Happy 2nd Birthday Annabelle

I don't know how to begin to write this post.. I don't know how much detail to share with perfect loving strangers that are following my daughter's journey. I want to keep this post about Annabelle and the celebration of her second birthday, but it's taken me almost a week to write because my heart and mind cannot stop sobbing. I never knew her birthday would come with such a flood of emotions. I never knew how hard of a wall I would hit and that it would take days and days to recover. Ive never been so bitter and disgusted with the medical world and heartbroken watching my little girl. Our family has been delivered the very worst of the last two weeks and they happen to have fallen around our little fighters birthday. So here is my attempt to share with you all the high level, happy highlights of our weekend with Annabelle Grace. 

Friday, September 20th. Happy Birthday Annabelle!

Thursday night when I laid her in bed and hooked her machines to begin the night feeding, I found myself sitting on the floor with my chin resting on her mattress watching her. AK literally almost had to drag me out of her bedroom, "This is the last day of our baby being 1! She will be 2 the next time we see her!" I was so proud of her as I watched her sleep, but at the same time so sad to reflect on her last 'year'. I could feel the sensation of sadness filling my body but I pushed it away.

Friday morning I was awake and ready for the day far before she woke up. When Annabelle ran into my bedroom, I smiled and turned around and immediately began to sing and dance like a crazy person, "Happy Birthday to youuu! Happy Birthday to youuu!!!....." Annabelle looked at my with a horrifying expression, literally screamed and turned around and ran away! .. I ran after her singing and scaring her the best I could. We finished our birthday song with plenty tickles and giggles. Of course she had no clue what this all meant, but I was determined to make it a happy day for the family. Mady sang to her over and over and before we knew it, the morning was wrapping up as everyone made their rush for the door to part in their separate ways.

Friday was a stressful day at work for me. In the midst of working, I received a phone call from Johns Hopkins. As soon as the number appeared on my phone, I smiled and jumped with anticipation. The conversation quickly led my stomach to drop so fast I wanted to be sick. "Im sorry Mrs. Bishop, your insurance company, both United Healthcare AND Medicaid have continued to deny genetic testing with Annabelle. We cannot schedule her and our physicians cannot continue any testing.. Im sorry". The conversation was much longer and I pleaded for help, resources, other ways to work around this, I even discussed the possibility of moving forward as a cash paying patient and from the tone of his voice, that isn't even an option as you have to have enough cash up front to begin the process... there is no way I can produce the amount of cash that they are discussing. If we do attempt to proceed as a cash patient, the process changes and the consult will need to be reassessed with another physician - to get on the books to begin this process, will take us into the middle of 2014 at the earliest. She'll be dead by then without help. The rest of the details are enough to make you sick to your stomach and I refuse to type them. I hung up the phone and stared at the wall in a daze. I continued to blink to move my mind from what just happened and refocus on work and I struggled. I felt like my entire life just took a sudden shift - a drop 50ft down faster than you can blink and I don't know what to do. My stomach was empty, my heart was POUNDING thru my chest and I looked down to see the hives spreading all over my arms. It's my daughter's birthday, and what kind of news is this?! I was disgusted.... but still, I was at work and needed to stay productive the best I could for the day.

When I got home that evening, I swept Annabelle into my arms and sang to her over and over. I needed to cry but I don't like my babies seeing that.. it makes them feel helpless as if they've done something wrong. I like to wear a smile for Annabelle, always. AK wouldn't be home for a while so I decided to get in the shower with Annabelle. I love holding her skin next to mine and standing in the hot shower together. She lays her head on my shoulder as the water hits her little back and I can let tears fall without anyone knowing. I enjoyed that time with my baby girl. I kept talking to her about being TWO and how much I loved her, how happy I was and how much of a blessing she is to her daddy and me. Annabelle understands far more than anyone gives her credit for. She is extremely intuitive and absorbs so much around her that you wouldn't expect. AK and Mady arrived home and Madelynne was BEYOND herself with excitement about the big surprise that night. She knew we would be going somewhere fun and couldn't wait! I told her to go pickout a princess dress of her choice from the playroom and get ready to go. We dressed Annabelle as Princess Jasmine and then packed all her things to make it out the house and an evening around feedings. I feel like we have to pack half our house to leave these days.. but I try to do it as discretely as earthly possible... any effort to pretend there isn't a tube on my daughter's face and she isn't so sick is my #1 goal.

