A Broken Hallelujah

"Given the 'normal' sins of marriage, the messiness and brokenness, as difficult and wearying as it can be, we must remember that the vows exist for precisely such circumstances. You really don't need to make a vow to stick with someone in the best of times. The inclination to run doesn't exist then. It's the low times the covenant is made for." (The Mingling of Souls, Matt Chandler page 206)

Recently I was on FB, when this came across my feed...

God is good, all the time. All the time, God is good.

Some random stranger had posted that as his status. A mutual friend commented on it and thus it made its way through my newsfeed.

Another random stranger commented, "cancer in a child?"

And I had to answer.

Yes. God is good, all the time. God is faithful. God is gracious. Even when my child has cancer.

I might say it through my tears, but I still believe it with all my heart.

What if we changed that even to especially?

God is good, especially when my child has cancer. God is faithful especially when my mom's body is shutting down from ALS. God is gracious especially when my sister in law dies in a car accident, leaving a husband and three young children.

God's character is not something He takes on and off like a jacket. He is much different from us humans in this way.

God is holy (Psalm 99:9). Which encompasses much more than being without sin.

Holy is also the idea of whole, healthy, entire. God isn't kind and good one minute, and not kind and good the next minute.

The Bible says God is love (1 John 4:8). God is light (1 John 1:5). God is peace (Isaiah 9:6). God is good (Mark 10:18). God is gracious and compassionate (2 Chronicles 30:9). God is righteous (Daniel 9:14). God is merciful (Daniel 9:9). God is true (John 3:33). God is just (2 Thessalonians 1:6).

This is more than the idea of practicing these things. These things are who He is. He is the epitome, definition and manifestation of these things.

If that is true, if God's character does not change, then each attribute and characteristic is evident in each of His acts. Creation, redemption, judgement.

I don't think cancer was created by God. I do think it is allowed by God. It is a result of the fall. Universal sin. Which is why I can still see His gracious hand, kindness and goodness in these circumstances.

As a matter of fact, when we are just strolling along, and life is good, we tend to get forgetful of all the benefits and blessings that we receive from the hand of God. We aren't actively ungrateful, we are just apathetic and unaware.

But, as we paddle through deep waters, struggling to keep our heads above the flood, we feel God's gracious, sustaining, powerful right hand upholding us. He is there.

The flame shall not hurt thee, I only design, thy dross to consume and thy gold to refine.

Sometimes we feel His presence. Sometimes we see His grace and goodness in the trials.

Sometimes we can't. But, that doesn't mean that He isn't.

It is an act of faith to just keep trusting, relying on His unchanging character and person. His unfailing goodness and mercies that are new every morning.

Sometimes that act of faith is an act of complete and utter desperation.

It makes me think of the vows quote that I placed first in this post. Vows are precisely for the bad times. We don't need vows to make us stay during the good times. Vows remind us to stick it out when things are rough.

We need God's goodness all the time, but we rely on His goodness especially during the hard things...like cancer, death, loss, grief, war, strife, divorce.

I don't say this theoretically. I've lived it-especially this past year.

I still don't have a clue why my daughter lost her eye to cancer. I don't know why my upright living mom has ALS. I don't know what God is doing in these things, beyond changing me/us into the image of Christ and bringing glory to Himself.

This is a hard concept. Which is why I say it through my tears. The Holy Spirit has used Scripture to comfort me through all of this, but it was not via hearing it from others. It was as I read the Psalms, and other passages, for myself. Hearing scripture from others felt awfully like a battering ram.

Furthermore, I sat in church, and couldn't sing for several months. I'm a music girl, and I couldn't choke out the words. I just cried.

I don't know the why.

But, I do know that God is good, all the time.

And from that flows my broken hallelujah.

On Transplanting, Cancer Anniversaries and Healing

So, on the 4th of July I did my semi-annual garden weeding. This year I had co-oped the first weeding to the offspring, but I bit the bullet, and did the second (and final) weeding myself. Because ain't nobody got time for more weeding than that.

#IdRatherBeCycling

I had gotten a steal of a deal on the seedlings in the spring. Eight plants for $1.50. Which made for 16 plants at $3.00. Which made for a seriously crowded tomato patch. I think I planted 12 plants (it KILLED me to let the other four just die), which was still about four too many for my space. The plants were slowly growing, but were definitely not flourishing.

Long story short(er)...I pulled out 2 plants (and threw them away!!!), and then moved 3 plants over.

Those three plants immediately wilted.

I was really careful moving them. I kept the roots intact, and even tried to keep dirt on the roots. I buried the plants securely, and then watered. But those babies looked sick.

Very wilty. Droopy leaves. Limp limbs. Barely surviving.

Over the next few days I watered them religiously. I spoke sweet nothings in their ears. I encouraged them to take root again and grow. They'd barely perk up.

But finally they turned the corner this weekend.

They are still not as robust as they were before I messed with them, but they are looking much better. Not as much on death's door.

Hmmm...

Of course this makes me think of life.

We each go through tremendous trials. Trials that batter and shape and mark us forever.

In the urgency of the trial, people pray for us, and cry with us, and rejoice with us.

