It has been an emotional few days this week with my trip back to Salt Lake City for the NBA Utah Jazz game against our Milwaukee Bucks. I am so glad I decided to join Justin and the team. I was able to see many of our Jazz family and spend some time with them. I cried the minute I stepped into the arena. I missed the Jazz ushers and their hugs melted my heart. It was an emotional night for both Justin and me. We loved being in Utah and we loved being with the Utah Jazz.

I told my RUN families on Tuesday night at the event we had at Primary Children’s Hospital Outpatient Center how hard it was to move to Utah when Justin took the job after Ava’s four cranial surgeries in 2013. The Jazz called every week to see how Ava was doing. They were very respectful of our family. Justin would try to talk to me about the incredible opportunity in front of him as he would be ending his NBA and European agent career to move to the front office of a NBA team.  This was an opportunity of a lifetime for him and I would not even allow him to mention it within the four hospital walls. He would take me to dinner and I would refuse to discuss it. I was only focused on making sure Ava did not die and to get her out of the hospital as soon as possible.

The minute Ava was out of the hospital, Justin received the offer from the Jazz. Since they had to wait so long to offer Justin the job, he was on a plane the next day. I was left with a very weak child and had not even seen my younger two children for weeks. The idea of moving our family to Utah was frightening. I had my parents only two hours away. My older brother and my younger sister were only two hours away. My best friend was only two hours away. How was I going to leave my family and my support? We moved from New Jersey after we had Oskar because I needed help. This was before I even had Lucy and I thought my two children were healthy.

I remember my older brother demanding that I wait six months before we moved so I could get myself together and focus on Ava, Oskar and Lucy. The thought of being without Justin for that long was just not possible. Justin has always been my rock. I’m always more calm when he is home. However, the thought of moving our medical care across the country was also frightening. We had just spent years going across the Midwest to find a team to help us with our children and to help understand what disease process was progressing within me. Now I had to start all over?!

Yes. I had to start all over. I had to sell the first house we ever bought after we were only able to spend two years in it.  I had planned on living in that house forever. (We did not sell the house for over two years. On top of all of our medical bills, we were paying two mortgages for over two years!? We have since moved three times in the last four years.)

Yes. I had to move to a state I had never even visited. I had to move to a place that I did not know one person or have one family member. I did that when I was in my twenties. I moved to California without knowing anyone and I moved to New York City without knowing anyone. This was different. I had three medically complicated children and my oldest just had four cranial surgeries. I was still in shock from the fact Ava could have been blind or dead if I did not take her into the emergency room on June 13, 2013.

Although I was very proud of Justin’s new position and excited for his career to take off, I was so angry about moving to Utah. In addition, I had hip surgery after our move in October, 2013. It was a very difficult first year there in Salt Lake City.

I remember trying to process my anger for Ava’s circumstances instead of being thankful she survived. I remember just being so angry.

This was not me. I decided to go away for my 41st birthday, January 20th, 2014, to try to pull myself together. I booked a trip to California to go to the beach. The beach was and will always be my happy place. My place to reconnect and to breathe. I had forty years of a healthy life and we had huge plans ahead. I had three children that needed me and a new life in Utah to explore. I had a husband that was working hard to make our lives better and he was supporting me on all levels. What was I doing being so angry?

During my trip, the weather was pretty cold and wet on the beach. There were not a lot of people around. I walked a lot and then just crashed into the sand. I tried to calm myself down but I just cried. I cried and I screamed. What was I crying about? The loss of the life we had planned. The loss of control in life. The loss of my very blessed and healthy plan for my family. The loss of not having a fourth child?

I know Ava survived her four cranial surgeries and I was very thankful to God and to the doctors. But, I was still angry she had to have them in the first place. I cried so long that I was done crying and just sat staring at the waves…

As the sun set on the ocean, I felt the presence of my Angels and I felt the presence of God. I felt the need to pick myself up and to walk back to the hotel. I was done feeling angry. I was done feeling like I was drowning in the big dark hole. I wanted to be a better mother. I wanted to be a better wife. I wanted my life back.

In the months that followed, I slowly got my life back. During the summer of 2014, we moved up to Park City. While I moved the house, the children spent the summer in Madison with my family. By the fall of 2014, I co-founded the Rare and Undiagnosed Network (RUN) because I never wanted another family to go through what our family went through alone. I never wanted a parent to feel like they were in that very dark place alone and angry. I wanted to give rare and undiagnosed families a home.

RUN changed my life. RUN gave me a mission and a purpose. RUN gave me a rare and  undiagnosed family.

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The RUN Family event on Tuesday night was extremely emotional for me. It was a reminder of how far I have come since I first moved to Utah over three and a half years ago. My RUN family has completely stolen my heart and made me a better person. Although we are all suffering emotionally, physically and financially, we are not alone. I am more calm and more strong because of my RUN family. I am more motivated and energized because of my RUN family. I love each and every one of my RUN families.

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The move back to Wisconsin for Justin’s new position with the Milwaukee Bucks has been a good move for our family. Justin brought me home. We are only fifty minutes from my family now and we are back at the hospital that saved Ava’s life. We still have our struggles with pain and we are still undiagnosed. However, we know that we can pick up the phone at any time and connect with our rare and undiagnosed families in Utah. We have now met more rare and undiagnosed families here in Wisconsin. I look forward to all of you meeting someday. I look forward to meeting the rare and undiagnosed families that have reached out from all over the United States.

You have all touched my heart and I am forever grateful. Thank you all for bringing me out of the darkness and for changing my life.

Thank you for your continued love, support and prayers.

Much love,

Gina