"Don't like booboos, no....."

-

 







"Don't like booboos, no. Don't like no hair. Don't like hospital, no."-Case 3 1/2 and acutely aware of his differences, tired of booboos, tired of hospitals, tired of surgeries, hated having his head shaved for the Cranial Vault Repair......just done and finally able to vocalize it. Two of the hardest things about being the mom of a medically complicated child is hearing how medically complicated your child will be/is and watching your child realize it... For the last few months, he's been noticing he's smaller than normal, he's fed up with constant vomiting and he wants to do all the typical things a three year old can do. He can't tumble due to brain malformations, he can't ride the fun rides at the park due to his abnormally small stature, he can't play contact sports when he grows....and the list goes on. Things he doesn't know he'll never be able to do yet but we'll need to tell him some day. This. Is. Hard. But not impossible....He will understand, eventually that great rewards come with his great strength. He is wise beyond his years. For all the can'ts....there are a thousand cans. He CAN walk. He CAN speak. He CAN grow, develop and thrive mentally, emotionally and intellectually. He can love and feel love. He CAN breath, LIVE and live abundantly. He CAN change the world. Change how people view disabilities......It will take time for him to see that. The hard times will be hard but the blessings will flow....like they always have. God bless this baby. Help him to see You and Your AMAZING WILL. We are loved and we are blessed. Thank you for sharing this beautiful journey with us. ❤️





Comments

Post a Comment

Popular posts from this blog

About Case.

-
Image
Let me tell you all about the boy that is the inspiration behind A Very Special Family. Before Case was born we knew he was sick. During the routine "gender scan" ultrasound they found a "spot on his kidney and a spot on his heart." They referred us to a high risk OB about an hour away from our home. In order to not drive myself crazy, I decided to tell myself it was nothing in the days counting up to the appointment. It was something. It was a lot of things. I'll never forget that day, the day I heard the laundry list of birth defects, health problems and complications my sweet baby had. I remember my world starting to blur. That day, in the OB office right after I was told our baby was sick I don’t remember much but I remember hearing the word “Grace”. It was clear and unmistakable. At the time, I thought the baby was a girl and that was to be her middle name. Once we got home from that appointment, I looked up the word Grace. Blessing and
Read more

About Case.

-
Image
Case is our fourth child. He has 3 sisters. At 22 weeks pregnant I had a routine ultrasound. The tech seemed calm, ordinary. She said we were having another girl. We named her Parker. "She" was healthy. Typical. Fine. A week or two after that "normal" ultrasound we got a call. There was a spot on our "baby girl's" heart and one on "her" kidney. Not a big deal. At about 25 weeks of Pregnancy, We had a second level sonogram about an hour away from our home.  I was told our baby would be different. Very different. It's limbs were way behind in growth. It had heart problems, kidney problems, and was small. Very small. The doctor strongly suspected Down syndrome or Trisomy. He did an amnio. I cried. He told me this was not my fault. I was doing everything I could. The baby was just made different. Two and a half weeks later, I got a call. I was there, in that hotel. On a mini "getaway" with the family. The doctor called an
Read more

I'm a Terrible Soccer Mom

-
Image
It’s true. I am a terrible soccer mom. I don’t like the bugs and the porta potties. I dread spending a good part of the evening or Saturday morning sitting in a muddy field listening to my kids whine that they are hungry and bored when all I really want to do is put my sweatpants on and drink wine on my couch. I’ve successfully avoided volunteering for the mandatory confession stand job for an embarrassing amount of time. And worst of all....I’ve MISSED games do to work and (usually) don’t feel guilty about it. Okay...before you start thinking I’m a terrible mom (too late?) let me explain...I love my kids. I love them so much my heart could EXPLODE. They are smart and funny. They are kind, considerate and helpful. And mostly, I really enjoy spending time with them and even though I’m a terrible soccer mom, I love watching them improve each season. I love watching their faces when they try to pretend they aren’t over the moon excited about the goal they just scored or the assist they ju
Read more