Disney on Ice - Let's Celebrate!
Annabelle LOVES 'mouse', Mickey / Minnie Mouse. Grammy wanted to do something for her birthday and asked what she would like. I was nervous about the first birthday our family would celebrate without food / going out to dinner (it's what we always do. birthday person gets to pick the restaurant and everyone joins). If Annabelle can't eat, darnit we'll go to a show instead! It was a great idea and worked out perfectly. I couldn't thank grammy enough. She is my rock lately and keeps my head held high and spoils my girls rotten when I can't.

Both girls had a WONDERFUL time at the show. I was beyond impressed at how much they enjoyed the characters. To be honest, I was impressed at how well the show was myself. Annabelle only became restless after intermission and once we hooked her up to the pump. She runs a fever every time she is on the pump, and she gets so sleepy - if she isn't in her bed, she's restless. Still though, she was wonderful and never whined or complained. Both girls had a wonderful time and Mady was in complete awe :) I felt so blessed Friday night. It was the best distraction from the day's news. I didn't even tell AK yet, I couldn't. I didn't know how to say the words out loud and I knew he would get upset and mad and there isn't anything we can do. I didn't want that distraction, burden or worry to ruin our daughter's birthday evening or party..



Saturday. Party Day! 
"You're the Apple of my Eye"


The only food that is safe for Annabelle right now are apples. I couldn't figure out how to plan her a birthday around no food or a cake, and then it occurred to me that I COULD serve apples.. apple juice.. apple chips.. etc. I'll make it an apple party! Apple Of Our Eye! It was perfect.

Saturday morning was a struggle for Annabelle. She didn't rest well Friday night and she was miserable most the morning Saturday. I was becoming so worried about her for the party and prayed she would take a restful nap. My anxiety was rising Saturday morning also. I needed to tell AK what Hopkins told me and I knew it wasn't going to be a pleasant conversation. I needed to start getting my house together and packing things for the party, but my mind couldn't concentrate. I literally felt like I was walking around in a fog and separate from my own life. I needed to put my game face on though. I needed to smile on behalf of my daughters. I needed to make the most of the day for everyone and I did. I gave myself a pep talk in the shower and begged myself to pull it together and relax.. we loaded the van and dressed the kids as cute as they could be and finally started to make our way to Carytown, Cartwheels and Coffee for the party.

I wanted to be there early to setup and have everything ready because I knew my nerves wouldn't be able to handle anything last minute. I was so anxious to get the day finished. When we arrived, the girls quickly began to play and the laughter started.

With each little friend that joined us for the party, the noise level grew. and grew. and grew. and grew. It quickly turned into complete stimulation overload in my head but I looked around and everyone smiling, and the kids running and playing and laughing and knew I was the only one feeling this way. "My God Ashley, what is wrong with you?! Then it hit me. Like a flood or a sky high brick wall it hit me, "Annabelle did it. She made it to the birthday we didn't think she would. She is playing and laughing.. but dependent on a feeding tube. Dependent on medications up the wazoo. She doesn't eat anything beyond apples. All her systems are being affected so very quickly and ...... insurance has pulled the plug to continue to help her. It's cheaper to bury Annabelle than it is to spend the money to waste the time digging for a diagnosis when she may not make it to the diagnosis anyway. Omg, so is this the last birthday my daughter will have? Is this the last party I throw for Annabelle? Is this the last time I sing her song? Oh my God - please let this day slow down and please help my daughter!!" I felt so alone in the most crowded, loud room of Carytown. My mind was flooded with the reality of what was happening and I couldn't slow it down. I found Annabelle in the room and decided I would attempt to make myself look busy so people wouldn't speak to me as I watched Annabelle and refocused to how blessed and grateful I am. She ran over to her sissy and surprised her from behind with tickles. Both girls gave the biggest belly laughs and continued to run and play. My heart slowed down a beat.. I exhaled and decided that would be my focus for the rest of the day. WATCH my girls and let them be my comfort during this day. I can get thru this...

Soon it was time to do the birthday 'cake' and begin opening presents. Annabelle needed a feeding so it was perfect timing to have all the kids join and start doing other things so Annabelle could be stationary for her feed (and, I could snuggle her as much as I wanted).

The 'Cake' was made of cardboard boxes and within each 'slice' of cake that he kiddo choose, there were prizes inside. Some prizes were toys, bouncy balls, stickers, stamps etc. It was my best alternative at finding a way to keep the 'cake' tradition in a birthday party and blowing out candles, but something that even Annabelle can enjoy since she cannot eat cake. It was a hit. The rest of the kids enjoyed apples and apple juice as Annabelle started to open gifts.

