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

Dear Teachers that have no idea what you are getting into when my daughters enter your class rooms in the fall, Thank you.  When you saw their names on your class list did you know you'd be wiping their tears, listening to their stories of their brothers countless hospital stays and comforting them while he's hours away with mommy having surgery number....I lost count? You didn't judge me when their hair was un-brushed and they forgot their lunch. You just smiled and got them fed.  Thank you for being patient with me and sending extra field trip slips and bus tags home. You knew how often I couldn't be home because I was at Children's holding their brothers hand while he fought yeast in his blood, had blood transfusions, tests, tests and tests..... You wore his t-shirts on the days my girls needed it most and made us a part of your classroom by hanging his pictures on the wall, reading my emails of comfort to my daughter telling her everything is going t

When a child is born with special needs, the whole family is effected. You know the quote, "A baby changes everything."?  Well, a special needs baby changes everything and everybody.  We'll start with the mom.  I went from a mom of three "typical", healthy girls. The Children's Hospital was just a place kids with cancer went to that I'd ocationally donate a dollar to so my kids could sign their name on a little, paper gold pot or rainbow to be displayed behind Walmart checkout lines. I had a part time job cleaning homes and offices, made home cooked meals almost every night. I signed permission slips on time, never missed sending a snack into preschool and had more than enough time to read stories to the girls, play with them and do all the mommy things I dreamed I would.   I had regular dates with my husband, spent plenty of time complaining to my friends about the exhaustion of teething and ear infections....and so on.  Fast forward 4 som

Hi guys! Case is inpatient (again). We are on day 8 of fighting yeast in his central line.  I have some good news though.....We have some awesome t-shirts, etc for sale to help with his on going care! https://www.facebook.com/AVerySpecialCase/posts/748832481882182

  Let's talk about one of my least favorite F words in the world.....FAIR. I mean really, fair doesn't exist....One of my least favorite parenting moments is when one of my kids come running to me and in the whiniest voice declares, "BUT IT'S NOT FAIR!"  My immediate response is, "You are correct and life will never be FAIR." I have to admit though, sometimes I wallow in self pity over the looming need for life, things, circumstances to be fair. It's an unachievable goal, a thorn in the sides of most special needs moms.  It's not fair! It's not fair that our child spends a Saturday afternoon being shot with growth hormones while his friends are at birthday parties and playgrounds. It's not fair that we envy the mom who's biggest worry is an ear infection and how many GMOs are in their daughter's lunch while ours are, "How can insurance deny a hospital stay that happened 10 days ago?! Will his intestines ever work? Will

2014 was a beautiful year. The good, the bad, the hard....It started with surgery #7 and ended with surgery #10.  Case started school in January unable to draw a straight line and ended writing his NAME! Case's biggest surgery of his life happened in May. His scull was taken out of his head and reconstructed....Not only did he rock it, but he excelled! His Chairi Malformation disappeared! He gained 7 pounds, spoke much more and ate more than ever once his brain starting growing properly! Beautiful Case. He's worked so hard, grew so much and met some amazing people.    Beautiful news casters.....  Amazing men that changed our lives.  This year held so many hospital trips, blood draws,appointments and tests.  He rocked them all! 2014 was the year of the Taco! We finally made the plunge and adopted a dog from a local shelter in November. We named him Taco. He completed our little family.  We've been so very blessed in 2014. It was hard. It was beautiful. It was one amazing yea