Strength in Weakness

I can't help but find it strangely coincidental that Lydia has such a combination of health problems. That seems like a pretty hard hand to be dealt at such a young age. There are certain types of seizures related to food allergies, but she doesn't have those kinds of seizures, and so - backed by medical research- we've been told that her allergies and asthma are unrelated to her type of epilepsy. I can't help but wonder, though, if there's more to know and do for her. I decided to reach out online to find other families who may be in the same unique situation that we are in. We have an amazing family and friend support network who are behind us all the way, but there's something to be said for talking to someone who is completely living through what you are. So, even though I've avoided it for several months now, I joined an epilepsy advocate group online. The very first posting I read was from a friend of a high school senior who had just died the day before from one of her seizures. Died. Three weeks before graduating high school. I looked up her facebook profile that was tagged in the post. She was beautiful. Had lots of friends. Involved in her community. Planning her graduation. Now dead.


There are epilepsy patients far worse off than our daughter, which has helped me put things into a healthy perspective. But after learning about this girl, who obviously lived a normal day to day life, now suddenly snatched away by her disease, I was petrified that Bill and I would one day experience what her parents were at that very moment. I couldn't sleep that night. When I did sleep, I had nightmares of her dying. The sadness spilled over into the next couple days. I had faith in God and His care, but this is reality- that His plan may not be to heal her. God's children experience that kind of tragedy every day- we aren't always spared from the pain of this world just because we are His.


The day before seeing the post on the epilepsy page, I'd already struggled with my anger over Lydia's health. It was the last day of preschool, and I had planned to "celebrate" at the spa during my last two free hours of the school year. Then I realized that there was going to be a pizza party for the kids immediately after pick up. So for those two hours, instead of getting a pedicure, I made spaghetti and homemade bread, and baked a cake so that Lydia could eat some of her favorite foods at the party. My anger kept building all morning long. I wasn't mad at anyone in particular, and I certainly didn't resent having to cook for her- I was furious that my baby couldn't even eat a freaking piece of pizza like the other kids. That once again, she had to be different. How do you explain that to a two year old?


By the time I arrived to the school, I was a few minutes late. I gave Isaac his pizza and chips, and put out Lydia's food. She pointed to the other kids eating, and looked at me. I redirected her attention to her yummy food and braced myself for her tears. But instead of crying, she just put her head down and sighed, defeated. It was like she gave up. I choked back the tears and felt the anger welling up inside. I was furious. I prayed silently to God, "Why?? Why?? Why does she have to deal with all of this?? I know You have a plan. But right now I don't understand, and honestly, right now this plan sucks." It pains me to even type that out because of my shame in it, but I was flat out honest with Him about my anger and confusion- maybe for the very first time. I was admitting it to myself and to Him. But instead of repenting of my attitude, I held on to the anger for a few days longer, allowing it to turn to bitterness. Anger itself is not a sin, but what we do with it can be. 


By the end of the week, I was sick of living with myself. I was depressed. I wasn't praying or reading my Bible as I should, and it was spilling out into everywhere else in my life. In a way it was good to get out my feelings, but I wasn't doing it in a healthy way. I had enough, and prayed for Him to change my heart. I asked Him to help me fully trust again, and of course He did. It was perfect timing because Lydia became sick the very next morning with a virus. She was spiking fevers, which is dangerous with her epilepsy. She's more prone to seizure activity in those times. By midweek her fever was thankfully gone, but the virus had triggered her asthma. She became steadily worse until she was hospitalized on Thursday of last week. She did well soon after admission, and was able to go home Friday evening. 


During this time, I started a new Bible study online with some friends called Faithful, Abundant, True (or FAT as we like to call it) based on a Deeper Still conference in Orlando a couple years ago. The first two weeks were written by Kay Arthur, and she taught on faithfulness. What I learned in the past couple days has really resonated with me. She taught that true rest is found in faith. (Hebrews 3:17-4:3) Kay said, "If I were going to give you a visual of the rest of faith, it would be your head resting on the Bible." On the flip side, unbelief is a lack of faith, and that in itself is sin. Romans 14:23 "...whatever is not from faith is sin." We have to stay in the Word of God to stay strong in our faith. Romans 10:17 "Faith comes by hearing, and hearing by the Word of God."


