Saturday, November 26, 2011

A few thoughts after the fact.

So how do you follow up a post on Disney?

I've had so much to say... so much inside my head that I've been wanting to verbally express and a lot that I'm trying to process... being tongue-tied has left my post a blank. So instead of carefully composing I'm going to slap my paint on a canvas and start somewhere. It might be messy... less than ideal... but it's real.

Our time away was good. The kids did an amazing job traveling and we really enjoyed watching them have so many new, different and exciting experiences. It was a blessing to be able to go somewhere where we didn't have to worry about the cost of parking, park admission, hotel costs, etc. And with a family of 7 and with our friend Alexis to help us... well, 8 people... it's a lot.

I found myself so grateful yesterday... so much God has given us. Above and beyond what we need. I'm a rich woman indeed. The Lord is truly our provider. And He is a giver of good gifts.

I also found myself heartbroken... and outright weeping. I missed my sister. I found myself in the presence of many sister relationships yesterday and it reminded me of how much I am missing with my sister gone. I was thankful that the relationships reflected were good. That they were sisters who love each other very much. But I missed Libby. And I felt a little lost. And it hurt so bad.

Things are not right here on earth. I shouldn't be surprised by the continued brokenness and that things are not made whole yet. But I am. And it catches me off guard. Like the moment when you know you are falling and you try to catch yourself, but it's too late... all you can do is maybe use your hands to help cradle your fall. Your palms end up scratched. The impact is quite jarring. The thing was, I didn't catch myself falling.I found myself on the ground. I didn't know why I was hurting til after the tears already began to spill down my cheeks.

Grief catches me unaware. It's a suckerpunch. It comes out of nowhere. It hits hard and fast and almost always a surprise. There's no time to think, react or respond... it smashes into me like a bumper car, crashing ... and I'm left with whiplash.

I don't understand my life at times. I feel torn between two worlds. There is the "normal" world or maybe I should say "ordinary" or "average". People with typical families. They don't have kids with life-threatening illness. They have problems... and I'm not downplaying the stress or the suffering of the daily wear and tear that life brings... but it's different. In this world I find myself trying to relate and find myself grasping and missing the connection so often.

E.G. I'm at the YMCA today and this is a real conversation between me and one of the attendant caregivers at the  play area.

          Me: "Can you please try and remind Samuel to use the restroom? He's in a pull-up but he needs to be reminded....
           Caregiver: "Of course we have lots of kids in pull-ups."
           Me: "Well, he was pottytrained... it's just his cancer has made it hard...."
   A minute later... talking about Michael with same attendant.
          Me: (smiling at Peter in the baby section for non-walkers) "I remember it took so long to get     Michael out of the non-walking area..."
          Attendant: "Lots of kids walk late..."
           Me: "Well, Michael walked late because he was a preemie and has cerebral palsy... We're so thankful when he started walking...."

Why do I try and explain? Why can't I just shut up and nod to the 18-19 year old who thinks they're talking normal parenting jargon with me? Why can't I just drop it? Why do I have to show how freakish our life is... exposing it like some horrible scar that I should have left covered up. It's the reality of my life...

Sometimes I'm so damn stupid.

My attempts to want to be honest tend to get me nowhere in those kinds of settings. I usually can be quiet about it. Today I wasn't. It's not like anything I said was untrue but I feel as if I said something shocking or shameful... something that made everyone uncomfortable. Like breaking a holy moment with profanity.

And then I'm mad because of the hot shame that burns my cheeks. I shouldn't be embarrassed about talking about my life.

I get frustrated, and jealous and annoyed at the Mom sitting across from me in the doctor's office. Her toddler daughter looks like the picture of health across from me. But the Mom is fretting and worried and I just want to shake her and say, "She's not going to die from this cold. Be thankful it's not cancer." Aaaaagh. Where does this come from? It's a normal thing for a parent to be concerned about their child. I don't want this lady to experience the same suffering I've walked through.

And then there's the other world. The world where chemo and radiation are a normal part of everyday conversation. Where "scans" makes your heart race and you discuss the pros and cons of anti-nausea meds. Or the world in which the child is deformed. Unable to stop their hands from becoming bent and clawed... or shaking their limbs or twitching their heads. The world where people look on in pity... or disgust... or just look away because it's too painful too look. I've seen those who have it worse than me. I've seen their exhausted hollow faces. I've seen them try to protect their child bound to a wheelchair from the cruel world that surrounds them.

And I bounce back and forth between these two worlds. I feel like a ping-pong ball being sent back and forth... to and fro. And I don't know how to relate... and I don't know how to acclimate. And I know that both these worlds have suffering. And both these worlds are broken... and I don't know where I fit. And I don't know what to say. And in one world I'm a personal reminder that bad things happen... and in the other that they're not alone... we're in the same boat.

This division wreaks havoc on me... mentally, emotionally. I feel frayed and worn. I see that I have so much to be grateful for... but get angry when others aren't quick to be thankful for their circumstances. Who made me the gratitude police?

I found myself in Florida experiencing increasing tension between the two worlds. We would be at Give Kids the World... staying with other families who have children with life threatening illnesses. The place where all of us "odd-balls" are normal. Where it's just as typical to see a child in a wheel chair and where special needs are seen as typical needs.

