To Florida we go!!

When a child has a passion for dance she doesn't let a little old bone disease get in her way. This girl gets creative and is always teaching herself to do new tricks using the therapy swing. She spends hours on this swing and the new one everyday. It has been really great to have something like this inside that she is able to move on so she isn't spending as much time sitting still. It's always fun to see what she comes up with.

The journey continues and this next stretch takes Brent, Alex, and me to West Palm Beach, Florida, for a consultation with a highly respected doctor there. We recently met with the team of Alex's doctors at Vanderbilt and had good but difficult conversation. Because of the rarity of this disease there are some questions that we have that they do not have answers for. We are thankful they are willing to say when they don't know but it is also very difficult to navigate and choose the best treatment options when there are so many, we don't knows, in the equation. We are exploring every possible option and that is what is leading us to Florida. We will have the chance to visit with my dear Aunt while we are there so that will be an exciting addition to the trip and we have promised Alex that we can play on the beach at least once while we are there.

We have already done a virtual consult with this particular doctor so we have had the chance to discuss Alex's situation on some level and he has seen her imaging. Even with the complexity of her disease and how it is destroying her femur he feels like there are options for her treatment that have not been offered to us by our team at Vanderbilt and that could improve her quality of life. We have also had the opportunity to speak with parents of children who have different diseases but similar situation with isolation to a femur. This doctor is one who came highly recommended by many of these parents and from other professionals that we have spoken with. It has been really neat to see how God continues to line people up and direct our steps. We still find that there are a lot of ups and downs along the way and plenty of times when we wish we could just have a firm plan NOW and be able to feel like we are finally moving toward a solution.

We expect to need to consult with at least one other out of state doctor before having all of the information to be able to make the best decision for Alex.

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I have to share a little Alex story. Another situation where this little one reminded us that if we look hard enough we can find a positive. When we first found out we were going to take this trip Brent told her we were probably going to Florida to see a doctor. She got quickly excited about it because she knew it would mean seeing Aunt Peggy and the beach, which she loves. Two days later we found out there was an issue with our insurance covering this consult and we didn't think we would be able to make the trip but told her we would be continuing to research options and see if there are other doctors that we should go see. Brent and I were both discouraged about what seemed like another closed door. Alex looked at Brent, smiled and said, "It's okay Daddy, maybe the other doctor we need to see will be in a state where I have never been to before. I love going to new places." I was not home at the time but Brent called me and told me about this conversation and said that one day we will learn from our girl and look for the positives. She encourages us so often.

Thanks to the fundraising that has been done we were able to work out doing this consult out of pocket and be able to get this piece of much needed information about her situation.

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Before we knew about any plans for next weeks trip to Florida for Alex's appointment I was given a generous gift. I had the opportunity to take five days vacation in Florida at my Aunt Peggy's house with my dear childhood friend, Rebekah. It was a beautiful week of rest, exploring the everglades, walking on the beach, and visiting with special people.

Probably my most favorite part of the entire trip was going out onto the sea wall first thing in the morning and having my devotions and writing in my journal. I had more uninterrupted time to read my Bible, pray and journal than I have taken in years. During these quiet mornings I would watch the water, the birds, fish, manatee, and dolphins and be amazed by the stunning beauty of God's creation. I couldn't help but think back over the last ten months and all that has transpired and feel a lot of emotions. I realized that I felt so many emotions in the early weeks but I thought I had to keep it together for the other kids, for Alex, and just so that I could be strong enough to continue doing the necessary tasks in the day to day so I pushed them down and didn't deal with them. What I realized during these days sitting and praying by the water is that I had stopped feeling. I had pushed the emotions down so deeply and for so long that I wasn't feeling anything about our current situation. It just feels easier to not feel than to deal with the feelings. When something upsetting would happen I would be frustrated for a minute but I would not really deal with the emotions in that situation. Having this time to re-focus without all of the distractions of daily life at home I began to feel all of those emotions coming back up and knew I needed to allow them and deal with them. I felt that if only I could cry I would feel better but I haven't quite gotten to that place of emotional freedom where I feel like I can let myself cry. I am sure that day will come and honestly I am praying it will but I am also afraid that when it does I won't be able to stop.

There is a part of me that wants to appear stronger than I am and only talk about things that are going well and share when we are encouraged by something but that would not be real. That would not allow you to understand the reality of life as it really is. Even in the struggle, the dark, frustrated, or sad moments, we know God has not forgotten us. We know he goes before us and has a plan for us and it is in the amazing beauty of his creation that I am reminded that if he cares enough to give us the gifts of this unbelievable beauty all around us then he cares about our struggles, our feelings, and every detail of our lives.

So what are we praying for specifically right now? We are praying for safe places to feel and allow our emotions to be seen. We are praying for safe travels, valuable appointment with this doctors, wisdom for the doctor, answers for our questions. We are praying for Grandparents keeping the other kids while we are away and for the other kids to also be free to deal with their emotions, grief, sadness and whatever else during this difficult season. That we would all continue to trust God and his plan for Alex's life and all of our lives. We are also praying for each one of our doctors, for wisdom for them, for continued honest conversation, and peace and agreement in whatever decisions are ultimately made. We are praying for Alex's side effects to the chemo to subside so that she is able to eat better and stop losing weight, and that she would begin to sleep better during the night. We are praying most of all for healing for Alex if that be God's will for her and that we would be able to continue to trust no matter what happens.