Saturday, December 19, 2015

And So You Climb.

Often people will say to me, "I couldn't do what your doing." Or, "I can't even imagine."

The truth is we all have something in our lives that is difficult, something someone else would look at and say, "I don't know how they do it." 

Each obstacle in our lives are opportunities for us to stretch ourselves farther than we imagined possible, showing ourselves what we are really capable of accomplishing.

I think I found a way to illustrate what I mean. Have you ever been hiking?

Or perhaps mountain climbing?

Standing at the foot of a mountain is intimidating to say the least. Imagine yourself staring up at this infinte peek  feeling fear and anxiety swirl through your mind. You know the first step will be the hardest and struggle with coaxing yourself to do this insurmountable task.

There is no other away around it and so you do the unthinkable and begin the impossible.

Each movement in the beginning is painstaking and rigorous  You calculate each move with precision and thoughtfulness. 

Every new step is harder then the last and inside your mind race thoughts of all that can go wrong. These plaguing demons taunt you with ideas of retreat... but something deep within you keeps you going.

For inside of you lies a strength that has never been tapped into, and before this moment you didn't know it even existed.

Each new step reminds you of where you were and how much easier it was to stand on the solid ground that you left behind.

But somewhere in the climb a change occurs, calculated moves become mindless extensions of your body. Although, the fears and doubts still rest in the back of your mind they are now overshadowed by the determination that carries you up.

Your body seems to know what to do without guidance and movements that once seemed impossible for you to make, become natural motions.

Finally, before you know it you are standing at the top, breathing in the accomplishment of your great feat.

But suddenly you realize that your celebration is short lived, for in your vision now sits the next mountain that awaits you... taunting you once again with insecurities.

Again, you find yourself consumed with self doubt and uncertainty. How can you climb THIS mountain when your muscles still ache from the last?

You know that only one direction exists... so upward you go with same trepidation that weighed you down on your very first step.

As you painfully battle your way to the top once again you gain new confidence in yourself and what your body can actually endure.

But in the light of this new peek, as you relish in your success of conquering the rocks below, your vision begins to clear and a familiar sight comes into view once again...

And so you climb.

We all have mountains in our lives... if we don't presently,we will before long. Instinctively we cling to the safety of the solid soil beneath our feet but staying idol on the ground will only inhibit us from experiencing the breath taking views above.

Choosing to climb means we choose to feel the pain of the journey; but by making that choice we have chosen the ultimate reward, the beauty of the peek.. and it is so very worth it!

I will continue to climb every mountain that is laid out before me, until the day when I find that I have climbed my way to the majestic gates of Heaven.

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Thursday, December 17, 2015

The Undiagnosed: Cohen's Update

Timehop can be a wonderful thing... most of the time. I often find so much joy in looking over past pictures and memories... but every once in a while one stops me in my tracks and I find myself face to face with reminders of the difficult times in our journey.  

Today was one of those days...

When I read over the post from two years ago I was filled with so much emotion. 

I was in awe over how eerily correct some of Dr. Wood's predictions were (I had forgotten about most of them), but I also felt equally mad about the ones that did not come true... the ones I hung my hopes on.  

As much as I hate to admit it, there have been many times along this path when the wind has been sucked out of our sails.

This past entry reminded me of the hope that I had put into those steps of the journey, only to be left with the crushing feeling of our new reality. Johns Hopkins and the great Dr. Wood were simply one of many stepping stones on our way to healing, but even in knowing that, the sting still lingers. 

However, I am glad that I didn't know what the past two years would hold for Cohen; I'm afraid I would have focused on the fears and struggles and missed out on the joys that were hidden in between. 

Now we are at a new place yet again.... and I can't help but feel very disconnected from our old world of FPIES, a world that two years ago I clung to. Sadly, because of where we are in this journey I feel that I can no longer identify with the majority of that community. 

I realized some time ago that our story is not a typical progression for most kiddos with FPIES and our presences in that world only creates fear for those that are dealing with ONLY that condition... unlike us.

