My last health update post was, I realize, rather ambiguous. Or at least party ambiguous. Mostly because it was all pretty ambiguous to me, too.

So.

Prepare yourself for a rather tedious and boring update with some big words and lots of “I don’t know’s” and a hefty dose of discouragement… Now aren’t y’all just dying to read more?

As for info–here’s what I have for ya:

–When did this genetic testing stuff all start?
In February, we went to see a geneticist at UVA (upon recommendation from my oncologist here). I’ve had two breast cancer gene studies come back negative, but they want to look at big picture for me. Basically, everyone is scratching their heads over me, because I am a-typical (no comments from the peanut gallery!). After getting all my records and pouring over them to determine links and see what syndromes they think I should be tested for, they found three syndromes they want to test for. The most serious being the Li-Fraumeni syndrome.

–Why genetic testing?
Knowing what I have (if I have any syndrome) will help doctors know what to look for, help me know what to watch for within my own body, and know what scans I should regularly get, etc. With two of the syndromes we wouldn’t even talk about the kids until they are old enough to determine on their own if they wanted to be tested, too. With the Li-Fraumeni syndrome, we’d want the kids tested right away because they’d need screenings and things before they’re 18. UGH.

All of the testing is optional and may not even be covered by insurance, because I am so a-typical (again, no comments from the peanut gallery!). We are leaning toward testing for the Li-Fraumeni syndrome and waiting on the other two… I’m already being watched so closely, although my docs are beginning to “loosen their grip” and pushing appointments to 6 months apart.

The ball is in our court. Once we decide what route we are going, I will call UVA and start (or end) the process. I don’t know how long it will take. It’s a simple blood test, but there’s a lot of paperwork and processing, too.

–More surgeries? What the heck?
One of my docs recommends two more surgeries, but they are both preventative in nature (preventative meaning, get things out of my body before they get cancer because they are prone to the types of cancer I’ve had). I am beginning to wonder just how much more of my body they can get rid of!

However, upon discussion with one of my specialists on Thursday, she recommends we wait until I get genetic tests back before we move forward with any surgery. If it’s positive, then yes, surgery might be wise. If it’s negative, then the likelihood of cancer showing up in any organ is pretty much the same all around, and since they can’t remove ALL my organs… you get the picture.

That was a relief–just having one less decision off my plate right now. God gave us the clarity we needed, and I am so thankful.

–Am I okay?
Yes. I am okay. I am overwhelmed and discouraged and struggling with the impact of all of this. I know that whatever direction we move on any of this, it’s about trusting God. He is watching over me every day and caring for my body and my heart and my mind and my soul. He’s also given us very competent and wonderful and wise doctors, and part of trusting Him is listening to the doctors He’s brought into my live. (The docs at UVA told me on the phone last week that I have received excellent care and my doctors have not missed a thing with regards to my cancers. Praise God for that!)

–Anything else?
I learned on Thursday that my bones are weakening. The chemo put me into osteopenia (the stage before osteoporosis), but my bones recovered some after chemo was over. My last density scan was two years ago. I’ve had a couple more surgeries and a medication change in those two years. I had a density scan on last Monday. My bone density in my spine has dropped 14% and my hips are now in osteoporosis. I had a temper tantrum in my car. Yes, I did. Beating the steering wheel and sobbing, and all I could say was, “I’m not an old lady!”

So, now I’m making MORE changes to my diet and lifestyle and that overwhelms me, too. (Although I am amazed at God’s hand years ago preparing me for now… I changed my major from pre-PT to Health Sciences/Nutrition my junior year in college. Look at His hand, y’all! How much I have needed that nutrition background for my life and my family. Isn’t He amazing?!)

–What do you need, if anything?
Prayer. Encouragement. Support. Truth. This is a big deal. I’m discouraged. Very discouraged. It seems we never get a break. My body is tired and beat up, yes, but the struggle of my soul, exhausts me even more. We are all just tired of the struggle.

I’m a control freak, and it all seems like it’s spinning out of control, although the truth is it was never in my control to begin with. Just knowing the possibility of the syndrome is there could easily drive me crazy. I want to be driven to my Lord. Not driven to insanity b/c I’m not going to Him with it all. So, honestly, y’all can just pray that I cling to Jesus and not wallow in my struggle.

