. Thank you. Thank you from my whole family.

Now. Do you remember Mindy? Not the Mindy to whom we just gave a van, but Mindy of “Mindy Monday?” Mindy who was going into chemo and so we all dedicated a day of acts of kindness to her?

Last week, I received letters from both Mindy and her angel chemo sister, Megan. I am going to share Megan’s letter today and Mindy’s on Wednesday. When Megan or Mindy write the word “you,” they are referring to all of us who come here and believe in love and the power of the written, encouraging word. I hope they bring you as much hope and fire and awe that they brought me. I hope they encourage you to keep showing up for yourself, your family, your friends and fellow Monkees. That’s all we can do, and that’s ENOUGH. Miracles happen every day. They will happen TODAY. THIS is the day. Let us be glad and have eyes to see the tiny miracles all around us.

Dear Glennon -

My name is Megan and I’m 38 today. I’m a married mother of two and I live in Phoenix.

 I became a Monkee some months ago, thanks to Mindy (yes, Mindy Green, of your “Mindy Monday” movement some months back.) You see, Mindy and I met having chemo together last December. We share a wonderful oncologist in Phoenix. She was diagnosed with Breast Cancer and I was diagnosed with Hodgkin’s Lymphoma just a few weeks apart, in November. She’s 34 and I was 37. Most of our doctor’s patients were far older than us. Most cancer patients in general are far older than us. He, being the amazing man that he is, knew how alone each of us young(ish) mothers would feel in that chemo infusion room. So he arranged for us to have chemo on the same day and time each week, and asked me on my second visit for chemo to sit in the room with Mindy, who was there for her first treatment. I happily obliged.

Mindy and I chatted every other Wednesday while we had chemo together. We talked about our hair loss (we are both fiesty redheads! She, of the auburn variety and me of the strawberry blond). We talked about our kids–hers, the incomparably adorable Lana, age 2, and my son Jonah, 11, and daughter Dyllan, 9. We talked about work (she’s a pediatrician, I’m a writer and communications exec.) We found one another on Facebook so we could keep in touch between treatments, and she helped me tell all my Facebook friends about my situation, as I’d been hiding it for months. Opening up and letting others love me through this thing was enormously healing. I don’t think I would have done that without Mindy’s encouragement. I used to be so private about health information. Really, I was private about revealing anything that I considered a weakness. Mindy helped me change that.

We exchanged email addresses and phone numbers and over the course of our six-months of chemo, became as close as lifelong best friends. We confided everything in one another. We cried together. We laughed together. We emailed each other late at night, when cancer is the scariest and you believe the treatments may actually kill you, and that no one on this earth understands.

The truth is your husband and parents and kids and friends can do their very, very best to love you through cancer, and ours did. But you still feel terribly alone. Only YOU have it. Only YOU had to endure the horrific treatments. Only YOUR life hangs in the balance. Only YOU worry you won’t get to see your babies grow up, that you may not get to fix your baby girl’s veil on her wedding day or see your son become a father. And only a mother’s heart can hurt that badly over those thoughts.

And when you get this horrible disease at an age when none of your peers has it, you feel even more alone. Isolated. Selected and punished. Forsaken.

So having someone your age to turn to, someone to fight the good fight with, someone who truly, totally gets every side of this bullshit situation, they become a lifeline. And that’s what Mindy and I became for each other. We traded books and we had long talks. After Mindy’s mastectomy in February, our chemo schedules were off. We no longer had it the same day. So we started showing up for one another’s treatment, just to sit and talk and be there for each other.  

Mindy introduced me to Momastery about halfway through chemo. She told me all about Mindy Monday, how she poured her heart out to you and how all the Monkees did a random act of kindness that day in her honor. I logged on and read nearly all of your blog posts going back years. I laughed and cried and felt a kinship and a hopefulness that I had not felt in months when I read your words.  

Mindy and I talked about you and Momastery during chemo all the time. With our silk scarves tied on our bald heads, total lack of eyebrows and eyelashes and feeling robbed and exposed and sick and so tired, we talked about how the place you’ve created is a preview of heaven. That was Mindy’s gem, that one. I totally agreed.

