Pure Genius

Okay, just so you know I am in no way regarded as a genius... I know that may come as a shock.  

But let's be honest the true measure of intelligence is really whether the knowledge you have matches the need before you.  You can have a million degrees in medicine or aerodynamics but if your power goes out it's the electrician that becomes the most intelligent person in the room.  And if your car engine dies it's the mechanic in the scientific researcher's parking lot that is the genius.

My point is this, odds are that at sometime in our lives our area of expertise will match up with the immediate need in front of us... and in that moment we will have our opportunity to shine.  

So let me just say that what I am about to tell you is... Pure Genius!!  I know, it may seem a bit extreme to give my words such high regards but I think you will agree that my moment to shine proved to be a success.

My Shining Moment

Well, let me just say that five kids can create messes like you can't even imagine and this mama could go insane trying to keep up with the ongoing clutter.  So I came up with a scheme that was.... yep, PURE GENIUS!

Everyone in our home has chores and jurisdictions that must be attended to daily (yes, I am a Duggar fan). However, there are some days when those efforts just aren't enough. These were the days when I found myself turning into the relentless nagging mama that continuously chanted, "pick up this, pick up that!"  Not only was it annoying to them but it was also extremely exhausting for me.

The Game

Okay so here it is, the genius part... I created "Pick-Up Points".  I know it doesn't sound like much yet but hang on, let me explain. 

On random days (the ones where I want to pull my hair out from the piles of clutter) I declare, Pick-Up Point Time and all of the kids come running.  Seriously, they literally come running.  I then proceed to set a timer (the length of time depends on the depth of the mess) each child begins to run in every direction picking up anything and everything they can find and putting it all away.  I even hear them sometimes argue over who gets to pick up what.  

Genius..... right!  Now, I would love for you to believe that my kids are just so wonderful that they would clean up that easily with no outside reward however, I have my integrity to think of so I will be honest.

The Motivation

Points are given for each item they pick up AND put away, I stay close by to monitor this process.  There are also times when the game is not being played that I will offer a set number of points in exchange for them helping outside their jurisdiction or just for volunteering to do something without expecting a reward.  The kids collect the points which, can be used to purchase items at the store.  They can choose to use the points right away or let them add up so they can buy larger items.  

Participation in the game is voluntary and the kids still have their regular chores which, are set aside just to teach responsibility.  However, it only takes one shopping trip to motivate the non-shoppers for the next game.  Our current Pick-Up point exchange rate is 1 point = 1 penny (there young and it works).   Keeping the point value low motivates them to pick up more items (that's where the scheme definition comes from). There is also the added benefit of their competitive nature, I guess I get the blame for that genetic hand-me-down.

Regardless of why it works... it works!  In a matter of minutes my house goes from chaos and clutter to neat and orderly.  And this mama sits back and smiles... much nicer than the previous nagging mama... so it's a win-win for all.

This little game has revolutionized my life and given me back some of my lost sanity, well I like to believe that at least.  I don't know how long this will continue to work so for now I will just marvel in its wonder and enjoy the moment when for a fleeting instance I was a Genius!

1 Peter 4:10 Each of you should use whatever gift you have received to serve others, as faithful stewards of God's grace in its various forms.

Feeding Cohen: How To Setup a Kangaroo Joey Feeding Pump

Our littlest bullfrog doesn't do things conventionally... so why should eating be any different.  For the past nine months he has required enteral feedings to survive.  He had a NG tube placed last September but was later switched to a gastronomy tube (G-tube) because he can't eat food and refuses to take in his formula orally.  Our little guy is on continuous feeds for 22 hours a day, which requires us to refill his formula every four hours around the clock.  

The idea that your child needs external resources to thrive is difficult to digest and can be very stressful at first.  We were just kind of thrust into this new life and given very little instruction on how to navigate through it.  Although, I was given a brief lesson on how to run our pump during our discharge, my sleep deprived overwhelmed mind was less than focused. So when an IV pole (which required setup) and a bag full of supplies finally arrived at my door at 11:00 at night I was feeling slightly defeated to say the least!    

I have created a video, which explains the basic steps of setting up an enteral feed.  I hope this information will become a resource for others that are trying to feel their way through this process.  