I long for eyes to see His hand in all the little details of my days, and I long for a heart that beats strong in trust and faith and truth. Even looking back over this post, there are so many “look what God did!” moments. I want to live with eyes wide open and blown away by the “look what God did!” moments that fill my days.

Whatever way we move forward, our lives are in His hands. Would you pray for me to find rest in that?

Thank you.

Thank you to those who’ve taken the time to just love me through this new mess… the phone calls and FB messages and emails and hugs and kinds words. Some days I wonder if y’all aren’t just as tired of me as I am, and your faithfulness to continue to support my family and me is… well… wonderful.

I am blessed because of you.

I love that God doesn’t beat us up when we are weak and afraid. I love that He allows us to be human. I love that He guides us, He hears us, He holds us, He feeds us, He fills us. He comes to us in the still, small voice of assurance that He knows us and knows our name. He brings others to walk alongside us and love us and care for us. He bids our anxious fears subside, because He knows life and death can be scary. He leads us and delivers us.

The kids and I prayed this morning, asking God to comfort and heal and work miracles in the lives of friends (so many are hurting), and praising God that He is our Savior, our Deliverer. Then we turned up this song (Bella’s “exactly favorite worship song”) loud while we brushed teeth and braided hair and packed backpacks and sang together in our noisy assurance that we will land safe on Canaan’s side.

When I look at the past and the scars it holds… when I look at today, at my body and soul and all the scars I see and feel… when I think about the future and the scars it could hold, it is hard.

But then I look at the scars of my Savior.

And I see…

His scars hold mine.

I am okay. I am. Really.

Thank you for your love and prayers.

Live life today, friends.

Because what happens matters.

It’s an understatement for my emotional well-being recently.

On the one hand I’m overwhelmed by how well I have been feeling physically. Then I get overwhelmed by all that I want to do because I feel better physically. Then I get overwhelmed by all that’s on my plate because even though I feel better physically, I still tire twice as quickly as I once did. Then I can’t get all that’s on my plate done, and I feel overwhelmed by all that’s still on my plate.

All of this, though, is fixable. I can lessen the things on my plate. I can say “no” more often even if it might disappoint people. I can prioritize my “to-do” list in a way that doesn’t put too much for me to do on any given day. I can “redeem the time because the days are evil.” And I can stop. worrying. so. stinking. much. about what other people think of me if I can’t be all things to all men.

Overwhelmed.

It’s when I sit in the doctor’s office and he shakes his head in awe that I had yet another cancer 9 months ago and then strongly recommends two. more. surgeries. Yes, y’all, two more surgeries. (I still need to talk with my oncologist before we make that decision.)

Overwhelmed.

It’s when I get the phone call from my geneticist at UVA who says they have three different syndromes they want to test me for and one of them… one of them… one of them is very serious.

Wait a minute.

What did you say?

Oh that part about if I have it I will want to get. my. kids. tested. right. away, because if I have this syndrome, it’s very serious. Can you repeat that?

If… then… get.kids.tested.right.away.

It’s called Li-Fraumeni (pronounced lee-fro-meenie) syndrome, and it pre-disposes a person to “a wide range of malignancies, with particularly high occurrences of breast cancer, brain tumors, acute leukemia, soft tissue sarcomas, bone sarcomas, and adrenal cortical carcinoma.”

Y’all, I spent all of Friday crying. Folding laundry, sniffing the scent of my children on stuffed animals as I placed them on their beds, wandering aimlessly around the house crying.

Crying because I’m completely overwhelmed, and completely undone, and I. DON’T. WANT. ANY. MORE. OF. THIS. Crying because I’m scared. Crying because I feel utterly alone in all this.

*Deep breaths*

Did you hear what was missing from Friday?

I spent all day crying. But I didn’t spend any time crying out. I didn’t go to God with it because I didn’t want to go to God with it. I wanted to feel it all deeply and feel sorry for myself for a while.

And my kids listened to me snap at them mercilessly and stomp around trying to “get things done” and my sweet Bear finally sat down and said to me, “You’re mean voice is not fun, Mom.”

Yes. Feeling overwhelmed. It’s my “You’re A Meanie” Syndrome.

My Bear was the heart check I needed. The reminder that I was spending the entire day crying because I might have a syndrome that might lead to my children having this syndrome that might lead to cancer at an early age for them and I wasn’t spending any time WITH them, and I certainly wasn’t loving them.