It was also very difficult to watch the world that was suppose to be ours, pass us by. We were suppose to progress like others and outgrow this like others... but our time never came. And instead we began to take steps backwards and in directions I never new existed. It pains me to admit that I had begun to grow a little bitter. Soon it became painfully obvious that we were dealing with more than the diagnosis we had been originally given.

So at this point I don't know where we fit in and to be honest it's a struggle some days to keep from feeling isolated and alone. 

Being medically fragile, with an unknown diagnosis, is like living between worlds. We don't have the support of any group or the comfort and camaraderie that comes along with diagnosable illness communities. 

And our tubes and lines make it blatantly obvious to the "well" world that we are not one them either.

We often stand alone, left to simply wonder about prognosis and question every decision we make because we have no literature to guide us, or support group to validate us. 

Our recent trip to Cincinnati left us with yet again more questions than answers. 

Because Cohen's constellation of symptoms don't fit into any, one single, diagnosis we are left crossing over into many areas of grey. One of our lead doctors believes that we are dealing with something so rare that it has yet to be identified. Another thinks that what we could be seeing is an inflammatory response to EVERYTHING that enters his little body. At this point we are left with only theories and not concrete conclusions.

The painful truth is Cohen's doctors just don't know why he is the way he is... 

So we wait..... for more test results, some of which may take up to a year to get back and with that there are still no guarantees for a diagnosis. 

Life in the undiagnosed world is difficult and scary. We don't know the real monster we are fighting and because of that, this battle is unfair; leaving us with only Whats? and Whys?

But that doesn't change our stance on Hope nor will our faith be shaken. Once again will be still and quietly wait for His guidance and be grateful for the doctors that God has put in our path. 

This past week one of our physicians told me words that helped heal my heart just a little, he said... "I can't even imagine how difficult and frustrating this is for you as parents. I wish I could give you better answers right now. But I want you to know I will not give up, I promise."

We believed then.... We believe now and We will forever continue to BELIEVE!

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Thursday, December 3, 2015

What do you Hope for?

Have you ever had a hard time trying to determine which way was UP or DoWn... or <--- left and right--->? If you have ever felt lost in the DARK, trying to blindly feel your way out, you may understand where I'm coming from.

I have learned the hard way that every question doesn't necessarily have an answer. And that there are more colors than just  black and white.

In a world were your child's illness presents more questions than answers you  no longer know what exactly to hope for anymore.

When you're the parent of an undiagnosed child you may find yourself feeling as though someone handed you a menu of possible illness  and said,
"Please review the list of diagnosis and choose one to your liking." 

After quickly noticing a less aggressive, easily treatable one, you eagerly make your decision, only to find out there are no guarantees that you will get what you selected.

And so you find yourself fearfully waiting for an answer and questioning...
"How long will it take for them to return with a verdict and which one will it be?

Perhaps they will never return at all and you will be left wondering, 
"Where do we go from here?"
 What do you hope for when you live in the topsy turvy world where testing that comes back negative is not necessarily good news AND extreme measures of treatments that WORK are bad signs of prognosis?

What do you hope for when your child's constellation of symptoms don't fit into any one category, leaving doctors no choice but to run tests after tests?  In the end you are only left with more inconclusive information and uncertainty about your child's health and future.

What do you hope for when there are no good choices to hope for? It's simple...

You hope for another chance at today.

You hope for days without pain or hospital stays.

You hope for another opportunity to laugh louder, hug longer, and love deeper.

You hope for moments filled with lots of smiles and amazing memories.

You hope for wisdom to make the best decisions for your child, with no regrets.

You hope for answers and the strength to handle them when they finally come, no matter what they may be.

You hope that no one else has to feel this way and that someday children will never have to endure such things. And you pray that pain from your story will somehow have purpose, helping someone else that feels the sting of this kind of journey.

But above all else... you simply keep hoping, because without HOPE you have nothing!

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Tuesday, October 27, 2015

Bennett's Light

My hands tremble and my heart aches as I write these words.

Sweet Bennett is now dancing with the angels.

We were so blessed to have been given the chance to live, if only briefly, in the presence of this amazing little girl. 

