Hope turns to a flood of worry

Fear.

Anticipation.

Sadness.

Worry.

Hopeful.

We've been so excited for this day for weeks now. The potential to finally have found a team of doctors that can help us, help give us an explanation for all Annabelle's pains and failing body, the hope for a true diagnosis.. it's here! The day is here and I am sick to my stomach. What if I can't deliver the right information the doctor needs to hear to generate the right wheels for him to help us? What if Annabelle is so upset and misbehaving while the doctor is in the room that I am more distracted by her and cannot answer their questions clearly. I have SO much information they need to hear, such a long history of multiple system failures and a constant up and down journey that always involves another element of weirdness that we can't explain. What if I'm not able to articulate the acute need we have for their help, we are at their mercy, what if they miss a linking piece of the Annabelle-Puzzle that would fill the blank for them to recognize what's happening to my baby. 

I am scared to death. We've invested everything we have into this trip. The costs are coming out of the pockets of beautiful strangers, family and friends who have funded this step of our journey. It's financially draining our family, it's breaking Madelynne's heart that I'm leaving her for three days and it's flourished Annabelle's intense anxiety over the fact we're traveling to a hospital and more doctors. There's such a gamble involved and I pray with everything possible inside of me that this trip becomes everything we hope for.

I told Annabelle yesterday that we have a trip coming up. I almost wish I had recorded it but you would have died inside... It was a hard moment for us to explain where we were going, why we were going, what we'll do there and what it involves. Annabelle is far too mature for her young age of three when it comes to the medical world. She doesn't trust anyone and she doesn't trust me. Her main question was: Why daddy and sissy are not coming with us. She pleaded with tears falling to not go to the hospital, she begged to not have to see a doctor. Finally she asked, "will the doctor take all my boo-boos out of my tummy?". I told her we are going to talk to the doctor and maybe he can tell us how to make the boo-boos go away. She wanted to know if they were going to hurt her and I can't make any promises. I refuse to lie to her and truly believe that the only way she will trust me again is if I am perfectly honest with her even if it's not something I would want her to hear. This is the hard part of cruising this nightmare with an infant into a toddler - the way we conduct appointments and procedures are much different now than they used to be.

Our bags are mostly packed.

3 cute outfits for Belle

3 tops and 1 pair of jeans for me

558873268 face masks

2 bottles of hand sanitizer 

Cross necklace

Superwoman underwear 

Lambie
Mountains of medical reports, labs, tests, etc
Bag of distractions: books, kindle, toys, bubbles, etc.

Our flight leaves tomorrow evening, (Monday) at 705pm. I am working and in meetings all day, then rushing home to gather our last minute things, give our family a flood of hugs and kisses and rush to the airport. Tomorrow will be insane. Bring on the redbull and coffee!

Pray for us as we say our "I love you's" to our little family and make our way on a plane. Pray Annabelle doesn't spike a fever moments before going thru airport security and pray we don't catch Ebola on the plane!!! ;)

I promise to keep everyone updated in the days ahead. 

xoxoxo