As soon as presents were finished, the party time allowance was wrapping up and my wonderful friends went to work to dismantle the party in record time. They loaded my car as I sat with Annabelle because she was hooked to her tubie and then I paid for the party. I was so grateful for all the friends that joined us for Annabelle's birthday. The overwhelming guilt that I felt after everyone was gone was intense, that I didn't get an opportunity to thank everyone individually enough. Annabelle did wonderful though. She loved every bit of playing with her friends. She ran around and played her little heart out until she crashed from sheer exhaustion, lol. But she did wonderful. At the end of the day, I think all the kids were worn out and had fun. That's all that matters.

Once everything was wrapped up and our final bags were packed, I told AK we needed to go.. but of course life happens and Mady needs to potty. I told AK again, please, I need to get out of here... Mady was going potty so Annabelle decided to make one last lap around the play area for some last minute giggles. My patience was gone and I felt like I would unravel. I reminded AK again to leave.. Mady couldn't find her shoes. Finally I looked at AK and grabbed him, "I am NOT kidding, I am so serious when I tell you I. Need. To. Leave. Now!" He looked at me terrified. I've never said anything like that before but he could feel my arm and hand shaking like a leaf when I grabbed him, he knew right away something was wrong and told me to go outside and he would have the girls in two seconds and meet me. The car ride was miserable. Every time Mady would touch her balloon and it made the noise, my skin curled and I would yell at her. Annabelle was struggling and needed a nap so she cried and apparently dug at her skin until she made her legs bleed. I needed to escape and just run away. When we finally arrived home, I laid Annabelle in her bed to rest while Mady found a comfy place on the couch. We unpacked the car and I exhaled. Friends joined us for dinner and provided the girls with friends and distractions and I retreated to my bedroom to 'clean'. I needed to be away from all the chaos, the noise, life. I needed to exhale and my friend knew that. She sat on my bed as I cleaned and we just talked.. she listened and I complained and let it all out.. I needed to do so. Annabelle was beyond exhausted after a short bit of playing and went to bed without a fight. We started her feed around 8p and she handled it very well.


Around midnight Annabelle woke up, screaming. She was miserable and terribly upset. AK and I struggled to figure out what was going on. Poor Mady couldn't sleep over Annabelle's crying and so I carried her downstairs for a distraction and change of scenery (btw, this isn't as easy as it used to be.. gathering Belle and heading downstairs now involves tubes: feeding bags, pumps, machines, IV cart, etc.) We gave her another dose of Omeprazole in hopes that maybe it was only her reflux that was bothering her. After a while she started getting sleepy and we laid her back down. I tried to relax and go to sleep without any luck. I tossed and turned and stared at the wall with wide eyes. Annabelle woke up again, crying, and we repeated the long process. Again I laid back down and tried to get to sleep. Annabelle this time, bless her heart, fell out of the bed(!). In our house, when Annabelle falls out of the bed, it seriously sounds like a tree fell on the house upstairs, or Mady fell from the top bunk. She apparently hit her face on her IV cart when she fell and hurt her chin. What a miserable way to wake up :( Belle was having such a bad night and I had yet to get some sleep.. both of our frustration levels were running out. Finally I managed to fall asleep... I drifted into the worst dream of my life... a nightmare of my worst fear...

My dream:
Annabelle is doing well from the tube and thriving finally. She is starting to speak and walk and act as a normal little girl should, but the diagnosis process is taking far longer than we expected. Annabelle's health starts to fall again and the seizures reappear. My biggest fear begins to play in my dream: Annabelle has a seizure and will not wake up from it. We rush her to the hospital and she slips into a coma. While in a coma, we watch her systems continue to collapse faster and faster until the doctors join us and ask us to make a decision on Annabelle's behalf. I remember in my dream yelling, "This isn't real! Wake me up! This isn't my life, this has to be a nightmare! Wake me up!" AK is holding me and trying to explain, 'hunny, this isn't a dream - we've known this could happen... we need to help our daughter as selflessly as we can. We need to do what is right for her and Mady and the rest of us. She deserves to be in a better place!'. I was so upset in my dream and kept begging for it to all stop - but it wouldn't. I wanted to escape the reality but I couldn't. Finally my dream carried me to Annabelle's funeral and I saw my baby girl in a casket. She was dressed in comfy clothes, with her Gigi (pink and white PBK embroidered blanket) draped over her and Lambie tucked under her arm.

