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. 

An Open Letter...

to all my friends who don't have medically-fragile children,

   First, let me start by saying I miss you. This stage of life we're in, raising tiny people, can sometimes feel like a run-out-the-clock (until bedtime) sort of situation. I know we're both busy. I know life is crazy. It doesn't make me miss you any less. I think about you more than you know.

   I realize I am MIA from time to time. And, I know there are times you take that personal. I'd like to ask you to take pause before you let it hurt. It's not intentional. I promise. Sometimes I can answer your text right away. Sometimes I open it and immediately have to drop my phone and run. And, unfortunately, I never know which one it's going to be.

   I need to apologize. I know that there are times it seems like I think I'm superior to you because I'm going through something you can't understand. I'm sure I've unintentionally given off the vibe that "I know your life is stressful, but look how much more stressful mine is..." I also know I probably seem selfish because of how often I talk about my family's needs. You are probably tired of hearing about how hard my life is or how painful it is to watch my child go through this or how frustrating insurance and doctors and big pharma are. I'm sure you are tired of hearing the same prayer requests at every church service or prayer meeting (and if you're not, that's because I'm afraid you are so I don't bring it up anymore).

   I am really sorry if you've ever felt that way.

   I'm sorry for the times you have felt overlooked because it's 'always about me'. I try to not let this be the case. But, to be honest, when those moments happen, more often than not, it is a desperate plea for you to SEE ME. For you to notice me. To hopefully be understood on some small level. And, to be shown grace for all the times you've felt like I've let you down.

   Because the truth is, you can't know what this is like. You cannot understand. And, to be really honest, it hurts when you say you do. Because that's when I know you really don't see me.

   The really hard thing is that, as much as I want to feel understood by you, I know the only way for that to happen is to have you going through the same thing. And, there's NO CHANCE I'd EVER wish this upon you. I would never wish upon you the constant worry and wondering when the next seizure is going to strike and never being comfortable or at peace if she's out of your sight and the nonsense of dealing with medicine schedules and refilling prescriptions and fighting with insurance and doctor's appointments and tests and more tests and not enough tests and wondering why in 5 years we've never had her seizures under control and giving every ounce of yourself every single day just to have to do it all night too and yet fearing sleep and slides and swings and pools and bath time and food coloring and candy (and trick-or-treat and valentines and christmas candy and easter egg hunts and birthday treats at school) and trips in the car and having to go to meetings at school to educate the staff on epilepsy and emergency procedures and writing protocols and changing EVERYTHING every few months because nothing works and trips to the ER... so many trips to the ER and dealing with soiled bed sheets and clothes because seizures take away her ability to control it and holding your unresponsive child and not being able to hold your other children because this one NEEDS you again and watching her be unable to form coherent sentences even though you can tell she knows what she wants but cannot find the words or seeing her blue and convulsing on the floor and begging God to heal her because you know that every single seizure has the potential to take her from you forever and still always hearing "not yet."

   Nope. I really don't want you to understand that.

   I know there are things that you have experienced that I cannot understand because I have not walked through those same trials. And, I apologize for the times when I have cheapened your experiences by presuming that I know what it was like to be you in those scenarios or, worse... made you feel like that matters less than what I've dealt with. Please, please forgive me.

   So, I guess what it comes down to is this... dear friend, I'm asking for grace and patience. Before you allow yourself to feel hurt that I don't initiate, consider the possibility that it was a bad epilepsy night and we didn't get much sleep. Before you mentally roll your eyes when I start venting about things, please consider that I'm trying to let you in on a very challenging and painful thing we're experiencing and I'm trying to help you understand. Before you tell me you "get it" or that you understand, maybe consider the possibility that you don't. And, know that I think that's ok. I don't need you to understand. Some days it's all I can do to simply make sure my family successfully makes it through the day. If I somehow am blessed with the energy to not only go out with you, but also have the mental capacity to hold a grown-up and coherent conversation, please, at some point during our time together, just listen. That's all I really need. I need someone to hear the hurt, to hear the stress, to hear my heart, and to be ok with me just as I am that day.

And, please, always remember that (even when I can't express it well) I love you and am so grateful for your friendship.

I'm fine.

How often does this happen to you?

You run into someone... could be an acquaintance, could be a very close friend... and you ask, "How are you?"
And, they reply with the super vague, "Fine!"

It seems the closer you are to the person, the less likely you are to be happy about such a flippant answer.

But, let me give you something to consider.

