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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