Tuesday Evening
I flew home as fast as I could to finish packing our last minute things. Annabelle was laying on the couch and just watched as I made passes by her over and over. She knew exactly what was going on. My mom and grandmother came to say goodbye to us before we left, but Annabelle didn't want anything to do with either of them. She just watched cartoons and lied down on her blanket.
I packed two piles. The first pile was everything our family would need during our 3 day Florida trip with friends. AK would be loading the car with those bags and hitting the road first thing Wednesday morning. The other pile was the carry-on bag for Annabelle and I to go to Cincinnati. It had to hold everything we would need for two days, including all her medical supply. I knew that from the moment I left my house until noon the next day, I would be carrying her everywhere so packing a bag was very strategic. Before hitting the door, I went to my bedroom and took multiple deep breaths.. a fast shower and ran downstairs to find my mother and grandmother mischievously planning... mom somehow talked our grammy into a spur of the moment, no clothes or bags packed, road-trip with me and Annabelle to help make the trip easier for us. (Easier? Not sure. More fun and great distraction? Absolutely.) Before I knew it, I was saying goodbye to AK and Mady and Annabelle were standing in the driveway whispering to each other and hugging for extra long periods of time as they said their goodbye's. They argue often, but when it comes time for Annabelle to have to go to Cincinnati, they both lean on one another and share into that sisterly bond. I kissed Mady, picked Annabelle up, and the four of us loaded into mom's tiny sports car to head to Alexandria, VA for the night.
We stopped at Joe's Crab Shack to avoid the rest of Fredericksburg and NoVA traffic.. the night was perfect. The drinks were delicious, Annabelle was able to play while we ate and the food... oh, the food was steaming perfect!
I couldn't sleep Tuesday night. I knew we needed to leave before 5am and was worried we would oversleep. I was also scared to death all night about not feeding Annabelle and how she was doing. She tossed and turned a lot but didn't wake much. Mom and I got up shortly after 4am and began to get ready. I dressed Annabelle and could immediately tell she was weak already. The airport wasn't far away, mom dropped us off and we made our way to our gate. Annabelle didn't walk at all. She didn't want to even stand while we waited to board the plane. In between begging not to go to Cincinnati, she would take short naps, wake up, cry, and go back to sleep. It was a hard flight...
Our plane landed right on time. As I carried Annabelle, for what felt like 3 miles, across the airport from our plane to Enterprise pick-up, she begged and begged not to go to the hospital. I hardly responded. At this point, engaging in the conversation just gives her false hope that she has an opportunity to negotiate out of the inevitable. We boarded the shuttle to enterprise and she began begging again, in front of everyone as they stared at me... I felt like I stood 2 inches tall and all I wanted to do was break down and cry just as hard as she was. I want her to see how much this is killing me too, but I can't. Being strong but sensitive, tough but compassionate is. so. hard!
Once we got our car, she fell asleep. Fortunately, she was too weak to continue to fight and cry. Our drive was about 30minutes and I swear she was asleep within the first 5m. Thank. Heavens! It gave me a few minutes to pull myself together. Breathe and freshen up from the hustle of the morning.
As soon as we arrive at the hospital, it began all over again. This is when I see that diagnosis of "anxiety". It's in full motion as she panics, her head whips from left to right, her breaths are shallow and weak, her voice is shaky and her eyes are so deep and dark with sadness and defeat. We sit in the waiting room and she won't even sit beside or look at me.
She sobs, "Why are you making me go mommy? Please, PLEASE let's don't go to Cincinnati. I don't like the hospital! Why do you always make them hurt me? Please MOMMY!!! .. please . . . . . . I don't love you, I'm not your friend anymore"
..... she has no one anymore.
She's completely alone, in a huge city with her mommy and not one person is in her corner to protect her. I look into my daughter's eyes and can see clear as day how much I am damaging her, and there's nothing I can do about it. I will never be able to repair this emotional trauma. She's pleaded for hours, Ive tried talking and explaining to her why we have to do these things, she begs me not to hurt her and I do exactly that - I drive to a hospital, carry her inside and hand her over to a nurse who will then bring in a friend as the three of us hold her down and do exactly why she's begged not to happen.
The lab draw was quick and painless. She got it on the first stick but did have to do some digging to find the vein. Annabelle never pulled away. She screamed for us to stop all the way until the needle was in her arm, but then she held still until it was over. They also needed a urine sample. After the blood draw, we tried to do that but she didn't have to potty.. I agreed to take the specimen cup with me and collect next time she potty's and just drop it off to any of the three hospitals we would be visiting over the course of the day.
Afterwards, we headed to the next hospital where we would pick-up her wheely-chair. I hoped it would boost her spirits since the bad part of the day was behind her, but that's the thing with depression, trauma and kids that suffer this life.... shiny distractions hardly work anymore. Without a doubt she was happy that we were picking up the chair (and so was I, my arms were nearly ready to fall off from carrying her everywhere), but the exhaustion of defeat was just far too heavy for her to force a smile.
These are the moments that kill me the most.