Just remember you are not alone and things will get easier as you become acclimated to this new way of feeding your little one. 

1 Peter 5:7 Casting all your anxieties on him, because he cares for you.

Life With An NG Tube

I wonder what I would say to her....

I wonder what I would say to the woman I was a year ago... that exhausted woman that sat at the bedside of a sleeping, sick little boy covered in bruises from unsuccessful attempts to hydrate him. Discouraged, feeling helpless and unsure of what was happening to her perfect baby, wondering why she couldn't make him better, why she couldn't feed him, and unaware of just how sick he was.

Where would I even begin when trying to explain the course of the year that awaited her or the fight she had coming.  She was so naive to the coming events of countless doctor appointments and hospital stays that spanned across four states.  She had no idea that her precious baby would endure 50 IV sticks, 3 surgeries, countless (literally) countless blood draws & x-rays, as well as 11 hospital stays in four different hospitals before he would turn 19 months old.

The woman in that hospital room that night had no idea that she was about to be thrust into overcoming her insecurities... to be the one that would find her sons disease and then confidently present it to his unfamiliar healthcare providers.

She had no idea that soon she would learn how to run equipment that she had never even heard of up until this point in her life.

She had no idea how many times she was about to watch her child look at her through fear filled eyes, desperately urging her to rescue him from the tubes, needles, and procedures that he had to undergo.

She had no idea that her secret urge from years ago of wanting to be a nurse was about to become a reality in a way that she had never envisioned.  Or that she would be taking on that role for one of her greatest joys.


So what would I tell her...

I would start with... Your faith is about be tested so hold tight to what you know. Trust in the one you have given your life to.... the same one that you dedicated your son too.  You are about to experience some the most difficult days of your life but you will weather the storms, not because you have obtained super strength but because you trust in one that does.  You are about to experience love in the truest form from your family and friends and to see why God placed these people in your life.  You are about to understand the real reason God created an earthly church and filled with people that lift each other up when their strength is depleted.  Take heart because although you are about to face many struggles, you will also experience great blessings, so embrace them when the come and use them to propel you through the difficult times.

      ~~~~~~~~~~~~~~~~~~~~~~
I believe that if that same woman could have peered into the future she would have had a few words for the me that I have become.  I think she would tell me that she is proud of me. Proud of how I stood up for my sweet baby. Proud of how I listened to my instincts when everything around me suggested otherwise.  Proud of how I learned to overcome my insecurities and speak up when Cohen desperately needed me too.

You won't hear me say this very often... but I am proud of me as well.  I'm  a constant work in progress and I'll be the first to admit that I am far from perfect but for just one moment I am going to hold my head high in accomplishment... and be thankful for my successes thus far.

The truth is we all share one commonality... one absolute for all of us....   At one point or another we are all guaranteed to experience pain.  And although it may not look the same for each of us and will certainly affect us each differently, you can rest assure we will all be changed... either for the better... or the worse.  So I will make a choice... I will allow my pain to have purpose.... choosing to bring meaning to the struggles that I have hurdled.... allowing what was intended for evil to be used for good.

My hope is that you will allow  our pain to receive its purpose through the way it impacts your hearts.  Our family does not live in sorrow or sadness but we celebrate everyday as a new beginning filled with hope and promises from our God.  We will continue to face the trials of this life, not as loners lost in confusion but as children sheltered in the arms of loving Father.


I pray that the strength that resides in our little superhero will permeate into the lives of all who hear his story, allowing our Pain to be transformed into Purpose.














Isaiah 40:28-29  "Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak"

Living In A FPIES Fog

FPIES-Our beginging

Our Little Puzzle

The Definition of Blessed

Fourteen years ago I walked down an isle that was surrounded by almost 400 people.  I can't even begin to explain the feelings that where building up inside of me but the closer I got to the man that I would soon call my husband, the more peace I could feel come over me.  I kept my eyes on him the whole time aching to finally be standing beside him and to feel the comfort that would come from being in his presence.  As he reached out for my hands and looked into my eyes, the rest of the world disappeared and suddenly nothing else mattered.   I had no idea that the feelings that I was experiencing in the moment would be repeated throughout the rest of my life and that I would come to count on that peace so deeply.

