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.

Monday, December 30, 2013

He'll be by my side.

 
It's true, through the darkness and the trials. At the hospital and home, He will be with me always because I am loved and I am valued. In a world of medical. When it seems all I do is make phone calls, shuffle paper work and travel to specialists because my child is special, it's easy to lose myself. My mind frequently spins with the last medical info or the dread of the upcoming test/hospital stay/procedure.  It's a burden that is heavy and constantly reminds me that there is no end in sight....but then I remember, I am loved. I am valued and I matter. I remember when I carried my miracle who's insides and outsides were being formed intricately and uniquely He was whispering His promises into my heart. That this is a beautiful, blessed and different journey. That we'll always and forever be okay because even though our future is uncertain He will always have His arms wrapped tight around us. He's always close by to hand the ever looming anxiety and fear to. I am not ashamed of bad days because bad days don't mean I'm a bad person, they just mean I AM a person and I am growing. I can do this because He is with me and shining enough light in my path for the few steps in front of me and all I have to do is step.....one foot at a time.

 



Saturday, December 21, 2013

I Thank God for BEAUTIFUL you!

Beautiful YOU!

Dear Case,

Happy three years! What a wild ride it's been. Thank you for being YOU! Bright, bold, beautiful YOU. You're different from the rest. You're insides , your outsides, your heart and your soul, I wouldn't change one tiny thing about you. I've loved everything about these crazy 3 years. I've loved the good, I've loved the bad, the chaotic and the sad. I've loved it all because it's all part of who you are and what we've become. We are different. We love more, we yell less....all because of you. You are so beautiful. Case, I'm so thankful you were born just the way you are. I love your spirit, I love your smile, you'd crooked fingers and tiny toes. I can't believe all you've endured in 3 short years, all of the pokes, all of the tests, the surgeries, the nights at the hospital but through it all, you still smile so bright. You are my inspiration and I still remember the first time I saw you. I remember looking into your tiny eyes and just knowing everything would be alright. Everything will always be alright. No matter where we are or what we are doing..... we will always be alright because we will always have each other. Just like your first Christmas when you were in an isolate with needles, wires and tubes and we celebrated at the Ronald McDonald house with a tiny tree and a lot of love.....You see Case, it doesn't matter where we are or how we spend our days as long as we always have you. Bright, beautiful, you. 

With all my love, always and forever....

Mommy
The day I was born.

When I was 1!

When I was 2!

I am 3!

Monday, December 16, 2013

I Love the Way You Hold Me.


I Love the Way you Hold Me. 

Sometimes we just need held. Sometimes we just need to give up, look at the few steps in front of us and just trust. We need to TRUST that He will ALWAYS be near. When the world runs us ragged and we can't see the light at the end of the tunnel we need to stop letting the busy control us and just be held. We need to remember that there is always someone (many) with a harder battle and when we feel too tired to take one more step...... We need to stop and pray. Pray for those hurting. Pray for those breathing their last breaths. Pray that we will never, never take our breaths for granted. Pray that we can see the blessings in the busy., in the "not fair". That we will never be to busy, too selfish to appreciate God's grace in this crazy place. We are blessed. We are valued. We are loved. Above all else, HE will NEVER leave us or forsake us. Never.

 



"I love, I love, I love, I love the way you hold me
I love, I love, I love, I love the way you hold me
I love, I love, I love, I love the way you hold me
I love, I love, I love, I love the way you, the way you

I've had a long day, I just wanna relax
Don't have time for my friends, no time to chit chat
Problems at my job, wonderin' what to do
I know I should be working but I'm thinking of you and

Just when I feel this crazy world is gonna bring me down
That's when your smile comes around

Oh, I love the way you hold me, by my side you'll always be
You take each and every day, make it special in some way
I love the way you hold me, in your arms I'll always be
You take each and every day, make it special in some way

I love you more than the words in my brain can express
I can't imagine even loving you less

Lord, I love the way you hold me
Whoa, oh, I love the way you hold me
Whoa, oh

Well ya, took my day and you flipped it around
Calmed the tidal wave and put my feet on the ground
Forever in my heart, always on my mind
It's crazy how I think about you all of the time

And just when I think I'm 'bout to figure you out
You make me wanna sing and shout

I love the way you hold me, by my side you'll always be
You take each and every day, make it special in some way
I love the way you hold me, in your arms I'll always be
You take each and every day, make it special in some way

I love you more than the words in my brain can express
I can't imagine even loving you less

