The trick is to Enjoy Life

A happy, fun post.

Update: Annabelle is beginning to communicate a lot of pain, discomfort and anxiety as the disease does what it does best - ruin lives .. .. .. as a family, we are trying to figure out how to navigate these waters in the waves they come - but for the intent of this post, I wanted to share some fun and happy news so we can all have a reason to smile and lift Belle higher in our prayers.


Virginia Beach
The last time Annabelle was able to visit a beach, she had just survived a week where she held Jesus's hand, but he choose not to take her so soon. The moment Annabelle recovered and we were given the clear, we jumped on a plane and took her to Disney World and the Beach. 

She does not remember much from that trip, but she does ask often about the ocean, sharks, dolphins and swimming. A few weeks ago - we took Annabelle and Madelynne for a quick beach trip, and it was everything our little family needed

• The girls flew kites. 
• They visited the aquarium and pet a sting ray. 
• We played in the ocean, suntanned, cheated beat daddy in Putt-Putt. 
• They swam, we laughed, our toes were in the sand and naptimes/bedtimes were ruined.
• It was perfect. 

Annabelle declined quickly towards the end of the trip, but she still managed to enjoy as much as she could before we needed to bring her back home.

Dance Recital

We could never, ever thank The Dance Company enough for the gifts they've given that have enriched our girls lives thru dancing. Annabelle is our wild child and loves to dance and express herself. The day we returned home from the beach, the girls had their dance recital. They were in two different shows so the full day was busy running back and forth between shows but it was so fun. Madelynne and her dance class did a fantastic job and she performed beautifully on stage, absolutely shining! 

Annabelle's show was a bit different. For starters - they were a group of three-year olds (enough said?). I tip my hat to their teacher and the teachers aide for doing such an amazing job this year. Their dance was about a Chicken. Annabelle absolutely could not wait to perform on stage in front of everyone, but the moment the lights came on and I saw my little girl on stage, the butterflies flooded my tummy. The music started and she began to dance... I held my breath... she kept dancing .. .. .. .. .. but wait - oh no! What is she doing?! I couldn't breathe, what was happening??? She walked in front of all the girls on the stage and looked up at her teacher. Oh no - this isn't happening, not my child, not in front of hundreds of people. Is she ok? I wanted to yell "Annabelle, get back in line and dance sweety!" She stood directly in front of her friends as they were dancing perfectly to the music on key. She then looked at the audience. Without a blink or second thought, she lifted her arms above her head and I held my breath and covered my eyes "Oh God, I can't watch!" She then opened her mouth to the biggest smile you've ever seen and with her fingers touching way above her head, she started spinning, and spinning and spinning and spinning just like a ballerina. The audience roared into laughter. My adorable Annabelle, stealing the show and absolutely doing HER OWN thing as usual, as with everything in her life, she's spinning, smiling, laughing and making all those around her burst into smiles with her. I shook my head thinking "I cannot believe that's my child - I cannot believe she's doing that!" AK said, "Oh yes you can, that's our Annabelle. I wouldn't expect anything different!" 

Memorial Day Weekend

Annabelle was able to fully enjoy herself. She played with lots of cousins. Her and her sissy played cornhole and fed the goats while mommy and daddy enjoyed a cold beer and played horseshoes. The long weekend was unfortunately very fast paced because of all the places we needed to be, however Annabelle didn't want to stop. She pushes herself each and every day to enjoy life, despite the world trying to bring her down. Annabelle is our little hero. I have never seen a child so full of life and optimism as we do in Annabelle. She doesn't know a stranger, she loves everyone. She will have a tantrum without a second thought but will land a kiss on your cheek the moment she's finished. She will tell you out of the blue every single day how much she loves you. Each time we hear those words - the world stops and everything seems justified. All the fighting, tears, money, sleep deprivation, pain and fears are worth it when she finds you in the house and says "I love you so much mommy", gives a hug around your legs and then runs away. She's an angel in disguise to our family for sure.

She isn't scared of anything. She kissed a frog twice on Sunday!
.. unfortunately, I am sad to report the frog did not turn into a Prince.
Annabelle was equally disappointed.
Madelynne just screamed and ran away at the suggestion to kiss it!

 

Memorial Day 

The Guilty Ones MC invited us to join them to watch the Memorial Day Parade in front of their home. AK had to work but the girls and I packed our bags first thing and made our way to visit our 'Motorcycle Friends'. We waited for the parade to start while all the kids ran around playing with one another, I sat on the porch enjoying the smell of burgers on the grill and the most humble down to earth people I've ever had the pleasure of getting to know. They literally welcomed us to their annual party with wide open arms, so much love and a chair pulled for us to sit. I didn't want to leave. Annabelle waived to everyone in the parade saying "Happy Morial' Day!". I challenged some of the Guilty Ones bikers to a game of cornhole, the President of the MC's wife agreed to be on my team. . . . . we each made 3pts, that counts for something, right? Clearly we lost. Quickly. But the fun we all day and time spent together, getting to know these guys and their families even more was absolutely heartwarming. We already feel part of the family just as they are part of ours.. and if I didn't know better..... I think that's just how these motorcycle guys work... one big family :)

The evening was spent with Annabelle's one and only, best friend in the whole world, her tubey-buddy, Ryan. Ryan and Annabelle both share this painfully rare disease. Him mom and I met a few short weeks after Ryan was diagnosed and a week before Annabelle received her diagnosis. The day I heard the words from the doctor, I called his mommy and sobbed - she was the only person in this world that knew every single fear and thought that was running thru my mind. Ryan was the only kid in the world that could understand the pains and discomfort Annabelle was experiencing. They are just a few months apart in age, both brilliantly smart and both full of life and personality. Annabelle is always there for Ryan when he needs her, before surgeries or when his worry is unbearable, Ryan was there the moment Annabelle finished her big surgery, he held her hand in the ICU and whispered "It ok Annabelle, we tubey-buddies forever now". They have a bond that is out of this world. His mommy and I share the same. We decided to spend the rest of the holiday weekend together - celebrating each other and not around food. Laughing and watching the kids play, checking tubey's, enforcing rest and shielding them from the sun bc their bodies cannot balance their own temps, calming 3yo tears over food and loving on all our babies.

For anyone that reads Annabelle's story or has met this rockstar, you will know instantly just how much she has to teach the world. Annabelle brings life and sunshine into every room she walks into. She is fearless and strong, but she's a broken little girl that is fighting a bigger battle than anyone I know. Annabelle is truly a gift from above. While we would never ever ask for this life for our child, we are so grateful that God choose us to be her parents, to love her, raise her, fight for her and care for her. What we didn't know was how much God has nourished our lives thru Annabelle. We are thankful every day for both the girls we have been given, the friends and family that surround us but mostly - for the open hearts and life that Annabelle puts into each and every one of us.. the life and smiles we never knew we were missing until you see her bouncing curls and hear her belly laughs.