We have come along way since that day in April, and together we have endured many trials and struggles.  I often feel like I did that day when I was walking down that isle... it is still in his presence that I long to be when I feel the pressure of the world on me.  It is in his eyes that I find the courage to keep going and in his touch that I find the peace to over come my struggles.  And still he somehow makes the world disappear when I need him to.

When I was younger God made a covenant with me, he promised to provide me with a source of earthly protection, one to hold me in times of need and lift me up in times of weakness.  Fourteen years ago He fulfilled that promise.... and on that day I felt God hold me in His arms through the earthly arms of my husband.  

This life is full of hardships but God promises that if we are faithful and remain close to Him then He will provide us with all that we need to endure these struggles.  Recently, I was asked to write a letter to a dear friend, giving her advice on her wedding day.   These words that I wrote were from my heart and were born out of the trenches of a marriage that not only survived difficulties but thrived through them year after year.

"The definition of your marriage will be created by the bond you form from battling through the struggles of everyday life. You will learn to appreciate your spouse for the great source of strength that they will provide for you. Together you will face many challenges, some bigger than you think you can bear. It is in those moments that you will learn the real value of this gift that God has given you and the true depth of your love for each other. 

However, even a love this deep will never be able to shelter you from the storms of this world. But if you seek comfort in each other arms you will not only weather these trials but grow stronger because of them. You must rely fully on God and on his protection over the commitment that you are making to each other today. 

Your marriage has a purpose and a plan designed by a God that loves you intimately. Trust Him for direction and you will be blessed beyond measure."

Together, Todd and I have gone to God seeking strength when ours wasn't enough, together we have prayed for comfort when we had none to give, and when neither of us had the clarity needed to lead, together we sought guidance from God for His direction.

What is our secret for having a great marriage?  God!  He is what continues to bring us back together when the world tries to pull us apart.  This marriage is not made up of two people.... but of two people and their God.  We are the true definition of blessed, not because of what we have been given but because we have an intimate relationship with the GIVER.  

Everyone deserves to know this kind of love!

Happy Anniversary Honey, 

because of you I am a BETTER me.  

Thank you for loving me the way I deserve to be loved.  We are so proud of you and how hard you work for our little family.

More of our love story...So His Horse Wasn't White

Our Little Puzzle: Cohen Update

Have you ever spent countless hours working on a puzzle only to find out as you neared the end there were valuable pieces missing?  Sections come together but without these key pieces the image is lost... and so the frustration sets in as you frantically search for those clues necessary for revealing the BIG picture.  Now hold that thought!

Meet our little puzzle....

And quite the complicated one I might add, but with every new appointment we learn more and more about our little superhero.  Our doctors are doing their best to help bring as much clarity as possible to our situation.

One of the most difficult things I have heard thus far is....."We may never know why."  I am a person who likes to research and find answers to problems and it is hard to except that sometimes there just aren't any.

I spend countless hours pouring over my sons's medical records, lab reports and searching for information on the computer, it is my job to keep looking!  When you are dealing with something rare and undereaserched you become the expert for your child!  I have learned some valuable lessons along this journey...

~Even with well-intended physicians you may not receive the best advice, in fact in our case it was quite dangerous.

~Although I don't posses a medical degree I am the expert on my child's illness, not discounting the valuable knowledge of medical professionals but every doctor can't be an expert on every illness.... so we searched for ones experienced with our disease.

~I must always listen to my instincts.... going against incorrect medical advice is not only acceptable but my responsibility.

~People aren't perfect and there are no exceptions in medicine, so I must be prepared for mistakes and have the courage to confront those making them (despite all that was written in Cohen's chart about NO FOOD and the allergy alert bracelet on his leg stating FOOD....they still tried to feed him).

~I have the most amazing support system of friends and family and I don't know where I would be without their love and generosity.

~God's grace is ALWAYS sufficient and will see me through!!

Our Newly Discovered Puzzle Pieces
We met with our new GI, Dr. Putnam at Cincinnati's Children Hospital and I found myself hearing some familiar words.  Much of what he said confirmed what our allergist at Johns Hopkins had stated, but he went a step further.  He was very honest in his explanation.  He discussed with us what is known about FPIES, there is far more that they don't know and may never know, and that they have theories that desperately need research.