After making some adjustments and mechanical fixes to the wheelchair, I signed our $8,000 bill and we left. Annabelle wouldn't eat any of the snacks or drinks I had for her and I knew she needed a feeding ASAP so we decided to have a lunch together. Perhaps it would cheer her up? Not the case. I did hook her to a pretty fast feed, because she needed it. But it made her nauseous.. she was then mad at me for feeding her and making her tummy hurt. It was a lose - lose kinda day. Fortunately, right after lunch, it was time to head to our third and final appointment of the day = Human Genetics. The appointment was across town so Annabelle fell asleep on the drive. We got there early and I sat in the car and prayed before going inside.
Dear God. Hear my prayer, please.
I am broken.
I am shattering with every grain of salt this journey is pouring into my wounds.
Why did you give me a baby so broken? Why do you think I am strong enough to make it thru this? What is the purpose of torturing this innocent child? and hasn't it been enough?
I can't see clearly anymore. I can't tell the difference between fighting for my child and protecting her from the cruel world.
I can't feel anything. My words, patience and judgement to all those around me has become so jaded and callused to anyone's feelings.
I know I am strong, thru you. But I am so weak in my own knees.
I used to parade with confidence and now I question every decision I make.
Please, give me the clarity, knowledge, wisdom and love that I need to continue to take care of this baby girl.. because I don't know if I have it anymore.. and Annabelle needs a mommy that does. A mommy that can feel the love she gives to the world, a mommy that can see the progress she is making or the ailments I need to recognize to help her doctors continue to care for her. She needs a mommy that can make only the best decisions for her. My family needs me God, and this journey is tearing me apart.
Help.
I was so weak when I looked at the clock, it said 1:20pm. Our appointment was at 1:30pm and I knew I needed to pull myself together and get inside for our appointment. I re-assembled the wheelchair, gently woke Annabelle and we made our way inside.
Dr. Burrow's is wonderful. Our appointment was every bit of an hour and a half of talking, discussions and planning. When we arrived, he already had an idea of what he wanted to happen and where our next steps needed to be. He did an evaluation and exam with Annabelle (confirming again her Hypermobile and Hypertonic Joints), we reviewed past labs and talked about the progress she's made as well as her global decline. He ordered that it's time we complete our Neuromuscular DNA Sequencing Panel and also prepare ourselves to begin what we've been working towards - Genetic Exome Testing. (!!!)
When we return, AK and I will sit down with Dr. Burrows and have a heavy discussion about the testing. The positive in doing this type of test is that we may finally get the answer we've been looking for, the diagnosis for Annabelle's global issue. But the downside, is that we will also likely get a lot more information about our baby girl that we haven't bargained for ... and my never want to know. This testing comes with a price, (not just literally, because yes, it does, and it will likely be cash as hospitals and insurance do not pay for research and testing like this.) Learning Annabelle's genetic story requires deciphering all possible gene interactions. We may learn about disease-carrying mutations that she has... terrifying diseases she could carry but never develop. Or diseases she can pass onto her children. We may learn about much more that is hurting her that we never imagined or may learn that she has multiple precursors such as cancer's, huntington's etc. More importantly, AK and I will also be tested in order to cross reference her DNA with ours to verify a positive diagnosis. This means, AK and I will find out which of the two of us passed on whichever gene that is hurting Annabelle.
All of these are burdens that I imagine will be unbearable to live with. The thought itself makes me ill.
When we talk with Dr. Burrow's at our next appointment, we will discuss just how much information we want to LOOK for and how much information we want to KNOW when we get the results. In the meantime, we have a lot of thinking to do...
I left, once again, feeling more exhausted than hours prior. The message and quotes on the walls as we were leaving, made me stop. I read each of them to her as we left... I needed to read those as we walked out of the hospital for the last time of the day.
Annabelle and I stopped for a bottle of water for her, and a terrible-awful-beverage choice for me.
The trip to the aquarium was intended to be fun. We had a few hours left of the day, Annabelle still had not gone potty so I was still walking around with an empty specimen cup (we never did get a sample. She didn't potty for the first time all day, until late that night). I kept pushing fluids and she was just still too weak. The fasting took a huge toll on her body. I also think she was being slightly spiteful and holding it because she was still so mad with me. The aquarium itself was beautiful as always. I tried picking Belle up to let her see the things in the top windows, she didn't want me to touch her. I offered to do face painting (and I even told her I would get mine done too!) it didn't work..
This is the face of "broken" :(
As we walked around, hunting for a blowfish in every single tank, an employee came up to Annabelle and asked why she looked so sad. Annabelle told her it was because she has boo-boo's that won't go away and we keep having to come here to get pokes. The poor employee forced a smile and said, "let's go find more blowfish", and she led Annabelle towards another tank. Within a few minutes, the manager approached Annabelle on one knee and asked if she likes penguins, she halfway smiled. We took the giant elevator to a special room at the aquarium and inside the room were a bunch of little penguins. It sure didn't work to break the sadness from her heart, but it did bring a smile to her face as they squawked at one another and she got to pet them.
Finally it was time to head home. We dropped the car back off at Enterprise, shuttled to the airport and had dinner. As we were approaching security, I told Annabelle that before we get on the airplane to go to Florida, she had to smile. Because noone is allowed to go to Orlando, Florida without smiling all the way there. It worked... she gave me a smile, waved two thumbs up for daddy that we were on our way and we headed to board the plane.
As she laid in my lap on the plane that night, I watched the clouds pass by us.
Belle told me we were in heaven.
I feel like we're in hell. 
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