“No!” I yell as she climbs to the top of the ottoman.
“NO!” She repeats back at me defiantly, so proud of herself for making it to the top!
“Sit down!” I say as she stands up on her brother’s recliner chair.
“SIT DOWN!” she snaps right back at me as she proceeds to jump up and down on the chair.
“DON’T TOUCH!” I say as she pulls at her IV line and tries to touch the sterile medical supplies as we hook up TPN.
“Touchtouchtouchtouchtouch” she repeats with a giggle, staring me straight in the eyes as she continues grabbing whatever she can get her chubby little fingers on.
Raising a “Tornado”-The Belle We Know
“Blessed” is the only word I can think of to truly describe the last year of Belle’s life.We have had the endless joy and privilege of watching her grow from a crawler to a walker turned runner and climber. We affectionately call her the “Tornado” or the “Destroyer” because she literally has the ability to destroy a room faster than you can say, “Stop!!!.” I always laugh (or cry?) at the thought that my sweet Jonah was the total opposite. So soft and gentle. I never once used baby locks or blocked him from cupboards because he literally never destroyed anything. He wasn’t a climber and he didn’t get in to things. He was always calm and content playing in one spot with the toys I gave him, the polar opposite of our sweet little tornado. Oh, and did I mention she is hooked to an IV line 19 hours a day…because that just adds to all the fun!
I often praise God for Belle’s personality. He didn’t have to make her so much fun, so happy, and so full of vitality. But I’ll be honest, those things help when we are knee deep in medical care. She is very social. She has a great sense of humor and mostly laughs at herself. She frequently walks around the house with a bucket or bag over her head laughing hysterically at herself. She loves to dance and sing. She sings “Jesus Loves Me” every night before I turn her light off for bed. Belle reads more than any child I’ve ever seen her age. She is so content to sit and read 7-10 books in a row. Belle is sensitive and sassy. When Daddy yells at her, her lip immediately starts to quiver and she starts bawling. When Mommy yells at her, she yells back at me. She loves to go for walks, camping, and go to church. She spends a lot of time at home, so the minute we bring her car seat out, she squeals with delight at the thought of exploring somewhere new. She yells, “YAY!” every single time we arrive somewhere and turn the car engine off because she can’t wait to get out and see where we took her. She tests us to the max and often defies what we say while looking us directly in the eye, and doing the exact opposite of what we are telling her to do. That defiance is typically followed by the deepest belly laugh or a high pitched squeal/giggle and we often find ourselves having to look away to keep her from seeing us laugh as we try to discipline her.
Belle epitomizes what someone would think of for a child in the “Terrible Twos” stage. Except for one thing. Before she was born, we didn’t think she’d ever be two (or one for that matter), so I’ve come to the conclusion those people who, according to parenting.com, coined the term “Terrible Two’s” in the 1950’s had it all wrong. There is absolutely NOTHING terrible about two. No, two is the most beautiful age ever.
Since I haven’t shared nearly as much about Belle this last year as I did her first year, here is a brief medical update.
Anabelle had an incredibly amazing and “healthy” year this year. She did not spend even one unplanned night in the hospital this entire year which is amazing for a child with a syndrome that could cause her to be in and out every other month. She did spend 3 planned nights in the hospital in April for her transplant evaluation where she was listed Status 2 for a small bowel transplant. That just means, her transplant is needed but likely not for awhile. She did not have any line infections, her liver looks great, and she still has full line access. We did have a few line issues that lead to one ambulance ride and one helicopter ride this year (loss of access causes blood sugar concerns for her), but both line issues were fixed in the ER without being admitted. Our greatest health challenge this year was a 6 month lull in her growth. We switched to a new IV lipid and she has since gained very well and is slowly, but consistently playing catch up. She was dismissed from Early Intervention and has met all of her developmental milestones. She is enjoying new freedom with an additional hour off TPN per day (19 hours infusing) and the use of her own personal backpack while she is infusing. Ironically, my healthy child actually spent more time in the hospital this year than my sick child. God, and His legion of guardian angels working overtime with this little lady, protected her from getting sick when her brother had strep, the stomach bug, an ear infection, and a very nasty staph infection that could have been life threatening to her. Belle literally was not sick once this year other than a few stuffy noses. Praise God for all of these blessings in her life and an incredible year!
Not a Victim
Belle continues to need extensive medical care daily. She is on TPN indefinitely and she has many other medical needs throughout any given day. Medical care is a big part of our day to day and our life. Recently, someone communicated to me that she thought Belle was “good” now because she looks so healthy and because they see our family do so much with her. And she was right. She looks amazing. She is amazing. She is also very, very sick. We choose not to focus on her sickness because that’s not who she is. It doesn’t define her. The Lord, in His infinite goodness, has chosen to prosper her despite her problems. No, He didn’t heal her when we (and so many of you) prayed two years ago for Him to do so. But He has given her abundant life despite her struggles, and we are so grateful for that. Joey and I have shared less about her sickness this year. We will give God the glory for her victories rather than making her in to a victim of what has happened to her. We have too much living to do to just focus on her sickness. We also have too much to teach her about who Jesus says she is, rather than what MMIH might say about her.
We all have had some really crappy situations happen to us. We can choose to live in the victory of who God says we are or we can choose to live as victims to what has happened to us. I play “I Am No Victim” a lot and as I reflect on her life, I pray Belle can find her identity in who Jesus says she is.
“I am who He says I am
He is, who He says He is
I’m defined by all His promises
Shaped by, every word He says”
Year one was a bit of a beautiful mess. Year two was blessed beyond our wildest dreams. Thank you, Lord for two. Truly, there is just nothing terrible about it!<3