As a mom of a child who has had a long battle with epilepsy, sometimes "fine" is all I've got.

Please don't take it personally.
It's really no disrespect to you.
It doesn't mean I don't trust you or that you are not close enough for me to be honest.
I'm not purposely withholding information from you as some sneaky judgment against you.

Often times there is just not a simple answer to that question. Kids with long-term health issues have such complicated daily lives that, especially in a store or a restaurant where I've run into you, I don't know what to share and what not to. I never know how many details people want.

Every parent with a kid who needs extra care has seen that look of terror in people's eyes when you start to share too much too soon and you realize too late that they were actually hoping things were just "fine."

And, do you want to know how she is or how I am or how our family is doing? Because none of those are mutually exclusive and ALL of those can be loooong answers.

If you really want to know, I'm happy to share. It's always a relief to have someone truly listen. I can put on the tea kettle or a pot of coffee. Just give me a 10 minute heads up so I can make sure my kids are also ready for a guest. (and bring donuts... or muffins... *wink*)

And, there are times when "fine" is the truth.

Every moment my daughter is not seizing on the ground, I am fine.
Every moment my phone is not ringing with school on the other end, I am fine.
Every day we get her out of her morning clusters in enough time to get to school on time not too late, I am fine.
Every day the red-tape isn't an issue and all the paperwork goes well, I am fine.
Every time I get to hear her giggle, I am fine.
Every day there isn't a new procedure or test or medicine to try, I am fine.
Every moment that her brother and sister are happy and feeling loved despite all of this, I am fine.

It doesn't matter what is going on with me most of the time.... I AM fine.

*NOT GREAT*

But, I'm fine.

The truth is, life is hard. We live in a fallen, pain-filled world. God didn't promise that life would be easy. He NEVER promised that He would protect us from more than we could handle. The exact opposite really. He confirms over and over in scripture that this life would be hard and full of challenges and He encourages us to face these things with courage and bravery, knowing He'd be right there with us, every step of the way...

"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world."   Jesus speaking in John 16:33
"Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Resist him, firm in your faith,..."   1 Peter 5:8-9
"Submit yourselves therefore to God. Resist the devil, and he will flee from you."   James 4:7
     *See? It's our responsibility to actively resist the enemy.*
"I believe that I shall look upon the goodness of the LORD in the land of the living! Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!"   Psalm 27:13-14

So, I'm fine.

God is with me.

"Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go."   Joshua 1:9
"He heals the brokenhearted and binds up their wounds."   Psalm 147:3

Therefore, I'm fine.

I am fine.
   *promise*

So,... how are you?
-kt

The Big One

Friday.

A game changer.

The day of the big one.

Our daughter has battled with uncontrolled epilepsy for nearly 3 years.
She will be 4 years old in about 2 weeks.

She had a rough pregnancy, her first seizures on her first birthday, lots of testing and trips to Children's hospital, many different meds and treatments. She is my little hero.

The seizures are normally absence seizures. She looks like she zones out, spots on her face twitch, and just as quick, she comes right back and goes about playing.

But, this one...

This one was on the floor, convulsing, little lips turning blue, mommy calling 9-1-1.

This was scary.

*We're all ok now*

I've started Bible journaling.

I've had some trouble over the past couple of years getting into the Word.
It's hard with all these littles running about to find the time or energy to really study.

This has been a GREAT way for me to meditate on scripture in the midst of mommy hood.

I'm not super confident in my artistic ability.

But, this one, including her sweet little handprints, is one of my favorites so far.

When we were going through our crazy pregnancy with her, we were told we were miscarrying her. I trusted God to do what He saw as best, but I (of course) wanted this child to be healthy and whole and a part of our family.

"For this child I prayed, and the LORD has granted me my petition that I made to him."
      1 Samuel 1:27

In the next verse, Hannah is expressing that, because God saw fit to give Samuel to her, she would give him back to the Lord.

While we were pregnant, my father-in-law told us that our sweet Little Miss would be used mightily for the kingdom of God.

On our bad days, I struggle to see how that can come true, but I'm hopeful. I hope that people can see the way the Lord is giving us hope, the way He is sustaining us, the way He is protecting her and providing for us. I hope people can see that even on my darkest, saddest days, I still trust Him. I've honestly really been struggling, but I know He is good. I know He loves us. I know He cares for her.
I know.

Give us strength to be used by you, Lord.

