Wednesday, December 28, 2011

Half full.

Half of my day my gut was in knots and I wrung my hands walking in circles and feeling like I was going to throw-up on something. Today was Samuel's CT scan. There were some frustrating experiences that kind of exacerbated the anxiety. It wasn't until after 3 in the afternoon that we got results.

Samuel screamed a lot today. We had to do an IV because he no longer has a CVL that we can draw blood from and push contrast through. So... that was painful. He was writhing, shaking, hitting, kicking and pushing. It's heartbreaking. It's frustrating. It makes me want to go punch a wall. But instead I rub my husband's shoulders as he has our son in a bear embrace to keep Samuel from moving as he is being poked with needles. The first stick didn't take... so guess what... you do it over again.

The problem started early on when the radiologist tech told Samuel that he would need an IV before she had anything to start one with. She wasn't ready or prepared. If looks could kill Mike would have slain that woman. Yeah, she really wasn't thinking. He started crying and getting hysterical... so much so that the tech sent us up to the clinic to have them take blood and start the IV. She wimped out.

We had arrived at the hospital at 8 this morning. It was 9:10 when we were seen by the tech. It was 9:45 when she sent us upstairs. It was almost 11 when the IV was finally placed. It was 11:30 when we had the CT scan. It was 11:45 when we saw the oncologist. And then after 3 for the results. My new favorite 3 letters N.E.D.... No Evidence of Disease.

This transition of resuming "normal life" after treatment has not been easy. It's confusing. So much has changed... and so much hasn't. Samuel still has pain. Because of the radiation... the scar tissue from where the tumor died... side effects of chemo... etc. Samuel has painful bowel movements. He cries and screams... and it's a mess. Trying to encourage him to use the potty is like asking your kid to hold their breath under water for 5 minutes. Torture.

Samuel's diet is not varied. We can barely get him to try new things. He gags and throws up so easily. His issues of oral aversion only got worse with his cancer diagnosis. His staples consist of dry instant maple brown sugar oatmeal, go-gurt, cheetoh puffs, applesauce, fries and Cliff Z bars (nutrition bars for kids). So beside wanting sugary junk like cookies or frosting on cupcakes there is not much else he will eat. I agonize over this. I know he needs proper nutrition. He gets a feed every night through his g-tube so I know he's getting the nutrients he needs but still....

I mean come on. How many of you have read about all the good anti-cancer foods out there. Broccoli, spinach, blueberries, etc. Heck, I wish I could just get him to eat mac n' cheese, chicken nuggets... something! I mean yeah, veggies would be a bonus. So hopefully over time I will slowly get him to take a bite of new things. Literally one bite. And go from there. In the meantime I might start juicing carrots and green veggies like spinach and cucumbers and putting it in his feeding tube.


Who  am I? This question echoes in my head as I stare vacantly into the mirror. Who is that person peering back at me? Vague thoughts bounce around.That unshowered person with no make-up.... when has she brushed her teeth last? Did she even fix her hair? Oh, yep, that's definitely chocolate smeared on her shirt... but hey it's complimented by the yogurt on the other sleeve. She looks tired. Is there a woman underneath all that mess? Yes. Buried underneath requiring deep excavation and overhaul... but I'm still there, somewhere.


Then there's the guilt that comes piling on faster than a plate on Thanksgiving Day. Should I do this? Should I do that? How do I care for the special needs? The regular needs? Which thing should I turn my attention to in this moment... the playroom that looks like it was blown up by a toy explosion. Kid whacking other kid with a block. the child in tears because a toy was "stolen". The spilled milk on the table. The banana and yogurt mush on the floor... the pile of dishes in the sink. The crying baby. The exhausted student. The homework. The laundry.

My bedroom that has somehow become the secret operating headquarters of every member in our family- piles of clean clothes in laundry basket, dirty dishes, broken toy, Christmas wrapping paper, half-eaten snack bar, box of items that I need to do something about, box of half-written Christmas cards.

Reminders of all that is undone everywhere I look. The phone calls that need to be made. The appointments that need to be scheduled. The child that needs to be listened to. My lap needs to be sat on by a minimum of two children at a time and an assortment of books ranging from my little pony to dr. seuss to thomas the train and the magic school bus are placed at my feet. Good thing I'm sitting indian style.