But then, life moves on. People aren't praying as much anymore. People think the situation is over and done with. Sometimes it feels like people are tired of hearing about cancer, or loss, or death, or divorce, or miscarriage, or _____.

The situation seems hopeful or healed (or at least, should be) to the outside observer, while the sufferer is still dealing with the ramifications of the journey.

Like the tomato plants.

I mean...they have roots, good soil, water, miracle grow, sunshine and rain. Sure, they were transplanted. But, really? Get over it and get flourishing.

But, what we can forget is that transplanting is a drastic measure. The bigger the plant, the more drastic it is. You practically bring the plant to the point of death in the hopes that it will bear more fruit. 

So, even with fastidious tending, it takes a long time for the plant to recover.

Today, July 11, 2017, marks the one year anniversary since Meredith's eye enucleation. And she is doing marvelously. She is getting hardier, and healthier, with each passing day.

Our family is doing well. Our outlook is really good.

But...

Sometimes I wonder if I will ever reach a point when cancer isn't my point of reference.

Sometimes I wonder if I will be able to type a blog post again without crying.

Sometimes I wonder if people are sick and tired of hearing about how this impacted us. If they are thinking...just get over it already.

Sometimes the FB memories just take and bite me in the butt.

I know that God is good and faithful all the time. And I am thankful that He brought us through this hell. But, I still have no idea what His plan in the whole thing is.

I feel like the tomato plant...perfect growing conditions, but not quite recovered yet. So even though theoretically we should be robust and flourishing, we are still a bit wilty and droopy.

I try to allow myself the tears as needed, and I lean into healing practices.

We all willingly quote and cling to Romans 8:28-29. All things work together for good. All things for God's glory. All things to conform us to the image of Christ.

People ARE being changed. We need to realize that this is often a radical conforming process. It is excruciating. It takes time to process the ways we've been changed. The actual change and the conduit of the change.

Even though someone may seem healed on the surface, they often deal with the scars and stretch marks for years. Time passes and does heal, but there is not formulaic time period that heals all ills for all people.

Thus we need to listen, and weep, to lean in, and be leaned upon. Whenever and wherever. For however long it takes for that healing to be complete. For the person to become vibrant, robust, strong and flourishing again.

Like my tomato plants.

This Is My Fight Song

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me

-Rachel Platten

One of our family's favorite music groups right now is the Piano Guys. We love how they combine new and old songs, inventing new moves and techniques on the piano and cello. They really are awesome.

Their newest album, Uncharted, came out last fall. It has become our minivan sound track. The songs are very stirring. Our favorite of the favorites is Track 1.

Amazing Grace-Fight Song.

It's the piano. And drums. And bagpipes. And the cello. Plus some good, hearty Oomphs! by kilted Scotsmen. 

Listen here...

Here's my confession...I had no idea that Fight Song was a song. I mean, obviously it was a song. I didn't know it was a thing. But my kids did. I think they heard it at their cousins' house? 

Anyway...

There was the morning in January that Meres and I were driving to the hospital for her last chemo treatment. The player rotated the disks to Uncharted. Fight Song-Amazing Grace started playing. And Meres belted out the first few lines.

Being the only lines of the song she knows...

This is my fight song
Take back my life song
Prove I'm alright song

-oh yeah (a  Meres' improvisation)

It seemed so fitting to hear her sing those words on her way to chemo. She hasn't let cancer get her down. Not for half a minute. Not her barfing or her prosthetic eye or her hair loss or the really long chemo days or the unending pokes.

I'm proud of her indomitable spirit. 

Of course, being a hormonal mother, I also cried in the front seat that morning.

Not from Fight Song, and her robust little girl voice piping the lyrics. But as the Amazing Grace harmonies played, and it's lyrics wound through my head. Not the first verse, but the (traditionally) third...

Through many dangers, toils and snares, I have already come.

'Tis grace has brought me safe thus far, and grace will lead me home.

-John Newton

It was a promise and reminder that spoke to my heart that morning. We have been through so much this year. But, by God's grace, we have safely come through these dangers, toils and snares. And, what a mercy to know that God's grace will continue to lead us-step by step, year by year, trial by trial-safely home!

It's May. Four months later. We still listen to this soundtrack almost every time we are in the car. And I oomph with the Fight Song, and praise God with the chords of Amazing Grace. We are still fighting. We've still got a lot of fight left in us. We are alright. (maybe barely, some days, but nevertheless, alright.)

The pairing of these two songs is absolutely genius. It the glorious combo of not giving up because God's grace is empowering each step. For me, forever and ever, amen, this Piano Guys' arrangement will always be associated with Meres' cancer, and the way that cancer changed our family. 

It has become our fight song. 

The grace of God.

In the Scheme of Things

*could alternately be titled Things I Just Don't Care About Anymore or Bigger Fish to Fry

I do realize that the majority of my posts lately (since last summer) have been about cancer. I feel marginally bad about that. But, only marginally.

Because a cancer diagnosis rocks your world. And fighting the fight against cancer completely changes your life. There is a definite before and after. The relatively easy, care-free before. The horrendously hard ever-after.

Your life changes. Your approach to life changes. A lot of it is simply being in survival mode. But, some of it is that you come to realize that there are important things, and not important things. And there is no need to sweat the unimportant.