I mean it from the very bottom of my very full heart when I tell you Momastery helped us heal, Mindy and me. Your mantra, “We Can Do Hard Things,” has sustained us through this mess. Your words, your belief that love wins, your acceptance of life as “brutiful,” well it empowered us beyond belief. You just have no idea.

Mindy and I both gave to the Love Flash Mob for the vans. It felt amazing to do something small and watch the Love Revolution take over. It restored us both in ways that can’t be told in words.

We both got clean PET scans in late May, praise God. That means we had a complete response to chemo. We both needed radiation, her for longer than me, to ensure every last teeny tiny cell gets killed and this monster doesn’t come back for us one day. Radiation is cruel and harsh in entirely different ways than chemo, and we’ve exchange photos of our burned skin and stories of not being able to swallow solid food.

But we’re still standing. We’re still here. We did not lay down and let this thing take us. We have babies to raise. We decided early on that this is NOT how our stories end.

Yesterday, I finished my radiation. So today, my birthday, is a re-birthday. It’s my first day of my post-cancer life. I survived this year, this shocking, maddening, surprising, painful, brutal, blessed year. At some points I just didn’t think this day would ever come. I have you to thank, in part, for seeing me through it, even though you didn’t know you were.

And Mindy, well she and her husband and baby girl moved to Portland a few weeks back. I miss her terribly, but we have phones and Facebook and so we are still tethered. We will always be tethered–by cancer, by healing, by Momastery.

Thank you for what you’ve done for us.

Sincerely,
Megan

Jul 042012
 

After Megan wrote to me . . . I responded like this:

Dearest Megan.   What a thing to receive on a sick day. WHAT a thing. JUST the thing. You have offered me such a gift.  When you were really sick, did you get that panicky feeling, that JUST at the time you should be making the most of every moment (because what if your moments were more limited than most) you couldn’t at all? All you could do was hate all the moments really really much tons? And that made you even more panicky and guilty and sad?   That’s how I felt today, and then you offered me this beautiful gift . . . and I feel like maybe I AM making the most of my moments. Even from bed. And THAT, MEGAN, IS AMAZING TO ME.  Thank you. THANK YOU AND bless your beautiful strawberry blonde head. Keep writing to me about your brutiful life. And kiss Mindy for me.  We really can do hard things can’t we?  LOVE.  G

Later that afternoon, I received this letter, from THE Mindy, of Mindy Monday.

Dear Glennon,  

My special friend and chemo-sabe Megan wrote you 2 days ago, and I gather it was a needed encouragement to your heart. 

Oh sister- friend, I have been there.  I am still there.  

There is a memoir book Megan and I both read through chemotherapy-  He Leadeth Me- by Walter Ciszek.  He was a Jesuit priest who felt called to go into Russia during WWII.  He was discovered, captured, and spent the next 23 years in prison or work camps.  He writes extensively about knowing God’s will, and he comes to the simple truth that God’s will for our life is exactly what he has given to us for that day.  He also speaks plenty about suffering.  It is a good book to read when one finds herself suddenly getting injected by poison every week which is why Megan gave it to me.  

“We come to expect God to accept our understanding of what his will ought to be and to help us fulfill that, instead of learning to see and accept his will in the real situations in which he places us daily. …The plain and simple truth is that his will is that he actually wills to send us each day, in the way of circumstances, places, people and problems. The trick is to learn to see that- not just in theory, or not just occasionally in a flash of insight granted by God’s grace, but every day.  Each of us has no need to wonder about what God’s will must be for us; his will for us is clearly revealed in every situation of every day….The temptation is to overlook these things as God’s will. The temptation is to look beyond these things, precisely because they are so constant, so petty, so humdrum and routine, and to seek to discover instead some other and nobler “will of God” in the abstract that better fits our notion of what his will should be.[It is] the temptation faced by everyone who suddenly discovers that life is not what he expected it to be. The answer lies in understanding that it is these things- and these things alone, here and now, at this moment- that truly constitutes the will of God. The challenge lies in learning to accept this truth and act upon it, every moment of every day.”