All that said, this may sound crazy, but I know this truth, I'm going to miss this one day. My kids are going to grow up. And they're going to leave... and have lives of their own. Wow. In 17 years Peter will be 18. And I know 17 years is a very short time. In 11 years Libby will be 18. 11 years. I've been in love with my husband for 10 years. 11 is not long. It's a blink. It's a breath. Inhale. Exhale. Time passes too quickly.

So instead of focusing on my disaster of a room... or all the things left undone I'm going to stop and savor. Savor the smell of my son's head... a mixture of banana and sunshine. Enjoy the beautiful drawings and pictures my daughter makes for me. The monkey antics of a little boy who desperately wants Mommy's attention. The unspoken communication through the raise of little eyebrows while a hand is jammed into a mouth.

This winter break has been so good. I've just been enjoying my kids. Enjoying reading to them. Playing with them. Singing with them. Dancing with them. Feeding them. Bathing them. Talking about Jesus with them. And I think I'm learning that at the end of the day it's more important that they know how loved they are than how pretty and put together Mommy is or the house is. I think they like my smile and snuggles more than make-up, style and a cold tone or harsh rebuke.

You know when Mama ain't happy.... no bodys happy.

So, adjust my attitude. Enjoy the dirt. It will pass. One day my kids will be out of the house and it will be clean. But I think secretly I hope it's never perfect. I hope that I have grandchildren mucking it up for me. I don't want to be so caught up in my own little world that I can't let life enter. Life is messy. It's complicated. It's beautiful. It's horrible. It's painful. It's transforming. It's full of CT Scans and medical appointments. It's full of pancakes and syrup. It's mopping the floor. It's watching your children make up knock-knock jokes that make no sense whatsoever but you're laughing so hard because they are hysterical. It's watching the performance of a world-famous hoola-hoop artist. It's broken crayons and coloring outside of the lines. It's grocery store shopping with five kids by yourself. It's running out of toilet paper. It's cooking the perfect turkey. It's burning the cookies. It's putting on a band-aid after kissing owies. It's music at night. It's belly laughs while watching NBC comedy shows. It's apple with peanutbutter. It's roses with thorns. Somedays I'm walking on broken glass. Somedays I pretend taking a shower is time at a spa. It's winter's bleak gray sadness with the promise of spring. It's burning fevers and Tylenol. It's a pair of red high-heels. It's a perfect quote from a book that captures your heart sentiments. It's warm cozy blankets with hot cocoa with peppermint whipcream. It's writing your heart on paper... or at least on a screen.

Congratulations. If you have read this far you should be proud. You have read the ramblings of a tired, borderline crazy Mama. Thanks. I think I've said enough for one day...

Monday, December 19, 2011

Christmas reflections

Holidays have this way of bringing out the best and worst in people. I'm constantly amazed by people's hostility and rudeness and also overwhelming kind-heartedness and generosity.

Some people are happy. They are in a new relationship, just got married, got a promotion at work, had a healthy new baby added to the family. And others are devastatingly sad, juggling grief, loss, and painful memories. Others are bewildered. Just tired, overwhelmed, and burnt out.Whether it's loneliness, a loss of job, family member or friend, or just plain exhaustion the holidays tend to exacerbate the situation.

The days run short. The nights run long. The bills stack up.

And then all the events started. School winter programs. Holiday cookies. Reminders to provide hot cocoa for the class event. Pajama day at school. Bring this. Buy that. Remember this. Blah.

I don't mean to sound scroogey but I'm kind of over the chaos of the holidays. People dragging whining children in stores (yes, I still take them with me). People buying meaningless gifts with money they don't have for people they feel obligated to give something to. Silly, isn't it?

Is it as mad as people trampling others so they can't get the best black Friday deals? And we think the Spaniards are crazy for their bull runs.

Here's the thing. The question you have to ask yourself.

What am I celebrating for?


Really think about it.

If your answer isn't celebrating Jesus, God who took on flesh, Saviour of the World, then well, I guess all the other stuff makes sense. We're trying to fill empty spaces with air. Meaninglessness. Nothing else satisfies.

Not Christmas presents, cards, candy, parties, lights, decorations, and not even people. Nothing will truly satisfy the cry of the heart.

I read a book last night to my children called Goodnight Jesus, or Nighty Night Jesus. Something like that. They didn't understand why the donkey would have been surprised to find a baby in the manger. I had to explain... this is where the donkey would have gotten his food. This is where the animals would gather to chow down.

The King of Kings. Creator of all. Savior of the World. Emmanuel. Come to sleep in a feeding trough.

Born of an unwed, virgin teenager.