In the scheme of things, some things really don't matter all that much. They are not worth the extra mental energy. And they certainly aren't worth a burden of guilt.

That ever touted "mom guilt". I'm just not buying it.

Things like....

Sugary cereal. The past 9 months my family has single-handedly kept box tops for education afloat. Between Lucky Charms and Cheerios, we are funding school(s). I'm doing my part. In all seriousness, we actually haven't eaten that much cold cereal, but we've eaten a ton for our family. And, I'm okay with that. My kids eat tons of fruit and vegetables, so sugary cold cereal a couple times a week will not kill them. It has been totally worth it, for my peace of mind. The same goes for pizza, and Stouffer's lasagna, and store bought bread, and Aldi's simmer sauce. Sanity and rest in this season made the decision a no brainer. Taking the easy path occasionally on these few items has allowed me to parent much better on other fronts.

Dyed Hair. Last spring I dyed Meres' and LC's hair. And, I got some flack for it. Which I actually thought was kind of ironic because women dye their hair every day of the week, and everyone is polite enough to not notice. I guess it only crosses a line when it is blue or pink? Anyway...pink hair is nothing when lined up against hair loss from chemo. It becomes a total non issue. Meres is going to the salon next week, and guess what? She is planning to get streaks of color in her hair. It is beautiful and it is her personality. Her "boy" hair has been hard for her. Sometimes people equate hair color with rebellion, but today it is a whole lot deeper for her than that. Today it's a way to make her feel beautiful, and I'm all for that.

Cinderella dresses. The girls got princess dresses from Disney World. And Meres, especially, has been wearing hers everywhere. To the grocery store. To the salon. To the dentist. To school. To church. And frankly, I don't care. Before cancer me would have wondered about the appropriateness of wearing a glittery princess dress to church. After cancer me really doesn't care. There are bigger fish to fry. I'm just thankful that she is healthy enough to be out and about, wearing a princess dress. Yes, I'm sure there is more appropriate church garb, and she will eventually be wearing it to church again. But, for now, I just smile in her glittery wake, and I thank God for her indomitable personality.

Drama. When your child has cancer, there is enough drama in your life. It truly is a life and death struggle, and there is no room for trumped up drama in your life. Politics, elections, protests, just don't matter nearly as much. All the social media back and forth this past year, it only made me think, "you are so blessed to have nothing more urgent to worry about than ____." I'm also done with relationship drama. When a relationship is sapping energy and focus that is needed for God, spouse and children, then it is time to let it loose. Especially when you try and try, and just dig yourself deeper. It is super sad and hard, but sometimes necessary.

See, it's not that any of these things aren't important. Eating healthy is important. Dressing appropriately is important. (hair color is NOT important.) Elections and voting are important. Relationships are very important.

But, in the contexts I've listed, these things are just not important to me, right now.

And, for the record, important is rather subjective. What is important or non-important to me, could be the exact opposite for you. Which is quite right and good.

For me, this year, it all has boiled down (once again) to priorities. My first priority is my relationship with God. My next priority is my husband-loving him well, meeting his needs, and cultivating our relationship. My third priority is my kids. Parenting to the glory of God. Educating them, and tending to their spiritual growth, and caring for their health.

That's my filter. There is no perfect formula that works best for all time and in all life seasons. It requires flexibility, and grace, and reliance on God for direction and filling in the gaps that I miss in my humanity.

What is just not important in your scheme of things today?

Party Like a Princess

Wow!

It has been an intense nine months. Nine months to the day today, Meres was diagnoses with retinoblastoma. It was a shocking diagnosis. Many repercussions, some of which we have yet to realize.

But, thankfully, it has also been nine months of many, many answers to prayer.

-three clear MRIs

-six chemo treatments successfully completed

-no hereditary retinoblastoma

-a gorgeous new prosthetic eye

-a port in and a port removed

So many people have walked this road with us, supporting us with their prayers, meals, words of encouragement, cards, gifts, monetary gifts, child care, hugs, and more. People have cried with us, and laughed with us. People have been there for our kids in ways that we couldn't be, in that we are just finite human beings. Organizations have chipped in with dinners, support groups, Christmas gifts, parties, a wish trip, and even a gorgeous cake.

We felt the need to celebrate where we've been this year. To celebrate the healing. To tangibly thank the friends and family who have stood shoulder to shoulder with us.

So, we threw a HUGE party last Saturday, one month after Meres' port had been removed.

We invited hundreds of people. And hundreds of people came. (though probably less than half the hundreds that had been invited. Whew!) The party itself was one more labor of love on the part of so many of those who have been here this past year.

My sister-in-law, Brenda, came up with the theme. (And she also kept the food replenished so I could mingle with our guests.) I was stuck on what food to serve, and she suggested serving Meres' favorite foods. That got my wheels turning. The theme of the party became Meres' favorite things. Her favorite snacks, candy, desserts, colors. 

My friend, Bethany, graciously agreed to do the decorations, even though she had a prior commitment for that day. She found ideas, and then she and Elsie spent an afternoon painting and making flowers. She took time late on Friday to help set up, which is quite the sacrifice-especially for a tired, pregnant mom.

My friends, Rich and Linda, drove up from Chicago, and helped decorate Friday night, finish food prep on Saturday, host and clean up.