Lord, I love the way you hold me
Whoa, oh, I love the way you hold me
Whoa, oh

I'm so grateful and thankful for all you've done
Wish I could tell you in a short story or poem
But all I have is my voice and this guitar
And you have my heart

Oh, I love the way you hold me, by my side you'll always be
You take each and every day, make it special in some way
I love the way you hold me, in your arms I'll always be
You take each and every day, every day, every

I love the way you hold me, by my side you'll always be
You take each and every day oh-so-special
I love the way you hold me, in your arms I'll always be
You take each and every day, make it special in some way

I love you more than the words in my brain can express
I can't imagine even loving you less

Lord, I love the way you hold me
Whoa, oh, I love the way you hold me
Whoa, oh
Oh, I love

I love, I love, I love, I love the way you hold me
I love, I love, I love, I love the way you hold me
I love, I love, I love, I love the way you hold me, hold me, hold me"



Tuesday, December 3, 2013

The Best Job in the World.

The Best Job in the World. 

I'm a special needs mom. I know what stomach juices drained right from the stomach smell like. I know how to change a feeding port right out of a belly. I've "slept" in firm backed chairs by hospital beds and told Dr.s they are wrong. I've witnessed the undeniable miracle of a baby that "won't" turning into a baby that does and does again. I've seen pain, I've planned goodbyes and thanked God they were only plans..... All of these things and many more are things I never imagined  I would do. Frankly, if you would have told me this is what life held 10 years ago....I would have run for the hills. There is no way to know until you experience it the unexplainable blessings and deep joy being a mom of a miracle can really bring. 
This job is not for the faint of heart. Sometimes it feels like a deep, lonely pit. One that just goes deeper with no end in sight.....Honestly, even though we are approaching year number 3 it sometimes still feels like the "newborn" stage. You know, the beautiful first couple months where you aren't sleeping, showering or thinking clear thoughts. During those months you hold your beautiful baby and hold on to the hope that "this too shall pass" and someday your child will be grown, independent and not needing much more than hugs, food and warmth. For us special mommas, we don't know if or when that will ever happen. We don't know if our children will ever not need feeding tubes and full time care. It's a hard reality to not know what your child's future holds. All you can do is hold on, drink coffee and continually remind your self that strength comes along the journey. I know that I was picked for a very special reason and that I do indeed have the best job in the world! 

" Do all things without grumbling or disputing, that you may be blameless and innocent, children of God without blemish in the midst of a crooked and twisted generation, among whom you shine as lights in the world, holding fast to the word of life, so that in the day of Christ I may be proud that I did not run in vain or labor in vain."

"Colossians 3:23-24 Whatever you do, work heartily, as for the Lord and not for men, knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ."


 

Sunday, November 17, 2013

About Case Updated.

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, deformities 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 and we needed to see how bad all of this really was....
Two and a half weeks later, I got a call. I was there, in that hotel. On a mini "getaway" with my family. The doctor called and said he didn't have down syndrome or trisomy but that he was still a very sick BOY and they would run more tests.
The tests kept coming back without any real answers....

We went to several appointments, had non-stress tests and two+ second (and third) level sonograms every month. Somewhere in the midst of the chaos, I would remind myself to take it moment by moment, day by day.

With every sonogram, the news got worse. The baby was way behind in growth. 11 weeks. The kidney was bad, the heart  was bad, the feet and hands looked to have problems, there were several "congenital anomalies" and every time they measured my belly to check for growth, I went down a week....There was one problem after another. On December 8th (about one month before my due date), we spent all day talking to specialists and doing sonograms at Magee Hospital in Pittsburgh (about 2 1/2 hours away from our home).It was there that he said it. "Your child has too much wrong with it. It will probably die. It was just made wrong. It's "computer programing" is messed up." Those words cut like a knife. I will never forget that cold December day and our 8+ hours of gloom. On December 20th we had another second level sonogram in Johnstown. I didn't want to go. I was done, not with my baby but with the doom and gloom reports from the doctors. With "expecting the worse and hoping for the best". With the solemn, confused faces. With the painful thoughts that our baby didn't have a fighting chance and that instead of a birth plan, we were advised to have a "death plan". We went. It turned to be a good thing we did. Our baby was dying inside of me. His chord blood and amniotic fluid were dangerously low. After what seemed like hours of non stress tests we were cleared to drive straight to Magee. I hugged the Doctor from Johnstown and cried. Again. Once we arrived at Magee I had more sonograms, non stress tests and a horrible migraine.