I do not want to be preachy, at all, but I do want you to know that you are PRECISELY where God wants you to be at this moment. NONE of your moments are in vain.  All are for his purpose.  “For just as surely as man begins to trust his abilities, so surely has he taken the first step on the road to ultimate failure. And the greatest grace God can give such a man is to send him a trial he cannot bear with his own powers–and thus sustain him with his grace so he may endure to the end and be saved.”

Being sick, having cancer, dealing with my mortality, the limitations of my body, and even feeling betrayed by my body were not things I thought I would deal with when I was 34.  However, we don’t get to choose our path, we just get to choose how we walk our path.  I choose God.  I choose walking his path with obedience every time, because I know how faithful he is.    

My mantra when I started to doubt or have fear was:

Either God is love…or he isn’t.

Either God is in control….or he isn’t.

Either God is trustworthy….or he isn’t.

Either God redeems….or he doesn’t.  

The scary thing about breast cancer is if you are stage 4, ie cancer has spread to any place outside your breast, you are no longer curable. The survival rates plummet.  So, the night before my PET scan I was trying to be ok with whatever God gave me, but I couldn’t pray “I am OK with metastatic cancer.”  I could pray, with total sincerity, “not my will, but yours be done.” 

Glennon, never doubt, please, that you are not precisely where God wants you to be.  I don’t have any good answer for why you have Lyme disease and Alejandro, and why you feel SO bad.  But, I do know that the revolution, the movement you have started is real and true and speaks to all different types of people about God, and his love, and healing our world by demonstrating the love God first gave to us.  And if nothing else, this love revolution is straight from the heart of God.  And, for some reason, there are times that he allows you to feel bad and to take to your bed. Perhaps it is just that you are so honest and that you share your struggles and physical difficulties and one other Monkee out there feels heard and less alone? How amazing is it that we have a God that can take our horrible, broken, suffering, and transform and redeem those moments into beautiful stories?

Sister, you gave Megan and I such hope in such a difficult time of our lives.  When I wrote you the first time I was DESPERATE for a connection to someone to tell me “YOU ARE OK.  GOD HAS THIS.”  And YOU, Glennon did that.  I cannot thank you or love you enough for being God’s instrument of love and blessing in my life during that time.  Truly, I am crying thinking of that point in my life and how you reached out to me.  Bless you! Love, Mindy

I remember the day Mindy wrote to me. I was in bed. Craig had taken the girls to the library. I was too weak and tired to go. I got Mindy’s email about entering chemo and needing some love. And I wrote back and went to sleep. And at the time, on that day- all I could think was –what a wasted day.  I am a waste of space. I am wasting my days.

Hah.

Let His will be done, today, through us, in whatever pathetic physical, mental, emotional, financial state we find ourselves this morning. Amen.

And for my Non Goddy Lovies whom I love so very, very much and whom I NEVER want to feel excluded from the party because of the Goddy talk….as I read Mindy’s letter, one of my favorite poems came to mind. I think it’s a decent translation of Mindy’s message.

Desiderata

Go placidly amidst the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.

Avoid loud and aggressive persons, they are vexatious to the spirit. If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.

Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul. With all its shams, drudgery, and broken dreams, it is still a beautiful world. Be cheerful.

Strive to be happy.

-Max Ehrmann

We are in this together, sisters and brothers. Love Wins. THIS IS THE DAY. START FROM WHERE YOU STAND. OR KNEEL. OR LIE.

LOVE AND HOPE AND SUCCESS IN THE LITTLE ITTY BITTY THINGS WE CAN DO ARE THE TRUTH. YOURS FOREVER- G

My kitchen.

Jul 072012
 

During my first ultrasound with Chase, the whole family surrounded me on the exam table. Craig held my sweaty hand and Bubba and Tisha stood at my head. The dark room was very, very quiet. The ultrasound technician, who had been bubbly upon our arrival, turned stoic and rigid while she took pictures of my baby. What’s wrong? What’s wrong? WHAT’S WRONG? I repeated.

There are a few issues, she said. Sit tight. I’ll be back with the doctor in a moment.

We all stood silently. Helpless. Waiting for The News.