"For this child I prayed, and the LORD has granted me my petition that I made to him.
  Therefore I have lent him to the LORD.
  As long as he lives, he is lent to the LORD."
       1 Samuel 1:27 & 28

I'm so grateful.
-kt

I am now a MAD mom

Many friends joined us in praying during Evie's last inpatient stay at Children's Hospital in Denver (Aurora) since it didn't go as we expected. So, here's a brief overview of what happened.

We've been trying to figure out Evie's seizures for two years now.

A while back, we had a spinal tap done that showed that Evie is "probable" for a certain metabolic disorder where her brain can't process sugar as fuel. Her seizures may be the result of her brain not getting fed. The idea of this diet was then put on the table as a way to properly fuel her body and brain with fat instead of sugar.

Kids who haven't been able to have their seizures successfully controlled with medicines usually see better results with changing to a Ketogenic Diet.

I guess I think of it this way... the rest of us can function properly on unleaded. Our sweet girl requires premium. ;)

So, we decided to give it a shot.

The view from our room

She fasted the night before we got there and drank a special shake during the first day.

We took lots of wagon rides and trips to the library and toy rooms.

We even had some special visitors!

The general idea is to starve the body to get it into a state of ketosis. This happens when the body starts using fat for fuel instead of the sugars we eat.

From WedMd:

Ketosis is a normal metabolic process, something your body does to keep working. When it doesn't have enough carbohydrates from food for your cells to burn for energy, it burns fat instead. As part of this process, it makes ketones.

We can monitor that she is still in ketosis by checking to see how many ketones she *expels* during the day. (I'll let your mind figure out how we'd test for that) ;)

The diet works on a ratio high in fat, moderate/low in protein and carbs. On the second day, I was taught how to use a special computer program to figure out the ratios. I then measured her foods to the exact grams or ounces on a scale. Her calories needed to be strictly limited, too, to maintain the state of ketosis. 

Her breakfast on the Ketogenic diet.

Unfortunately, she did not handle this diet well at all. 

The main staple of this diet is heavy cream. It's carb free and high in fat. But, we quickly found that her body aggressively rejects raw cream. (I can cook with it, but if it is mixed into anything cold - like using it to make creamsicles - her body expels it as quickly as possible.)

Our poor girl spent the next four days being so sick and out of it. 

I'll spare you all the details, but it was horrible. She wasn't herself. She refused to eat, drink, walk, etc. She was a sad, sometimes angry, limp noodle. She wouldn't even talk. She just cried, grunted, screamed. 

It was horrible. 

Dear Doc McStuffins, THANK YOU!

(why is it that kids look so much smaller when they are in those big hospital beds?)

So, the team decided to switch her to a Modified Atkins diet to see if that would help. 

The first smile I'd seen in 4 days... talking to her daddy. 

She would continue to have very limited carbs, but she'd be able to eat as much fat and protein as she wants and there would not be such an emphasis on the cream.

THIS GIRL. What a sweetie. She was so content and awesome so that I could focus on her sister.

Just about the time she started to rally, John was able to come up to be with us. By that point, I was was EXHAUSTED. I'm so grateful he came. 

Seeing him in real life (vs. talking the phone or video chatting) gave her the boost she needed to get well enough to be discharged from the hospital. 

We've been home for about a week and a half and she's doing really well! She was seizure free for a week and her seizures have been minimal the last few days. 

There is a lot of trial and error with this diet. We are learning and making adjustments as we go.

But, let me say this: ANY reduction in the frequency of her seizures is a WIN in our book. Her eyes are so bright and her sentence structure is already improving. She seems so much clearer. The fact that we saw a drastic reduction in seizures but then saw a few is not as discouraging as it sounds. She was having probably 100s per day and now we see 5 or less. So, yes, the diet may be high maintenance, but she is not on an extra medicine and there was not surgery or anything like that involved. We are SO grateful!

***Special thank you to my sweet cousin Bri, for spending time in the hospital with me and my girls, to Mindi and her family for taking the time to come down to say hi even though they have so much going on, Christine for always being a light in a dark time, Ric and Deb for your help, the Rieger's for letting John come down and taking care of our Jake, and to the greatest CA in the world, De'Ja.***

De'Ja and me when we finally got to leave.

It was a really hard 9 days and the diet is definitely requiring me to spend a lot of time researching, preparing, etc, but I'm so grateful for the relief it has provided Evie so far. 

Thanks to Children's Hospital in Denver and, more specifically, Dr. Park, Chelsey and Jenn! 

If you happen to run into a nurse, CA, CNA, etc, today, give them a hug. They are the unsung heroes of hospitals.

-kt