Towards the end of the non stress tests, his heart rate started dropping. It dropped to 24. An alarm sounded, drs ad nurses rushed in and I said goodbye to my boy. After all, he belonged to God and for some reason, it looked like God would keep him. I told him I loved him and it was okay to go but I'd really like to meet him. With the help of the Drs and nurses, Case stabilized. They admitted me to a room and did a c-section in the morning. We were so scared. On December 21, 2010 at 4 weeks premature. They pulled him out and wouldn't let his daddy look at him. There were dozens of people crowded around him. You see, before birth they seemed to think he'd be born a mess, inside and out. When they finally brought him to my face, he was BEAUTIFUL.



 All 2 pounds, 13 ounces of him. He wasn't super early but due to IUGR and an undiagnosed syndrome, he was so tiny. They life flighted him to Children's of Pittsburgh, only 7 minutes away. It took 4 days till we could hold him then it was only for 15 minutes a day. After 38 days at Children's, dozens of tests and pokes, Case was 4 pounds 1 ounce and we went home.
 

 

 

Fast forward to now.




 
Case is almost 3 years old. He still has an undiagnosed syndrome (But through EXTENSIVE testing and an incredible new really extensive test we may be closer to an answer in a year or so;) fed through a G feeding tube 21 hours a day. He is only 19 pounds. He has dozens  doctors, specialists, and therapists (and keeps needing more...)He has Chari Malformation I, Hypoglycemia, Crainiosynostosis, A Stenosis of the Foreman Magnum, low muscle tone in the right side of his face, a sub mucus cleft pallet, narrowing in the back of his throat, Swallowing issues, problems with his left ear, slow motility, GERD, aspiration issues, A VSD, ASD, and PFO that are resolving themselves, other abnormalities of the heart, a tethered cord that was untethered, several other birth defects. a dysplastic, multi-cystic, left kidney, fluid in the right kidney, keratosis pilaris, Failure to thrive and probably something I am forgetting. He will have his 11th surgery/procedure on January 3 and more after that.  He is behind in speech and a bit in hitting other milestones and will be attending an IU preschool in January. He eats very, very little but is kept alive with his feeds. It seems every month or so, they find something new and add a new doctor.


 
All in all, Case is our miracle. My heart breaks for all his tiny body has been though and will continue to go through but it wells with joy at the thought of this incredible journey. It is not a glamorous one or one full of rest but it is blessed. It is full of monthly (sometimes weekly) trips to Children's, hospital stays, pokes, prods, tears and laughter. It is far from what we imagined for our fourth child but it's our beautiful/crazy/miraculous life.

 

Thursday, October 31, 2013

You are good enough. Period.

 
You are good enough. 

Hey, you....Yeah you, the mom with regret written all over your face. 
You are good enough. You are strong enough. You are pretty enough. You are doing a good job. At the end of the day, when you're laying in bed and through your brain is running all the things you've done wrong. You're thinking about your unorganized sock drawers and dirty toilets. You're thinking about the home work you forgot to sign last week resulting in your daughter getting a "warning" (in other words, her mom sucks and she suffers)...About all the things you could have and should have done but didn't have the time, the energy, the brain space or the strength....
 At that moment remember how loved you are. How forgiven you are. How you, yeah you were made in Christ's image and you are a child of the one true King. Don't listen to the voice that tells you otherwise. With all that you are and all that you have, believe that you indeed ARE good enough. Remember that with the night comes the morning and a whole new day of mercy and grace. Being a mom is hard. After all, we are raising tiny beings that some day will be adults and will make decisions of their own. More times than not, we're pretty sure we've screwed them up beyond repair....but deep down, just try to believe that children were made with forgiveness and probably won't remember how dirty the toilets were or how disorganization spewed out of the cupboards when they went to grab a glass. They won't remember that you didn't have time to put make up on or change out of your slippers before running to the store. They don't know that you wish you were 10 pounds skinnier or that you often wonder if all you do is in vein. They will remember the 7:00am tea parties and late night prayers. I can only hope they will know deep down in their precious hearts how much their momma loved and cherished them. That they will forget your tired snaps and frustrated words as you clean their juice spilled spots for the third time in a row... So, sweet momma....the next time you think you've failed remember that you are loved, you are cherished, you were made perfect in the image of the one true king.<3

 
 
"Work willingly at whatever you do, as though you were working for the Lord rather than for people."

