Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Sunday, December 21, 2014

Waking Up Four!

Dear Case Daniel McNulty,

Today you woke up FOUR! Wow! That's 4 more years than you were promised. Four more years than we were told to expect! Four years full of kisses and chaos!
Baby, you have come so far! You have proven so many wrong. You fought for every year! I am SO proud of you! I've watched every tear fall from your eyes and held your tiny hand through every needle, every test, every sonogram, every hospital stay.
 Daddy and I can't imagine life without your contagious smile and your energetic hugs. Your life will be different than the other preschoolers. It's full of tubes and pumps, medicine and Dr visits but we know four is full of promises. The promise of strength for the journey. Grace in abundance and the promise from Jesus that he will never leave you or forsake you. 
Nobody ever promised it would be easy but I promise you, it's worth it!!!

Love, mom. 

Birth 
First birthday 
Second birthday 
Third birthday 
FOURTH birthday!




Monday, December 8, 2014

Dear Case, Keep Beating the Odds!



Dear Case, 

Four years ago today, they told us to prepare your burial. They told us the worst. You were still inside. I could feel you. I knew you weren't well, weren't growing, couldn't survive a natural birth..... and I loved you. I loved you with every fiber of my being. I knew you belonged to God and I begged him to let you live. To give daddy and me the chance to raise you, watch you grow. I couldn't think of the future because I couldn't bear a future with out you. I wanted to see your first steps, hear your first words, let you pick out a dog that needed loving. You are a gift that keeps on giving. You may grow different, eat different, hit milestones different and live behind hospital walls sometimes, but you are perfect just the way you are. We thank God everyday that he loaned you to us, every perfect-imperfect part of you. Today, as emotions tug at my heart and visions of that horrifying day four years ago flash through my head, I thank God for his unending grace and the gift of our Very Special Case. 

Always and forever love, 
Mom 




Sunday, November 2, 2014

Our Cranio Journey.

Our Crainio Journey. 


