FAAN Walk

It was a great day today. We walked for our little girl, and for the millions of people living with life threatening food allergies. Our family raised just over $300 for FAAN (Food Allergy and Anaphylaxis Network) to use toward lifesaving research. Thank you so much to those of you who donated! More than $20,000 was raised by the entire event today. I am so grateful for a husband who was as excited to participate as me. When it started to rain harder, one of our kids asked again why we were walking. Bill replied that it was to show our support, and that they would understand one day. I'm so glad I married him. My very sweet cousin also walked with us in the pouring rain. Thank you, Kelly!

Food allergies are on the rise. It affects my own family in just about every facet of our life. Lydia's allergy list now includes peanuts, tree nuts, dairy, soy, melons, and red dye. We're currently in the middle of a food challenge for wheat. Eating out has basically become a thing of the past. Lydia reacted last week in a restaurant to french fries seasoned only with salt, and cooked in canola oil- oil not shared with other food. Despite this, her face broke out during the meal, and six days later the rash still hasn't fully resolved. We can only assume there was somehow cross contamination, and it's going to be a long time before I can reconsider serving her anything outside of home again. My heart aches when I see pictures of children enjoying ice cream at a restaurant. For years we enjoyed Dairy Queen as a family, and I took it for granted. Now, I tear up daily for what should be but can't. Something as seemingly insignificant as buying a pretzel at the mall or getting gum from the gumball machine are now dreams. Eating shouldn't come with fear. No one should die from a single bite of food. And that's why we walked today. 

Because I've Promised Him the Glory

I planned on writing this post yesterday, before the phone call at dinner. Between my tears, I had no desire to write about blessings. Then I remembered that I have committed to God a promise that through everything, I would bring Him glory. Good or bad times. So, it seems more fitting to write this now, while walking in another small valley. 

Lydia's had a rash on her face that comes and goes, and the allergist and I have been on the hunt to crack the mysterious allergen case. Lots of tests were coming back negative -yay!- but still, no leads in the puzzle. Her latest blood work rechecked foods we'd already looked at in the past. I 100% expected these results to come back normal. So much, in fact, that it even slipped my mind that she had it done. Last night while I was cooking dinner, the doctor called me with the blood results. It's never a good sign when the doc calls your house after hours. Lydia's wheat test came back positive. Wheat. One of the foods that I have been so thankful for over and over that she can actually have, because it's in her favorite foods. She would try to eat an entire loaf of homemade bread if I let her. It is possible that the test's a false positive, so we started the food challenge process today. No wheat for two weeks, then re introduce it and watch for any rash/signs of allergic reaction. 

I know that there are much worse things. I really do know that- but that thought couldn't stop the floodgate of tears all evening, for her and also for myself. If she really is allergic to wheat, that will make her seventh food allergy. Finding ways to feed her safely is not easy. Baking and cooking already consumes several hours of my day. I have no idea how to bake gluten free. Everything I make, pretty much, has flour in it. For now, I bought Enjoy Life brand cookies, crackers, etc. to get through these two weeks. Most of the other gluten free products I found in the store last night contain her other allergens. If it turns out she truly is allergic to wheat...well, I'll cross that baking bridge when we get there. 

So- onto the blessings. 

1. Food allergies.
When I first found out about her food allergies (at least two of them anaphylactic/immediately life threatening) I had no idea how this would bring any good. Looking back, I can actually see blessings. God planted a desire in my heart long before allergies cropped up to start baking and cooking from scratch. He even gave me a joy for it. I never really cared for cooking before. I didn't even know how to make mac n cheese my freshman year of college. 

              Blessing: Our family eats much healthier. Very little fast food, mostly organic, all certified non-GMO. 
             Blessing: My faith has grown exponentially. Years ago, I prayed that God would never give my children a food allergy, because it would be more than I could handle. I would be a paranoid ball of stress. Instead, He answered that prayer by saying, "No. Trust your children in My loving care. I will take care of them." He didn't cause her food allergies. He isn't the cause of our pain and anguish. He is Healer and Comforter. In His wisdom that I can't begin to understand, He allowed the allergies into her life, but with a purpose. And yes, I fully trust Him. I still cry, I still crumble under the weight at times, but He always picks me up. The sheer number of her food allergies would have broken me on my own. My anxiety would have taken control of me. It is an absolute miracle that I can be genuinely at peace and happy every day. A miracle. Praise God. 
           Blessing for Lydia: Still not sure, other than the healthy eating. She's becoming a stronger person because of it, I'm sure. We'll see the blessings in time. 

2. Epilepsy
Part of me still says, REALLY? Asthma, food allergies, ok. Epilepsy? Really?? But in reality, she has the best case scenario. Her seizures are controlled on twice- daily medication, which is so great. Sometimes it takes multiple medications or surgery to get to where she is. Recent test results made me worry so much about her cognitive development- but in the past two weeks, I discovered she can recite her ABCs, count to 10, and recognizes several colors. Her speech has taken off as well. 
              Blessings: Bigger faith, conquering more fear, easily controlled seizures.

There are so many more blessings to tell, but a bad night's sleep doesn't make a good memory. The point is- I share so much about our life because I truly feel He is working through her and wants me to talk about it. I hear a voice in my head tell me that nobody really cares, that they are sick of hearing about it, that it sounds like whining. A bigger voice, and the one I decide to listen to, says that God has a plan, and no matter what that plan is, I am to share how He is working in our family. I also do it to request prayer- because prayer works! The night Lydia had her big seizure, I literally could feel the prayer of saints covering her, and received supernatural peace.

So latest prayer request? No wheat allergy!! I'll be faithful to my God no matter the result, but am praying so hard that the food challenge reveals no wheat allergy. I realize how good it feels to know people are praying for my daughter, so in return, please let me know if you have prayer requests of your own. I pray the most while doing the laundry, and seeing that I have two baskets full upstairs to put away- I have the time on my hands. 