My friends, Ann, Amber (also a sister-in-law. I'm doubly blessed in this relationship.), Mary Lou, Katie, and Mary, all made batches of Spice Cake cupcakes. Believe me, that saved me tons of time.

My sister in law, Anna, lent me her corn hole game, which the kids loved. It was a cold and rainy day, and it gave the younger set something to do. She and my brother in law, Ian, also helped clean up after the party.

My friends, Hannah and Mary, both leant me serving pieces and gave good advice as I talked numbers and technicalities. 

So many people, so much love, so much generous giving of time and talents. It is very humbling to be on the receiving end of that.

I had the idea for this banner, and through hook and crook, it turned out pretty well-for a crafty thing that I've attempted. I also made the mobile type thing that you can kind of see hanging next to the fire hydrant in this photo. Each card listed an organization that has benefited our family this year. BMV helped me with the logos on each card.

This is Debra. She is a baker, and also volunteers her time and talents to create magnificent cakes for kids with life threatening diseases. She totally planned and executed this fantastic compilation of sugar and flour and eggs. Isn't it amazing!!! What a gift!

Every part of the cake was edible. And it was delicious! 

Favorite snacks and desserts included gouda cheese, pretzels, pita chips, fresh veggies, hummus, brownies, grapes, mini peanut butter pies, and the spice cake cupcakes.

I also had almost 20 pounds of candy-gummy bears, jelly bellies, and M&Ms. I took home maybe a pound of M&Ms. The candy was a big hit!

I made this timeline with notable dates from this past year, interspersed with photos of Meredith from the past year. What a testimony to the journey, and the God who faithfully carried us through.

I saw this dum-dum sucker bouquet thing on Pinterest. I made that for the guest book table. The kids loved that too. You can kind of see it in this photo.

Once cancer strikes, it is a part of your life forever. But, we are thankful to have reached the end of active treatment, with a decent prognosis. Meredith is currently cancer free, and we pray that she stays that way forever and ever.

And, Meredith, well, she partied like a princess. Which makes everyone smile.

Thou Hast Covered Me In My Mother's Womb

People without retinoblastoma have a gene in their eye that stops a certain cell production. People with retinoblastoma don't have that gene. Because there is nothing to stop them, the cells effectively mutate and multiply, eventually forming into tumors known as the cancer, retinoblastoma.

Retinoblastoma is a tricky cancer. It is not an environmental cancer (like lung cancer than can result from smoking). The framework for retinoblastoma is laid in utero. And there is nothing that can be done to prevent it.

This week the kids and I have been learning Psalm 139:13-16. (I learned it years and years ago. It is a passage that is stuck in my head. Some things you memorize, you forget. This is one thing I've never forgotten.) I love this in the poetic KJV...

For thou hast possessed my inward parts: thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well. My substance was not hid from thee, when I was made in secret, and curiously (intricately) wrought in the lowest parts of the earth. Thine eyes did see my substance, yet being unperfected (unformed); and in thy book all my members were written, which in continuance were fashioned, when as yet there was none of them.

These verses resonated with me as I thought about them this week.

We use this verse quite often in talking about abortion, and why it is wrong. But, this week my thoughts went much farther than that application.

The Psalmist had confidence that God knew everything about him, before he was even born. God designed him, and wrote the specifics of that design in a book. God created him according to those specifications. This all happened before birth, in utero, and even conception.

God formed him and covered him in the womb. The word covered, when used about God, makes me think of other Biblical word pictures, like the eagle covering her young with her wings. Or as Psalm 91 puts it...

He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty...He shall cover thee with his feathers, and under his wings shalt thou trust: his truth shall be thy shield and buckler.

What a picture of protection, nourishing, and safety!

Though I'd never volunteer Meres (or anyone else) to have retinoblastoma, it is still beautiful to me that God knew all about it, before she was even conceived. God planned her, and formed her, and brought her to birth.

Five years later, we were made aware of this cancer that had started way back in the womb. But, God was covering her from the womb. 

Even though she lacked the gene that would prevent retinoblastoma... 

I will praise thee, for I am fearfully and wonderfully made. Marvelous are Thy works, and that my soul knoweth right well!

Meres certainly is a marvelous work-with or without retinoblastoma. She is fearfully and wonderfully made. This truth reverberates in my soul. There is no doubt about it in my mind.

Psalm 139 continues...(verses 17-18)

How precious also are thy thoughts unto me, O God! how great is the sum of them! If I should count them, they are more in number than the sand: when I awake, I am still with thee.

I love this too. God's thoughts about Meres are precious and vast and more numerous than the sand. 

For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end. Then shall ye call upon me, and ye shall go and pray unto me, and I will hearken unto you. And ye shall seek me, and find me, when ye shall search for me with all your heart. (Jeremiah 29:11-13)

Meres' retinoblastoma shocked us, and rocked our world. It didn't shock God. He knew, He formed, He covered. He has purposed this physical feature of Meres' to bring Him glory. His thoughts towards her are precious, multitudinous, and peaceful. God is with her, upholding her in His righteous right hand.