You didn't have to be around her long before you were awed by her intelligence and boldness.  The mere sound of her sweet little voice would captivate your attention. And that beautiful grin of hers was undeniably contagious... just take a peek at one of her pictures for proof.

A few weeks ago Katie Anne, Bennett and Diana came to the Ronald McDonald House to celebrate Cohen's birthday with us. It meant so much to us to have them come, especially since Bennett had not been back since she left for home last winter.

Katie Anne wasn't sure how Bennett would react to going back but when they pulled up to the house she told her mommy, 

                   "I'm not afraid at all."
Bennett helping Cohen open his presents.
 They weren't there long when Bennett noticed Cohen's backpack for his TPN. She tugged at me and said words that will echo in my heart forever. Although, they were very simple words... they represented so much.
 "I used to have a backpack like that... WHEN I was sick."
Katie Anne gave a chuckle and said, "Yeah, WHEN she was sick."

The beauty I found in that moment was that Bennett was no longer living in her illness. She no longer saw herself as sick anymore. 

What a blessing to know that in the eyes of this beautiful little girl her illness was a thing of the past and all she knew at that moment was joy. 

When they left Cincinnati her parents were forced to make an unimaginable decision.  

Their decision meant discontinuing extremely aggressive treatments and taking Bennett home to enjoy whatever time they had left with her. 

Doctors told them that they would most likely have only a few weeks to a few months left together... but God had a different plan.

At the time they had no idea if they were making the right decision for their daughter, what parent would, but that prayerful decision proved mightily to be the right one.

Their decision ended up allowing Bennett to be Bennett again. She got her spunk back and was able to live in a world free of hospitals and medical treatment again. They took trips together and spent hours playing, cherishing every moment they had together. And when she had a bad day... she was able to retreat to her own room with her own toys... She had her coveted independence back.

It was the faithfulness of her heartbroken parents that gave her those gifts.

December 13, 2011- October 26, 2015

Katie Anne and Billy are amazing parents, who have chosen to share the beautiful story of their little blue-eyed girl in hopes of helping others. 

And OH how Bennett's story has done that.. and so much more. The light that shined  from this little girl has brought joy to those who knew her, hope to those who hurt, and compassion to those who have never walked this kind of journey. 

Because of Katie Anne and Billy's unwavering faithfulness Bennett's light will continue to shine farther than anyone could have ever imagined. Lives have... and will continue to be touched by the legacy of this beautiful little girl.

Make no mistake about it, Bennett's light has not gone out, in fact it is shining even brighter now from it's position in heaven.

How can our aching hearts not be filled with joy when we imagine you dancing with the angels?  I can almost hear you speaking those sweet words again... "I'm not afraid at all."

Now is your time to dance sweet girl... your shining light will forever guide the rest of us towards home.

B is for Bennett

The Story of the Lamp

Bennett's CaringBridge Journal
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Monday, October 26, 2015


I  must confess, the words that follow were written from a place of deep brokenness.

But know that although my heart is heavy and my spirit broken, my faith will never waver. 

Recently, I have felt the tears of mothers that lost their children, I've hugged little ones about to loose a parent, and heard discouraging words from my own child's doctor.  Unfortunately, these are just a glimpse of the heartache that surrounds me right now. But although I am broken... I am not crushed.

"'For I know the plans I have for you,' declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

My heart has ached more in the past few weeks than it has in a lifetime. I vaguely remember the days when I didn't have to think about illnesses and children dying. I used to live in a world where those things were distant concerns that didn't impact my day to day, but today they plague my every thought. 

I hope you understand that my words are real and deep and come from the core of my soul... they are the voice of my brokenness.

And it is because I have witnessed true pain that I cannot remain silent.

I feel compelled to ask you the question that lies closest to my heart. How can we do any of this without God, without the realization that there is something more? 

I have seen God's mighty hand over me and my children, I have felt His presence during fearful moments and rested in His reassurance of a better tomorrow.

And though I have searched thoroughly, I have not been able to find any earthly resource that can offer me those things.