James 1:2-3 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.

Psalm 66:1-4 Shout for joy to God, all the earth! 

    Sing the glory of His name; 
    make His praise glorious. 
 Say to God, “How awesome are Your deeds! 
    So great is Your power
    that Your enemies cringe before You.
 All the earth bows down to You;
    they sing praise to You,
    they sing the praises of Your name.

Sewing First

I've created a few things with my sewing machine over the years, but never using a pattern. I've made a hair bow holder, sleeping bag, burp cloths, pillowcase dress, and baby blankets- but all by winging it, and never using precise measurements. Obviously I'm not a perfectionist, and sewing is a perfect example. I like to get things done- snip-snap, get it finished. I hate dilly dallying. I never have a future in quilting. The closest I ever came to sewing anything in a precise way was when I made a nursing cover at my seamstress/best friend Amy's house. She showed me how to do everything, and almost literally held my hand through every step. I wish she could move in with me. Or at least live in the same state.

Today, I made Brooke a skirt- and I actually used a pattern (download it here) and measured stuff. It's even reversible! It took me three times as long as it should have, and I"m sure that anyone who sews past a beginner level could probably tear my skills apart looking at it- but, I finished it, it fits her, and she loves it! I am so excited. She can't wait to wear it tomorrow.

Pretty Medical

More than a year and a half ago, Lydia's allergist strongly suggested a medical bracelet for Lydia to wear for her food allergies. I resisted the idea for awhile because I didn't want our daughter "labeled" for even strangers, and I felt that since we were with her all of the time, it wasn't necessary. Then, following her asthma diagnosis (again, medic alert jewelry strongly suggested) and finally her epilepsy diagnosis six months ago- I had to admit that yes, medical jewelry was a definite must. I looked online for days, and could never find anything pretty or cute enough in Lydia's size. I did decide during my research that I wanted to subscribe to the company Medic Alert, because Lydia would be given her own personal ID number. That way, any medical personnel could access her full health information during an emergency. It's information that I provide myself and keep updated online. The problem was that the jewelry they offered in her size wasn't Lydia's style. Well, ok, not my style. It just wasn't cute enough to me, so I came up with an idea that combined the best of both worlds. My idea would let me change the look and style of her bracelet every day, while still using Medical Alert's ID number. Making the jewelry chain myself seemed simple enough. Hahaha!!! Fifty dollars in materials later, I realized that making jewelry isn't that easy. I whined on Facebook about my failure, and a very gracious friend helped me out. She makes jewelry as a hobby, so I told her my idea. I asked her to make beaded chains with lobster claws on each side, that could be easily interchanged with the medical plate from Medic Alert. It worked perfectly! My friend made me two chains- one white pearl and one black pearl. They were just as pretty as I imagined. My mom wanted to have some made for her too, so we went to a bead store downtown, where we had a few more options made.

Here's one of the chains.

The lobster claws attach to each end of the medical plate. All of her medical conditions and allergies are engraved on the back, as well as the 1-800 number for Medic Alert, and Lydia's personal ID number.

I bought a jewelry holder, because the box on her dresser was too much of a temptation for her to play with in the middle of the night.

I recently purchased her a necklace as well. I replaced the too long/not very cute chain with this one I bought at Piercing Pagoda.

My little cutie! 

Brooke's Baptism

Matthew 19:14 Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”

3 John 1:4 I have no greater JOY than to hear that my children are walking in the truth.

Joy!!!

In the Palm of His Hand

So, yesterday was interesting, to say the least. Our church had a pool party in town to celebrate a great week of Vacation Bible School. I was in the baby pool with Lydia and Isaac when I noticed several raised bumps on Lydia's torso. She wasn't crying, and at first I thought maybe a mosquito bit her several times. Then I noticed an obvious sting mark on her wrist, and knew she was reacting to either a bee or wasp. I gave her Benadryl, but it didn't seem to make a difference.Within minutes the hives became bigger on her chest and side, and her lips started to swell. That's when I completely broke down and lost it. I couldn't hold the tears in as the fear overtook me, and I began sobbing. God is so gracious in His care, and I don't think it was an accident that I was surrounded by loving friends who took over for me. One called 911, while others took care of my other three children. Paramedics were there almost immediately, and my heart soon calmed down. Lydia was visibly shaken and scared, and her usually mild tremors were obviously worse. I tried my best to put on a happy face for her, and stopped my own tears. While in the ambulance, peace came over me. I felt the prayers of friends, and I was able to smile and talk to Lydia while helping her stay calm.

To make a long story short, it took two (maybe three, I can't remember clearly) doses of epinephrine, two to three doses of Benadryl, and steroids to bring her back to normal. At no time was her breathing ever compromised. HUGE praise. We went home that night.


I've struggled today to remind myself who's in control. I wish I could keep her indoors 24/7 where I can keep her safe. That's not faith though. That's just wild and uncontrolled fear. I am learning to let go and leave it in His hands. Again.  


Part of me is sad. Lots of tears. Another part is angry at one more way our daughter could possibly die.
As if food, air, and brain function weren't enough methods.


In the weeks leading up to Lydia's recent food allergy testing, I prayed so hard for all of her allergies to be taken away. Part of my prayer was that if it wasn't in His plan to completely heal her, that He would at least remove the shellfish allergy. Random, but that was my prayer. Guess what allergy she no longer has? Her dairy and peanut allergies were even worse, and she has a new allergy to melons, but tears welled up in my eyes when I heard about the shellfish, because I knew He had heard me. It was as if I literally felt Him hold me in that moment, and remind me of His care for both me and Lydia. 


We'll get through this. In the palm of His hand. 

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.