Light

 

Tears stung my eyes while watching my youngest child singing the final verse of Silent Night, holding a candle near her sweet face. 

Have you ever truly thought about those last few lines?

Silent night, holy night
Son of God, oh, love’s pure light
Radiant beams from Thy holy face
With the dawn of redeeming grace
Jesus, Lord at Thy birth

I imagine a calm snowy night. You know the ones. Where you can almost hear the snow fall. 

And, the moon is providing just enough light to see your path. Where the air is still and the world has seemed to stop for a moment. I imagine Mary holding Jesus. Him nuzzling into her breast. His little fingers searching, getting caught on his own eyelids and in the blankets, and probably Mary’s hair. 

The soft warmth provided by the animals and the light from lanterns or candles creating a very cozy atmosphere. 

But, Jesus. Her Lord. Her baby. Her Savior. 

How would this all work out? 

There were so many unknowns. 

Have you even been in the complete darkness? The kind of dark where you can’t stop your eyes from opening wider and wider as you are straining to see ANYTHING? If there is even the tiniest bit of light, your eyes are immediately drawn to it. It’s comforting. You move toward it. The darkness cannot hide the light. Any bit of light destroys the darkness.

The night Jesus was born, a tiny baby destroyed the darkness.

In my darkest days, I considered giving up. I had truly begun to believe that the world, my family, my children, would be better off if I didn’t exist. I was in the darkest of dark places. But, I had just had a baby. That little girl in the picture above. She was my light. She was a good thing I couldn’t take my eyes off of. I was afraid that someday, she’d blame herself for not being worth living for. She may not have destroyed my darkness (that came later), but she was a glimmer of light that God provided to pull me through some of my darkest moments.

And grace.

Do you know what that word means?

Traditionally, Christians refer to grace as unmerited favor. 

An undeserved gift. Unearned preferential treatment.

My Evie.

You can find more of her story here, but the short version is that we were told we miscarried her. My body went through all the steps of a miscarriage. We went back for an ultrasound to make sure that my body had expelled everything and yet there she was. A beautiful, 13 week baby with a strong heartbeat. 

Grace. 

I didn’t deserve to keep her. Many mommas have lost their babies. But, she was God’s great act of grace in my life. My undeserved gift. My reminder that I am seen by Him. 

That’s why Grace is her middle name. 

It has been quite the journey with her. Her battle with epilepsy has not been a walk in the park, but God still shows us grace everyday with her life. 

No matter how dark things have been in my life, there has always been a glimmer of light. Sometimes it’s small. Sometimes it’s been blinding. No matter what, it cuts through the dark. 

There were days when I lived with my eyes closed, ignoring the light in front of me. Afraid it was too good to be true. Fearful that the good thing would be taken from me. Convinced I didn\"t deserve it. 

But His grace was too good. It reached into my darkness. That little light could not allow the darkness to overcome. 

His dawn of redeeming grace entered my life and was undeniable. 

Open your eyes, friends, and embrace the gracious Light and His redeeming grace. 

He’s there if you want Him. 

The Children's Hospital and a Road Trip!

We headed in for our Extended EEG at the end of April.

The goal was to find out what is exactly happening in her brain so that we know what to do next as far as testing and treatment goes.

I cannot say enough good things about the staff. You have to be a saint to work on an inpatient unit at a children's hospital and the staff at the hospital in Denver are no exceptions.

Fortunately, the Little Miss was able to keep herself busy most of the time and our frustrations were kept to a minimum.

Unfortunately, the neurologist told us, "She's kind of a mystery." So, we're on to the next set of testing.

But, this neurologist has a plan... and compassion... and the goal of making her well (as opposed to simply medicating her, like her previous neurologist did).

And, for that, we are grateful.

The Little Miss was also grateful that her Nonni could come play with her when mommy needed to talk to the staff.

(oh, and the campus was beautiful)

Only one day into the test, and she was worn out. The neurologist decided very early into our stay that continuing the EEG would not provide any additional insights into her case, so he let us go after a blood draw that they'll use for genetic testing.

I was pretty tired, too,... and also grateful that my mom was around.

The good news is that this neurologist has a plan. He really seems to care.
The tough news is that this is not going to be a short journey. Unless God chooses to heal her (which we're still praying for), it looks like this may be a long-term battle for her.

Having a sick kid is not easy. I would give ANYTHING to be able to fix her.
But, her little spirit cannot be crushed. She is able to laugh and find joy regardless of her circumstances. She had electrodes cemented to her head and chest and cords coming off of those electrodes which were all drawn into a box which she had to carry around in a backpack that was connected to a computer and what did she do??? She put the box in her backpack, put the backpack on, put on her super hero cape, and "flew" as far out into the hallway as the cords would let her, bringing a huge smile to everyone who passed.

Trying to shampoo out the cement when we were released

That's my girl.

When we got to leave the hospital.

She is only 2 and yet her spirit and personality speak volumes.

I was sharing how overwhelmed I feel by the fact that we may have a lifelong journey ahead of us and how it's going to affect each of us differently. My husband's daughter has seizures. The Little Mister will grow up with a sister that has seizures. Ev may never be allowed to drive. Our new daughter (coming in August) will never know life apart from a sister with seizures. It will effect what we do, how we play, maybe even how we eat. But my mother-in-law gently reminded me that this is her normal. It won't be weird to her or her brother or sister that she has seizures because it is their normal.