Here is the break down on what he believes is going on with OUR superhero:

• Cohen is a severe reactor and we may never know why he reacts to so many foods.

• Refereed to him as a severe hypersensitive immune responder: 

So in other words... When we get sick our bodies respond by creating antibodies so that it will recognize the illness the next time and be able to fight it off easier (pretty awesome handy work God).  For some reason Cohen's immune system responds to food the same way and according to our GI the more we feed him the sicker we are making him.

• Dr. Putnam's theory:  Stop all food trials for as long as we can in an attempt to reset Cohen's immune system and hopefully reintroduce foods later without reactions.  There are no guarantees but we have nothing to loose.  He was very passionate about educating people that children like Cohen only get sicker the more we try to force food on them, which only supports why he is so resistant to eating food. To Cohen FOOD = Pain

• Then we asked the burning question: Are we dealing with an extremely severe case of FPIES or is there more going on?  His response was, "Yes, that is our big question and we will try to figure out more but unfortunately, we may never have all of the answers."

Where Does This Leave Us Now?  
It was determined that Cohen urgently needed a G-tube placed because of his increased risk of aspiration as well as other concerns.  After the surgery we were admitted into the hospital and began the daunting task of gradually increasing formula feed rates and concentrations.  Cohen didn't tolerate the faster rate at first and began to loose weight.  We finally managed to increase both and stop the weight loss, however we never regained any.  Since home he has lost a little more and is weighed weekly by his pediatrician and monitored for belly distention.  Our little man has also been having more issues with blood and mucus stools, which only leaves us with more unresolved questions.

In our FPIES world we are usually left with many uncertainties, filtering through symptoms as best we can.  This is very difficult for the type A in me (yes, I have a slight obsessive compulsive side.... there you go honey I admitted it).  I like concrete answers, written in black and white.... this living in grey is a struggle for me.

So I have learned to triage....deal with what needs attending to at that moment and not dwell on the unknowns of this illness.  I am a work in progress, learning to turn things over and worry less...

God, grant me the serenity
To accept the things I cannot change,
Courage to change the things I can,
and wisdom to know the difference.

We will continue to fight and advocate for our little superhero and diligently work to keep him thriving.  Life isn't easy but it isn't suppose to be.  Our situation makes us far more sensitive to others and what they are dealing with.  My older children look at life differently because of the strength that they see in their little brother.... what a beautiful reminder for all of us that true joy doesn't come from this world!!!

Endurance

A long time ago I began to pray for endurance.  Why?

I am a runner by nature... believe it or not in my not so distant past (okay you may not want to believe that part) I actually had a track scholarship to Marshall University.  So I identify all to well with the training and work ethic needed to compete at that level.  You can't get very far if you don't train, train, and.... yep you guessed it, train some more.

Racing is only fun if you can compete with the crowd around you.... however, the training process to achieve that goal is grueling and less than desirable!  I learned quickly that without those long days of pushing myself hard, past the point of where I thought I could go.... I would never reach my goal.

If you are familiar with training you know that it isn't pleasant, it hurts, and it often feels like punishment.  So how do you convince yourself to do it day after day?  Well, you must overcome your first and most difficult obstacle.... Your Mind!!!    Believing in your ability to achieve your goal will determine whether you reach your goal.

Not only does your body need to be conditioned but more importantly your mind does as well.  I use to have a saying with my personal training clients (I told you running was a large part of my past), "Mind over matter... if you don't mind, it won't matter!" Imagine getting to hear that first thing in the morning from a peppy little trainer running beside you!   

What does all of this have to do with praying for endurance?

en·dur·ance ~ 

noun

    1.  the fact or power of enduring an unpleasant or difficult process or situation without giving way.

One day while I was praying with a friend I prayed for endurance, something I did regularly in my private prayer time.  When we finished she looked confused and questioned me, "Why did you pray for endurance?"  She said that she had never thought about praying for endurance and wondered what prompted me to do so.  