And we found ourselves on the floor, the four or us, with me in the middle begging for forgiveness and telling them I had failed them, and Bella-girl stroked my hair and Ash-man said, “It’s okay, Mom. I get mean, too, sometimes.”

And then that weekend I sat with 150 or so of my brothers and sisters at church and worshipped.

And one of the songs we sang was “Beautiful One”.

Do y’all remember when we learned that my CAT scan was clear 4 1/2 years ago and that the cancer had not spread to my liver or bones or brain? Bri and I got in his Jeep and the song on his iPod that “just happened” to start up was “Beautiful One” and we turned it up and sang our hearts out?

Friday night I sang my heart out.

Overwhelmed with life, yes.

But even more overwhelmed.

By the Beautiful One I love. The Beautiful One I adore.

Christ has captured my heart, and no matter whether I have “You’re A Meanie” Syndrome or not, His Cross has spoken mercy over me. When my eyes are fixed on Him, then instead of crying all day, I am crying out for that mercy to cover me and give me strength.

And I look at the Cross.

And I am overwhelmed.

(Would you pray, my bloggy friends? For wisdom and peace and direction? We have a lot of decisions to make, and in case you didn’t figure it out, I’m a little overwhelmed. Thank you for your faithfulness to my family and me… I am loved.)

Bella: Oh, Bear! You could be a pastor at Cub-nant! Then we could all be at Cub-nant together and you could teach us!

Oh, my boy.

I hid my smile, remembering the days of cooties and “hating boys”. His innocence slays me. He just doesn’t think that way, and it made my heart ache to hear him hurting.

How do I do this?

This parenting thing.

“Oh, Bear,” I held him. “You know that’s not true. Girls are no better than boys. You know it in your heart. That was girls being silly girls. Try not to let it hurt you, and remember, if you know the truth you can rise above the silliness.”

How do I help him learn to shut out the noise of others. Or rather how do I teach him which noise to shut out? And which noise to hear and move towards? And which noise to let change his life?

The reality is that kids are kids and they’re going to say things.

But honestly, y’all, the other reality is that we live in a world where men and women belittle each other as “less than” far more often than they should.

“We need each other,” I told my Bear. “Boys need girls and girls need boys. And no one is better than the other. We are each uniquely created for the roles we’ve been given. The places we are. Imagine a world with no girls.”

He shook his head, “That wouldn’t be good.”

“You’re right, it wouldn’t. And a world with no boys would be bad, too.”

We need each other.

Oh, how we need each other.

I remember many years ago being at a seminar and hearing the woman speaking bash her husband because he was home with her children and look at all she had to do to prepare him for taking care of the kids. I remember her mocking him because she didn’t trust him to potty train. I remember her talking about the mess her home would be in when she got home, and I remember the group listening laughing and someone mentioning how “men just can’t do it right.”

I remember wanting to walk out of that room right then and there, because, y’all I know that husband was a good father. He just didn’t do things her way. Instead of being thankful that she had the freedom to come speak at this seminar because her husband was willing to stay home with the kids that night, she stood in front of a large group of women and bashed him. It was painful to hear.

And years later, I struggled in bed for weeks and months fighting cancer while my husband didn’t do things “my way” in the home, but my children were loved and cared for and protected and provided for because my Brian was willing to step up even more than he normally does.

Because we need each other.

Oh, how we need each other.

Whether we’re classmates or workmates or siblings or married or unmarried. Whether we’ve been hurt by men or hurt by women. Whether we think we do or not… we need each other. And in a perfect world, nobody would “rule or think anybody drools”… But sadly, we don’t live in a perfect world, and men and women fail each other all the time.

And that is why we need Jesus.

And that is how I do this parenting thing.

By taking it all to Jesus.

And taking my Bear to Him, too.

No matter how simple I may think the problem is, if it’s big to Bear, it’s big to me and it’s big to Jesus. And so we pray and we ask God to help when others’ words hurt, and to help us move forward and to love others.

I watched my Bear today. He spent the day helping his dad with the car and came in with grease on his hands and told me how the bolt fell and Dad couldn’t reach it and so he reached down in the engine and grabbed it, and he’s the hero. Then I watched him play baseball and pop fly and hit fouls and stop grounders and make errors and handle losing 17-2 with grace and dignity (might I say far more grace than was in my heart toward the coaches of the other team who played rather dishonorably?). I watched his heart melt when he found robin eggs in a tree that blew down in the wind, and he sighed over how sad it must be that the mommy would never come back to those eggs. I watched him jump in the truck and help his dad load branches and take them to the dump.