Thou shalt not be afraid for the terror by night; nor for the arrow that flieth by day; Nor for the pestilence that walketh in darkness; nor for the destruction that wasteth at noonday. A thousand shall fall at thy side, and ten thousand at thy right hand; but it shall not come nigh thee. Only with thine eyes shalt thou behold and see the reward of the wicked. 

Because thou hast made the Lord, which is my refuge, even the most High, thy habitation; There shall no evil befall thee, neither shall any plague come nigh thy dwelling. For he shall give his angels charge over thee, to keep thee in all thy ways. They shall bear thee up in their hands, lest thou dash thy foot against a stone. Thou shalt tread upon the lion and adder: the young lion and the dragon shalt thou trample under feet.

Because he hath set his love upon me, therefore will I deliver him: I will set him on high, because he hath known my name. He shall call upon me, and I will answer him: I will be with him in trouble; I will deliver him, and honour him. With long life will I satisfy him, and shew him my salvation. (Psalm 91:5-16)

This journey has been gut wrenchingly hard, but God has been faithful through it all. He keeps His promises, He does not change. He has been with us in this trouble, He has delivered us, and shown His salvation.

This story of retinoblastoma has become our story. Our story is our testimony. God is good, and faithful, and gracious, and powerful, and merciful.

Hairy Situations

A hairdo from January. That her sister gave her. Before the great hair exodus.

Chances are, if I’ve seen or talked to you in the last month, if you are a friend, I’ve probably talked to you about Meres’ hair.

You guys…her poor head!

One of the possible side effects of her chemo was that her hair would thin, but that she probably wouldn’t go bald. Which technically happened. Every month towards week three of the cycle, she lost hair. After each of the last two chemo treatments she lost a ton of hair. By a ton of hair I mean, she has three tuffs of her original hair. Everything else has fallen out, and is beginning to regrow. Most of her head is currently covered with new growth, ranging from 1/4” to 1/2”.

Except for those ridiculous three clumps.

So, if you squint, from the front she looks pretty normal. A cute bob, with lots of super short new hair throughout.

The back though….it’s a disaster. It is a swath of short new hair (picture a baby’s head), with two Bozo the clown tuffs sticking out on the sides.

It looks awful.

Thankfully, she can’t see the back, and regardless, she doesn’t really care. She is very matter of fact about how chemo made her hair fall out.

But, it really bothers me.

Seeing her head makes me want to cry. It has been heavy on my heart. And so I’d talk to people about it. And the reaction I kept getting was that it will grow back.

And it is. And I know that.

Here’s the thing…Meres is beautiful-with or without hair. And her personality makes up for any ridiculous hair. It really does. She is beautiful and vivacious, inside and out. And I love her, with or without hair.

So why is this temporary, shallow thing bothering me?

It’s because it’s her HAIR.

And if you are a woman, you can imagine what that means. We spend so much of our lives fooling with our coifs. Curling, straightening, washing, perming, coloring, cutting, styling, nourishing. Maintaining our hair is a costly endeavor-of both time and money.

Meres lost her glorious, long, blonde, curly hair.

And I’m mourning that loss. (Literally. I’m sitting in Panera Bread writing this post and crying.)

That’s why I keep talking about it.

 

It wasn’t until this past Sunday that someone choked up with me about her hair. At that moment I felt like someone finally understood how hard this was for me as a mom to watch. I (maybe selfishly) had been looking for empathy, not a reminder of the obvious. I have two eyes. I can see the hair is growing back. The issue is already being fixed.

In the scheme of things, temporary hair loss is very minor. But it was just.another.thing. in all the awful things we’ve been through this past year.

And I’ve been mourning.

The loss of her beautiful hair. The loss of her beautiful eye. The pokes, and the poisons. The long days and the sense of helplessness.

I wish it was my hair that had fallen out. (though the ratio of salt to pepper has definitely increased on my head this year…)

I wish I could have had the cancer instead of her.

I wish I was the one with a glass eye.

I wish I could have went through the pokes and the chemo for her. The sedations and the surgeries.

Here we are at the almost end. Chemo done. Three clear MRIs. Port removed. Things look really good. Check ups every three months or so.

I feel at peace that everything is going to be alright.

We are moving on from just surviving and coping. I finally have time to breathe and that time is also allowing me room to think and to mourn and to process. Part of that process is acknowledging both the profound and simple layers of losses. Past, present and future losses.

Her hair will grow back. It might be the glorious blond mane of the past. Most likely it will be different. Hair is a temporary loss.

There are more permanent losses. We won’t ever get back this time, this year, this eye, these lives untouched by cancer. Permanent losses. Permanent changes.

That is why I need to mourn the hair. Because it’s not just the hair. 

Weep with those who weep. Then rejoice with those who rejoice.

Jesus wept with his friends when death touched their lives. He wept even though he knew that he was going to raise Lazarus from the dead in just minutes. My friend empathized first, before rejoicing in the new hair.

I want my heart to be soft enough to weep with those who weep. I want to be known for empathy, not problem solving.

It’s what Jesus did. How can I do less?

Life Update

Well, January is almost through, and much has happened for our family this month.