Steep a cup of tea and get comfortable because this is gonna be a long one!
I've never really documented Case's journey from diagnosis of Sagittal Craniosynostosis  to the Crainio Vault Remodeling. In part, the struggles of the journey were still fresh in my mind and I wanted to wait awhile for the results of a full scull repair to be apparent. 
Let's start in May of 2013. For a while, Case's Geneticist thought he had a suture (every baby is born with small gaps in their scull that close as they grow older) or two that had prematurely fused causing his brain to be crowded and his head to grow wrong. She requested a CT scan and for us to be seen after the scan by the Crainio-Facial clinic at Children's. He was already a patient at the clinic due to his sub-mucus cleft pallet and other Cranio-facial anomalies. The CT scan showed that the top suture on his head was indeed closed meaning Case had Saggital Crainiosynostis. The first Dr we saw does not do Crainio Vault Repairs but her face was strewn with concern. His head was misshapen and his brain was growing wrong.....that sent us into an immediate whirlwind of VEPs ( a visual test used to detect inner cranial pressure and other symptoms of Craniosynostosis), eye exams to check for swollen optic nerves, etc. 
Case was then scheduled to see who we will call Dr. X in July of that year. Dr. X said he needed a Cranio Vault Repair within the next few months. His concerns were that there wasn't enough fluid around his brain, the frequent headaches, etc. 
So, there we were, planing for a major scull surgery around October! This was going to increase my son's quality of life. It was one answer to the many questions his very complicated life holds. I called the blood bank to prepare to donate blood for after the intense repair that would cause a loss of a lot of blood. I called the scheduler, made babysitting plans for his three sisters, planed mentally and physically for what would be the most invasive surgery of his life.....I was ready! In about August or so I got a call. I thought I'd be getting the final date of the repair, instead I was told Dr. X was leaving the facility and we needed to make an appointment with Dr. Y.
"Okay." I told myself....."It's okay. I'm sure Dr Y feels the same way and we'll move forward as planed. 
So, we went back to the same hospital and saw Dr Y. I was wrong. Dr. Y did not agree Case needed the repair unless he showed solid signs of increased cranial pressure. Headaches, vomiting, irritability could all be side effects of other things Case had going on. After all, we have an "incredibly complicated son". 
I was trying to process all of this. We went from having a huge surgery in the fall to possibly never having the craino vault repair....wow. 
I was obviously befuddled. Dr. Y handled me courteously. I told him I wanted Case's Neuorsurgeon consulted. Case has a great Neurosurgeon that knows Case, his complications and needs. Dr Y agreed and called me a few days later. 
The decision was the same. Case is complicated. "There's no hard evidence he needs the surgery", he said. "Case is too complicated. We have to be sure the surgery is necessary..... No pressures are showing up on the VEP, his optic nerves look good. We will just continue following him and if pressures come up, we'll talk surgery then." The Neurosuren also said Case is complicated and we can't be sure the headaches, etc. we're from the Crainiosynosis so, he too wanted to wait and that's when I felt like my heart fell out of my chest. I was out of controll. All I could do was trust God and the Drs and go on with life.....That. Was. So. Hard. 
In the back of my mind I knew if Dr X just would have stayed a little longer.....this would all be better and we'd be "on the other side" of the repair. But, I knew Dr. Y was/is a very good Dr and that him and the Neurosurgeon were doing what they believed was in Case's best interest....
Okay, let's skip to the spring of 2014. After meeting with an amazing Neurologist and a slightly "off" VEP it was decided that Case would have an Invasive, Innercrainial pressure monitor placed in his head to see what pressure was really there.... The end of April, he was admitted to the PICU at Children's. They sedated him, drilled a hole in his scull and placed a pressure monitor on a sunny Tuesday morning. We stayed there and pressures were monitored. At this point, he was having around 12 headaches a week, still vomiting at night, was way behind in speach and growth. His pressure spiked some during the invasive testing but not as much as we expected and only before a headache....Wednesday, they still weren't sure he had enough pressure to operate. "If he weren't so complicated, they go ahead and do the repair" but they were taking every precaution necessary to make sure Case was not submitted to unnecessary pain, etc for not enough reason.....That's when Dr. Z comes in....Dr Z is another plastic surgeon that saw a need for the surgery and thought we should go ahead. He consulted Case's Nurosurgeon and they agreed they would go ahead and do a full Crainio Vault Remolding Friday! Holy. Freaking. Cow......it was going to happen and I was ready. I prayed we were right. I prayed the posible "reasons he'd never leave the operating table" wouldn't happen. I prayed he wouldn't bleed too much, get an infection, etc. 
Surgery was set for that Friday and the is what they would do:
But a zig-zag incision from ear to ear. Pull his skin and fatty tissue back then take out his scull in sections. They'd then cut it "like a blooming onion" and put it back using surgical paist, chips of his own bone and dissolvable plates and screws to secure the repair. 
I handed him over and can say, I wasn't scared. I knew this needed done and I felt peace. I'll tell you when I cried.....when I saw him all bandages up in his PICU bed after surgery. It. Was. Done. We wre on the other side and it felt good! A weight was lifted off my shoulders. No more wondering, no more pleading, no more pushing... now....just to sit back and hope it was the right choice.

Fast forward to now. We celebrate his 6 month crainio anniversary today,  November 2. I have no regrets. He's gained 7 pounds (because he can swallow better and is eating more by mouth), his speach and over-all development has DRASTICALLY increased. His headaches are GONE! The pressure was so severe, it caused his brain to decend below his scull (Chairi Malformation 9mm). Well, that's GONE! The only thing that still exists still is night vomits. We still don't know why they happen but, I know, some day, with the help of Case's AMAZING medical team and God's grace we'll know why they happen and he will get relief. 
In a nut shell, our crainio journey was hard. Confusing. Exhausting. More so, than the NICU and maybe even the Genitic journey....but it's over and we are blessed.❤️
A few days before the Crainio Vault repair. 





6 months post-op. 









Saturday, October 25, 2014

A Very Special Wish.

When I first found out I was pregnant with my fourth child, I was elated! I miscarried our third child. A few years later we had Lainey and we really wanted one more. So many thoughts ran through my mind....."What if the baby is our only BOY?! What if we have a fourth, precious girl? What if I miscary again?....That would be so hard.....I wonder how big he/she will be, who they will look like and what their future holds...." Never once did I think, "I wonder if my child will be chronically ill and qualify for Make a Wish". There were a lot of things that never crossed my mind concerning my unborn child. Atleast not untill my 25 week sonogram with a high risk doctor. 
Spnething thing I did realize while on this journey is you can't imagine the grief you'll experience at times. Equally, you can't imagine the joy that comes along the ride.....
Our precious, complicated, strong boy, Case was picked to Make a Wish. Through all of the hards, the bads, the booboos, through all of the tears and the pains there's always a light at the end of the tunnel. This wish is our light.❤️
After being referred, chosen and checked out....Two fantastic Make a Wish volounteers came to our  home and asked him what he wishes for. He said in his own Case way that he wants to meet Mickey, Buzz, Sully and Mike and "Mickey Mouse's House."
What a blessing, not that Case categorizes as having a chronic illness but that our family can have a FANTASTIC week away from all the "normal". A week to do nothing but enjoy each other and thank God for our miracle. 