Yet, still I hear and see others who feel this faith is merely a weakness on my part... that there isn't really anyone out there listening to my prayers... that my faith is a crutch to get me through difficult times.

But let me ask you this... who has more at risk, the one who believes and is right... or the one who assumes there is nothing more, denying the ruler of the universe and choosing to  live only for this brief moment in time?

If I am wrong than I have lost nothing, but if I am right.... then I have gained eternal life.

My gain is True Life... not this painful earthly existence.

My gain... is a greater joy than can be found on this side of heaven.

My gain is an eternity filled with peace... no more fear or suffering.

My gain is a reunion with all those that already wear their crown of jewels... and a spirit that never experiences death. 

What do you loose if you search for the truth... listen to your heart and seek out a bigger purpose for your existence? 

You were created. You have a purpose. You were intended for so much more.

What you have been searching for your entire life... can't be found in any of the things this world has to offer. 

You will not find your peace until you find your maker. He waits for you and your pain... and He longs for your love.

"Come to Me, all who are weary and burden, and I will give you rest. "Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and YOU WILL FIND REST FOR YOUR SOULS. Mathew 11:28-29

It is through my brokenness that I am truly healed. It is because of my weakness that I can be strong. It is by His grace that I have purpose. And although I have felt great pain along our journey I have received unimaginable blessings each and everyday. 

My eyes have seen the wondrous gift of His love through the miracles that surround me daily.

Make no mistake about it, there is HOPE and his name is JESUS.

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Tuesday, September 8, 2015

Parker's Light

 It's amazing to me how something that never changes, nor moves can look so different at times.

At the Ronald McDonald House in Cincinnati there is this one little lamp perched high above the heads of those walking by below, peeking out of the same window day after day.

Yet, somehow every time it is turned on it looks dramatically different. Each glow of it's light represents a special little life, and for that reason alone it takes on an entirely different appearance with each click of its switch. In fact it goes much further than simply it's appearance, even the ownership over this lamp changes each time it is called to duty.

Those that know of this lamp understand all to well the powerful metamorphic change that takes place with each illumination of it's bulb. They understand that the job of this lamp exceeds the job of any other lamp, casting so much more than just light on those that view it. Now this lamp shines again but this time it is Parker's light.

When you live in a world of coexisting strangers going through difficult times a wonderfully amazing thing happens.... these perfect strangers become family.

Over a year ago Parker's family became our family.  Throughout this year we have shared a house with them, meals with them, laughs with them.... and now tears.

Parker's mama, Amber, grew to be a dear friend of mine. When I needed an understanding ear, God would allow our paths to cross. Whether our visits took place on the way to the hospital cafeteria or an early morning coffee pot, our time together would always leave me feeling hopeful and encouraged. 

Amber has always been an inspiration to me and so many others, even now through her grief she continues to inspire so many people. 

God has great plans for Parker's light and the amazing family that has allowed it to shine so proudly for all of the world to see. Throughout their journey they have remained faithful to God, giving Him the glory every step of the way. 

And now even in their heartache, when it appears to the world that there is no glory to give, the Brown family holds tight to the hope that is in Jesus Christ by sharing His light through the life of their son.

Ryan and Amber, may we all live up to your example of faithfulness and help you shine Parker's Light on this world for years to come.

John Parker Brown
Parker dance with the angels sweet boy, free from pain... 
one day we will join you. 

We will forever be Team Parker!

For the story of  lamp follow the link This Little Light
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Monday, July 6, 2015

The Lie

As I sit here once again amid alarming machines and sterile walls I am compelled to tell the truth.... And the truth is I feel as though I am living a lie. Not one that I have told but one that is being imposed upon me by the well intention of others.

I am in a constant struggle with the fact the people think that I am something that I am most definitely NOT!

 "You are so strong." 

.... words spoken by kind hearts with the genuine purpose of supporting and encouraging me, but the truth is the more I hear them the more I feel as though I am living in a lie. 

So I want to set things straight and let everyone know...

My God is STRONG.
My child is STRONG.

But I am not strong, not at all, not even close. 

