Saturday, March 31, 2012

I am the Emma Whisperer

It's a strange thing to be proud of, but Emma has an ear infection.

I'm proud because we caught it. 

On Thursday night, Emma had a rough night's sleep.  No other symptoms, no fever, just up whining a couple of times.

So at 9 am on Friday morning, I called the pediatrician.  I told them that she needed to be seen and that her only symptom was that she was whiny.

I am SO blessed that my pediatrician knows that when I call and say that, I'm not crazy :)

They couldn't get her in until 3:30.  By noon, her eyes looked awful.

By the time we got to the appointment, it was obvious that she would need some eye drops.  The doctor looked her over and declared that she'd need drops for her eyes and an oral antibiotic for an awful ear infection.  It really stinks that her ear infections are usually totally without symptoms ... remember the facial paralysis from an ear infection? 

I know that it's crazy to feel a strong sense of accomplishment, here, but when you have a non-verbal child with a high pain tolerance, catching an ear infection before it leads to something worse feels pretty darn victorious!

Thursday, March 29, 2012

Beautifully boring

I took my kids to the Children's Museum this week and we had a lovely time.

Both my three year old and my five year old loved playing at the water tables.

In an exhibit appropriately named "Grossology", Charlie climbed on a climbing-wall modeled after the human skin.  I think that's a pimple under his left foot ...

And honestly, the only heart-breaking thing that happened was this: in an exhibit about how people make stuff, there was a sign that said that the videos were inspired by Mr Roger's Factory visits.  I overheard a child ask, "Who's Mr Rogers?"  So sad.

But no one was mean to either of my children.

And Emma was not in pain, so she actually got down off my hip and explored.

It was so wonderful

I'm not sure if it's annoying to everyone that every little normal day is a miracle for me.

I hope I'm not too sentimental to be believed.

But I must have looked like the biggest goof-ball in the building, watching Emma play with a HUGE grin on my face :)

That's all.  Nothing profound.  Just beautiful, holy, not-unappreciated moments.  In another life, I might have thought them boring.  I am so blessed :)

Wednesday, March 28, 2012

It happens

You know ... stuff.  Stuff happens :)

It's funny.  I had a morning this morning that should have been a bad morning.  Emma's feeding bag exploded on me while I was priming the tube ... I'm trying to remember a time when I didn't hate the smell of vanilla ... I had to change my clothes before the kids were even awake.

But I had a really very good day today.

I'm certain that God is using his Word to remind me of what an attitude like that of Christ should look like in my daily walk.

How can a young man keep his way pure? By living according to your word. I seek you Lord with all my heart, don't let me stray from your commands. I have hidden your Word in my heart that I might not sin against you... Ps 119

And even if I read his Word right away in the morning, I can forget what I read so easily.

So I just wanted to share a resource that's helping me

This morning I read Colossians 3

Put on, then, as God's chosen ones, holy and beloved, compassion and hearts of kindness, humility, meekness and patience ... and above all these put on love.

Seeds has some good Scripture songs that are helping me hide God's word in my heart.

Because it's hard to be grumpy when you are humming about being chosen and loved :)  It's a good reason to lean into the Spirit's fruits of humility and patience. 

Monday, March 26, 2012


Yes, I know, I've neglected the blog again :)

But seriously, if you were on the beach in Florida with your family, would you blog while you were there?

Yeah, me neither :)

Thank you, Nana, for a wonderful trip!

Wednesday, March 14, 2012

Something I want you to know

A CdLS friend of mine made a comparison that I thought was worthy of sharing and writing about. 

She said that being the mother of a medically complex child is like being a knight standing guard on the castle wall.  If you hear even a small rustle in the bushes, you have to check it out because very often it could be something coming to attack your treasure.  Sometimes it's just a bunny darting through the brush, but you've faced the enemy enough times that you know you have to check it out either way.

So when Emma's pediatrician wanted us to get another opinion from a different cardiologist a few weeks ago, we had to get it checked out.  It was a bunny that time, but that doesn't mean that we didn't have to go.

In comparison, having a medically typical child is like working in the garden.  If you hear something in the bushes, you ASSUME that it's a bunny.  It would be ridiculous to treat every little cough as if it's a medical emergency because MOST of the time, it's nothing.  In fact, if you went into the bushes with guns blazing every time you heard something, you'd be considered a crazy person.  It's just a bunny.

