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Thursday, October 23, 2014

He Smiles in the Storm.

He Smiles in the Storm. 

When our beautiful, amazing, medically complicated son with an unknown syndrome was born, he was immediately hurled into a storm. We knew he was sick, were told he would die and when he literally started "dying inside of my womb" he was thrusted out via C-section, taken to the cold, metal exam table in a specialty hospital miles away from our home. Dozens of NICU nurses, doctors and staff crowed around him to "assess" his physical status and told his father we couldn't see him until they "knew what exactly they were dealing with". They allowed me to kiss his face while I was still strapped down to the surgery table and whisked him away. 
Once they had him all "suited up" in his isolate for transport via helicopter to Children's, they wheeled him into my room, my husband and I got to touch his little plastic box and say goodbye.....
He was born into a storm. He new nothing but the four walls of his hospital room, 30 minutes per day of parental holding, needles, tests and pokes for almost
6 weeks. After he was discharged the storm turned to a light rain for awhile while he was tested, poked, prodded, weighed, force fed and drug back and forth to Children's. 
Through the (almost) 4 short years of his life, it never stopped storming and he never stopped smiling. He smiled through 10 surgeries, 7 other anesthetic procedures, endless genetic testing, endless IVs, tests, hospital stays and on and on. His peace is super natural.
A peace that could only come from God and passes a tremendous amount of our "own understanding". He glows, really because he was chosen to be a light in the dark, a smile in a storm. He is a gift of true grace.❤️

Thursday, August 28, 2014

Two Cups of Coffee and Three cups of Grace.

"I don't know how you do it!"
If I got a nickle for every time I heard that, I could buy.....well, a lot of coffee....
I don't know what "it" is but I can assure you, I don't do it as well as one may think. Some days, I snap. Some days I cry. Most days I can't even function until I've had two cups of coffee. Honestly, with all that could or might go wrong, feel impossible or "not work" in this insane, beautiful, crazy life.....I barely get through the day without a whole bunch of coffee and even more grace. "By His grace we are healed". I take that figuratively. Yes, I believe in total healing of the body but I don't believe we get everything we ask for. I don't know why, but God chose our son to have Special Needs. He chose this family of six to live, to learn, to fail and relearn but most of all He chose to give us grace and grace unending......For every time I fail, for every time I snap at the kids, get grumpy at my husband and annoyed with the "system" I can go back and fill my cup with Grace. I will fail, and fail again. I don't have superpowers and even though I LOVED when my fifth grader looked up at me the other morning and said, "You really ARE super mom!" shortly after I ran back to the house in my pajamas to get her forgotten lunch box just in time for the bus, I'm not super mom. Truth is, being a mom is enough. I pray I never stop loving without condition like He loves us. That every time I fall, I'll never forget to reach my hand out and let Him help me up. 
We all DO what we can to keep our heads above water and if that means drinking a supersized Monster on my way home from Children's Hospital appointment number one milion, than that's what I'll do. With all of my heart, I believe that we are all fighting our own uphill battles and that we need to cut ourselves some slack or in my case pour myself my second (or third) cup of coffee. Don't get me wrong, I am flattered by your compliments and encourage you to keep 'em coming but I want you to know that I am "normal" just like you....:) One thing I know for sure, is God has blessed me beyond measure with tremendous friends and family to hold my hand (and pour me wine) along the way. I love them more than they know! Even though some days seem impossible and I go to bed wondering if my sweet, tiny son will ever know a life with out pain and hospital stay..... morning always comes with new strength, new grace and fresh coffee.

Friday, August 8, 2014

....She Laughs Without Fear of the Future.

"She is clothed in strength and dignity and laughs without fear of the future."
Proverbs 31:25

It's a thing. Laughing, enjoying life without fear, anxiety, worry about the future... I can honestly say, one of the hardest things I've had to do on this crazy journey is slowly teach myself to enjoy life free of fear and it's evil twin anxiety. To rely on God's peace, presence and perfection. I AM clothed in dignity and strength. I CAN laugh without fear of the future, fear of the mail, fear the ever heavy financial burden, fear of ever changing insurance policies, denials and limits.......I can laugh because God's got this. Because His ways are far better than my own.....I can't micro manage this. I don't have a magic wand.....I can't change Social Security's policies, government run health care or the fact that my baby still vomits every day....I've tried and I've failed.....What can I change? What can you change in whatever situation you're in? We can change our hearts. We can trust. Trust that everything is going to work together for good. A good that looks different from anything we could ever imagine....... This beautiful boy. His beautiful life. His tiny, scarred and worn 3 year old body is changing hearts and minds. He is teaching me how to "laugh without fear of the future....."  The hard days aren't over. The questions aren't answered. The mail isn't going to stop bringing bad news.  Insurance will disappoint. I'll continue to hand my tiny boy over for endless procedures and surgeries that I never knew existed....I'll still spend nights on hospital "beds" holding the boy that doesn't belong to me, praying that he will one day know a pain free life. There are no magic genies or wands. Just wills. We have the will to change our hearts. To LAUGH without fear of the future......

