Frequently asked questions.

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