Kay covered Hebrews 11, and the verse that really stuck out to me was the verse about Sarah. I've read this chapter countless times, and Kay didn't even bring out this verse in particular, so I'm sure it was the Holy Spirit stirring me. It says, "By faith, Sarah herself also received strength..." It made me want to cry- because when I think of Sarah, I immediately think of her laughing in unbelief. My own son is named Isaac, which is the name her son was given, meaning laughter. She made a big mistake in not believing what God said He would do, yet she made it into the book of Hebrews because of her faith! What does that say about the redeeming grace of God? I screwed up big time, just like Sarah did when she laughed, and I was angry because I didn't like God's plan. He hasn't decided to instantly heal my daughter and restore complete health to her little body, and that can be hard to accept. But He still loves me, and His Son- my Jesus- is not ashamed of me. He can and will do great things for our family. My sins are remembered no more. I am weak, but His strength is made perfect in my weakness. 2 Corinthians 12:9.  He gives power to the weak; I will mount up with wings like eagles, and I will run and not be weary. Isaiah 40:29-31. I don't have to fear, because He is with me! He will strengthen me, help me, uphold me with His righteous hand. Isaiah 41:10. 


I love Psalm 73:26, because it feels like it was written just for me- "My flesh and my heart fail; but God is the strength of my heart, and my portion forever." I may not understand His plan, but that verse-that I do understand. And amen to that.

Irresistible Love

I woke up Saturday morning with a simple idea, and it should have only taken a half hour. I was going to move the linens out of the hall closet, and use the space to store all of our board games and puzzles instead. I was then going to combine all the sheets and towels into the linen closet of our master bedroom. (I've mentioned it before, but a massive number of closets is one reason that I fell in love with this house.) Once I got started, though, I couldn't stop. Ten hours and several closets, drawers, and cabinets later, I'd purged our home of three bags of trash, three bags of donation items, and numerous kitchen appliances that no longer needed to take up useful space. It felt great, and I learned a couple things about myself. One: I really need a way to organize my kids' drawings and school papers. Two: I'm a greeting card hoarder. If you sent us a "congrats on the new baby" card, chances are I still have it. I found lots of treasures along the way though- old love notes, notes between Amy and I in school, old pamphlets about childbirth and breastfeeding, and then most importantly- a prayer of salvation I'd written out four years ago for my children. I adapted it from a book my mom bought me called Praying the Scriptures for Your Children by Jodie Berndt. It's a prayer that I've spoken in some form or another even as a child and teen myself, before I was ever ready to start a family of my own. It's a prayer that's already been fulfilled in my older two children, and yet to be filled in Isaac and Lydia. It's the most important prayer I could ever pray in my lifetime, and so I wanted to share it here. I wrote it out for each one of my three children four years ago, and plan to write it out for Lydia now as well. While I have been praying for Isaac and Lydia's salvation since my pregnancies with them, I think it helps to have the words spelled out using Scripture interwoven throughout the prayer, and to pray His promises word for word.

Here it goes:

Thank you for loving Isaac so much that You gave Your one and only Son, that when Isaac believes in Him, he will not perish but have eternal life. (John 3:16) We pray that Isaac will trust in You and never be shaken. (Psalm 125:1) We pray that he will repent of his sin and confess with his mouth that Jesus is Lord. We pray that he will believe in his heart that You have raised Christ from the dead. Guide Isaac to call on Your name Lord, and save him. (Romans 10: 9,13.) We pray that Isaac, being rooted and established in love, may have power, together with all the saints, to grasp how long and how wide and how high and how deep is the love of Christ, and to know this love that surpasses all understanding, that Isaac may be filled to the measure of all the fullness of God. (Ephesians 3: 18-19)

