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’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!