And then to go to the Parks and be bombarded by the "normals". Aaagggh. It was making me crazy at times. Kids screaming and falling apart with the "gimmees" and the demands of children gone wild around us. I could see some people give us questioning looks as to why we got special fast lane privileges... It made me want to say... well, you can have this privilege too if your child gets cancer.

This desire. This "need" of mine to be understood. And even accepted. It's the cry of my heart. But I am gently reminded by God. Only He really understands. Only He gets it. He knows the intimate details of all my circumstances... all my life situations... He knows the depths of my heart and the secret hurts... He knows all the wounds and scars I carry. Nothing is secret from Him. He longs for me to bring myself to Him... all of my imperfections and worries and heartache. And even as I groan in this earthly body.... even now, Jesus is interceding on my behalf. Praying perfectly for me... And He loves me and He knows me.

And so I rest in that tonight, I am loved and known by the Great I Am. The One who made the stars and formed the galaxies also knows the intricate details of my heart. And although I collide in these worlds that feel at times like night and day... I know God is in control- He hasn't changed. I belong to Him. He is my hope. This world is not my home. And One day ALL things will be made new.

Monday, November 14, 2011

Best of Friends.

Libby and Samuel are truly best of friends. I am so thankful for their love and affection for each other. They are sensitive to each other, aware of each other's feelings and how the other is doing. It was really hard for Libby when Samuel was diagnosed with cancer. She had to adjust to a new school, new teacher... and no little brother to walk alongside her... She was so worried about Samuel dying and struggled with being unable to express her feelings and concerns. I'm so thankful and blessed that they love each other so much. I'm grateful that we have now... over a year later, able to enjoy seeing them in all their sibling-ness. Playing and talking, pretending and laughing with one another. It's such a gift.

Thursday, November 10, 2011

Wednesday, November 09, 2011

Mike's Message.

Mike spoke last Saturday night to Access our Church's Singles Group. You can listen to him speak here.

He did a great job. He discusses Suffering and our testimony of our life together and specifically with Samuel's cancer. He also talks about Psalm 41. I highly recommend listening... it helps you understand where we're coming from but also is a good exegesis on this Psalm.

Isn't Peter precious? I can't believe he just turned one on Monday. Happy Birthday Peter!

This video was taken when he was just a wee little thing. Shortly after Madison was born!

Okay, whoops! Just realized that this is the video of Madison crying while I'm trying to film Peter. Kind of funny.... Sorry Kristin! I promise she wasn't always crying like this :)

Tuesday, November 08, 2011

Taking the Road Less Traveled.

Often I find myself when I drive thinking of the poem by Robert Frost "The Road Not Taken". The roads I take on a daily basis greet me with green. Trees are everywhere. Now they're becoming colored in scarlet, orange, and brown. And becoming bare. Shedding their layers and showing off their long limber physiques. I love the drive that I take. I love the roads I choose to venture on everyday. Living out in the country might take longer to get places but it's almost always a scenic path and peaceful. I have plenty of time to think, listen to music or NPR or books on tape. Always time for conversation. The kids are used to being in the car for extended periods of time. These are my roads I travel... from home to the front of the driveway :)

The Road Not Taken- Robert Frost

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference. 

Friday, November 04, 2011

Help Us Whip Cancer.

A friend put together a fundraiser for Samuel. It's a pampered chef show where 25% of sales will go to his fund. If you are interested in purchasing go to

Click on shop online.

And purchase. I am your host: Jennifer Napier if you need to put it down.

Any local orders I would be happy to arrange drop-off/pick-up of your order.

The guest special is if you spend $60 you receive a cookbook or bamboo kitchen towel for free.
If you spend $100 you get to Choose one cookbook, Bamboo Kitchen Towel, Easy Read Measuring Cups or Smooth-Edge Can Opener FREE

Slow down.

Having a quiet moment before I burst into a flurry of activity. Trying to slow myself down. I'm so tempted to rush, rush, rush that I'm  not even savoring anything of my life. I don't like it when I live from event to event or one "to-do" to the next. I don't even appreciate what I accomplish... I gulp down some caffeine and push myself to the next thing. Sigh.

Why do I measure my productivity to my happiness... and even worse- to my self-worth. I forget at times that I am valuable even if I just sit and read a book. I am valuable even if my to-do list is not touched. I am valuable even if I screwed up really badly. BECAUSE I am valuable because I am in Christ. Because I was bought by His precious blood.  Because He says I am fearfully and wonderfully made. Created in His image. A daughter of the King.

So as I sit and ponder and think and write I just want to embrace the truth like a warm blanket on a cold morning and wrap it around me. I am valuable because I am His.

When I get ready to leave and do my next action for the day may I relax, take a deep breath and be at peace. May I be aware of Jesus going with me. Planning my day is something I love... but only He knows what a day will hold. So I give it to Him and surrender.

Like I prayed over my daughter the other day, "Jesus, help us to see the good things you have for us in this day... and thank you that even in the rough things, the bad things that happen, that you are there. You promise to never leave or forsake us. Thank you for this day!"