Christmas time is here, and in our family, we love any and every opportunity we can find to enjoy the festivities and make it memorable for the kids. Last year, Annabelle could hardly move and slept 22hr x day, this year, we want to make the most of it.Therefore, it feels like every day there is another event going on whether it be decorating Christmas cookies or driving around to see the Christmas lights. Annabelle is hanging on, but I can tell she is wearing down faster and faster. She has energy for long stretches of time, but she depletes so quickly.
Thursday we took our girls to the Jefferson for Christmas Tea with Santa. When making our reservation, they asked if anyone had food allergies and I said yes. Well, last week the chef called from the Jefferson hotel to discuss food allergies and to figure out how to make the event most memorable and still safe for Annabelle. I was so delighted to see and hear about the foods he specifically prepared for her, safely with all her safe ingredients. Annabelle is sweet as ever, but she's crazy. She thinks she's a teenage mutant ninja turtle, she roars like a dinosaur and in the middle of dinner blessing, there is a good chance she will 'toot' and then start bursting out laughing at herself. Annabelle is anything but ready for a fancy afternoon for tea time at the Jefferson Hotel. BUT(!) her sissy is going, and she wants to do EVERYTHING her sissy does, so off we went. Velvet dress, matching ruffled satin gloves, shiny new dress shoes and light pink lip gloss for both girls. Annabelle was wonderful and keep her hands in her lap, I handed her a gingerbread cookie, she looked at me in disbelief because she's never had a cookie before. I told her she could eat it, she took one bite and I laughed, "Annabelle, you bit his head off!"
Facial expression, priceless. That's Annabelle being fancy for ya!
We were only there for a few hours, but she was melting down fast. I could tell she was getting weak as we stood in line for pictures.. her little legs kept buckling so I picked her up and practically carried her for the rest of the afternoon. In hard moments like these for Annabelle, it's a blessing to be her mommy and able to recognize her needs and read into whats going on faster than ever. I can tell when she is crashing faster than she can sometimes. She is finally getting comfortable telling me when she isn't feeling well and something is wrong, or she needs to be held. For so long she would lie and say "No mommy, I fine."
The next day was Madelynne's Christmas performance at her daycare. She was the star and so excited to make it to the play, afterall, she thought she would miss it from the flu! She had been fever free for 4 days now and if she promised to cover a cough, not touch surface or hold hands, than she could go.
Annabelle was not doing well at all. She didn't want to sit in the chairs. She didn't want to stand, she wanted to be held but wasn't comfortable. Finally, I carried her to the hallways in the daycare and sat her down "What is going on Annabelle? You are NOT behaving very well. What is wrong?!" She broke down in sobbing tears, 'mommy, i go home. please, lets go home mommy'. I felt terrible. I stood in the back and carried her over my chest with her head on my shoulder for the rest of the performance. On the way home, Annabelle seemed to be perking up a little and we needed dinner. As we were headed to the restaurant, Annabelle kept begging for a drink. She kept telling us she was thirsty. I promsied we would have water at the restaurant and we weren't far away. By the time we got there, she was nearly in tears pleading for a drink. When we sat down, she started crying, pulling her clothes off, and hitting her stomach, "I need a drink mommy! I thirsty!! I thirsty!!" Something was clearly bothering her tummy.. I asked if her tubey hurt, if her skin was itchy, if her tummy was upset and nothing. She just kept saying she was thirsty but was absolutely inconsolable. It was wild, and the first time that spell has happened. I don't believe it was as simple as 'being thirsty', just like when Mady told me her eyebrow hurt, that is code for 'headache'. I just can't figure out what Annabelle is trying to say when she is hysterical over being thirsty! It doesn't make much sense. She's done it again a few more times since but nothing as bad as Friday night. She spent the rest of the evening laying in my lap and trying to fall asleep. I spent the meal wishing we just went home instead.
The rest of our weekend wasn't too bad. Annabelle persistently has highs and lows with her energy levels. But as the weather is getting colder, her inability to maintain her body temperature is also becoming more difficult to manage. Sunday night we tried to see christmas lights and got out the car to enjoy them. She was so happy for the first few minutes, but quickly deteriorated in the 35 degree temperatues. All the other kids were running around and Annabelle could hardly stand. I carried her wrapped inside my jacket and her head on my chest as she told me the things she could see. We only lasted about 5-6 minutes and I had to take her back to our van where it was warm while everyone else enjoyed lights. These are the things that are difficult to manage this time of the year. I am so, SO grateful for an attached garage in our new home. Taking Annabelle from inside directly to the car isn't as dangerous anymore.
Yesterday with her nurse, she slept most her entire day away. She ate a small bit for breakfast and wouldn't eat anything else for the rest of the day. She then slept the entire afternoon. Her little body is doing so much it's unbelievable. She's stronger than I've ever seen her and I couldn't be more proud. She doesn't fade away nearly as quickly as she used to, but she's definitely not stable.. I think it's a great compromise of Annabelle and all of us being able to recognize her needs immediately and addressing them. She's been fighting this life since she were born, but it's taken until now for her to be able to start communicating what she is feeling, trust us when she says something hurts, and most importantly, differentiate pain from no pain. Her doctors all agree, Annabelle likely does not know what pain is - she has likely been in pain her entire life and wouldn't know how to tell us when something hurts. She runs into walls, drops heavy things on her toes and falls down constantly, but she never cries. Pain isn't something she's ever complained about (or maybe she did as an infant, but we were never able to help her pains so eventually.. she just stops crying). As she gets older and more aware, I pray we can start to learn more and more from Annabelle and what she can share.
For now, this incredible little girl is shining her light around all of us. She's filling our home with love, laughter, fun, strength and hope. You are filling our hearts and family with support, endless love, encouragement and more gratitude from us than you can ever, ever imagine. From our family to you, thank you so very much and we hope you have a blessed Christmas.
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