For two weeks we've been holding our breath. Annabelle has consistently remained pretty stable over the last several months, with only minor fluctuations here and there. Recently however, things are beginning to shift with much more clarity again. Logic and rationale tell me there are explanations for each shift I see in her health and behavior – my gut on the other hand tells a much different story. I am internally panicking. I am internally shutting down and isolating myself so I can focus only on what I need to for Annabelle. It’s hard. I need for things in life to be still and quiet, consistent and steady so I can read into what is going on without outside influences. I swear, life of a special needs kiddo is utterly exhausting, this is the ride that I dread the very most. The moments / hours / days / weeks when I find myself infatuated and completely absorbed into my child's every behavior because my gut is SCREAMING that something is about to happen. There are not enough words to explain to you just how nauseating that feeling is. Imagine being told today that sometime in the very near future, your precious laughing child is going to be involved in a terrible car accident – you don’t know how much damage and injury it will cause, but you know the fear, unknowns, pain and panic will be there. And you cannot do anything at all about it, but wait. Wait for that moment and predict when it might happen. Protect her and tighten her carseat straps a little tighter when you drive (put a face mask on every time we leave the house), and tell her you love her entirely too much as you watch with your gut sinking. That is where we are right now. We are counting our days and pleading with Annabelle, “Just wait a few more weeks sweetheart, we will get some help in just a few weeks, I need you to hold on until then.” Mark my words. Something is about to happen - I pray I am wrong...
Of course, as much as we need quiet and calm – life hasn't slowed down much for us to allow it. Annabelle’s birthday and her benefit have been filling our weekends back to back. No complaints here, they have been so much fun and deserving of the good time our family has needed. Annabelle has been beyond herself from all the outpouring love and support she’s received the last couple weeks. The sequence of events however, have followed in line with the struggles Annabelle's health has been indicating. The morning of the benefit, while we were getting ready and setting up, I looked at Annabelle and her color began to worry me – within several minutes, her legs began to buckle and her words became slurred.. the color over her skin changed so suddenly from sun-kissed to yellow, almost orange with the scariest splotchy face and dark circles below her eyes. I knew we needed to leave. I gathered Annabelle and loaded her in the car quickly and we headed home. On the way home she cried and pleaded “Mommy, you carry me inside? Please mommy?” I carried her in and laid her in my bed. We got into some comfy jammies and out of big girl undies, but into a diaper and covered up. She looked pitiful, exhausted, and her eyes cried for help. She hadn't done anything all morning, nothing at all out of the ordinary - so why was this happening so suddenly? My heart sank into my stomach and I just knew ‘this is it – something is turning on us’. Annabelle locked eyes with me in the bed until she fell asleep, she whispered so softly over and over ‘my body tired mommy – inside my body is tired.”
There was so much anticipated and planned for the benefit. My heart began to break that she would miss it.... however, our families focus and priority never left my mind. I laid in the bed with her for hours that morning while so many friends and family were working hard to get things ready. Just 2-3 miles down the road, our house was quiet and prayers were pouring from my king size bed as I wiped the hair behind the ear of my angel as she slept.
“Lord be with this precious child throughout this day. Bless our family and all those taking time from their lives to see Annabelle. Let them see not the equipment and medical mask she wears over her body, but guide them to her heart and feel this child's strength. Let them see deep into her eyes that are so bright, full of life, love and innocence. God be with our family today and let us share Annabelle’s story in a way those that are curious can understand. Help us spread the message at Annabelle’s desperation for help from the brilliant doctors we know are out there. Above all God, allow Annabelle’s light to shine so bright into the hearts of all those that love her, that they never take a single day or moment for granted. Let this blessed event be a milestone on our families journey in which we have touched the hearts and souls of perfect strangers we will soon call ‘family’. Because after all, family are those that selflessly love and support one another. No judgments or questions asked, but constant promise to be there for one another, just as you have been there for us. Give our family the strength today God, give Annabelle the strength to enjoy every minute as she deserves. We ask in your precious name, Amen."
Annabelle was able to make the benefit. And by the blessing of answered prayers, she laughed, played, ran and stole the hearts of so many that came out. The evening was wonderful and everything we hoped it would be. I was so nervous about the amount of people that I wanted to meet, share my love, hug and graciously thank for coming out - but in the end, it all came more natural than I could have ever hoped it would. Meeting perfect strangers isn't always easy for an introvert such as myself, but the evening and it's purpose made the conversation all too natural for our family. I was able to meet some of the most humble, incredible people I may have never had the opportunity to meet if not for the benefit. My heart hasn't stop beating so hard since last weekend. There would never be the right words to describe the gratefulness and genuine love I have for each and every one of you that continue to carry Annabelle's name and story close to your hearts. Those that I was able to meet last weekend, those that have donated to this courageous little girl, those that simply love and pray for her, those that share her story to perfect strangers - I cannot thank you all enough. My heart is entirely grateful to have you part of our lives, even if for the unfortunate reason as Annabelle's fight - things are aligned for a reason and having you all part of our 'family' is nothing short of a blessing. Thank you all, thank you from the bottom of my heart. Words, hugs and the grateful tears I shed do not serve the justice for how our family feels. Thank you.
The best news. We were able to raise enough money for Annabelle and I (Ashley / momma) to get to the hospital in a few short weeks. Daddy and Madelynne will stay here at home to keep the normalcy for family as Annabelle and I travel. Once we are there, depending on the amount of tests, consults and procedures the team decides to do, will reflect the price tag for finding answers for our daughter. A cost cannot be attached to our need for answers.. but the reality is that insurance isn't following us out of the state. While devastating - it's not a focus we can consider at this point. We know the best chance we have to helping Annabelle is this hospital and it's team of doctors waiting for us. At this point our only focus is on getting to the hospital and gaining the answers we so desperately need. All else will fall into place and will have to be evaluated afterwards - for AK and I that are SO very careful with our finances, this has been the hardest decision to 'wrecklessly' gamble and pray the traveling and consults are worth the price it's going to cost our family. If this isn't our answer, I have no idea what we will do next. There have been so many brick walls in our way that we have crossed, I don't know how many more Annabelle can climb,only to find there is another wall on the other side. All my prayers and wishes are invested in this trip - everything we've looked forward to I pray will be answered at this hospital. It has to be.. after all, we've never had so many angels praying for us until now - those prayers have to shed light and answer all the questions Annabelle deserves answered. They must!
Here are just some pictures of the wonderful night shared with amazing people. Enjoy!
Delicious pork butts / BBQ
Everyone enjoying the crisp fall evening with some of the most amazing people
Annabelle & her nenaw drawing the winner for the 50/50 raffle!
Time to dance with some of the best! Kickin' Country Line Dancers came out for the night and entertained everyone with their dancing. It was amazing to watch... and just may have been enough to convince me to start dancing again ;)
Cousin Daniel helping Annabelle carve a pumpkin
'Bayside' - the band was wonderful and kept the party moving all evening. Also some of the most humble, genuine and loving people we've ever met. Thank you all for the entertainment for the night.
Daddy's turn to carve a pumpkin
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