Saturday, July 26, 2014

"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 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. ❤️

Thursday, July 17, 2014

Amazing Case.

Amazing Case. 

Long time, no blog....Sorry. Things have been busy, I guess.;) More "normal" than ever.....Case has had a few weeks off from...everything....No therapies....No school....No appointments...Just fun and summer until next week. 
He's transitioned from being fed 21 hours a day via feeding pump to, 8 separate, 10 minute feeds through a tube and syringe a day and 8 hour pump feeds at night. HE LOVES BEING FREE, free for his back Panek, free to He's so, amazing....The biggest struggle he's having is daily vomiting. The same vomiting that's been going on for years....I pray for grace....I pray that soon, really soon this will be corrected. 
Today, Amazing Case went into a bouncy house for the first time. I was so nervous. Nervous to let my 3 1/2 half year old go in a huge house for bouncing...Not because I'm over protective or a worry wort but because he is fragil. He, not too long ago had his head cut open, movement makes him sick and he has brain conditions that could be hurt by lots of jumping, etc. he barley jumped....but boy did he SMILE! There is nothing a mom of a special needs child loves more than watching him do "typical" things. He. Is. Amazing. 
So, as we prepare Amazing Case for his 10th surgery (August) and 4th MRI (September), I remember that everyday is a gift and sometimes, we need to let go.....
Thanks for loving Case. Thanks for being loyal. We ❤️ You all. 

If anyone would like to purchase a Case t-shirt, here is the link.:)

Thursday, April 24, 2014

Dear Case

Dear Case,

You are our inspiration. You make us stronger. You've touched tens of thousands of people with your strength. Because of you, mommies are stronger when they have babies in the NICU. Because of you, grown ups decide to better manage their diabetes and stop sweating the small stuff. They see something beautiful. They see Jesus in you and want to be more like Him. You won't understand till you're older but you've shown me that perfect is an illusion. That different isn't defective. Different is beautiful. You don't know this either but, you've been though hell. You've been through more in you're tiny, 3 year life than 10 grown ups put together and you, my beautiful boy have done it all with a smile. I will never be able to thank you enough for being so special, for making our lives brighter. As you age, I see you understand more. You know what's happening soon.....that you're going to the hospital again. That they are going to cut you *again* (for the 9th time to be exact....). But you're not running. You're not worrying. You know God has incredible plans for you and they began the day you were born. You're so handsome, so loving, so kind. You know no other life and that's okay with you because you are a hero. Our hero. 
God bless you sweet baby, today and always. May you never be ashamed of your differences and may you always know just how much of a blessing you are. 


Tuesday, April 15, 2014

What Doesn't Kill Me Makes Me Stronger.

"Your grace abounds in deepest waters
Your sovereign hand will be my guide
Where feet may fail and fear surrounds me
You've never failed, and You won't start now"

Two weeks from today I will be in the Pediatric Intensive Care Unit at Children's Hospital of Pittsburgh. I'll be holding a tiny 3 year old with a hole in his scull and a catheter jammed in to monitor Increased Inner-Cranial Pressure in his brain. I'll be praying, wondering, maybe crying or laughing. I won't know if the following Friday I'll be handing my precious 4th born to a Neuro and Plastic surgeon for an 8+ hour scull, brow bone and fore head reconstruction surgery with.....I won't know how that is going to go if it does happen. I will have to trust, continually turning my anxious thoughts over to a sovereign God believing he will never give me more than I can handle and by that I mean what doesn't kill me makes me stronger.......
Before the birth of our son all Children's to me was a hospital Giant Eagle occasionally asked me to donate to. I usually said no do to lack of time and the inability to spare a few dollars. Fast forward 3+ years and Children's is so much more. It is where I have been broken and rebuilt. It has saved and enhanced my child's life in ways I never imagined. It houses some of my closest friends and second family members. It has become a mission field of sorts where I have been pushed to the edge of my faith. I never considered myself talented and all I wanted to be as a child was a mom. I loved babies and pretended like I had 8. I was the last one picked for dodge ball at gym class, can't carry a tune in a bucket and used to think God desired his people to beable to serve him with the visible talents he gave them.... I was wrong. I had to dig to find that talent doesn't always look like a beautiful singing voice or a pretty painting. We blossom where we are planted and I believe that Case is the exact child God planned for our forth. Not broken, not a mistake but a beautiful opening to a world of unknown. A spirit full of so much love and mystery is glows!
So, when I start to feel like God mistook me for someone stronger, that I can't go on any longer I will give thanks in all circumstances; for this is God's will for me (for Case, for our entire little family) in Christ Jesus.

"Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger"

"I will call upon Your name
Keep my eyes above the waves

My soul will rest in Your embrace
I am Yours, and You are mine
I am Yours, and You are mine
I am Yours, and You are mine
I am Yours, and You are mine"

Please take 5 minutes to watch this music video. The song has become a theme song for me lately and holds many blessings. <3