What I do has nothing to do with strength. 

I don't get out of bed in the morning because I have strength... but because I know someone is depending on me for their every need. 

I don't face appointments, procedures, or diagnoses with strength... I show up because my child's life depends on it.

On long hard days or when difficult news comes... strength is the last thing I am feeling.

Frequently, we are faced with hard decisions regarding our child's treatment plan, often given no real choices... forcing us to decided between paths of lesser evils. These are moments when my weaknesses are revealed and I am sustained only by the strength of my faith.

There are times when testing leaves us with no ideal outcomes to hope for... only new sets of fears and uncertainties.

I do all of this not because I have strength... but because I still have AIR left in my lungs. 

If what I did each day depended on strength I would fall short daily... there just isn't that much strength this side of heaven.

So please don't confuse what you are seeing as strength, the truth is what you are really witnessing is the depths of a parent's LOVE for their child.

There is place in our hearts that we are suddenly aware of the moment we first hold our child.

An extraordinary love is formed in the deep reservoirs of our hearts and is awakened within us the moment we learn of their illness.

I don't know where our journey will take us but as long as I have breath in me I will fight for my child.

And thankfully that doesn't take strength, just LOVE, for which there is certainly no shortage.

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Tuesday, June 30, 2015

Dear June 30, 2015,

Although you are completely unaware of it, you were 12 years in the making, our goal date and the passing of one journey into the next.

Today is the day that we have fixed our eyes upon for years, watching, waiting, and sometimes feeling as though you would never come at all... and yet here you are!

12 years ago my wonderful husband came to me and said, "What would you say if I told you I thought God was calling me to be a doctor?"

Those words were the first steps in our long journey of faith... a journey that produced many struggles, storms and sacrifices... but the blessings always far out weighed them all. 

I realize that there may be those that question our use of the word, "called."  It requires a belief in a creator that is bigger than ourselves, a belief that something has the ability and the power to call us out of our own desires.

The Bible tells the history of many ordinary people like MosesDaniel and David who were called to do extraordinary things. Their lives serve as examples, reminding us of God's desire to use the unlikely to do the likely. Why? Because it allows the world to see that He is the one who is truly in control. 

Being "called" doesn't mean you are better or more loved than another person, only that you are willing to allow God to use you. When my husband surrendered his own will, trading his badge for a stethoscope, he walked away from 14 years of  hard work. He gave up his career, his comfort, and financial security in order to follow a call . 

Our calling is not unlike so many others where God has chosen to take an unqualified man and make him qualified. 

God's power has been more than evident throughout our journey. We cannot help be give Him the glory for our success, which was made possible only through the countless miracles He provided; like the knock at our door, the miracle at midnight, and the click of a mouse.

Every step of our journey has been taken only after praying, fasting and asking God to only open the doors that would lead us to His will. Although, our faith has been tested many times we have always focused our eyes on God, seeking His guidance and accepting His restoring peace

So welcome June 30, 2015, we've been waiting for you. Today we will walk out of this journey and into the next, excited to see what wonderful things God has in store for our little brood.

My prayer for our lives is that we will always serve as light into this world, revealing God's love for ALL of His children.

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Friday, June 26, 2015

In everything.....

"give thanks in all circumstances for this is God's will for you in Christ Jesus."
 ~1 Thessalonians 5:18

So today I am giving thanks..... not because I have so much joy in my life at this moment that I can't help but give thanks, but because I need that joy desperately right now.

I think we often make the mistake of thinking that praise comes from happiness and that joy comes from peacefulness.  The truth is.....
it's praising God that gives us our joy and peace.

Today I will give thanks to God,
not because my children deal with various  illnesses,
not because I enjoy nights filled with restlessness and fearful moments,

but because for this moment I am taking my sleep deprived eyes off of my little storm and looking up to the only one that can make darkness turn into light,
the only one that can create a  life were there was none.

Giving God thanks in everything allows me to not wallow in self pity or remain broken in my circumstances, it reminds me that life is full of beautiful things and that struggles are only temporary.