I hope that Ev's healing from God becomes part of their story, too, but if it doesn't, I hope that John and I can together show our kids that even though tough things happen, our family's "normal" is to trust that God has allowed it for a reason and to trust Him always.

I hope they don't see me mourn what won't be true in Evie's life, but instead rejoice over what is true... she is an otherwise normal, vibrant, affectionate, sweet, rambunctious, active, beautiful girl who brings joy to people.

This journey is hard. Sometimes I get weary in the unknown. Weary from the medicines, the appointments, the tests. But, we do have much to be thankful for.

Including people in our lives that allow us to be sad for her sometimes and grateful others.

There is no perfect way to handle having a sick kid. I could let myself get really bitter (and don't let me fool you... sometimes I really struggle!). I could just be floating on the "it could be worse" cloud. But, the truth is that some days are better than others. Some days I need grace for being bitter and some days I need to simply be in awe of the fact that she is a miracle.

I don't claim to have this figured out. 

I'm sure I never will.

But I am grateful for each day with her.

Even the tough ones.

I hope that when people look at us on our good days, they see "the peace that passes all understanding" that comes from God alone. (Phil 4:7)

And, I hope that on our bad days, they are able to see that we are human and need grace.

Not growing weary in the waiting...

I feel like this is my current challenge.

We're waiting on so much...
   ...waiting to afford a vehicle
   ...waiting to see if my husband has a job in a few weeks
   ...waiting to find out how to deal with the Little Miss's seizures
   ...waiting to find out if we're moving or staying where we are
   ...waiting to make holiday travel plans because of the previously mentioned reasons
   ...waiting to think about baby #3 because of all of this uncertainty
   ...waiting to find out about my dad's health
 
Those are all really big things for us.

But, I'm waiting in the little things, too...
   ...waiting to go grocery shopping to see how far we can stretch our food from the last trip
   ...waiting for the kids to start playing together more consistently
   ...waiting for a big snow to hopefully push animals down for next hunting season
   ...waiting to decorate for the holidays in case we are moving soon
   ...waiting to dust because, frankly, I don't feel like it!

People say all sorts of different cliche things, like "God can't direct your path unless you're moving," or "The only way you'll know if the door is opened or closed is if you try walking through it."

All of the big things in the first list are kind of out of our control. We can't take steps of faith in them. We are really just stuck in a place of waiting for others to decide our fate.

It's really hard not to grow weary of the waiting.

It's hard not to get bitter/scared/frustrated that we live a lifestyle that provides absolutely no security.

A friend of mine and I were recently discussing how great people of faith were often looked at as being foolish.

Abraham almost sacrificed his son Isaac.
Then they came to the place of which God had told him; and Abraham built the altar there and arranged the wood, and bound his son Isaac and laid him on the altar, on top of the wood. Abraham stretched out his hand and took the knife to slay his son.
              Genesis 22:9-10 (Read the rest of the story. It's a good one!)

David danced like a crazy man.
And David was dancing before the LORD with all his might,... Michal the daughter of Saul looked out of the window and saw King David leaping and dancing before the LORD...
              2 Samuel 6:14a and part of verse 16

Joshua was told to march around Jericho for a week straight playing instruments so the wall would fall when they hollered on the seventh day.
Then on the seventh day they rose early at the dawning of the day and marched around the city in the same manner seven times; only on that day they marched around the city seven times. At the seventh time, when the priests blew the trumpets, Joshua said to the people, "Shout! For the LORD has given you the city." So the people shouted, and priests blew the trumpets; and when the people heard the sound of the trumpet, the people shouted with a great shout and the wall fell down flat,..
              Joshua 6:15-16, 20a

Joseph married Mary anyway.
And her husband Joseph, being a just man and unwilling to put her to shame, resolved to divorce her quietly... When Joseph woke from sleep, he did as the angel of the Lord commanded him: he took his wife.
              Matthew 1:19 and 24

But, I think the truth was that they realized God had their backs.
That no matter what the world said, no matter how the world defines success, security, etc, that God is the one who is ultimately in control of the end game anyway.
I believe they had a peace about the fact that God was working in the details, in the stuff we can't see, behind the scenes.

Yes, sometimes He tells us exactly what to do and gives us what we need to do it.

But, sometimes He makes us wait.
     and wait.
          and wait.
                and wonder how He's going to make it right.

The people in those examples I mentioned didn't have the details. They didn't know how God was going to fix it. They just trusted that He would. Even if it wasn't exactly how they wanted it to turn out.

In those moments, we probably look foolish, because with so much up in the air, shouldn't we be doing something?!

I want to do what God has for me.
But I really don't want to do the things He doesn't have for me.

What if He is asking me to wait?
What if I tried to reconcile all of these things and ended up messing up His plan?
What if, by not being comfortable just waiting for Him, I miss out on something great?

So, for now, I wait.

and pray for peace.

and wait.

Because I know that if I let Him work it all out for us, it'll end up so much better than we could've orchestrated on our own.

It always works that way.

-kt

Even youths shall faint and be weary, and young men shall fall exhausted;

but they who wait for the LORD shall renew their strength;

they shall mount up with wings like eagles;

they shall fun and not be weary;

they shall walk and not faint.

Isaiah 40:30-31