-Meres finished chemo two weeks ago. That fact prompts a sigh of relief. We can see the light at the end of the tunnel, but it is still off in the distance. The cumulative effects of chemo have definitely caught up with her the last two treatments. Her (blood) counts never really recovered, her hair is falling out (not all, but it is quite thin on the scalp), her nausea was out of control, she had a flu bug for 3 days, and she has been fighting a cough for 2-1/2 weeks. But, her vision was 20-20 in her good eye yesterday when we visited her retinal specialist. We are in a wait and see pattern now. Did the chemo do its job? Only time will tell.

-LC has been learning how to knit. And I'm rediscovering my love for knitting. It is such a fun activity for when you are listening to something. Currently we are jointly working on a wool scarf. It is almost done, and should be quite cozy for her.

-BMV is still growing. I bought him 29x32" jeans in October. This month I had to by him 29x34". He officially has a longer inseam than his dad. And when I'm folding laundry, I feel like his jeans are almost as long as I am tall.

-Freckles has been devouring our Ancient Rome studies this year. He has read a couple thick books on the topic that are not on his reading list. He loves the subject matter, and he also is really digging the author Adrian Goldsworthy. Even though Mr. Goldsworthy's books are quite thick, they are very readable-or so I've been told.

-Both girls got haircuts last Saturday. LC got 10-12" cut off. Her now shoulder length bob is much easier to deal with than her longer hair. Her hair is super thick. SUPER thick! And a gorgeous blonde streaked with light tan. So pretty. I wish my hair was like hers.... Meres' haircut lady did a fabulous job with her cut. Meres' hair right now is a disaster. She has hair falling out, plus breakage, plus new growth. The lady stacked the back, quite short, and then bobbed the front. It frames her face and head very nicely now, and the problems aren't as evident.

-We are halfway done with this school year. Actually, 2 weeks beyond the halfway point! That is very cool! I always am excited when we cross that marker. It seems like the number of weeks left quickly decreases after the halfway mark. 19 down, 16 to go!

-Mid December, my knee surgeon cleared me for running. But, I have to take it really slow and build up very gradually. I started at a 1/4 mile. Then ran a 1/4, walked a 1/4, ran another 1/4. Then I ran a continuous 1/2 mile. Each week I am allowed to up the per run distance but a tidge. I am up to 3/4 of a mile continuous running. Next week I will bump up to a mile, and then I will add a 1/4 mile per week from there on out for a while. After I get to a certain point, I may be able to add 1/2 a mile, and then eventually a whole mile. But, it is slow going. I'm somewhere between "it's hard to be patient" and "I'm going to die if I run any further." I've utilized my gym pass much more this year than in the past couple years. Part of that is because there is no way I am running outside on the ice and snow. And in the past I've been outside a lot. I am very thankful for these facilities. My goal is to run 3 times a week, swim twice, and get a good biking and weight lifting session in twice. These sessions are combined in various ways, but I am quite thrilled to be back in the triathlon training saddle again.

-Even though it is winter, Mr. Hippie's roofing work has not slowed down a bit! He is working full weeks, though sometimes he has to take days off because of snow. We are very thankful for work for him and his guys.

-I am well on my way to having our taxes done. Which is a big thing for me. Tax preparation has always been my dreaded task, but I've kept up with our expenses and income throughout this past year, so now it is a matter of assembling all that data. I probably have another couple hours work to do, and then I am ready for my early March appointment.

-Meres was granted a Make a Wish trip to Disney World (and Sea World, and Universal Studios, and the Give Kids the World resort). We are beyond grateful, and all of us are looking forward to heading to FL next week. Sunshine. Warmth. Relaxation. Fun. I can't wait! This trip is such a blessing. Make a Wish is a fantastic charitable organization. I can't say enough good about it. Everything is covered...flights, hotel, rental car, food, baggage, gas, parks. Everything. It is amazing, and a total act of grace to our family. I'm sure I will have photos from the trip!

-I've been reading my little heart out. Which is another post for another time. I've been participating in my local library's winter reading challenge, but I've also been reading a lot of books on top of those 12 categories. I've been averaging 3-4 books per week.

-Speaking of reading...we've decided to read and discuss all the books on the Teen Reading List that Tim Challies recently put out. Individually, we each read the assigned 2 chapters during the week, and then on Monday night at dinner, we discuss what we've read. Each of our kids are required to come with 2 comments and 2 questions concerning what we read that week. Our first book that we are tackling together is Under Our Skin by Benjamin Watson. It deals with the hot button topic of racism, from the perspective of a black man. It has been an eye opening read.

-Because of sickness and snow plowing (our friends), we haven't made it to our Wednesday night prayer group most of December or January. We all really miss it. I just keep reminding myself that this too is a season. Meres has been under house arrest the past two weeks, hardly going out at all. That puts me under house arrest too. But, like I said, it's a passing season.

-We've been dreaming of future trips. Maybe another trip to Spain. Maybe Ireland. Maybe Italy. Definitely TX to visit family. And possibly MO in July to work at a camp. I love traveling. We are just waiting on the Lord to see how He leads.

-Mr. Hippie performed his first wedding a couple weeks ago! I was so proud of him. He was very handsome in his suit. He made some mistakes, but nothing that would negate the official-ness of the wedding. And he has been asked to officiate at another wedding this summer. We'll have to hang out a different shingle. Along the same lines, we were asked to do premarital counseling with two different couples. This is a very humbling privilege. We are still learning how to glorify God in our marriage. But, we can point younger couples to the Scriptures, and share based on that. We aren't perfect, and we don't have a perfect marriage. We are two sinners that God has been very gracious to.