And I realized something all over again.

His friends might think girls rule and boys drool.

But I know better.

My little boy Bear who will one day, Lord willing, grow up to be a big man Bear (and perhaps “should I be a pastor?” he wonders).

This world needs my Bear.

I need Bear and he needs me.

Oh, how we need each other!

Last night we curled in her bed and read together, and I watched her fingers trace the outline of Maid Marion’s wedding dress. Her eyes lit up and then turned dreamy, and I knew where her mind had gone–to her own white dress and flowers and dreams of weddings and husbands and families. She loves to imagine that day.

I shook back tears and mentally screamed, “Must. stop. time!”

We read Dumbo together, Bear curling in with us, and she finger traced the Mommy and baby together and cried when they were separated. “That’s how I feel when I’m away from you, Mommy. Well, some of the time. I really like to be at school, too. I guess I’m torn in two.”

I nodded, knowing what she meant, because this growing up is exactly what I want her to be doing, learning her independence, learning to step forward on her own, but inside I am torn in two, screaming, “Must. stop. time.”

“Will you snuggle me?” Her big brown eyes looked even bigger as she gazed up at me. We snuggled together under her covers and prayed for her days and the year to come. And it was my turn to trace, only this time it was tracing the outline of her forehead and cheeks with my finger just as I had done when she was a baby. “This feels good…” her words slurred as she whispered in her not-yet-but-almost-sleep. And she nestled into my shoulder and sighed, and my mind screamed, “Must. stop. time!”

Somehow that spot under my chin has grown with her. I’m thankful for that… this molding and growing and changing and learning… I’m molding with her and we’re growing and changing and learning together.

As she drifted off to sleep, I eased myself out from underneath her and kissed her forehead, “Good night, my love.” She opened her eyes for a moment and murmured, “I love you.” Then she tucked her hand under her chin and slipped back into dreamland, and I screamed inside, “Must. stop. time!”

This morning around 6:00 I heard them, the pitter patter of little feet as she came into our room, crawling into bed with us, barely awake, shivering in the pre-dawn darkness. She found the nook under my chin and sighed, and I whispered, “Happy birthday, baby.” She half-sighed, “Thank you, Mommy.” And I lay next to her and silently screamed for time to stop.

I woke her later to get ready for school and in our morning rush, we sang our happy birthdays and thanked God for our little Bella-girl. I ran up the steps to call her to breakfast and found her stroking her long, red curls, watching herself in the mirror, and I stopped and caught my breath, and I think this time I actually said, “Must. stop. time!” She turned and grinned at me, “But Mommy, I have to grow older, so we can grow older together.”

Oh, that girl!

She is a gift.

And as I wrap presents and prepare her birthday meal and buy donuts (she wants donuts instead of cupcakes this year), it is I who am receiving the gift.

The gift of her life.

It is easy for me to sit and be sad, to long for time to stop, to grieve over so much lost time with her these past 5 years of battle. It is hard to accept that I cannot remember parts of her life, the milestones, the cute phrases, the stories of toddlerhood, the time missed with her while others cared for her. Every year on her birthday, I grieve those losses.

But the gains. Oh, the gains far outweigh those losses.

What have a gained?

I have gained a rainbow in my cloud. She is happy and content and enthusiastic for life.

I am certain God knew when He formed her that I needed her little joyful personality to bolster my spirit. She is full of dreams and spunk, and is a friend to all, weeping when others weep and rejoicing when others rejoice. This girl with a heart of gold.

And though I cry inwardly for time to stop, I know… this is best, this growing and loving and learning and changing.

This is the beauty of time.

Because for us time is measured in heartbeats of love, and we have all the time in the world.

Happy birthday, my dear girl. This world received a beautiful gift the day you were born.

Suddenly I am face to face with rebellion and anger, and I must swallow mine in order to love, train and teach.

And God’s Word rings in my ears…“let NOTHING unwholesome proceed out of your mouth… only that which edifies…for the need of the moment…so it will give grace…”

How do I do this?

We look at each other, eyes searching, wondering who will break first, but it is not my job to break. It is my job to bend–bend their hearts towards the Son of righteousness, so that they will grow. I must speak. But how to bend?

“let NOTHING unwholesome proceed out of your mouth… only that which edifies…for the need of the moment…so it will give grace…”

Each moment is full of the need of grace. And I fail far more than I succeed, but failing does not make me a failure.