 



Thursday, October 3, 2013

Dear Worry.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
—Matthew 6:34
  
Dear worry,

I'm over you. You exhaust me. I'm tired of your constant need for attention. You started to push your presence hard into by being over three years ago when I heard words like, "Prepare yourself to bury your son" and "I just don't know what to tell you....your child was just made wrong...". It was then you started whispering no, shouting, "NOTHING IS EVER GOING TO BE OKAY. Don't you see, the Dr.s don't even think your baby has a chance!" Well worry, you were wrong. My baby is a fighter and my God is sovereign. He doesn't make my life perfect because perfect is boring and perfect requires no dependence on Him. You, worry, are getting old and I'm breaking up with you. Don't tag along when the Drs give my son his 30th diagnosis. I don't need you when I open hospital bills or insurance denials. I've got a bigger, better friend. If I literally need to shout His name to scare you away, I will because I can't live with you anymore. You steal my joy and my peace. You lie and I've believed you for too long.
This life. This special, Dr filled, new and scary life is blessed. I don't want to go back and I will not roll over. I will stand tall and take what I was given and when you worry, slither in I will look at my special son's smile and remember that with great power comes great responsibility.
Sinsey,

The momma of a superhero. 





Sunday, September 1, 2013

Walking through the woods with a blind forld on...

 
Being the mom to a special needs, medically fragile miracle is like walking through the woods with a blind fold on. Most of his doctors are right beside you...blindfolds on too. Helping you find your way and making this place a safe home for your child. Other doctors ran away when they were handed a blindfold..."It's just too much. Too complicated.....too scary" they'll say. "Good luck!" They'll say and run away...
Then there are the other miracle momma's walking behind you. Some have special angles and have been forced to do what you fear most, bury their miracle. Still, behind you they'll stay because together you are a community. You need each other and aren't afraid of a little blindfold... Sometimes you'll feel lost, bruised and broken...but you'll keep walking...As you walk through the dark, scary woods, you'll hold tight the hand of your child and in your other hand is a machete, cutting down the obstacles in your way... You see, having a special child is not a walk in the park. It's a big, scary adventure. One that you didn't ask for, didn't expect but won't ever run away from because the blessings out weigh the heartaches and even when it starts to storm, no one, nothing, not even a diagnosis (or lack there of) can stop you from dancing in the rain. From making this place your home because only you can choose your attitude. There will be detours and road blocks almost every day....but when you look up, a light shines so bright, you can see it through the blindfold. It is then you know, without a shadow of a doubt, you were born for this and you're doing a great job! You may never make a way out of the woods but will make a home in them and peace with your journey.

"Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you're not alone
Cause I'm going to make this place your home"




 





Tuesday, August 20, 2013

Dear Child of Mine


Dear beautiful child without a voice,

I will be your voice. I will not back down, I will not give up, until my last breath...I will fight for you. I will not let a man in a suit, behind a desk tell me what is "medically necessary" for you. He has not cried for you, slept in a chair in the hospital for you or fought for you. He does not know your pain nor has he seen your strength and with all due respect, I don't think he'd care to but I have...and I will continue to because i love you with every fiber of my being. For the rest of my life I will fight for your needs to be met because the sad reality is that children as special as you don't always get treated as the kings and queens that they are. It's true, dear boy and that's why they were given mommies like yours. To be their voice, to fight for meds and treatments and beds....Don't worry sweet prince, I will do all that I can for as long as I can so that your sweet, soft voice can be heard. Even when I'm scared I will stand. In a  court room, in a Dr.s office and in the class room I will stand up for what I believe in. Because I believe in you. 

Love always,

Mommy


 

 


 
 
 
 

Sunday, August 11, 2013

Dear beautiful baby,


One of Case's fans asked a few days ago about what my biggest fear for Case's future is. Honestly, I don't think about it much. I've tried since pre-birth to take one day at a time but I know what it is. My biggest fear for my medically complex, special needs son is that he will feel left out, "defective". I will always be beside him, cheering him on...Telling him that different isn't defective. Different is beautiful!! 


Dear beautiful baby,

After you were born, God broke the mold. No, really. There is no one else like you, anywhere. You were made different. Yeah, different but that's a GOOD thing. You are not weird or odd.  In fact, your differences make you even more beautiful than I ever could have imagined. Not only on the outside but on the inside too. When God put you together he placed your parts with great care and made them super special, kind of like Spider-Man's web shooting wrists and Superman's extra strong arms...You see, beautiful baby, he knew you were strong enough to be made just like you are and not be ashamed. Never, ever feel ashamed to be you. Because, you are so beautiful. And, baby once you start to notice you are different then the rest, hold your head up high because when you, BEAUTIFUL you were made, God broke your mold and THAT is something to be proud of. Don't ever, never ever let someone tell you different. 