Sunday
The imagine of seeing Annabelle laying there was enough to catapult me out of my sleep and sit me straight up in bed. I grabbed the sheets and opened my eyes as fast as I could and then it hit me..... I was going to be sick. I ran straight to the bathroom and couldn't stop vomiting. I was shaking like a leaf but there wasn't a tear in my eyes, I was in complete shock and beyond ill. There's no way in hell I could go back to sleep.. I didn't even want to go back into the bedroom. I made my way into the kitchen and tried my hardest to drink something without luck. I tried eating something without luck. I sat on the couch in a daze and watched the sun come up and my house begin to come to life from the darkness of night. Finally I decided that if I was going to be awake, I might as well start cleaning and be productive, the best thing that could happen is that it could distract me! I scrubbed, and scrubbed and scrubbed everything in my kitchen. I was SO happy when I heard Annabelle's pump start to go off that I was allowed upstairs to see her finally. I wanted to wrap her in my arms so tight and feel her warm skin and watch her breathe. I unplugged all her tubing and gave her a kiss. Then I climbed in Mady's bed and held her until both girls were awake. It was Sunday morning and I felt like I was a walking zombie... walking thru never ending days of hell.

The day unfolded and we set the house up for a small birthday party for Annabelle with only family. I wanted to have the party at the park down the road but the rain had turned the mulch/dirt into mud and truthfully I didn't want Annabelle exposed to any more outdoor allergens. I just crossed my fingers and prayed family wouldn't bring germs into our house and leave them.
 

 The party went well and I found myself a lot more relaxed and less anxious than the party on Saturday. I was still flooded with nervous and anxiety but on a more manageable level. I was at home and in my own comfort zone.. I was also too exhausted to put forth the energy of being a nervous wreck. Annabelle had a good day. She played her little heart out with her cousins and friends in the playroom upstairs. Finally it was time to open presents, and just as we did the day before, I hooked her to the pump while she was sitting on the floor and opening gifts. Annabelle's little expression is priceless when she see's something exciting, she exclaims, "Ohhh! WOW!!!" with a big smile. She is grateful for any and every gift, big or small. I love it. I love watching her little face light up and I love watching her get spoiled as much as she deserves.

I

I do this constantly.. I was sad to stumble upon a picture of me looking like this, but this is honestly what I do almost all day - I stretch the tension out of my neck literally all day and night. I'm surprised this isn't what 99% of pictures look like that I am in.. exhale Ashley, refocus, collect and paint your game face back on.

 She did very well for most the day. She did get tired as usual but fortunately for everyone she didn't have any upsetting bouts of pain, screaming or needing to go straight to bed. She just lounged on friends and family for some extra snuggles and love.

Annabelle Grace is hands down, the strongest little girl that I have ever met. She has been a blessing in our lives to teach us just how strong we can truly be even when we doubt everything we're doing. Annabelle has taught me to be the best mommy I can to Madelynne and Belle both. She has taught me to show how sisters should love and support one another, how our family will stick together during difficult times. I have unfortunately shown my daughters what it looks like when mommy hits an ugly wall but they also learned how much daddy also supports and loves their mommy when she needs help. I cannot be the only one in our family that is a rock, sometimes even the strongest ones fall apart and it's up to the family to continue pulling us together. 
This was the hardest weekend of my entire life, hands down. But my girls and husband have pulled me thru it. 
This has been the hardest year of Annabelle's life and I have carried her to every doctor I can, Madelynne has snuggled her sissy when she needs it and colors her pictures when we are away and daddy always makes sure she is extra cuddled when he is near. 
This has been the most difficult reality for AK to watch his little girl, both daughters, wife, family, home, jobs, etc struggle because of this nightmare we are living and have been dealt with. He must stay our rock, he supports all of us individually and carries every ounce of the weight in our household that I do not to keep us balanced. He is the second half of me. He knows how to dress baby dolls, do laundry, pay bills and cook dinner while keeping the grass cut and lights on without asking for support. Annabelle's presence in our family is priceless. She was given to us by God and we have all learned from her in more than one way or another. Annabelle is strong, she is more loving than anyone you can imagine. Annabelle is opinionated, feisty, she is a fighter, strong-willed, sensitive and intuitive to everything and everyone around her. I couldn't have raised more incredible kids if I tried. You couldn't pay me enough money to believe that this is my life, these are my children and this is my husband. In the midst of all these things that I am bitter and angry because we've been dealt with - I also could not have been more blessed. We are so very blessed. AK and I are blessed with two beautiful, amazing little girls. We've made it two years with Annabelle completing our family and have grown so very much since September 20, 2011. Happy Birthday baby girl. What an incredible ride it has been and what a joy and blessing I pray it continues to be to watch you grow, thrive and teach us all the things in life that are important.