This parenting is hard, but if it were not hard, it would not be parenting.

This parenting is not convenient, but if it were convenient, it would not be parenting.

These children are gifts no matter how difficult parenting them may be. Difficulty does not diminish the goodness of God. It only increases my dependency on Him and His goodness.

That is how the words can come. Through Him. Because of Him and His grace. That is only how I can give grace.

“let NOTHING unwholesome proceed out of your mouth… only that which edifies…for the need of the moment…so it will give grace…”

It is only when I am not dependent on Him that the lens through which I view my children blurs and cracks and distorts.

But when I look at them through His eyes I see them clearly. The way I need to see them. The way I want to see them. As gifts. And I fall on my knees and beg God for wisdom and strength. For grace and love. Because I so desperately need Him and so do my children.

“let NOTHING unwholesome proceed out of your mouth… only that which edifies…for the need of the moment…so it will give grace…”

They need to see Him through me, and how can they see him through me if I view them as a nuisance, an inconvenience, an interruption to my day or my plans or my life? How can others see Him in me if I complain and groan and disrespect my children and their reputation?

No. I parent them and I love them, and I accept parenthood for what it is.

Daily denying self.

Work.

But oh, what joyous work!

At the end of the day when they curl up beside me, head on my shoulder, the words, “I’m sorry…” come.

There is the boy who looks at me and I ask, “What will you tell your friends?” and he says, “The truth. I messed up. I sinned.”

“let NOTHING unwholesome proceed out of your mouth… only that which edifies…for the need of the moment…so it will give grace…”

Their words. My words. They have changed from unwholesome to edifying because of God’s grace.

And I see the Gospel.

It is there and they are growing.

And as I bend them toward the son of righteousness, I see the shoots deepen into the earth and the saplings stand tall.

And I fall to my knees. Thankful for His gift.

This joyous work of parenthood.

Ian. That dear boy who loved unreservedly and enjoyed life fully. That boy who hugged anyone and made friends with everyone he saw. That boy who loved to tickle and laugh and say “tamales” for Sunday School answers just to laugh some more. That boy who was a boy scout full of adventure. That boy with Down Syndrome. That boy who truly LIVED.

At the end of the service, Ian’s dad walked him to Brian and Brian brought Ian up to the congas for the last song.

For those of us who were there, we’ll never forget it. For those of you who weren’t, I can’t even begin to describe it for you… the look on his face as he banged away at those drums…pure worship and joy!

And oh, how he banged! He played and played and smiled and laughed and banged and jumped and enjoyed worshipping Jesus to the fullest. I have rarely witnessed such a beautiful picture of pure, unfettered worship like Ian’s.

My seat in church gave me clear view of not just Ian’s face, but Brian’s face as he stood next to him and drummed with him… and of Ian’s father’s face as he sat in front of me, worshipping with his son.

No words, friends.

No words.

Ian. That dear boy who loved unreservedly.

He went home to be with Jesus on Friday morning.

As I hugged Ian’s mom at calling hours, she talked with me about that day, about how wonderful it was for him to play the drums… about how blessed she was to have had him in her life for 22 years, her constant companion…and about how Ian had so many adventures and so many people who were willing to adventure with him.

It makes me think of C.S. Lewis’ book, The Last Battle, where he writes, “And for us this is the end of all the stories, and we can most truly say that they all lived happily ever after. But for them it was only the beginning of the real story. All their life in this world and all their adventures in Narnia had only been the cover and the title page: now at last they were beginning Chapter One of the Great Story which no one on earth has read: which goes on for ever: in which every chapter is better than the one before.”

Ian has fought his last battle, he’s walked through that door, he’s past the cover and title page and he’s into chapter one… which goes on forever and every chapter is better than before.

That boy. That dear boy who loved unreservedly and enjoyed life fully. That boy who hugged anyone and made friends with everyone he saw. That boy who loved to tickle and laugh and say “tamales” for Sunday School answers just to laugh some more. That boy who was a boy scout full of adventure.

That boy who banged the drums.

I can only imagine his worship now… pure and unfettered.

That boy who lived so passionately.

He is really living now!

(Would you pray, my bloggy friends? For Ian’s family and friends… There are many who knew Ian far better than Brian and me, and we grieve for their pain. But we cling to hope with and for them… a hope that does not disappoint.)