I thought the doctor would come back and tell me my baby was going to die. I looked at no one, not Craig, not my mom, not Bubba. I stared and willed the little thing on the screen to LIVE.

The doctor came in, brows furrowed and silent. I felt like he was mad at me. Or my baby. Or both of us, for causing whatever sort of trouble we were already causing.  Right away, I wanted to tell him to kiss both of our asses.

He began: The problems here are his brain and his heart. He’s a boy. You have a boy.

A boy. I have a boy.

And Oh! Just his brain and his HEART, you say? Thank God. How’s his left toe? That look okay, doc?

He has a large cyst on his brain, and a bright spot, called an echogenic focus, on his heart. His neck is also measuring thicker than is typical.

Bubba left the room. We all thought that next, the doctor would tell us it was over. His neck. His brain. His heart.

The doctor spent another ten silent minutes scrutinizing my boy. I spent those minutes scrutinizing the doctor. I really didn’t like the looks of him.

He asked me to get dressed and told me he’d be back in few minutes.

Please make it one minute, I said. I dress fast.

He came back in a few minutes. I steeled my heart.

He said, “Any of these three – the cyst, the bright spot, the neck measurements –  any of them on their own are markers for Down Syndrome. Together, they lead us to believe that your child very likely has Down Syndrome.  Since you decided against the triple screen test, we won’t know for sure without an amnio. You’ll have ultrasounds every two weeks from now on so we can watch his progress.”

My family – we smiled at each other. We breathed one collective, THANK YOU, JESUS breath. Our baby was not going to die. Our baby was going to have Down Syndrome.

Down Syndrome. Of course, I thought. Of course.

I am love-struck by babies and children with Down Syndrome. Always have been – since my sister and I volunteered with Bubba at the Special Olympics in elementary school and I witnessed their ridiculous determination, joy, and kindness. Other worldly, I always thought. Other worldly. Then when I started teaching, I met a little one named Kerry who made all of her teachers wonder what the hell was wrong with everyone else.  Her determination and joy inspired me to try harder and look harder. I became confused about why I wasn’t more joyful when there was clearly so much to be joyful about.

The first time we went to our new church here in Ashburn, we felt nervous. But as soon as we walked in the door, a twelve year old lovie in a hot pink/animal print dress with black ballet shoes walked right up to me, held out her hand, looked me directly in the eye and said, “Are you new? Welcome to my church. I’m Lucy. You will love it here.” Then she took me by my hand and didn’t let go until we were comfortable and seated, right up front.

There is a lot to DO at a church, and folks are busy. Not Lucy. Lucy of the hot pink dress and ballet slippers and Down Syndrome. Lucy was looking. Lucy noticed the folks who needed noticing. Lucy knows what church is about.

Lucy stands right up front during church and when the band plays, Lucy dances and sings. Not like you or I dance and sing, a little wiggle, not enough movement to cause a stir. Lucy dances like one who is actually WORSHIPPING an all loving God and father might dance for him. Without inhibition, without fear, without insecurity. With joy and passion and abandon that makes me wonder what she knows that I don’t know. Instead of watching the band, I watch Lucy, and that has become one of the most inspirational parts of church for me. Watching Lucy dance.

When they told us our boy had Down Syndrome, relief rained down on me like a summer shower that arrives out of nowhere and breaks the heat.

Of course my baby has Down Syndrome, I thought to myself. It makes sense.

Because I’m special.

Now here’s the truth- and it’s funny because I’d NEVER say this out loud to anyone, but I’ll write it to thousands of people. No matter what happens to me- secretly I believe it’s because I’m special. Special needs baby- YEP- I’m special! Lyme Disease? Well, sure. I’m special. Book deal? Well – duh- special. More diseases?? Is there no end to my special-ness?

CLEARLY- this is a ridiculous, ego-maniacal way to live but I can’t imagine making it through life any other way. I stand by my approach.

