Wednesday, February 25, 2015

How Much We Should Love Him


"Mommy, will you sit on my bed while I read my Bible?  Please?!"

This is almost a nightly request from Isabella.  She loves it when I sit there, while she reads her Bible to me.

Some nights, I'm just too tired.  Or I think I am. 

And I tell her, “Oh, not tonight, Baby.  Can we try tomorrow night?” 

But often I plop myself down next to her and listen.

Last night was one of those nights.

And as I lay there halfway dozing, listening to her read from Matthew, she suddenly stops. 

Lays her Book facedown on her chest and says,


"Ooh!  I am just getting so mad!"


She made an angry face. Sweet little lips pursed and her eyebrows furrowed.

Me:   “Why?  Mad about what?”

Isabella:     “How could they treat Jesus that way?!   How could they hurt him?”

Me:     “Because they didn't love Him like you do.”

Isabella:     “But didn't they know He was God’s Son?!”

Me:     “They didn't believe Him.”

My sweet Isabella, eyes tearing up and her sweet lips trembling.  Looking at me with sadness.   Like she might cry.

And after a few quiet seconds..

Isabella:    “I'm sorry!”

Me:     “Why!?”

Isabella:    “For crying.”

Me:     “Baby, don't be sorry!  Those tears are good tears. The best kind of tears.  The kind that make God happy.  Those tears are for Jesus.  Because you love Him.”

And now, she smiled very happily at me.  Eyes shiny and wet. 

She sat up suddenly and leaned forward – and hugged me hard, pressing her soft cheek against mine.



I think…. that is how much we all should love Jesus


Monday, February 9, 2015

My China Doll


I woke up a few minutes ago, after falling asleep in Sophia’s bed with her, her arms tightly wrapped around me, mine tightly wrapped around her.  She asked me to be with her and hold her until she fell asleep, so she would feel comforted. 

She and I have just spent two consecutive nights in the ER.  It’s been quite a while since we’ve made a visit to the ER. So long, in fact, I have begun to feel there is more of a breathing space between those dense, dark woods of her first several years and the bright, wide open pasture we have been enjoying.  Those years when it was the norm for us. 

She was born with a rare “textbook” condition – Congenital Lobar Emphysema.  She seemed fine initially, other than her prematurity – born at 32 weeks with Isabella, both girls weighing less than 4 lbs.- but by day 6, she couldn’t keep her oxygen levels up.  Extreme swelling of her right side necessitated an x-ray, which revealed the unusual condition.  Surgery was 4 hours later – and God was merciful.  She made it.

Having no experience at all with a child with one lung, and a floppy airway, Glenn and I took a crash course the first few years.  Her first major hospitalization was at 6 months old.  I remember trying to get her to nurse at the hospital  – which she was desperate to do, but could only do with short, forceful pulls, turning away after each attempt with frustration and deep gasps, flailing her arms and kicking her tiny legs.  Sweat dampening her entire body with the effort, while Isabella lay crying next to us on the vinyl hospital couch waiting for her turn.  Glenn at home taking care of the other kids – aged 3,4,6,8.  The kind nurses sent a young hospital volunteer to our room to ask if I needed help.  Of course I said, “No thank you, we’re fine!”

Looking back now – 10 years later, my ignorance is almost embarrassing to me.  How little we knew then.  How much we know now.  Yet still not quite enough.

She’s had innumerable x-rays, bronchoscopies, surgeries, breathing treatments, medications, and ouches. We’ve met intensely dedicated, compassionate, smart hospital people. 

Her last surgery was 4 years ago – when a cardiac surgeon stitched the pericardium of her heart to her sternum, that narrow bone at the top of your chest.  He had to do this to keep her lung from continuing to herniate over into the space where her right lung used to be.  Where the second saline implant sits now.  Doing this provides necessary structural support to her chest area, so the left lung won’t grow too large again and squeeze her still-too-soft airway against her spine.

