Just like everyone else, our summer has gone by too fast. My mission this summer was to travel to see our  families. We spent time with Justin’s family for two weeks. We are with my family now for four weeks. Ava, Oskar and Lucy have enjoyed spending time and reconnecting with our families and friends. It’s been three years since we had a “normal” summer. Two years ago, we were in the hospital with Ava and the younger two lived with my parents. Last summer, we moved houses again to get out of the heat in Salt Lake City and Ava lived with my parents. This summer, Ava commented that this will be the first school that she has attended two years in a row that she can remember. I was on a mission to give us a “normal” summer. I was on a mission to spend the summer in the Midwest with all three of my children.

As you may already know, one in ten are living with a rare disease. I know that everyone has probably heard that statistic so many times. Nine in ten are not rare. Trying to live in the world with the nine in ten that do not have a rare disease is a challenge. We want to be like all of you. We persevere to be like you. We look at you with awe.

Summer in the Midwest means dealing with the heat and humidity. Wow! I list heat intolerance as a symptom. Seeing all four of us in the heat…reinforces it. We have such good days when the weather is in agreement with our bodies. However, the days when it’s in the 80’​s and 90​’​s, we struggle. We went to a Kansas City Royals game with Justin’s family. His step-dad bought twenty-five tickets. We tailgated and then planned to attend the game. Unfortunately, we didn’t make it to our seats. We did get the photo of the stadium to remember the night.

 We also tried to go to an amusement park on a day it was too hot for us. We left within an hour. We continue to try to do the “normal” things that other families do in the summer.

I’m not complaining at all. It is just a realization. It’s hurts to see the three children melt so quickly. They get fatigued so quickly.

However, the savior for them is swimming. If you put us in water, then we are in Heaven. Swimming has been the main activity for the children.  Even while swimming, Ava complains of pain. There really isn’t anything I can offer her to take her pain away except distraction. She is such a trouper. I’m so proud of her for pushing through her pain.

Since Justin spends the month of June working hard to prepare for the NBA Draft and the month of July with the Jazz summer league as well as the Jazz training camp, we were hoping to steal some time away later this month. Unfortunately, it won’t happen this summer. My time away from my children is going to be to enter a new clinical trial for my EOE. I’m flying back to Salt Lake City today to meet with the team tomorrow. I had previously asked my GI specialist if I could wait until I return in August. She said I would risk the clinical trial to fill up and then close. I decided to take that risk. However, by the end of June, my EOE was not tolerable. The feeling of not being able to swallow is driving insane. I feel like I’m suffocating. I feel like my chest is going to explode. I have already cut out all of the foods – egg, gluten, peanuts (all nuts), fish/shell fish, dairy, soy, turkey, potato, etc. I cannot risk losing out on this opportunity. What worries me is that I will get the placebo. Everyone in the trial will eventually end up with the drug. This is one of the positives of this trial. I have never been in a clinical trial. I’m nervous and my anxiety starts taking over. I trust this doctor with all of my heart. She is on a mission to find the answer to cure EOE. And you know why? Her son has EOE. He has a very severe case of it. I see it in her eyes and hear it in her voice. She will cure EOE someday so her son can live a “normal” life.

 I keep saying “normal” in this blog. I had a wonderful conversation with another mother recently that works in the world of epilepsy. Her son was just diagnosed through whole exome sequencing with a very rare disease. We discussed how our summers have gotten away from us and we will never have a “normal” life. She gave me such great wisdom. I took away from it that we will have what is “our normal” and we will celebrate in it. We are who we are. We only get one body in this life and you can sit and complain about it or you can persevere and thrive in the best possible way. I know this isn’t always easy. I sure have had a hard time over the past few years.

However, I am trying desperately to believe that I can thrive in my body. I am trying desperately to get over my anxiety that Ava will die soon and that I won’t see my fiftieth birthday. I am not going to stop fighting to stay alive and to keep my children alive. I will not give in to our rare disease…whatever it may be.

I am trying to teach Ava that she can thrive in her body even though I will not let her play team sports in soccer or softball per her doctor’s orders. So, I am trying to teach Ava soccer and softball in our backyard. If she wants to learn a sport that she can’t play on a team or in school, I will teach her myself. I will be her coach. I will be her teammate. I will teach her.

I even taught her how to ride a bike this week. I ran with my broken hip and my degenerative spine. I ran with my heat intolerance in 90’s because I WANT AVA TO RIDE A BIKE. I want Ava to feel “NORMAL”.

I am even trying to teach Oskar and Lucy that they will be an athlete and play in every sport imaginable. I haven’t seen Oskar this excited about tennis and baseball. He is also swimming like a fish. Without floats!

Lucy too! They jump right into the pool and laugh over and over!

Those are the moments to live in and relax. Those are the moments that we need more of in our lives. Those are the moments that make us feel more like “normal”.

Mumford and Sons summed it up in their song,

In these bodies we will live

In these bodies we will die

And, where you invest your love

I have invested all of my love into my children and giving them the very best chance of living a long and blessed life. I have also invested all of my heart and soul into the rare community for the blessed possibility to help the rare children and their families.

We are here for everyone involved in the rare community.

Much love,

Gina