-Days are lighter, longer. Like last night, when I was serving dinner at 6:00, it was still light outside. I love that.

Anyway, that catches you up on the Barefoot Hippie Clan. How are you doing?

When I Might Be Drowning

What a person publishes a post entitled, "What's Saving My Life Currently," you might correctly infer that said person feels their life needs saving.

Last week was a really hard week for me.

I had a cold. I had women's issues. I had a kid going in for her second round of chemo.

And, for some reason, facing this second round of chemo was much harder for me than facing up the first round.

I think it is because chemo side effects was no longer a vague idea. It was pretty concrete as far as Meres goes. I knew we would be facing days of nausea and jaw pain. And, who wants their kid to go through that.

Meres first chemo day was LONG. The staff had said it would be long, but in all of our combined figurings, we were 3-4 hours off. One of Meres' chemo drugs requires her to be well hydrated before they start it. Hydration at this level does not consist of drinking a few glasses of water. It involves hours being hooked up to a saline I.V. drip. Two hours before chemo, two hours after.

Thankfully, some other things are happening simultaneously with those 4 hours, or this would be an extra 5 hours or so, on top of chemo.

So, the long day ended up being twice as long as I thought. Even though everything went off without a hitch. Blood counts were fantastic. Everything went very well.

I was a weepy mess on and off that first day. I think it was a perfect storm of events. The long day. The anticipation of side effects. (which thankfully, were much more mild than last time. Nausea for several days, but still good eating. And the jaw pain was manageable with Tylenol. And she still was able to eat.)

The sight of my baby getting chemo. Which is crazy, by the way. The nurses suit up in special bibs and gloves when they are handling the chemo. There is the skull and crossbones motif on the bags. It is toxic. And I am allowing those toxic substances to go into my child. It really puts things in to perspective and kind of freaks me out. But, I also have peace that we have made the right decision.

But, here is the other thing. My support group at Gilda's Club kind of freaked me out, and put me in a not good place. We attend a family and friends' group. We are supporters of someone in our life who has cancer. A parent, spouse, child, friend. Well, three of the members in our group are facing almost imminent death with their person. They are getting ready to transition from the cancer support group to the grief support group.

And, things are ticking along quite well here. But, then I get scared. We have a good prognosis. Enucleation and chemo for retinoblastoma has a 95% cure rate. But, what if Meres falls in the 5%? What if I am clinging to this hope, and this doesn't end up being the finish to her cancer journey? What if she has to have more surgery and more chemo to fight cancer in other parts of her body? Do all those people in the support group look at us and think they were in our optimistic shoes once? Poor, deluded us?

The what-ifs are a horrible black pit.

I cried with the social worker when she asked how I was handling this. I cried on my own. I cried with Mr. Hippie on our date last night, when I articulated exactly where I was at. I'm crying as I'm typing this. And, I'm betting I will cry in the support group tonight.

I know God is gracious, and merciful, and good. I know He will be with us step by step, no matter what each step holds. I do know that. I'm not doubting it.

I'm just hoping, hoping, hoping, that the six chemo treatments are the end. That I don't have to take my child for anymore chemo treatments or surgeries. Radiation or labs. That I don't have to watch her vomit or cry as she is trying to eat. That I don't have to sit passively while the nurse hooks my daughter up to toxins that are supposed to kill the worse cells-the ones that could actually kill her.

Hope that the chemo is doing its job.

Resting in the fact that the MRI showed no cancer or metastasizing in her brain or other eye.

Grace to face today.

Vulnerability to say, I'm not strong in myself. This is a really hard path to walk. Maybe I'm good enough, but not necessarily good. Fine, but not exactly okay.

In case you were wondering.

Where We've Been, Where We're Headed

Oh.my.word!

It's been almost 2-1/2 months since I've last written here.

School starts tomorrow, and I'm not sure I'm ready. To be perfectly honest, I feel somewhat gipped out of a summer.

We've had a summer to beat all summers. It whipped past in it's urgency. It was survival mode, not thrive mode. Not survival of the fittest, because I sure wouldn't call us the fittest, though we have survived.

Thus far.

By the skin of our teeth. And the grace of God.

A highlight of the summer was hanging out for an entire week with my parents, siblings (8 of us!), spouses (5!), nieces and nephews (12 total, including my kids! Ages ranging from 14 to almost 2.). We borrowed some friends' house in near the beach. We divided bedrooms and living spaces and crammed us all in. We laughed, and ate, and played games, and hung at the beach, and talked, and had a really good time.

Mom and Dad with the grandkids

It was great.

We determined to spend this week together while my mom is still pretty healthy and strong. If you remember, she was diagnosed with ALS at the end of last year. She is doing okay. She is slowly going down hill.

We hired the photographer to document our family. (By the way, all photo credits in this post belong to Josh Rexford. He did an amazing job for my family. Check him out if you live in The Mitten.) We are going to cherish these photos forever.

Time and opportunities are not something you can get back. Once gone, they've slipped past forever.