Love,

Mommy 

 
 
 
 

Sunday, July 28, 2013

"Be thankful in ALL circumstances.."



Almost 3 years ago my life changed. I stepped into a world that was no longer comfortable. A world that can't be fixed by a prayer. Where asking for healing doesn't always mean the pain or the sickness goes away....It was in September, 2010 when I saw a perfectly beautiful unborn baby full of deformities and disease before he even took his first breath. I was told over and over and over again that my perfect baby was made wrong. That the child inside of me was deformed and incomparable with life...(I hate those words "incompatible with life", they make my stomach turn...I don't think they should be formed into a sentence....If a child is born alive then that alone is a child "compatible" with life.....Right?!) During the days leading up to the birth of Case I belonged to a "high risk pregnancy" board online. I read a post of a young mother who aborted her daughter because the Dr.s told her of the horrible things this girl was up against....they painted a picture very similar to the one that was painted of Case..."Probably has Trisomy 18, fused fingers, deformed feet, severe growth retardation, heart disease, kidney disease and on and on...."She made the choice to terminate and I did not. I do not blame her..We live in a world different from our parents and grandparents where we can easily end the lives of unborn children but.... this is not what this post is about. I am indeed pro-life but I do not judge those who are pro choice and I do not wish to defend my "pro-life" status. I am however, thankful that I chose life and that life has changed me. Saved me even,  from walking around in a world of safety and health. Case has shown me Grace in a fallen world. He is different than I ever could have imagined my 4th child to be and before his birth I believed prayers made sickness and disease go away if we believed enough and that we were usually guaranteed tomorrow. I never knew the joys of disability and challenge...."Be thankful in ALL circumstances..." is one of several verses I held onto in some of my darkest days. I knew deep in my heart that whether or not Case lived or died, he would be alright and so would I as long as I cling to the promises of God forever...Promises of life not death, joy not sorrow and peace in all circumstances. Peace that passes ALL understanding.... I do, honestly struggle with fearing the worse and worrying about tomorrow because I have been plunged into a world where tomorrow is often taken in childhood and where "ow" is a first world but it's during those days I need to remember that I am beautifully blessed with a different kind of life.<3 

"Don't be afraid to let your feelings show
If we dry up, then we won't grow"



Give thanks in all circumstances; for this is God's will for you in Christ Jesus-1 Thessalonians 5:18


"I don't know what you're doing...but I know WHO you are."






 

4 years ago.

Yesterday I needed to get my picture taken for my drivers licensee and when I looked down at my old license, I saw a young girl who decided she would hold onto her organs when she went on to heaven.......
4 years ago I was living in a different world. A would where The Children's hospital was just another hospital I've heard of and backpacks were for books. 4 years ago I had 3 healthy babies and terminal sickness was something I rarely thought about. 4 years ago when I got my last drivers license picture, I opted out of organ donation because I didn't want my organs "eyed up" and I didn't know I'd ever be living in a world that children die waiting for the gift of life. 4 years ago, I never dreamed I'd love a short, one kidneyed, webbed toes little man with all of my heart and someday, when I do pass I will leave my organs behind and I encourage you to too. Because, some day in 4 years or 14 it could be your loved one dying for the gift of life.



 

Wednesday, July 3, 2013

You tell me, life will not be pain free....



*Warning: This post starts out whiny. So, beware. This 28 year old woman is about to throw a small tantrum...

For the first time in awhile I felt fearful. I was really hoping for a break. For all of the chaos to stop and things to just be "normal" for awhile. I've been told it gets easier, that things slow down in this special needs, medically complex world but so far I've seen none of the sort. When we got Case's CAT scan results Monday, I saw real concern on the surgeon 's face. It is a face I will not forget and is burned in my brain with the other faces of fear and sorrow from his previous Dr.s. You see, in this world you learn that Dr.s don't always have answers and their hearts are as big as their brains. They really care for my boy and are doing everything in their power to help him, to make him better but their power only reaches so far. It's when things get tough that I hear God the loudest...He doesn't promise painlessness or perfection but perfect peace, all I have to do is trust...Sounds easy? It's not. It's then that I remember I've been given a big job. I'm lucky to be Case's mom and can't begin to imagine my life without him. He is more than a son, he's a hero. He saved me from the comfortable world I used to live in...Case has pushed me to the edge of normalcy and beyond. So, as I wait, constantly reminding myself to trust Him with all my heart in the rain and in the storm, I am thankful. Thankful for growth, thankful for truth, thankful for the angel we call Case.


