Team Tori bucket list #15 - Behind the Scenes

I can think back to the days of waiting month after month to hear if the Brackbills were pregnant with Tori. Lesa and I spent time meeting at Starbucks to hang out and chat and we would pray for her conception. There was so much joy and celebration when we heard the news that they were pregnant.   Tori is a precious gift and so are Brennan and Lesa. They were born, designed and created to be Tori's parents.  To read Tori's full story you can see their blog here

Recently Billy and I had the opportunity to join The Brackbills on one of Tori's bucket list adventures.  Lesa does a great job of keeping her blog updated and quickly getting out news about what they are doing.  So, when I found out we would be joining them on this trip I decided I wanted to use my camera and experience to give a "behind the scenes" look at what it takes to live with a child diagnosed with Krabbe.  It did not take long before I had to hold back tears as I watched how tender, loving and patient they are while dealing with Tori's illness.  Their time is filled with caring for the constant needs that Tori has during the day. No matter what they are involved with or doing she is their priority and her comfort trumps everything.

Brennan and Lesa both are so kind and loving toward each other and Tori.  They are under tremendous pressure to keep a strict time schedule with feeding and medication.  It takes a lot of work just to get in and out of their van with all of Tori's equipment. And they have to be vigilant and aware of every sound she makes in case they need to spring into action to suction her mouth or adjust her body to another position. Simply put, they have no down time.  Even with all the pressure and stress of each situation they were having fun and enjoying time with one another.  They would laugh, joke, goof off (mostly Brennan) and talk about things other than Tori.  I saw a couple enjoying time together, exploring, living life and choosing joy despite difficult circumstances.  I saw them making memories together while they are out and about with their baby.

Breannan and Lesa are an incredible team.

Brennan and Lesa have a terminally ill child.  Tori requires a tremendous amount of work and time.  On top of that they even have to deal with people questioning their choices as parents and of course everyone has a thought or an opinion on what would make life better for them or Tori.  (People are often brave on a keyboard and by brave I mean they say stupid things) But, the theme of their lives is grace.  Brennan and Lesa both are a testimony to God's grace in their own lives and they choose to handle difficult people and difficult circumstances with the same grace.

If I could sum up The Brackbill's attitude and view of their life it would be with something that Billy and I heard Lesa say probably half a dozen times or more while we were with them. And it is this,

 "God has shown us so much favor during all of this"  

Does that challenge you as much as it challenges me?  They do not believe in coincidence, it is all evidence of God's grace and favor toward them.  From the Thursday game being rained out in Philly which allowed us to go earlier on Friday, to our seats at the game and even the cloud cover in NYC which made for great photos and on and on.  Lesa would repeat that phrase, "God has shown us such favor."

I ask that you take a minute to follow Team Tori on Facebook if you haven't already. You can read about Lesa's account of our time in Philly and NYC by following these links to their blog. I would like to take this time not to share all 600 pictures of our trip but to share with you just a glimpse of what it is like to watch this sweet family and the impact they are making as they chose to walk through this difficult time with joy.

It is no small task to unload and load all the equipment and things needed for Tori's care. It begins early in the day as Lesa is up with Tori's first feeding and spending time preparing and planning medications. 

These two work together so well together caring for Tori. Everywhere they go they are so gracious to answer questions about Tori and to educate others about her diagnosis. 

Going through security can certainly take a while with all the bags and equipment so Brennan went on to get a head start getting everything checked. The security guy was so genuine and asked a few questions about Tori.  As we walked away I happened to glance back to see him contemplating deeply. 

Lesa is so faithful to take photos and post them on social media and her blog.

Enjoying the game together while snuggling with Tori

They are constantly loving on, talking to, kissing and hugging sweet Tori. 

The cutest fan at the stadium! 

These two....my word they are funny together. 

The weather was perfect and Tori was so content.  (God's favor on display)

Getting ready for bed after an exciting night of baseball.

Saturday we headed to Staten Island to ride the ferry over to Manhattan.  From there we walked to Battery Park and took a boat to The Statue of Liberty and Ellis Island.

Getting Miss Tori set-up and comfy in her luxury ride.

Lesa does such a good job documenting everything they do.

Feeding time!  

A schedule is a schedule and they are pros at getting her hooked up and fed no matter where they are.

Brennan struck up a conversation with one of the workers on the ferry.  He does such a great job of sharing their story and creating awareness for her disease. 

The gentleman was moved with emotion and you could tell he wanted to do something so he offered to take us out on the back of the ferry to get a group photo.

Once we arrived at Battery Park it did not take long for Lesa and I to break out the cameras.  The clouds were so pretty and created a great backdrop for the city skyline.  

Once again a testimony of God's favor.

The work and care for Tori is constant and both Brennan and Lesa instinctively spring into action the instant she needs something. 

Before heading back home some of Tori's buddies who live in NJ came over to meet us and have dinner.  I must say if you have the chance to dine with Italian New Yorkers you should do it and go wherever they lead.  We had some awesome pizza in the city!

It was so encouraging to sit with these sweet families and listen to them share about their kids and the struggles they are facing.  During the course of our time together there was not one complaint about their circumstance.  There was laughter, conversation, good food and a great time with friends hanging out with their children.

As a matter of fact, the only tears shed were from me.  I was shown a video of Tori's buddy Sal when he was 6 years old dancing and singing.  And now he sits silent confined to a wheelchair unable to speak or move.  It was overwhelming to me and I struggled to hold back the tears.

 Leukodystrophy is a horrible disease that takes so much from these children.  But one thing that it does not take is their parents' love and commitment for one another and their kids.  

One of the boys, Giovanni has endured countless hospital stays, surgeries and therapy in his short little life.  His mom made this comment while sharing his story,

"He was born for this."

This little guy was full of spunk and joy.  He taught Billy how to play Minecraft on his iPad and he devoured a bowl of goldfish as we sat around the table.  He thinks he is big stuff and no one is going to convince him otherwise.

There was no lack of snuggle time for Tori during dinner.

After a great day we headed back to Harrisburg.  One thing you may not realize is

 when The Brackbills travel they cannot even sit together up front.  One of them must sit in the back with Tori in case she needs attention or to hook up her feeding tube to keep her on schedule.  

 I am so thankful that Billy and I had the chance to join Tori and her parents on one of her bucket list adventures.  We have known Brennan and Lesa for a number of years now and while many things about them are the same there are some things that are very different than when we first met them nearly 6 years ago.

They are a couple that love The Lord  and trust Him completely with their lives and their daughter.  They are committed to praying for her healing and have resolved to enjoy every moment they have with Tori.

They are a great husband and wife team.

They are a living testimony of how to see God's grace and favor in all situations, not just the 

"good" ones.

They have fun.

They love one another dearly.

They are incredible parents to a sweet little girl.