Both her arms are covered in blown veins, both hands are bruised. The stoma around her gtube is forming granulation tissue before our eyes that will soon become infected.
Annabelle was very uncomfortable last night as she tossed and turned in the bed with daddy. She doesn't want to snuggle us to me anymore, she's mad at me for bringing her here. The morning began with positive energy and smiles about visiting the zoo, but the moment we got into the car she shifted.. I don't know if her pains began to kick in or what happened but we spent the rest of the day on pins and needles trying to decide to go back to the hotel or push her into enjoyment of the zoo animals.
Annabelle never used to complain of pain, she never said she was hurting and rarely did acute pain stop her in her tracks.. doctors have said numerous times that this is likely because she has suffered pain her entire life and doesn't know the difference between pain and feeling normal. Lately however, she is complaining, a lot. Her pains are increasingly harder to manage - for her and for us. She is verbal with her pain levels and can begin to finally tell us where she hurts worse so we can address it specifically to those areas. Today unfortunately, she just said she hurts with tears in her eyes. She would gasp when the waves of pain hit her and remain motionless. AK and I would watch one another and Annabelle, not sure if we should keep walking or stop. She whimpered to herself but persistently asked to see the Lions.
Our hearts are breaking minute by minute as we watch our baby succumb to whatever disease plagues her small body. Our mommy and daddy minds race for ways to help our youngest daughter fight a battle that we know nothing about. She looks at us with eyes that protect her, but she looks past us because she's learned in her young 3 years that we never do actually protect her. How do you deliver that message as a parent? How do you whisper in their ear when they're crying "It's OK sweety, mommy is here.. it's ok, I have you". That means absolutely nothing to Annabelle. Those words are not comforting, in fact, they're a message that far too often delivered painful results. Mommy and daddy holding her close, does not ease her pain nor does it ease her mind - we hold her thru her pains without helping them because we can't.. we hold her down while others subject her to pain - worst yet, we hold her down and subject her to pain OURSELVES! Our hearts have been breaking for years..... I think we have now broken her heart, not just ours. And the sound of that shatter hitting the floor is paralyzing :(
The Cincinnati Zoo was probably the best zoo we have ever been to. The monkeys were hysterical and SO loud this morning, Annabelle was able to comfortably sit in daddy's arms and watch them swinging.
We explored everything the zoo had to offer. We saw every exhibit, found the lions, pet the goats and measured a snake (GROSS!)
She complained of not feeling well and could hardly stand when being held by one of us. Bribery ensued so we found ourselves caving to the purchase of a slurpee, face painting and carousel ride (yes, that's where your donation went this week.. thank you lol)
We came back to the hotel to let Annabelle rest after a quick shower. She fell asleep right away.
I think she needed the nap.. I couldn't rest, nor could AK. We faked it as long as we could before we both got up and started moving around.. Started a load of laundry and cleaning. I then found myself scrolling thru all the pictures of Madelynne. I miss my big girl so much it hurts. I've never been away from her this long, likewise, she's never been away from us like this either. She's staying with my grandmother, and while Mady doesn't say it out loud, my grandmother said she really misses and is worried about her little sister.
Here's the letter she wrote to Annabelle this morning while coloring alone.
I hope you had fun. I miss you Annabelle. I love you Annabelle. You are so nice to me. Thank you for my gift. I love you so so much. You are my favorite person in the whole world. I love you Annabelle.
Love, Mady
I have Madys picture on the nightstand in the hotel room beside us and we talk about her all the time when we can't FaceTime. Annabelle keeps telling us all the things she wants to do when we bring Mady back to Cincinnati with us! I love that my girls adore one another, they're the best I've ever given them - each other.
Tomorrow is biopsy results day. We have been thru this nearly 15 times in two years and it still hasn't gotten easier. We won't sleep tonight. We likely won't be able to talk about all the what-ifs. We will just watch tv and pack. Toss and turn and hold each other's hand with heavy eyes as we count the hours until we hear the doctor speak the words. It never gets easier. It never hurts less. Good news or bad news, our child still fights this disease yesterday, today and tomorrow despite what pathology results say. The fight will never end and these night before we hear the results will never cease.
We said a prayer tonight as a family though, we cheersed before dinner to accepting any news as another step forward for our family, no matter what it means on our path ahead. We toast d to the opportunity to be here in Cincinnati Ohio and for the skilled and knowledgable physicians that have cares for Annabelle so far. We are blessed to have the support at home for us while we're miles apart and we admire Annabelle's strength for fighting so hard to make it this far.
Tomorrow will be hard. Tomorrow we will hear words we have never heard before and will be forced to accept a lifestyle change we've never embraced. Tomorrow, words will cut deep but they will be the truth we have searched for so long.
Pray for us tomorrow. Our appointment is I the hospital at 915am.
Xo sweet dreams world.
Sweet dreams to you my MadelynneMarie, we miss you baby girl. Sleep tight.
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