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

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.

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 Moses, Daniel 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.

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

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!”                                                    

Here I am Lord: Cohen's Update

During the past few days I have replayed the events of last Friday's meeting with Cohen's doctor over and over again. Asking myself, "How did we get here?", pouring my thoughts over every question and answer.

Although I have struggled with sharing the details of this portion of Cohen's story, I am passionate about allowing others to see the work that God is going to do in him; ensuring that He receives all of the glory when Cohen's day of healing finally arrives.

Earlier today I watched Cohen's FPIES awareness video, reflecting on the path that we have traveled.  I found myself longing for that season of our journey back, a place that I would have never imagined desiring to be again and yet I would give anything to be there now. 

Last week while Cohen was in surgery we met with several of his caregivers but the most important meeting was with his GI doctor, who leads Cohen's care team. 

As he walked into the room I watched his every expression, trying to prepare myself for the words that I had been anxiously waiting to hear for several weeks. His demeanor made it obvious as to where the tone of this conversation was heading. I knew right away that whatever he was was about to tell us would change the course of our family.

He paused for a moment before he began to speak. The results from the genetic tests we did several weeks ago while Cohen was inpatient were back... the ones that I had never given a second thought too.

He had prepared us for a long genetic journey of unanswered question after question, so I knew that these preliminary tests were just a starting point.

But He tested positive to one of them.... and now somewhere in his words my brain had to do a 180 degree turn in order to keep up. He  informed us that this genetic condition is not THEE condition that is shutting down our sweet little boy's digestive system.

We understand now that Cohen's FPIES reactions are only symptoms of something larger and unfortunately, Cohen's illness goes far beyond that diagnosis. 

No one expected Cohen to test positive to the very first genetic test. However, they feel that this genetic condition and his FPIES are possibly being activated by another genetic condition that we have yet to uncover. 

In the coming month we will be seeing a Geneticist, Immunologist, Rheumatologist, and a Mitochondrial Clinic to help point us in the right direction. 

The best case scenario would be for immunology to come back with identifiable abnormalities, which would give us something to treat. At least then we would have the possibility of doing a bone marrow transplant to reset his immune system. 

Prior to our meeting my biggest fear was a bone marrow transplant. I never dreamed that half way through our conversation with our doctor I would be almost begging him for the chance at having one. 

Unfortunately, if it is in fact genetic we can't do anything except try to stay ahead of pending problems, like organ failures and other complications that come with long term Total Parenteral Nutrition (TPN) use (which is how Cohen is now fed, totally bypassing his GI system altogether). 

Our GI feels like Cohen will probably never come off of TPN, which means he believes he will never eat, words that would have crushed my spirit if it wasn't for my belief that he will be healed.

We also questioned him further about the children he had previously mentioned to us (the ones that Cohen shares a similar illness progression with). I had once been so excited to hear him say that Cohen fit into a group of children which share similar symptoms, it had never occurred to me to be concerned about that group. 

Oh how quickly a moment in time can change your life. I watched my husband quickly switch into doctor mode, as he asked Cohen's doctor to be honest with us (and honest he was)...  he said of the five children, three have passed away (ages 3, 7, and 21) and he lost contact with the other two. This news proved to be the biggest emotional blow to my heart, it just wasn't something I was prepared to hear.

A few weeks ago this same doctor was fighting for his own life and God saved him, giving him the opportunity to now fight for my son's life. Not only do I believe in miracles but I also believe that God has already set into motion the plans to heal our little Superhero.

Our wonderful doctor has already discussed Cohen's case with several of his colleges that we will be meeting with; they believe that we will learn a lot in the next few months, helping us better understand this BEAST we are up against. And although, we are at a place that no parent every wants to be, we know that God is in control and that He will provide everything we need to get through this season of our life. 

The good news is that Cohen has gained over 4 and a half pounds since starting TPN and is a very happy little boy, no longer in pain daily. His central line placement last Friday went very well. He is now stronger than he has ever been, finally receiving the nutrition his  little body desperately needs. 

We will joyfully count these and every single wonderful blessings that comes our way along the path to Cohen's healing!

A few months ago I discovered a song that impacted me like no other has ever before and I couldn't sing it enough. I longed to be drawn closer to God as I recited those powerful words and now He has given me my chance. 

Well here I am Lord... where my trust is without borders, right where you have called me, where my faith will be made stronger in the presence of my Savior.

I believe with all my heart that one day Cohen will be healed!

15 Years Ago

15 years ago I walked through a door and down an isle, looked into his eyes and said I do.

So what was I saying I Do to...

* To years of unconditional love

* To days filled with "for better and worse"

* To fear followed by peace

* To knowing that I would never face the trials of this world without a loving shoulder to comfort me

* To unexplainable joy in the midst of struggles

* To days filled with beautiful chaos

* To a man that loves his family more than life itself and has dedicated his very existence to being the best husband and father anyone could ever hope for

                            .... That's what I Do means! 

And even in the tremendous bliss of that moment, on that day, I couldn't fully comprehend the vast capabilities of our love or how deeply I would come to depend on it.

I am so blessed to walk beside him through this life. Together we face the challenges of each day with hope and faith, strengthening each other against the relentless storms that pass our way. We know God has purposefully placed this family together for a greater purpose than we could imagine. Anxiously, we await His timing in revealing all that He has planned for the products of our extraordinary love.

Todd, you exemplify what the true measure of a man is for our sons and set the bar high for the future spouses of our daughters. 

I love you more than I ever dreamed possible. Thank you for being our everything.

Happy Anniversary Honey!

                  So His Horse Wasn't White