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 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. ❤️





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 tumble...free. 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.....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. 

Love, 
Mom 




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
 

 


Thursday, April 10, 2014

Update.

So, I usually do all of Case's updates on his facebook page. If you don't follow him on facebook, click here.
I'm going to TRY hard to update the best I can on here too for those of you that don't have a facebook account but for now, please pray for the important things going on at the end of this month.:)


On April 28th (Monday) I'll be admitted to Children's for a procedure Tuesday morning. They will place a catheter into my brain to measure... the pressures in my head. I will stay in the PICU (Pediatric Intensive Care Unit) while they do this. On Thursday, they will take the catheter out, do an another MRI (I just had my 3rd in December) and decide if I need a Cranio Vault Repair (an invasive and intense surgery where they will completely reconstruct my scull-*and my forehead, etc.)
It's all a bit overwhelming but we know that God has great plans! We will be fine either way....If Case gets the surgery, it could really increase his quality of life and eliminate his headaches. If he does not get the surgery, we are confident his incredible team at Children's will find out what's wrong and treat it.
Just pray.

Wednesday, April 2, 2014

Rise Above Your Circumstances.

Rise Above Your Circumstances. 

I've heard that phrase 100 times and never gave it a second thought... Until last night. Rise ABOVE your circumstances. 

It's been a long month (I think I say that every month) with "normal" SN issues, 3 long days full of appointments, blood work and tests at Children's, long car rides, and you know, raising four children....
I'm not telling you all this to complain, I'm telling you this because it was last night, while I was tossing and Turing that I heard it "Rise above your circumstances."
Rise above the issues, the system, the chaos, the pain, the fears that this will never be easier and BE AT PEACE. That's what's crazy about peace, we can have it admist the war. Tucked deep, down in our heart. We can feel it in the PICU and when our son's case workers won't won't call us back. We can feel it when we're tired, sad and happy..... 
You see, life is not going to get easier. There are no magic genies or wands just an ever powerful God that has strength and peace unlimited.....and after one crazy month, while I'm sitting in my sons room at 6 in the morning catching his vomit and rubbing his head (not because he's sick but because his tiny body experiences pain, chronic pain every day) I CAN HAVE PEACE. Because, "HE knows the plans he has for me" (for Case, for this entire family....)and they are good. 
I've spent the month listening to Drs tell me how complicated my tiny 3 year old is, that they've never treated anyone "quite like him". I've added to his unending lists of diagnosisis and I've held back tears while I asked a dr if this was "his son", would he give him another chane? Would he run more tests? Would he figure out why he vomits and has headaches most every day of his life?
I'm not a dr but I'm his mom. I am thankful for the beautiful blessing of Children's, for the incomparable care and that even though my son is "incredibly complicated"...they won't give up. I love him and his sisters with all of my heart and I will always be their voice. But, they ultimately belong to God. Always will. They will always be "okay" because they are in God's hands. 
I don't have to be fearful and admist sleepless nights, long days and hard battles I can rise above. I can have peace and have it abundantly and you my friend, can too. No matter what your "circumstances" are you can have rise above them and peace abundant. 

 

"I am calling you to a life of constant communion with Me. Basic training includes learning to live above your circumstances, even while interacting on that cluttered plane of life. You yearn for a simplified lifestyle, so that your communication with Me can be uninterrupted. But I challenge you to relinquish the fantasy of an uncluttered world. Accept each day just as it comes, and find Me in the midst of it all."-Jesus Calling

(Verse)
I can barely stand right now.
Everything is crashing down,
And I wonder where You are.

I try to find the words to pray.
I don't always know what to say,
But You're the one that can hear my heart.

Even though I don't know what your plan is,
I know You're making beauty from these ashes.

(Chorus)
I've seen joy and I've seen pain.
On my knees, I call Your name.
Here's my broken hallelujah.

With nothing left to hold onto,
I raise these empty hands to You.
Here's my broken hallelujah.

(Verse)
You know the things that have brought me here.
You know the story of every tear.
‘Cause You've been here from the very start.

Even though I don't know what your plan is,
I know You're making beauty from these ashes.

(Chorus)
I've seen joy and I've seen pain.
On my knees, I call Your name.
Here's my broken hallelujah
.

With nothing left to hold onto,
I raise these empty hands to You.
Here's my broken hallelujah.