My parents

If you can remember way back to the last time I wrote, I had mentioned that I had torn my LCL. I was finding out that day what our game plan was going to be.

Well, not only had I torn the LCL, but I also had torn my biceps femoral tendon off the bone in two different places. Talk about a spectacular injury.

The game plan was surgery, on June 29. I have a glorious 6" scar on the outside of my knee, and a graft of some sort inside my knee. I'm not too eager to delve much farther into who or what provided said graft for my healing and wholeness...

The healing process is a long one. I ended up being on crutches for 7-1/2 weeks. I was in a brace for just under 11 weeks-all told. I even got to wear all the way to high heaven compression stockings for the first 2 weeks after surgery. Day and night. Through several of the hottest days of summer. #notMyFavoriteThingEver

I felt free as a bird when I could finally lose my crutches. I can carry things again! Let me tell you, that is a key skill set as a mom. 

I will not run for 6 months from surgery, but I am riding a stationary bike, and using other gym equipment to strengthen my quad muscles and hips and calves and all the other things that have gone to pot in this non-triathlon summer.

I am so thankful for the progress I have made.

Brian and I celebrated our 15th anniversary earlier this month. I am so thankful to have this man to lead me and our family. To partner with me on this road of life. To be my best friend and my lover. He has really stepped up to the plate (and beyond) this summer. As chief cook and bottle washer, nurse, and bread winner. I love him and appreciate him so.

And our kids...

BMV is 14 and will be a freshman (shut up!) starting tomorrow! He is at least 6' tall-taller than me. He is still wearing braces and is still geeked about all things Star Wars and Lego. He has been plunking around on the piano this summer-picking out tunes by ear. He has some peach fuzz coating his chin, and is growing into a man. I really can't believe it.

Freckles is 12, and will be in 7th grade this year. He is an introvert. He paces in our front yard on the berm. Just thinking. I have no idea what about. He loves to visit our local military antique/surplus store. He wore his sailor hat non-stop for months, but I think he has given that up. I think...

Elsie, Elsie. This girl. She is 9, and will be in 4th grade this fall. She loves to read. She read at least 30 books this summer. She almost always is my first kid awake in the morning, and she will be tucked in with a book. She is not a night owl. She is the first one to fall asleep each night. The phrase still waters run deep describes her pretty well. She does not demand attention (unlike a certain someone in our family), but she needs it. And she needs hugs. 

And then Meres. What to say?

Two days before my knee surgery, Meredith was diagnosed with retinoblastoma, pediatric eye cancer. It is a condition that starts in the womb, but then takes a few years to manifest itself-though generally by age 5.

July 11, she had an enucleation of her left eye. (eyeball and optic nerve removed). She currently has a coral globe in her eye that is attached to muscle, with a place holder lens over it. She has been fitted for a prosthetic lens, which will be painted to match her other eye, and will track with her other eye also. She will get this beautiful new eye in another week and a half.

Meredith had an MRI the week of her enucleation. We know from that that all the cancer is out of her head. Her eye socket, right eye and brain are all gloriously clear of cancer.

We also know from 2 pathology reports, that the cancer went up her optic nerve a bit, and quite deep into her eyeball. These 2 circumstances make her more likely to get cancer again somewhere else in her body.

Which is why we made the terribly hard decision to do prophylactic (preventative) chemotherapy.

She will go through 6 treatments (the first of which is already completed!), each running 2 simultaneous days, and about 4 weeks apart. If all goes well, we will be done after the new year.

It is a fairly mild thing, but it is still chemo. And there still are side effects. Nausea, jaw pain, low blood counts.

We are hopeful. The prognosis is 95% no return rate. That is really good. We are choosing to rest in hope. And rest in the grace given for today, and today's joys and challenges.

Pray for Meredith's complete healing.

You know, I love this photo of my siblings and our kids. It is full of joy. Sunshine. Life. 

This has not been an easy summer, and I can't imagine that it is going to be an easy fall. But, once again I'm brought back to our priorities.

God. Marriage. Our kids. Everything else.

And, how can we glorify God through these relationships today? 

I love this photo too. I love my mom. I am so blessed to be her daughter, and to have her example.

Life this fall is going to be pretty bare bones. We are healing. So, we will be doing school, and therapy (physical and chemo-), and blood draws, and I will be cooking (because it is creative and it heals my soul), and we will be attending cancer support groups. All of us.

I will not be cleaning my house. Well, at least not more than a lick and a promise. I have hired on my cleaning team to come every other week for a while. 

We will be digging into Ancient Rome. From the pre-Republic days down to its fall. Whoot-whoot! I am so excited about this! I love learning, and I love teaching. We have lectures on Ancient Roman history, famous Romans, and the Roman emperors. Towards the end of the year we will do a series comparing Greece and Rome. And our fine arts this year is actually focusing on how to look at and appreciate art. 

The boys, in particular, have quite the reading lists. Augustine. Ovid. Gibbons. Josephus. Cicero. Virgil. It is going to be so interesting! At least, I think so. =)

Well, this a nutshell of where we've been and where we're headed. Hopefully I will have time in the near future to write more-about school and maybe about this whole cancer journey and about the faithfulness of God and the love of His people.

But for now, know that the Barefoot Hippies are still here.