A Very Special Case.

You know how you take your child to get a shot and promise an ice cone for afterwards? Something small and sweet to put a smile back on there little faces. Well, when you have a chronically ill child with oral aversions and digestion issues, the ocational "ice cream" treat just doesn't cut it..... You see, sometimes my son  has multiple appointments weekly. We've been driving 4 hours round trip to Children's at least once a week plus the normal "well check", shots, etc. For the last 4 1/2 years, I'd promise him a gift from the hospital gift shop. So, now he owns everything under $10 in that gift shop..... half of it's broken, the other half deflated.... After a meltdown from a long day and an indecisive boy at the Children's hospital gift shop a week ago, his home health nurse suggested we fill a bag from the dollar store, put it in the back of the car and every time he has an appointment, etc., he picks a treat from the "feel be...

Every year since my husband and I  got married, we've traveled the 8+ hour trip to spend a week at our favorite beach with extended family.  We've done it with nursing babies, teething babies, potty training toddlers, motion sick preschoolers, a tube fed baby but never (not until this year) an IV dependent, medicine needing and tube fed 4 year old that wakes up multiple times a night sick and in pain.  When Case got his central line in January, I can honestly say I was hesitant taking this yearly trip.  When he then landed in the hospital 5 times in 5 months this year with infection, low platelets and various other problems, I was convinced we shouldn't go.  All we had to bring. Things I couldn't just pick up at Walmart if I forgot it.....The billions of bacteria I was sure we're just waiting to crawl in his line...All of it scared me and I'd consider myself one that isn't easily fearful. It would have "just been easier to skip the trip...

"Babies are like computer programs. Lots of pieces put together to make one big picture. YOUR baby's programming is all wrong...."-one of my many, many OBGYNs during my very complicated pregnancy.  My baby was "made wrong"....sick inside of me. No mater how healthy I ate. No mater the fact that I didn't smoke, do drugs or drink, my baby was disabled. He was full of health problems and I prayed. I prayed he'd live. I prayed that if he didn't, I'd have the grace a peace to say goodbye and still exist....I prayed for healing. I prayed for peace in the storm but above all else, I prayed for God's perfect will to shine through the darkness.  Did I believe God could heal my baby completely? Yes. Did I pray for that? Sometimes but above all else I prayed my heart would stay thankful in ALL circumstances and that this tiny life inside me would bring God glory.  Fast forward 4 1/2 years. God didn't heal my child and that's okay. I'm at pea...