Her strength amazes me – #eosinophilicesophagitis

I would be lying if I said that seeing pictures of families having cookouts and roasting marshmallows by the campfire did not make me sad. Friends, I started crying this weekend when I saw a family enjoying s’mores together. My heart just hurts for my L. There are moments that I am weak and this weekend was one of those moments. God gives us strength and I know he gives L strength to continue on her journey each day. Food is all around us and in our faces everywhere we go. As L’s mom, I try to make her comfortable while she is drinking her formula. At 12 years old, we get questions of why she is drinking formula or only eating pears and sweet potatoes. For people that do not know about her disease, their jaw drops every single time when I explain about the disease. The next phrase out of their mouths is “How does she do it?” L answers with the same answer, God gives her strength. Oh tears, friends.

We do not leave the house without her backpack and in that backpack, I ensure she has her formula, pears and sweet potatoes. Also, I include the elemental candy she can have which is 100% pure sugar. People have made comments of why we let her have so much sugar, but why wouldn’t we?

L with animalsL’s happy place right now is with animals. The stress and anxiety goes out the door when we see L smile ear to ear when she is surrounded by animals. This girl has a way with animals.

Recently, we were visiting my aunt’s farm and the donkeys just proceeded to come right up to L. It was a priceless scene. In that moment, we did not think about her eosinophilic esophagitis, all the medicines that she needs to take, or her sugar getting too low. It was a moment of our girl having fun and enjoying being a child. This is how life should be for her. My goal is to try and not let her rare disease take away her joy. God has big plans for our girl and we are going to be cheering her on every step of the way. L and I sat on the couch and cried together earlier this week because she said she was thankful God gave her this disease as it has made her stronger in her faith. She mentioned, if God only allows her to have two safe foods, she will be grateful for those two foods. This girl is simply amazing. Her strength will be a huge testament to others. If I’m having a bad day, I just think about L and her living her days with very little food options. Just look at her smile on her face? That is a face of perseverance and strength.

With all the pollen in our area, it has wrecked havoc on her little body. We are not able to do a food trial right now but hoping in the next few days, the pollen counts will drop and we can start another food trial. Failing a food trial is so hard on her as it brings all her symptoms back and takes a toll on her day-to-day activities. We will never stop praying for a cure.

L, you are my hero!

We have exciting news!

Jen from One Moms World

This was truly the best weekend ever. We were surrounded in love with our family and enjoyed celebrating a big event. L and I will be releasing an update on our YouTube channel on Tuesday to tell you the big news. We hope you are subscribed to our channel so you will get the notification when the video goes live. God is so good and we are giving Him the glory for this great news!

We have great news…. #EosinophilicEsophagitis

Did you hear that? That was the entire family shouting with joy. Why are we shouting? You will need to watch our latest vlog as we share big news in L’s eosinophilic esophagitis journey!

Enjoy a Happy Halloween {Teal Pumpkin Project}

The day has come where many kids all across the country will visit their neighbors to say “trick-or-treat” and get a sweet treat in return. Kids will be jumping, skipping, running, and walking with no worries in the world to see how many treats will fill their bucket.

teal-pumpkin-project-omw

There will be also be kids that want to skip or run to their neighbor’s houses but are scared of not being able to get a treat. These kids have food allergies. They are not being picky or selfish, they are just wanting to feel “normal” and enjoy an activity like other kids. L falls into this category. Ever since she was diagnosed earlier this year with eosinophilic esophagitis, she has had a hard time going around other kids because she feels like she is not “normal.” We are working through this issue. A couple of months ago, we were in Michaels Craft Store and saw a teal pumpkin. As soon as we got home, we had to google about the teal pumpkin project. L explains this project in her short video.

Isn’t this a great idea? All because a fellow allergy mom wanted her kids to enjoy Halloween. The Teal Pumpkin Project was inspired by a local awareness activity run by the Food Allergy Community of East Tennessee (FACET) and launched as a national campaign by FARE in 2014.

We are hoping to find lots of teal pumpkins during our trick-or-treating outing. We wish you all a wonderful, happy, and safe Halloween!

It’s Hard…..

To watch your daughter not able to eat.

To fail food trials, potatoes and apples.

To cry when being taken back for surgery for the 4th time in 2016.

To grab her throat in pain.

To have to drink a prescription formula to stay alive.

Friends and family, it has been a hard month. We serve a great Lord who gives us strength and encouragement every single day. When we started on this eosinophilic esophagitis journey, the family wasn’t sure what to expect. It has been heartbreak after heartbreak, but L has been so strong through the entire journey. I can’t even imagine what goes through her mind. When your daughter tells you she is not ready to go to heaven, you can imagine the tears that streamed down my face. It shows what the disease does to you mentally. It was my job as her mother to assure her that she has a great medical team and we are going to continue everyday to pray for a CURE! When a reaction happens to your throat, it becomes traumatic and forever stays in your mind.

L had to have an emergency scope this past week. Since we have been home, I have been trying to make her as calm as I can by filling our house with happiness and much prayer. This past weekend, we bought a himalayan salt lamp for her room, a kid’s calming stick, and more essential oils for her diffuser. Our hopes this will help with L cope through this very traumatic journey.

In a magical world, a wand would be waved and she would be healed. As a family, we feel she will be healed by our almighty Physician (Our Lord), so the Lord can use her amazing testimony of healing to share to others.

Next week, we meet with a new allergist to ensure we are covering all our bases with L’s regular food allergies and her EoE diagnosis. We will walk away from this appointment with a new game plan and get our L eating food once again. It is hard to remain positive and not throw your hands up and cry. But honestly, what would that fix? L feeds off of our emotions, so we must remain positive and fill our world with great happiness. This means family puzzle time, family craft time, animal discussions, car rides, and the list goes on.

We are not giving up. We are reaching farther. God is good!

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