When all is taken away, don't let my heart be changed.
Let me always sing Hallelujah
When I feel afraid, don't let my hope be erased
Let me always sing Hallelujah.
Let me always sing Hallelujah.

I will always sing
I will always sing
Here's my broken hallelujah.

Thursday, March 20, 2014

Don't give up....Let go....

Don't give up....Let go....

Sometimes I want to give up. I'm so tired, not strong enough, brave enough or organized enough to be the mom of a miracle. It's a privilege and a challenge wrapped in paper work, headaches and messes.....Beautiful messes. 
Then I hear it....a soft, sweet voice... "Don't give up. Let it go."

"Just let go.....Know your children are mine. I've lent them to you.....To parent not perfect. Perfection is a delusion."

When it takes everything I have not to throw in the towel I remember, I don't have to white knuckle my problems (and trust me, it's problems I've got.....). I can let them go. Be broken and remade. "I don't want to be rescued....I want to be redeemed"......Scary thought, right? "I don't want to be RESCUED, I want to be REDEMED!"

*"redeemed":  to make (something that is bad, unpleasant, etc.) better or more acceptable. 

Being rescued would be easier....in the present. For all my troubles to go away....Financial hardships, emotional turmoil, physical suffering and on. For it to just "fall off", yeah, that would be easy but would it change me? No. Would being rescued better me? Maybe for a few minutes but then I'd be comfortable for the first time in a long time and I wouldn't need Him. God never promised we'd be comfortable but he did promise peace in the turmoil, joy in the pain and sun just enough for a rainbow after the storm. He is sovereign. He wants us to let it go not give up.....

Oh god, I want to let go. Every day. Every moment. Every time the phone rings, the paperwork disappoints, the Drs disagree and the system discourages me.....Every time and expected or unexpected bill comes in the mail....Every time I wake fearful......It's a continual and conscious decision I have to make....Let it go. Let it go.... My problems are endless, out of my control. They give me headaches and change my attitude but they don't have to. I. Am. Out. Of. Control. So, why not let go? I am forgiven and can have joy in the journey.


 
Lyrics to Create In Me :
(Verse)
I’m running ragged
My mind is full of words that I'm too scared to say
I’m running ragged
But you still love me this way


(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again

(Verse)
My heart is a cathedral
These halls would echo in the darkness for so long (for so long)
My heart is a cathedral
Come and fill it with song

(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again

(Verse)
Build something beautiful
Don't leave until you do
I'm tired of the old routine
Make me new

I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me

(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again
(Verse)
I’m running ragged
My mind is full of words that I'm too scared to say
I’m running ragged
But you still love me this way

(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again

(Verse)
My heart is a cathedral
These halls would echo in the darkness for so long (for so long)
My heart is a cathedral
Come and fill it with song

(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again

(Verse)
Build something beautiful
Don't leave until you do
I'm tired of the old routine
Make me new

I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me

(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again








 



 

Monday, February 10, 2014

In the Valley, there are Blessings.

Blessings are all around us but our vision is clouded by the trouble that is everywhere. Everyday something or 400 things go wrong, don't go as planned or turn into mini (or major) disasters. There is trouble in this world and I, have seen a lot of it first hand. Troubles come with the beautiful blessing of being the full time care taker of a special needs child. The troubles of insurance companies, sickness, un-ending paper work, hospital stays, sleepless nights, no light at the end of the tunnel.....and on and on.....It is so easy to have constant focus on our trouble to the point of creating troubles in our mind that DON'T exist. I can easily and with out even realizing it worry my way into scenarios that won't ever happen....It is at that point that I can be in charge of my thoughts. I can see how blessed this journey really is! I have to consciously change my train of thought to trust and thankfulness (a friend of mine calls it a stop thought: stop the toxic, worthless thinking and change it to thoughts of life). With all of the tubes, trips to Children's, paper work, unexpected disasters, etc. there is love. There are gifts of hot meals and hugs. There are friends that are new and friends that are old that will always listen, always help, always love. Even when they don't understand or when they've listened to the same compliant a hundred times, they are listening. There is a hand in the darkness always open, always ready to be grasped. No matter how big we let fear get, our God is bigger, our hope is stronger and love is all around. He is placing blessings unimaginable all throughout our day. All we have to do is live. Moment by moment we can take charge of our thoughts that create chaos and believe with every trouble are blessings indescribable. 

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”



 "I'll be by your side
Wherever you fall
In the dead of night
Whenever you call
And please don't fight
These hands that are holding you"