A humble, hungry, crying infant... dependent on his mother for nourishment, warmth and provision.

And it's not just the birth, but the life, death, and resurrection that gives us Hope. God has restored us to Himself through Himself. Pretty Awesome to think about.

So this may not make everything seem good or rosy. You'll probably still get annoyed if someone cuts ahead of you in line or bumps into your shopping cart. But the good news is that God came for us. He came into a smelly stable so that He could save wretches like us. He came to bring us to Him.

I'm still frustrated with my kids. Contemplating what I will make for dinner... spaghetti or waffles. Somethings don't just magically change.

But I hope that as I reflect on what I'm celebrating that my heart would change. That my heart would long to love others and share kindness and friendship... knowing in and of themselves it's not good enough but when your heart is filled with the hope that comes from Jesus Christ may it spill over to to every other part of me.

Sunday, December 18, 2011

Happy Endings.

Last night was a normal night. Preparing dinner. Getting kids into bed. Doing the teeth brushing ceremonies. The pajama dance. And bedtime reading ritual.

And then I got a message. "They are okay. Kristin and Madison were in a car accident." My stomach dropped. The love I feel for my sister-in-law and my baby niece is intense. If things weren't "okay" I would have been undone.

It's moments like those that I recognize how blessed I am. And how much I love.

The thing I appreciated about how I was told was the first sentence. "They are okay." I know the end result before I even knew what happened.

It's kind of a reminder of where I'm at. I have the promises of God and the hope of Heaven to propel me forward. So the bad thing that happen now are okay. I know the ending.

I wish I could remind myself of this reality regularly. In the end all will be well. This isn't the end of the story. We're caught in the middle right now.

Can you imagine watching a movie that is horribly intense and sad... with tremendous suffering. And you were left hanging not knowing what the ending is... but what if you were to watch that same movie and you knew that the ending was not only good but redemptive, beautiful, and transforming. That is our story.


If our hope is in Jesus Christ, our Savior, then we know the ending. And it's not just okay... it's AMAZING. Beyond what we can imagine. We will live with God for ever. No more sin, sorrow, suffering. No tears of grief. No more loss. No more jealousy. No more comparing. No more gossip. No more murder. No more hatred. No more crime. No more frustration. And more than the absence of pain and the consequences of sin... but the presence of God. He has given us Himself. All things will be made new. And we will be HOME. The place where we were made for. In the presence of the One who made us, loves us, redeems us, and transforms us into His likeness.

It's the ultimate ending...

Thursday, December 15, 2011

In the Storm

I don't know how good you are at reading between the lines so let me spell it out for you... I'm not doing well right now. My mind has been tossed to and fro and I've been shaken to my inmost parts. I feel like a fragile bird's shell. The slightest pressure breaks me and spills me out. And it's messy. Very messy.

The intensity of life has been building over the years and I'm so worn out. I no longer have a shell to protect me. My skin is vulnerable. No scales to cover or shield me. I'm completely exposed. Raw. Pathetic and broken.

I have gone to some of my close friends and sought help. So much good encouragement. My Grandma reminded me to listen for God's answer. And this morning in the middle of cleaning the kitchen I heard Him. Nothing audible. Nothing life-shattering. But a simple prompt in my heart, "I've already lived life perfectly. You are released."

Whoa. You mean I don't have to keep trying... I had found myself saying over and over lately, "I just can't do it anymore." But this can stop. I don't have to do it anymore. I can surrender myself to Him and say, "You do it. I'll stop trying."

God is showing me that any good thing that's going to come out of my life, my heart, my family... it's going to be His. He's the One who is going to make it happen. He will make it possible. He will receive the glory. It's not me. It's not my attempts to survive or even venture to thrive. When people will look at me and my life they will be aware that it's not anything I've done. It's God. It's Him preserving me. It's not my work. It's not my frail efforts. It's His power of the Holy Spirit at work in me.

I realized this morning that I had lost my confidence because I had forgotten who I am. I had been constantly second-guessing and doubting myself. I would over think things to the nth degree. But when I am reminded that the same spirit that empowered Christ is dwelling within me... and I can trust Him to lead me, guide me and carry me through this. My friend Amy reminded me of 2 Corinthians 1:3-11


fBlessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too. If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort.
For we do not want you to be unaware, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. 10 He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. 11 You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.

(Bold and italic emphases are mine)

I can relate to being so burdened you despair of life itself. That has been a struggle of mine lately. Yes, I've been in a very dark place. But my hope is also the same... that I wouldn't rely on myself but on God who raises the dead. He will deliver me from myself. That same power that raises from the dead dwells in me.