It was especially during that time period we began to see some of the compassion and insight which God was using these experiences to give to her.  After one of our trips to Cincinnati Children’s Hospital for a scope, Isabella and Sophia were sitting together on the sofa in the family room.  Izzy was admiring the little stuffed animals and trinkets the hospital staff had given Soph while we were there that day.  She must have made a comment about them, because suddenly I heard Sophia telling her, “Izzy, it’s ok to want my things, but don’t ever want to be me.  Today people hurt me, and took me away from Mommy and Daddy, and it was scary.  So you can want my things, but just don’t want to be me.”       

She was just shy of seven years old.


But God is still merciful, and after so many years of hospitals and doctors, things are easier.  

Until something like now happens.  When I look at her and see her slender body working harder than usual to breathe. 

Because she has a cold. 


We’ve done all the usual things the past 10 days, watch for a fever, begin 4 hour breathing treatments, extra Vitamin C, Ibuprofin to prevent that dreadful pleurisy which she seems prone to get now, and monitor her oxygen levels.  But still it’s not enough, and we have to make decisions about what to do.

And then at the hospital, we have to make decisions about what to do.  Again.  Because the ER doctors don’t know her, I do.  And although they have a protocol for children with two lungs, they are unsure and a little intimidated about what to do with her.

I have never yet heard any doctor or nurse tell me they have seen a patient like her before.  Instead they say they have never seen anyone like her. 

So as she sits next to me, drawing quietly on a piece of paper, little pieces of clothing and accessories for our pencil people, and she tells the doctor we are “shopping for free”, decisions have to be made.  Hard decisions about IV’s, and ambulances, and what is the safest and best thing for her.

And suddenly, after 4 hours, things begin to change and we can all see that this time it is mucous plugs.  And they have finally moved themselves out of the way, letting her oxygen levels raise back up to normal, and slightly easing the retractions in her throat.  X-ray is clear.  Breathing treatment has been given.  Our options are changing.

I had already told her there was going to be an IV, which had brought uncontrollable, quiet tears from her.  Now, an hour later, plans had changed, and we could go home.   But the ER doctor had noticed her tears from before, and although I had evaluated that he was a pragmatic kind of man, he was moved by her.  He reached out towards her shoulder lightly as he left the room, saying, “It’s gonna be OK, China Doll.  You’re going home.”


I woke up a few minutes ago, after falling asleep in Sophia’s bed with her, her arms tightly wrapped around me, mine tightly wrapped around her.  I wanted to write this down because I want a memorial for her.  A memorial of God’s faithfulness to her, and His kindness to her.  Last night as we talked before she fell asleep, she said, “I wish I didn’t get sick.”  And I reminded her (and myself) that it was the trial God has given to her, and I sometimes wish I could take it from her.  But then she wouldn’t know so well His loving care for her, and how He is using every minute of every sick time to draw her closer to Himself, and grow her faithful and strong – in her soul.

I’m going back up to her now, my little China Doll.  I want to keep my eye on her tonight.  And my arms wrapped tightly around her.  Just counting my blessings.



Friday, February 6, 2015

Step by Step


I think from the time we started having children, we have had medical bills.  So it seems we have been paying medical bills, all the time, for a long time. 

There are always at least 3 or more medical bills we are paying at a time. We pay one off.  We accrue more.  It’s been a continual cycle.  Especially with a child who has had unique medical issues from birth, and has regular visits to specialists.  But she’s only one of seven. So the others have taken their turns at the doctor’s office and in the ER as well.  And even Glenn and I occasionally have something that pops up, necessitating a visit with the doctor.

But for the first time in almost 12 years, we are medically debt-free.  It’s huge!  We had a celebratory dinner the day I called and paid the last bill, just a few weeks ago.


Here you can see all the scribbles I made as we paid down one of the last bills we owed.  It was over $3500 initially!  But every two weeks, I made a payment.  Sometimes more, sometimes less, depending on how many other medical bills we were also paying.  I began to keep track of the balance, at some point, for visual encouragement. 

And when we paid it off, it was a tangible memorial for all of us, that step by step, little by little, God gives us the ability to accomplish big things, sometimes overwhelming things, in our lives.  And in the midst of it, we should not lose faith.


“Faith- the substance of things hoped for, the evidence of things not yet seen.”  Hebrews 11:1