(Hear me well on this. I did not just say that, if you don't have a child who is medically complex, your life is easier than mine.  I cannot imagine what it would be like to be, for example, a single mom, or a wife wounded by infidelity, or the mother of a soldier in Afghanistan  .... or ... or ...  We all have our own struggles.  I'm writing about mine.  Follow the analogy.  It's about medical care for your children and nothing else, I promise)

There are things that are hard about standing up on the wall.

The first is that, very often, we look ridiculous.  When we've chased a bunny, those of us who stand on the wall don't feel foolish.  We feel relieved because we did what we needed to do and it turned out that there was no threat.  But we wonder if our friends who aren't standing on a wall think we made a big deal out of nothing.  Because I remember before I had Emma, I chased a few bunnies with Charlie and later felt silly.  We worry that we will exhaust our friends by telling them about every battle, but we need your support more than you know. 

Second, we know that even those in the garden still have to chase away some snakes sometimes.  Your daughter needs her tonsils out, your son broke his arm.  I need you to know that there are two things NOT to say to your friends on the wall when these things happen.  First, do NOT act as if this is the worst thing that could possibly happen.  Cry.  Worry.  Offer Popsicles.  And then realize that it will be ok.  But second, and more importantly, do NOT act as if we can't relate.  Telling me "I know this is NOTHING compared to what you go through all the time" is not good for you and it's not good for me.  I care about your snakes just as much as you care about my fire-breathing dragons.  So don't you dare assume that I can't bring a meal for a mutual friend who is going through a crisis just because "I have too much going on" 

Because a snake crawls up on our wall occasionally, too.  And honestly, that's the third thing that's hard about standing on the wall.  We forget what to do when we see a snake.  My medically typical son has been complaining for about a week about his skin hurting.  I brushed it off, telling him that he needed to do a better job getting clean after swimming lessons.  It wasn't until yesterday, when we left the doctor with a prescription in our hands, that I realized that I had been reacting to that snake incorrectly.  He's fine.  He will be fine.  But I do visit the garden sometimes and it takes me a minute to find my footing when I do.  So please have patience with those of us who live up on a wall who may be also trying to be the best parents we can be to our "other kids," too! 

And by the way, don't pity the "other kids."  Their life is richer than you can imagine :)

Because you know what?  I am not miserable on the wall.  I have made myself quite at home here.  Charlie and Josh live with me up here, too, and we've decorated and found comfortable chairs and laughed together and do not live a bad life up here on the wall.  It's just different, and I wanted to share that.  But it's where God has called us to be and we feel honored to guard such precious treasure.

Wednesday, March 7, 2012

Psalm 40

Many, O Lord my God, many are the wonders you have done.

she wanted to sit in big brother's lap for the dolphin show at the zoo.  love :)

The things you planned for those who trust in you, no one can recount them all.

her surgeon just said we're all better!  no more j-tube!  we're back to "normal" with just the g-tube :)

Were I to speak and tell of them, they would be too many to declare.

beautiful girl

I speak of Your faithfulness and Your salvation, I do not conceal Your love and Your truth.

I love good days :)  We've had several in a row and I'm just so thankful!  The Lord has done great things for me and I am filled with joy. 

Monday, March 5, 2012

heart update

It feels so good to be told to go away! :)

Once again, we've been told Emma's heart is fine.  Different, but fine.  Praise God!

The nitty gritty is that one of her "normal variants" caused a cardiologist to think she had mitral valve stenosis (she has a left superior vena cava, if you really want to know:)).  But the cardiologist on Friday watched Emma's blood flow for awhile and decided that her blood flow in her heart is not consistent with anything wrong.  He doesn't even think she has a PFO.  He just thinks she has an innocent murmur.  He said he can see why the first echo was read the way it was given the unique way her heart is put together, but he said that he's confident that there's nothing to worry about.

He also said that the slow heart rate is probably due to breath holding during anxiety.  He didn't see it at all on her 24 hour EKG.

So we need another echo in THREE YEARS, but until then, we don't need to see him again.  YAY!