There is joy to be found in today no matter what our circumstances may be, and by looking up to give God thanks we are able to recognize those joys and find peace during a time when we need it the most. 

So today I will first give thanks... and then I will pray.

Thank you Lord.....

~ For my beautiful family
~ For the roof over my head
~ For the sun that shined today on a broken world
~ For the breath that fills my body
~ For another chance to be who you called me to be
~ For the chance to feel your loving presence in the midst of a storm

"give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1 Thes. 5:18
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Sunday, May 17, 2015

Water on Our Wood

Lately, we've kind of had a string of not-so-great news. To be honest, I started feeling a little defeated as Todd and I spoke about the results of Cohen's biopsies from his lung bronchoscopy. And then somewhere in our conversation my wonderful husband reminded me of an amazing and frequently overlooked Bible story.

His words fell over me like a blanket of comfort, lifting my spirits and changing my perspective.

Todd said, "Remember the prophet Elijah? This is just more water on our wood, honey. Let them soak it so all the world will see just how remarkable our God is when he lights our fire; leaving no doubt as to who is responsible for our miracle."

Later in the day Cohen started running a fever. Because he has a central line he must be admitted and treated for a possible line infection. And now we must sit in the hospital for three days, waiting to see if his cultures grow bacteria... just more water on our wood. 

The prophet Elijah had a BIG job to do and he did it in a BIG way. He devotedly demonstrated the amazing faithfulness of our God, and so will we.

So go ahead and soak our wood 
if it will allow God's 
blazing fire to be undeniably recognized by all!!

1 Kings 18:20-39
20 So Ahab sent word throughout all Israel and assembled the prophets on Mount Carmel. 21 Elijah went before the people and said, “How long will you waver between two opinions? If the Lord is God, follow him; but if Baal is God, follow him.”
But the people said nothing.
22 Then Elijah said to them, “I am the only one of the Lord’s prophets left, but Baal has four hundred and fifty prophets. 23 Get two bulls for us. Let Baal’s prophets choose one for themselves, and let them cut it into pieces and put it on the wood but not set fire to it. I will prepare the other bull and put it on the wood but not set fire to it. 24 Then you call on the name of your god, and I will call on the name of the Lord. The god who answers by fire—he is God.” Then they called on the name of Baal from morning till noon. “Baal, answer us!” they shouted. But there was no response; no one answered. And they danced around the altar they had made.
27 At noon Elijah began to taunt them. “Shout louder!” he said. “Surely he is a god! Perhaps he is deep in thought, or busy, or traveling. Maybe he is sleeping and must be awakened.” 28 So they shouted louder and slashed themselves with swords and spears, as was their custom, until their blood flowed. 29 Midday passed, and they continued their frantic prophesying until the time for the evening sacrifice. But there was no response, no one answered, no one paid attention.
30 Then Elijah said to all the people, “Come here to me.” They came to him, and he repaired the altar of the Lord, which had been torn down. 31 Elijah took twelve stones, one for each of the tribes descended from Jacob, to whom the word of the Lord had come, saying, “Your name shall be Israel.” 32 With the stones he built an altar in the name of the Lord, and he dug a trench around it large enough to hold two seahs[a] of seed. 33 He arranged the wood, cut the bull into pieces and laid it on the wood. Then he said to them, “Fill four large jars with water and pour it on the offering and on the wood.”
34 “Do it again,” he said, and they did it again.
“Do it a third time,” he ordered, and they did it the third time. 35 The water ran down around the altar and even filled the trench.
36 At the time of sacrifice, the prophet Elijah stepped forward and prayed:

Lord, the God of Abraham, Isaac and Israel, let it be known today that you are God in Israel and that I am your servant and have done all these things at your command. 37 Answer me, Lord, answer me, so these people will know that you, Lord, are God, and that you are turning their hearts back again.”
38 Then the fire of the Lord fell and burned up the sacrifice, the wood, the stones and the soil, and also licked up the water in the trench.
39 When all the people saw this, they fell prostrate and cried, “The Lord—he is God! The Lord—he is God!”                                                    
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