Friday, October 26, 2012

Time to Celebrate!


We had a mini celebration in our house tonight! 


It was originally planned to celebrate Lydia passing her wheat challenge.


Plans had to change. She didn't pass the challenge, and we also found out about two new allergies to garlic and beef. Yes- beef, as in hamburgers and steak and chili and spaghetti sauce.

I was bummed. Really bummed. Party cancelled. But then the pity party cleared, and I realized we had plenty to celebrate. So- instead of wheat, we celebrated our amazingly blessed life. 


We celebrated living in America. I start each day knowing that I can provide my kids with clean sheets, clean water, healthy food, education, a home, and a whole bunch of other frivolousness that we often confuse with "needs". Lydia has nine different food allergies, and yet I still have an abundance of safe, healthy food to buy for her. 


Yep, lots to smile about!


She was wondering why we were staring at the cake instead of eating it. 


Wheat free, dairy free, nut free, soy free, artificial dye free,  and very, very yummy. Even ultra wheat-free critic mama thought it was good. Namaste chocolate cake mix- allergy friendly, not cheap. 
Prayers for our little girl are always welcome. Her allergies are getting worse, not better- and it can be very frustrating. Bill and I are constantly on alert to protect her. We skip eating out altogether unless we pack her meal separately. Movie theaters feel like death traps with all the peanut M &Ms and buttered popcorn. Meal planning is- well, a challenge. Most of her allergies cause severe rashes, but a few of them do try to kill her. Several weeks ago she took a sip of cow's milk from a cup that somehow made it past my paranoid, watchful eyes, and she reacted immediately. Hives popped up over her face and torso, and by the time I ran her up the steps to shower off her skin, her lips and tongue were swelling. We had to use her epi pens and call 911. Food allergies are no joke. I remind myself every time I start to drown in self pity that I am a child of the Almighty, and she's in His care. I trust Him implicitly.  I also think of the orphans in Haiti and Africa who would look at our life and think we live like royalty.  And that's just looking at material things. There's the story of the poor man who sat at the table with his bread and water, and gave thanks saying, "All this, AND Jesus?!"

What if I woke up tomorrow and all I had left was what I gave thanks for today?

Self pity, go away. Cake tastes way better.

Friday, October 5, 2012

In the Meantime...

I think that great pain in life is not always that of our own, but the inability to remove it from those we love. 

To know that someone is hurting, and words feel empty, and there is nothing to do but pray. And even that feels inadequate at times. Then I'm led back to that same old question I've been asking over and over and over again. Why all the hurt and pain in this world with an all powerful, all loving God? Why do toddlers get raped, and children get beaten, and women hold dying babies? Why do wars rage, and nations starve? I already know the answer. That God is not the source of evil, and one day He will set all things right. But in the meantime....all this pain....

I came across this blog post today. 

"Why is there all this loveliness?"







And I realized, I've been asking the wrong question.

Instead of asking, "Why all the evil, when there is a God?"

The question  I should really ask, "If there is no God, why is there so much good?"

Evil wants us to think that God doesn't care. That He doesn't see silent tears in the middle of the night, that He doesn't feel our sorrow and loss. The truth is that He holds us with nail scarred hands. The truth is that we never walk alone. 

There is still beauty in the midst of pain because there IS A God. A beautiful, loving, compassionate God. And one day, He will set all things right. And in the meantime...all this good...


Romans 1:19-21

For his invisible attributes, namely, his eternal power and divine nature, have been clearly perceived, ever since the creation of the world, in the things that have been made.
So they are without excuse.
For although they knew God, they did not honor him as God or give thanks to him



Saturday, September 8, 2012

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. 















Tuesday, August 28, 2012

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.


Saturday, August 18, 2012

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.








Wednesday, July 25, 2012

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! 






Thursday, July 12, 2012

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!!!