Thank you Jesus that I don't have to be perfect. I don't have to have it together. I don't need to pretend I'm okay. Thank you for your life lived perfectly and for your sacrifice on the cross. Thank you for forgiving me of my sins and for making me into a new creature. Bringing the dead back to life. Thank you that your Spirit lives in me. You are bigger than the mess I am. You will make all things new.

Wednesday, December 14, 2011

I'm lying in bed waiting for the alarm to go off. The reminder that my day needs to officially begin. I didn't sleep well last night. I couldn't fall asleep until after 1:30. I could hear Mike getting up at 5:30 to wrangle the kids into their clothes and see them off to the bus. 6:55 my alarm reminds me to take some action. So I set my alarm for 7:15 and I lie in bed sick to my stomach with anxious thoughts swirling in my head. Thankfully my son comes to bother me a few times so I can't fall back asleep. He needs me to help him open his wrapper on his breakfast bar among other needs.

My eyes sting and feel itchy and scratchy. My throat burns as it has for almost a week now. And I lay in bed unsettled, restless and wild.

I don't want to start this day. I want to fall asleep with the blankets over my head and just pretend it all away. Maybe I don't need to be responsible this day. But I do. And I need to get ready now. And yet I keep typing.

Maybe if I type long enough I will gather some momentum. The cold doesn't help much. It makes me want to stay warm under my covers, putting off that which needs to be done.

And yet God is still God even of this day. It's not a mistake. It's not by chance. And this is a day I can rejoice in. Even with all the mundane and not so mundane that is set before me.

My stomach is still unsettled. My thoughts are somewhat scattered. But I am reminded that the God who never sleeps is watching over me. He knows my anxious thoughts. I pray for His peace that surpasses all understanding and I set down my computer to ready myself for this day. This is the day that the Lord has made and I will choose to rejoice and be glad in it.

Tuesday, December 06, 2011

Adrift

I've been weary. The kind of weariness that almost takes on a dream-like quality. I find myself trying to do things but I keep going slower and slower. It's like I'm moving through mud... or maybe even quick sand. Because not only is it hard to keep pressing forward but I find myself sinking down, down, down. Almost afraid that I will soon be in over my head.

Tomorrow (December 7th) would have been my beautiful sister's 29th birthday. And she's not here to celebrate with. She's having the best party imaginable. In Heaven. With Jesus. And her son. And those who have gone ahead. Lucky.

In the meantime I'm still in this sinful, painful, broken world. And frankly it sucks.

I find myself going through the motions. doing laundry. Washing dishes. Preparing meals. Giving kids their medicine. Reading books. Exercising. But I feel so on the brink of breaking. Imploding. Collapsing in on myself.

Even the normal and mundane tasks feel more than I can bear. a fatigue has set in that I can't shake. The lethargy grips me before I even rise in the morning. I feel tired and overwhelmed before the day begins.

I know it won't always feel this bad. And I hold onto that in the midst.

I'm difficult right now. Moody. Irritable. Raw. Quickly hurt. Quick to be angry. I'm so frustrated with myself. Because I'm not behaving how I think I should. I should be kind. Patient. Gentle. Loving. Etc. But I'm not. And I can't even be better. I can't do it on my own. That's where I fall on my face and scream, "Jesus help me. I can't do this." And somehow, miraculously, I find myself getting through the day. And another day. And through the week.

Samuel's scans are on the 28th. Yippee. Something to dread through Christmas. I'm trying to put the anxiety aside but it keeps popping up like a buoy in the ocean. I try to shove it under the water... and I succeed for a little while and then bam. It pops up again.

So, yeah, I'm not a cheerful, uplifting person to be around or read right now. That's okay. God is big enough to hold on and hopefully you can bear with me during this rocky time.

A lot of people have asked me how things are going right now. That's hard to answer. We are extremely grateful that Samuel's life has been preserved. He still has bouts of pain. Lot of late effects from chemo and radiation. Lots of big adjustments. We are still trying to figure out what life is outside of "living" at the hospital. Mike is proactively looking for work. We are still trying to pull things together... and it still continues to be a struggle. One day at a time. We hope that we're on the upswing of things. We know life has been harder at various points then it is right now but we're still struggling under the pressure, stress, intense suffering of many years.

So please be praying for us and asking God to uphold us. We are hanging in there... and sometimes that's all you can do.