I told her that I see my life in comparison to running a race.... this life is like a marathon for me (which is a big deal when your a sprinter by nature).  I was great with the quick short distances but it's those long ones that have always taken a toll on me. If you have ever experienced long distance runs you know that there is moment when you hit a proverbial wall... or should I say it HITS YOU!!  

It's the point where you want to give up and sercome to the pain that has been slowly taking over your body. Endurance gives you the strength to push through and reach the goal set before you, however, you can't obtain it without hard work.

So how do you train your mind for your race and gain the confidence to believe in the ability to reach your finish line.... by growing stronger spiritually.  If we want endurance in our journeys we must pursue it with persistence.  Spending time daily with God allows Him to fortify us with the ability to keep running when everything in us says, "I can't take anymore!"  

I will hit many "walls" in my life and unfortunately my little, "Mind of matter matter" phrase won't be enough to get me to the other side of my struggles.  So I will continue to request the gift of endurance from the only one that can provide it for me.

I have been on some very long journeys lately, but God's provision of endurance has kept me 
in the race.  My eyes are fixed on the goal before me and I will persevere until I cross the finish line.

1 Corinthians 9:24-27

 In a race all the runners run. But only one gets the prize. You know that, don’t you? So run in a way that will get you the prize.  All who take part in the games train hard. They do it to get a crown that will not last. But we do it to get a crown that will last forever.

So I do not run like someone who doesn't run toward the finish line. I do not fight like a boxer who hits nothing but air. No, I train my body and bring it under control. Then after I have preached to others, I myself will not break the rules and fail to win the prize.

Rumor has it....

There's a rumor that has been passed along for years, it's been circulating for so long it's origin is unclear.  And although it can't be found in the Bible it is quoted frequently along side of scripture......

"God never gives you more than you can handle."

Okay let's be honest most of us are not only guilty of saying it at least once in our lives but also resting in it's false security. Only recently has it come to my attention (through a powerful message on faith) that this wonderful feel good thought is nothing more than a MYTH.  But hold on and hear me out because there is hope....

2 Corinthians 4:8-9 ~ 8 We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed."

Although, it is well intended to use this sediment to comfort someone going through a difficult phase in their life, it is absolutely false and misleading.  The Bible is full of people who had far more than they could handle (checkout Hebrew 11 for a nice recap).  These men and women not only survived their trials but thrived and all of them shared one common thread....they all had unshakable, never wavering, undeniable.... FAITH!  Faith not in themselves, or their own abilities but in their Creator... the one that can really handle the circumstances we face.   But first things first.... we need to just start at the basics, we must commit ourselves to the giver of Life so that we may receive His immeasurable source of strength.

Hebrews 6 And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.

Faith! It's the key that unlocks the door to our greatest resource which will enable God's strength to penetrate our lives.  God not only wants to be with us in ALL of the circumstances, but he wants to carry us through our darkest ones... baring the load and comforting our souls.   Our God's shoulders are bigger and stronger...

II Corinthians 3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

Pastor Marc Sundstorm teaches us in his message "By Faith" that: "You can always endure a little more than you think you can, but you will never have more than you and God can’t handle together.  There is nothing we can’t endure through faith but we must look to the future by fixing our eyes on Jesus, because what is seen is temporary but what is unseen is eternal."  He goes on to remind us that, "When things are good we rely on ourselves but when things are hard we rely on God."

Trials are not meant to destroy us! In fact it is quite the opposite, these times are opportunities for us to strengthen our faith and prove to the world that we live what we believe . Our experiences equip us to help others and point them back to the Father.

James 1:12 "Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him."

So it's time to put our faith into action and debunk the rumor.  You will never again hear me utter the words...

"God will never give you more than you can handle."

Instead I will share the truth...  

God will never give you more than HE can handle.

Click here to listen to the Holy Spirit clear up this age old rumor through Pastor Marc's powerful message.

The Lord is My Strength Psalm 28:6-8 "Blessed be the LORD, Because He has heard the voice of my supplication. The LORD is my strength and my shield; My heart trusts in Him, and I am helped; Therefore my heart exults, And with my song I shall thank Him. The LORD is their strength, And He is a saving defense to His anointed.…"