And so Craig and I prepared for a baby with Down Syndrome. We rejected the amniocentesis because we were scared it might hurt our boy. We read and read and read. Well, I read and read and read and told Craig the important parts. We interviewed pediatricians that we knew were good with babies who had Down Syndrome and chose the one who stopped us during our interview and said, “You know, I don’t have a single family who wouldn’t tell you that their child with Down Syndrome changed their family in the best possible ways. These children, they turn your life upside down in all the most important ways. And most of us don’t get life changing opportunities like that. There are challenges -yes- but those challenges will shrink compared to the enormity of the new life you’ll have. The new perspective you’ll have. You are a lucky couple.”

Lucky is one word to use. SPECIAL is another.

I went into labor one night at ten and started screaming for drugs upon the first contraction. Then I took a shower, applied my makeup and blew my hair dry. Then I straightened it and curled it. I wanted to be pretty when Chase saw me for the first time. I continued to scream for drugs while primping and throughout the entire car ride to the hospital. When we walked through the doors of the hospital I lied down on the filthy floor and said I wasn’t moving until they brought a wheelchair and an epidural. Craig looked at the receptionist and shrugged his shoulders. “She’s been like this the whole time,” he said. “The whole night?” The lady asked. “No, the whole pregnancy,” Craig said.

I don’t believe in suffering silently.

They wheeled me away and gave me the epidural. I was lovely after that, just a lovely patient really.

Quickly, everything became a blur. My mom and dad slipped in and out of the room. Sister ran in with my black boots with red laces. There was pushing.  Lots of extra nurses around. Then a whole bunch of pressure and a whooooosh and my doctor was holding a chubby bluish man. The nurses swept him away. I was terrified. Why isn’t he crying? WHY ISNT HE CRYING? He started to cry. I did, too. They put him in my arms.  My baby was alive. I was holding my baby. I looked at him and I loved him.  I understood him to have Down Syndrome. I knew to look for slanted eyes, pinned down ears and an extra thick neck. Chase had all three. He was beautiful.  I held him and nursed him and cried and laughed and couldn’t believe any of it was really happening.

My mother in law, a nurse, came into the room and I passed him to her. She looked at him carefully and I watched her flip him over to look at his neck. “He has Down Syndrome, right?” I asked. “I don’t know,” she said.

An hour later the pediatrician arrived. It wasn’t OUR pediatrician, who knew everything about us, it was the on-call doctor from the practice and it was clear that he hadn’t read our file. He swept Chase away and told us he’d check him over and be right back.

I didn’t like that he took my baby away. Not at all. I told Craig to go with him. Go with him, I said. I was advocating. Right away. I’d read all about it.

Craig and the doctor came back. The doctor placed Chase in my arms and said something about good hearing and eyes and then said, “He’s perfectly healthy. Congratulations, mom. We’ll see you in the office in a few days.”

I was confused. As the doctor was leaving the room, I called after him. “Excuse me,” I said.  “Does Chase have Down Syndrome?”

The doctor turned around and looked at me quizzically. “No, ma’am. He does not have Down Syndrome. I usually lead with that.”

I felt that summer rain of relief and also that pit in my stomach that signifies loss. I did not get the baby I was expecting. It’s strange to mentally and emotionally replace the baby you expected for the one you are holding.

Ten years later, I still wonder, what was all that about? 

I felt like telling this story today because children with Down Syndrome have been on my mind and in my heart for a long, long while.  When we are out and we see a family with a child with Down Syndrome I stare a little, and Craig gets annoyed. I can’t help it.  I know that these kiddos have something important to teach the rest of us. We who are so busy getting important things done and they who seem to know for certain what really is important and what is not.  I think they are Little Teachers, if we have eyes to see and time to wait.

Anyway- what do I know?  Not much.

But if there are any Monkees out there who have children with Down Syndrome –  I just wanted to tell you this morning that I am LOVE – STRUCK by your children.

I think they offer something to the world that the world needs more than anything else. Attention to detail.  Senseless joy. Acceptance and love for all. I think that they, and you, are special.

If you haven’t yet…please check out Kelle Hampton’s blog and meet little Nella. I don’t know Kelle, but I just finished her book, Bloom. Kelle takes the brutal out of brutiful.  She just leaves beauty. Sometimes I need that.

Love,
G

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