We made it! 

Our day started early as we had to go pick up our rental vehicle. We decided early on that renting a bigger vehicle was essential if we were going to attempt this drive (4.5 hours) with Tori – given her “love” for the car – and given the amount of stuff we would have to take. We hoped that a newer, smoother car ride might help her be more comfortable. 

So, we found a good deal through AAA for a mid-size SUV and thought that would be plenty of room…

…it wasn’t.

I walked out to the assigned vehicle and opened the back to evaluate the space and I knew immediately that it was too small. My trunk is bigger than that was! Her adaptive stroller would not have fit in that space.

One thing we have already learned is that having a child with special needs requires a lot of stuff. A lot. Add in adaptive equipment and you are basically moving in wherever you go. I have a feeling we are going to have to get a bigger vehicle once her permanent stroller arrives…it definitely won’t fit in our current cars!

This photo shows MOST of our partially unpacked stuff. Only the gray bag on the left is our stuff – the rest is for Tori!  

The manager of the rental car company was so kind and upgraded us for a major discount when I explained the reasoning. That unexpected kindness was so appreciated!

We left on time and headed north. Tori slept pretty well though she definitely had her moments of protesting. We had very few incidents and are so thankful. That was the longest she has ever been in a car.

We stopped once for lunch and to change her diaper. The total travel time was about 5 hours, which isn’t bad at all!

We got settled in and then headed down to the pool where we met some of the other families. Tori had never been in a pool before so we were excited to try!

   
    
The pool was a little too chilly for her, so we tried the jacuzzi next. It was warm, not hot. She loved that!

    
    
 Floating!

  
    
 

After we all got cleaned up we headed down to the welcome dinner. As we looked around at all of the families in attendance, a mix of emotions ran through our hearts. On one hand, it was amazing to be in a room where no one would be surprised by the sounds of a suction machine or feeding pumps, where we are normal for once; but, it was also so heartbreaking to look around at all of these families who have terminally ill children (and those whose children have already passed) and recognizing the heartbreak that each and every person in that room has experienced or will experience. 

Overall, joy emanated from each person in attendance. This is a huge family reunion and with that comes excitement, joy, and love. Watching the moms and dads with their special babies/children was so wonderful. Such devotion and joy in the midst of the worst of circumstances. 

    
Tori and her friend Gemma…

 Jim Kelly welcomed us all to the symposium and told his story about his son, Hunter. 

  
He talked about how his wife, Jill, is the one who told him that THIS was the perfect use for his name/fame: leukodystrophy awareness and action. Indeed, their foundation has helped so many families! We will hear more tomorrow about the latest research and other progress reports.

Team Tori couldn’t stay long after the dinner because Miss Tori had had enough of being good 😉 Haha. She was tired and we knew it would be best to just come back to our room. We always try to do what is best for her, even if it means that we miss out on something.

We know this will become an annual trip for us, and we are so excited to spend more time with these precious babies and families in the coming days.