This weekend was full of promising smiles and giggles, and then hit with the reality of a little girl that just isn't doing well.

I don't know how kids do it. They are the most resilient, strong, optimistic, full of life and energy little people ever. I always say, “If I were in Annabelle’s shoes, you would just have to leave me in the hospital and throw in the towel. Im not as strong as she is”. She wears a smile, even when it’s clear she feels like crap. She tries to color and play with toys when her temperature is thru the roof and almost no matter what, you can always get a tummy tickle – belly laugh out of her. All these smiles, sometime come with false hope though. When she looks well, I want to assume that she is feeling well. When she is up walking around, and acting like a normal 21 month old, I give her the credit that everything is great. But the times when she doesn’t want to play or find something to do, and she wants to only be held and whimper, then I know she really REALLY isn’t well. AK and I know our daughter very well.. when someone else comments ‘oh, she looks like she is doing great!’ and Annabelle is hardly walking around and just staying monotone, we know that she isn’t feeling great. It’s hard to smile to the public, and to family and friends and stay optimistic when your daughter is in front of you and suffering inside and you can’t help her.. and you don’t want to burden anyone else with your worries or observations. More often than not I tell people, “She’s doing great” and smile. It’s easier that way, for everyone.

Saturday Annabelle had a great day. She was eating, playing, peeing and had her first BM is a very long time. She was annoying the heck out of her sister and what appeared to be back to her normal self. I cannot begin to tell you the happiness I feel, sitting back and watching my girls interact and playing together. Mady adores her little sister and worries about her constantly, I hate that she burdens herself with that worry – but it’s her sister. I make sure it’s healthy for her and she never worries about anything serious and she understands that everything is going to be ok.. "we just have to be very careful about food, very easy when she isn’t feeling well and listen very well when mommy and daddy need to help Annabelle. Other than that, she is your sister. You need to share, take turns, play nice or you’ll both be in time out!"

For a little girl that hasn’t eaten since March, she’s still very interested in food in every shape except eating it. She won’t eat, or try to 95% of the time. But she DOES want to be a big girl like her sister and mommy and daddy, and use a spoon, fork, knife. We pull out the play-doh and let her explore with utensils. If we are eating, she always wants to investigate what we are chowing down on. She peeks into our bowl or over our plate. Sometimes she opens her mouth wide and asks for a bite, but most the time she just reaches for our utensil and tries to ‘help’ feed us. At this point she should be quite skilled at using a fork or spoon to feed herself, but when you aren’t eating, it’s hard to learn those new skills! As much as I cringe at the mess she makes, I still let her feed me whatever is on my plate. She loves to do it and it’s too cute. A little heartbreaking when you think too hard about it, but what I try to remember is that she is enjoying herself being interactive and she is improving her fine motor skills at the same time. Here’s a short little video of Saturday morning J

Annabelle slept well Saturday night. She woke up coughing several times but without pain it seemed. Sunday was a slower day than Saturday. She never seemed to really wake up Sunday. She was pretty quiet, to herself and monotone for most the day. She was emotional and seemed to have tantrums over everything. We went with it though.. it’s hard to discipline a little girl that you know likely isn’t feeling well and is just exhausted. If she wants to get back into the pool for the 8486465 time of the day, darnit we’re going in! The sunshine and couple hours of pool time are just what we needed.. to wear us out. When we got home, it was a bit downhill. I wasn’t feel well again…. These darn headaches that won’t go away. Mady and Annabelle were worn out, but it wasn’t quite bedtime. We made Annabelle a small bowl of Nutra and sent her to bed early. She was silent and seemed to have gone right to sleep, the poor little girl really needed it I know. AK, Mady and I had dinner together and then attempted to clean the house.

In all the chaos that is going on, I have to say, one of the hardest parts is keeping my house and the simple things pulled together. It’s harder than I could have ever imagined. It’s not that my house is filthy, it just isn’t as prestine as I want it to be.. and it isn’t that I don’t want it there, I just don’t have the energy to do it anymore! I don’t have the motivation, focus, or drive to make it a priority like I used to. I tell myself, “Ashley you need to let some things go so you can continue to focus on only what’s important”.

·         Spending time with my family.

·         Balancing my time and love between two beautiful little girls.

·         Staying on top of medical bills.

·         Battling prescriptions between insurance companies, several times a week.

·         Making appearances to social events that keep our sanity and keep our family socialized with awesome people that love us.

·         Responding to texts, phone calls, emails

·         Paying bills and managing medical bills

·         Maintaining constant updates between Belle’s therapy’s.

·         Scheduling doctor appointments almost daily.

·         Administering medications around the clock

·         Watching Annabelle like a hawk looking for changes. Taking her temperature, etc.

·         And most recently, constant communication with the pediatrician and Endocrinology Team

I know I stay busy, I know I am tired and being stretched but I never feel as though I have it ALL together anymore. I think toys on the floor make me feel that way. If there are dishes in the sink or carpet without vacuum lines, I feel like the house is a mess and that in itself is overwhelming. I can probably live with it that way, but I cannot relax. Annabelle cannot, I repeat CANNOT get into food or accidentally put something into her mouth. If Mady eats a Nutri-Grain bar and walks into the living room and drops a tiny piece, I promise Annabelle will find it. She cannot eat something like that! Living in that fear makes me need to clean the floors constantly. Having dishes or laundry piled up will just stay on my mind until it’s finished. If I know the house is cleaned and everything is taken care of, only then can I sit down on the couch and truly ‘relax’. I sit back often, but I am so full of anxiety and worry that I need to be doing things, that I just don’t think Im actually relaxing. Does that even make sense?! lol Oiy

Back to Sweet Baby Belle. So Sunday evening, we all began cleaning.. Mady was in charge of toys and dusting and AK and I battled most everything else. Finally when it was bedtime for Mady, I walked her upstairs and got her into jammies. Annabelle was asleep in her bed and looked so peaceful. I kept looking over at her and she seemed ‘glossy’, I was worried she was having cold sweats again. I was so nervous to touch her though, I didn't want to wake her up! Once Mady was tucked into her bed, I leaned down to kiss Annabelle on her head and she WAS greasy! I gasped, “gross!” then I realized there was an empty bottle of Vicks Vapor Rub in the bed next to her. That little brat. This is her second escapade on smearing yucky stuff in her room. The first adventure was between Desitin vs. Carpet. The poor kid was passed out so heavily, but I had to clean her up and made AK get in the shower with her while I attempted to smear everything into the wood and remove all goopy sheets, blankets, books, Lambie’s, etc. It was fun.. messy, frustrating, but nothing we cannot laugh at. I thought AKs face would turn purple, and then I said “Wait! Don’t touch her! I need to get the camera!” He looked at me shocked, “WHAT?! ARE YOU KIDING ME!?” – Yes J By the end of it, we were all laughing and both girls were running around in jammies climbing on and off their beds before we snuggled them in for good night kisses.

 

This is my life. Up – Down – high – low – hilarious and scary all at the same time. What a ride we are on and how lucky we are to be able to take the front row seat.. I just hope God knows what he is doing as he drives this roller coaster.