I believe two things that may seem incompatible. I know that each one of us comes to God of our own free will and choice, and we cannot pray another person into Heaven ourselves. I also believe what God has promised in 1 John- that whatever we ask according to His will, we will have what we have asked. My children's salvation is well within the will of God. I pray that God's love will be so overwhelming to my children that He will be found irresistible. I have no idea what it would feel like to have an adult child living outside the will of God, but in Jodie Berndt's book, she states, "God wants our children to be saved. When you pray for your children's salvation, you can be confident that you are praying in accordance with God's will." She references 2 Peter 3:9, "The Lord is not slow in keeping His promise, as some understand slowness. He is patient with you, not wanting anyone to perish, but everyone to come to repentance."

I John 5:14-15 This is the confidence we have in approaching God: that if we ask anything according to His will, He hears us. And if we know that He hears us, whatever we ask, we know that we have what we asked of Him.

She's Seven!

My little girl is seven! Unbelievable. It feels like we just brought her home from the hospital, and yet she's growing up into a beautiful young lady. She likes to goof off and tell jokes, is into crafts and painting, and loves ballet and tennis. She is kind, generous, and all around a cool kid. For her birthday this year, she asked to go to the pottery place in my hometown. I was glad to be responsible only for a cake, and not have to decorate the house. 

The original cake she picked out was a character cake with nearly a dozen 3 dimensional mice and cats in ballerina outfits. (I'll pause for laughter...) I was actually up to the challenge- until the week of her party when I completely chickened out. I had a talk with Brooke, and we looked online together for more cake ideas. I was so excited when she picked out this cake. Easy peasy. I chose a white base icing color, and violet roses.

I placed the cake on a cooling rack to make it easier to apply the roses on the sides of the cake.

Finished! This was one of the easiest cakes I've ever done, and one of my favorites. I really got the hang of it by the end, and contemplated scraping the roses off and making it more "perfect", but Brooke loved it so much I didn't bother. It was her opinion that counted the most to me anyway.

Painting at the party. There were some adorable group shots with her friends, but I don't know how their mommies feel about me posting their pictures online. I need to remember to ask them...

My two other pretty ladies painting with mommy.

Playing hide and seek while waiting for everyone to finish painting.

One of her friends bought her a caboodle!!! Blast from the past. I was super excited.

She has precious friends. Several made her homemade cards and books. I love her girls.

Is she really seven??

Adorable, aren't they?

Happy birthday Brooke! Mommy and Daddy love you so much, and we are so proud of you!!

All 4 Music

When I asked Isaac what kind of birthday party he wanted, he told me a guitar party, and then that later evolved to drums. I decided to make it easier on myself and broaden it to a music theme. He used to be obsessed with Disney Junior's Imagination Movers (whatever happened to that show??) and plays air guitar constantly. Anything resembling a stick becomes a drumstick, if he hasn't turned it into a gun already. Most of my ideas came from Pinterest, but I can take credit for a couple on my own. 

Most of the food items, including the drum cake stand idea, came from Pinterest. The cake ball microphones and chocolate covered banana piano keys were last minute add-ons I came up with the night before. The music notes were chocolate covered rice krispie treats.

More ideas taken from Pinterest. The guests picked out their own guitar to decorate and take home.

Goodwill was a perfect spot to find the records. I knew someone in town would be trying to get rid of some.

Madeline picking out her guitar.

The kids also painted "drums". This was the quietest part of the party- and not messy at all!

Isaac was nervous at the attention, so I blew out the candles for him. I didn't mind.

Isaac, you pretend to not need me anymore, but any room I go into, you are quick to follow. You turn anything into a gun or a drum. You love on your puppy Jack, sometimes a little too much. You have that same laugh that I have loved ever since you were a baby.You are daddy's boy and jump up and down when he walks in the door. Even though I don't sleep well and it usually hurts my neck when you hog the bed, I think it's precious when you come into our room in the middle of night and say, "mommy- I sleep with you. Hold me. Scratch my back." You have made huge strides in your speech. Your therapist was so proud of you for saying "yellow" correctly yesterday- she said you were shocked yourself when you said it. You knew what a big deal that was. You are still very shy, but talk nonstop at home, and have said a few sentences in preschool and Sunday School, which is a huge step for you. Daddy started doing reading lessons with you, and you are excited to learn how to read like your big sisters. You love to protect and take care of Lydia, who you sweetly call "Baby". It's so precious when you take her by the hand and lead her places. She looks up to you so much.

