Livia’s diagnosis has created a new life for us. A life that has opened our eyes WIDE open. It has also brought many opportunities. These opportunities have ranged from small moments to big trips like going to Disney, to newspaper articles, to barn quilts, to prayer blankets and dolls, to meeting new and amazing people and to opening our hearts to this world we live in.
Disney was such a whirlwind of emotions. I was so incredibly nervous about this trip. I wanted to go so bad because I wanted all the info I could get. I wanted to meet some of the people face to face that I had been corresponding with over email and phone. The nerves came in knowing that we would see children in later stages of this disorder, and I didn’t know how I was going to handle it. I didn’t know how I was going to simply address these kids. We got to Disney on a Tuesday. We met our wonderful friend John who lives in Tampa for dinner Tue. evening. It seemed like every child that walked or strolled by me I was looking at wondering if they were affected by MPS. I wanted so badly to “put it away” and just enjoy my time with my family at Disney, but we were there because of MPS and we were there to become aware. It was so much fun to watch Liv in an environment like Disney. She didn’t have to be in a car seat in any of the buses, shuttles, etc. She really enjoyed that freedom! We went to Magic Kingdom on Wednesday and Animal Kingdom on Thursday. Thursday evening our reality was thrown right in our face. Thank goodness we were with Stef and Jut during this “breakout session.” We had started seeing children around the resort, but didn’t know exactly how they were affected. During this breakout session, all the different types of MPS went to their designated rooms for a meet and greet and to ask questions. The four of us, all newly diagnosed, walked into this room with families whose children has a terminal non curable disorder. Talk about nerves. We chose to sit behind a family that has a daughter and a son both affected in the late stages who are both wheelchair bound. There were children in all different stages. We heard questions and answers about things we probably weren’t ready to hear. We heard about people’s situations that are far off worse than ours. Jake had a hard time and had to excuse himself from the session. We just ended up leaving and finding our girls and moms and enjoyed Mickey’s Magical Christmas. I often wonder how I don’t go crazy with these up and down, in and out emotions. Writing this I can’t help but snicker that I was at one of the happiest places on earth talking about our dying children. Friday was my birthday and our all day conference. Mom and Cindy, bless their hearts, took the girls for us and stayed at the resort while Jake and I were at the conference. I left the conference a couple times to feed Finley. It always worked out that I left during a break or during a session that I really didn’t need to be at. We did learn a lot, and my science brain kicked on and I learned some really interesting things. We also learned that money rules the world and we are in a waiting game. Clinical trials for MPS II are starting within months, and if all goes well and good results occur then they will start trials for MPS III A specifically. I’m hopeful for this and can only hold onto that to get me through this. I want to say that meeting some of the MPS III kids that are in the middle and late stages I had somewhat of a peace about it. I talked to them, held their hands, and showed them the respect that I would want someone to show my daughter. I wanted to scoop all of them up and make everything better for them. Friday evening was a great dinner with the moms and then Jake and I met up with Stef and Jut for a night out at down town Disney. Saturday was our departure day. I am glad that we went. I’m so thankful for the families that we got to meet. There are some AMAZING people out there who have encouraged me and fueled my fight. I feel better being home and getting back into our routine. I’m aware of MPS every single day. But it’s different when we are in Hubert world. Livia is such a bright spot in my world. She is an amazing child that has brought opportunities to my life that I didn’t even know were out there. We’ve made life long friendships that are to be cherished. I’ve become a stronger person not only mindfully, but spiritually and even physically.
I have to thank my mom and Cindy for going on this trip with us. It would have been very difficult without their help. It was also really nice to make memories with them and enjoy the fun aspects of the trip. I also have to thank everyone that helped us financially with this trip. We could not have gotten to this conference without help. Everyone that chose to help us were very generous and loving. Thank you from the bottom of my heart.