"Come and save me
You're the only source of all the peace I need
Come and save me

You tell me life will not be pain free
What will be will always be in your control
Darkness is light to you
And all you ask me to do
Is trust what you say is true

You are stronger"


*Case had a CT scan Monday, July 1st, 2013 that revealed a Craniosyntosis. He will have surgery requiring his scull being cut apart and put back together piece by piece. 






Thursday, June 27, 2013

"Oh God, I'm holding on to you."


"Well I tried to be everything I need
But a broken heart was all that I achieved
Still I don't understand
Why it's taken me so long to know You never change
Your love remains
Oh God I'm holding onto you"

When nothing stays the same. When tomorrow is always different than I've planed, I'm holding on to you. Oh God, it's out of control. I never know what Case's Dr.s are going to say or what his insurance is going to deny next but I know you are near. You've picked me for a very special job and everyday I find myself needing to let go...remembering that You know better than me. I never could have planed all this. I never would have planned all this but it's because I never knew how full my heart would be once I became this mommy you've called (more like drug me) to be. I  am thankful. I am humble. I will fail more than I succeed. To You be all the glory. Without you, I'd be nothing. Thank You for being by my side for every diagnosis, every tear, every failure, every headache and every blessing. Because, without the rain there would be no rainbow. Thank you Lord for the Very Special family we have become. 

Tuesday, June 11, 2013

It's just, well...what I do.

It's just..well..what I do. 

When I go to the dentist or to my Dr. I naturally get asked what I do. I tell them I stay home with four kids, one has special needs. The next question is, "What all is wrong with him?" I don't usually have all day so I give them he short list...the really short list. I usually get blank stares and "I'm sorrys". It's those moments that reality slaps me in the face. That I remember that 2 1/2 year olds are usually starting to get independent. It's about this time that they sleep through the night and you can just put a diaper in your purse and leave the big, bulky bag at home. I remember that beach trips and outings were less trouble when the girls were 2 1/2. Less preparation...less work. I watch as my Dr looks concerned at me and says, "How do you do it?". I never know how to answer that. I don't have super powers. I've never been very patient and I'm grumpy on too little sleep. I just do it...really. I find inner strength that I didn't know I had. I trust. With all of my heart, I trust that Case is Case and God made him special for a very special reason. I take what was handed to me and decide to let it make me better not bitter. I succeed and I fail. I laugh and I cry. I take the blessings as they come, whether it be a meal from a friend or and presents from a stranger. I'm humble and forgive myself when pride takes over...I just go and hope that at the end I will make my children proud. I don't know if things will ever get easier. I don't know if Case will ever stop needing his tube or surgeries or if Pittsburgh trips will slow down but I hope, like the 2 1/2 years previous I will always find strength on this journey....As for my new Dr. that listened so intently to Case's ailments and the story of how we thought we'd lose him...He looked at me at the end of my visit and said, "I'm not a pastor and I'm not a priest but I believe with my whole heart that children like yours are given to mothers like you for a very special reason. At the end of the day you wouldn't change him because he is a blessing." He's right and it doesn't take a pastor or a priest to figure out that different isn't defective, different is beautiful...

Monday, June 3, 2013

"I promise it will be worth it".


With the birth of a medically complex, disabled, special needs child comes an extra does of love. Not for that child (you love him as much as your other children) but FROM that child. From deep inside his soul.  Love covers you. Love gives you the strength to fight the long fight and year, after year, love stays. You feel love for the homeless-looking man that stops to admire your special gift. You feel love for the countless Dr.s, specialists, therapists and nurses that save and enhance your special child's life. You love the children that lost their battles and the momma's that morn their loss. You love the children in the mist of their battles.You love those you never met that love, encourage and support you on this rocky road. You're in a whole new world. A world that use to terrify you. You continually remind yourself that worry and frustration kill, steal and destroy but love covers a multitude of sins. You will be wronged. Lied to. Sinned against. Not everyone will love your child as much as those who advocate for him. Most won't understand that with the first "second level" sonogram your life changed (for the harder and the better). You got news that shook your entire being...You then had to fight for the sick baby in your belly and pray he defeats the odds. When he was born you become more than a mom. You become a nurse, a fighter, an advocate, a pusher, a Dr., a cheerleader, a secretary and more. When you feel like you're crumbling, like God mistook you for a stronger woman that love envelopes you and gives you strength for the journey. He never promised it would be easy, He promised it would be worth it....