Isaac, I love you so much it brings a lump in my throat just to think about how deeply so. I wish that I could keep you small forever and always protect you. I've done really well at giving you roots, but it's the wings part I need to work on down the road. Happy fourth birthday!!

Good News Update

You know what feels really good? Leaving a doctor's appointment with a smile on your face. You know, instead of biting your tongue trying to fight back the tears so your three year old doesn't get scared and ask why mommy's crying. Lydia had appointments with two of her specialists last week, and both couldn't have gone better. Well, except for the part where the doctor looks baffled and explains, "It's a miracle! She's been healed!" Maybe one day. But on this day, her allergist decided to lower one of her asthma medications, and the neurologist was amazed at how quickly Lydia had responded to her seizure medication. She noticed what many others have said to me- it's like Lydia has awakened from a haze. She is more present and engaged in what's going on around her. She talks a lot more, and her vocabulary has probably tripled in the past month. Her preschool teachers say that she walks around and plays with toys instead of sitting and observing the other children the entire time. It's not to say she was a zombie- she is a very bright girl with loads of personality. It's just that she has multiplied those traits many times over since the seizures have been greatly decreased. The neurologist said that her EEG was so jam-packed of seizure activity, that her brain was constantly short circuiting (using very layman terms here). Now, she can actually focus uninterrupted, and it has made such a huge difference. To look at her, you would have very little idea how much she has overcome, and still deals with on a daily basis. I am just so very thankful for her, and for how many ways God has blessed her. I cry every time I really sit and think about it.

One thing the neurologist mentioned- and I was pretty much shocked by it- is that Lydia qualifies for Make A Wish. I, as I'm sure most people do, usually think of children with terminal illness qualifying for this charity. Such a possibility had never even crossed my mind. My initial response was a mixture of Wow, that's depressing- and Wow, that's awesome! I mean, if any good can come out of all she's been through, then bring it on! Then, my feet quickly hit the ground, and I realized two things: first, that at this stage in her life it would be our wish, not hers, and second- she is doing so well medically speaking at this point, and (other than the occasional tantrum because she doesn't understand her food allergy restrictions,) has really no idea that she has medical issues. She isn't going through chemo, or enduring weekly hospital visits. So we aren't going to pursue that avenue any time soon- but it is kind of cool to know it's there. It's a charity that you pray you never have to use, but is such a blessing to those who need it.

So to sum it all up, Lydia takes a lot of medication every day and wears a pretty darn cute medical alert bracelet, but other than that is a normal two year old- tantrums and all. Which- I'm working on. I had it in my head that her medication was affecting her mood and causing this wretched behavior, but the neurologist gently let me know that no, she's a strong willed two year old with a mommy who feels sorry for her. Yep, she hit it dead on. I think that's a blog post all on it's own.

Dreams Come True

There's a place

where memories last a lifetime,

and dreams really do come true.

A little girl can become a princess,

and be invited to the castle for a lunch date.

A little boy can drive a car alongside his puppy,

and meet a friend from morning tv.

A baby girl can eat allergy-free waffles made by Chef Mickey,

and meet an old friend.

Sisters bond on a magic carpet ride

and have a casual chat with Tink.

A mommy can live her childhood dream 

in a place that has forever stolen her heart.

There's also a place

where a dolphin plays and talks to your children in a miraculous moment that will not easily be forgotten.

In this life,

we are never promised tomorrow...

so moments like this one,

and this one,

are made all the more precious.

So thanks for the memories, Mickey and Shamu!

I am a very blessed girl.