This Little Light

On the corner of a busy street sits a big house full of people seeking a lot more than just shelter. In the middle of that house there is a beautiful light. And although most never notice it in the midst of the grand fixtures of the beautiful atrium, it's there, hidden behind the glass of a high window.

I can't help but feel nervous every time my eyes wonder in that direction, praying that it's illumination is muted with darkness. Ironic, since typically it is our desire for lamps to provide light, however not this one, for the silence of it's darkness means hope. I often avoid looking for fear of what I might see and then one day it happened... 



The light in all it's splendor was aglow peering from behind the glass of the highest window. My heart sank and began to ache for the recipient of it's illumination, for because a light left this world this light now shines.

This beautiful fixture stays lit for 24 hours whenever a child of this "home" returns to their eternal home. 

You can't live here without knowing and falling in love with other families. We become each others biggest fans and cheerleaders, supporting each other in ways others can't. So when that light shines for one, it breaks the hearts of all.

The truth is I can't help but feel connected to this light in a very special way, for if it had been standing here many years ago.... then it would have been lit for my sweet little sister. It was just before this house of hope was built that she went to her eternal home, in the very same hospital that I now seek help for my little ones.  

I have often visualized this little light 
specially lit in her honor, in celebration of the beautiful light that she was to  those that loved her, just as it has been for so many other children of this home. 

Fight or Flight

Imagine a room full of smiling strangers all making over you and playing games and then suddenly holding you down against your will. Now, imagine that you're only two years old and through your tear soaked eyes you see the one person in the world that you love the most and cry out to them for help... only to have them aid in your immobilization. Out of desperation to break free from the pain that they are inflicting, your fight or flight kicks in but since these strangers have eliminated your ability for flight.... you fight with all of you have.

How do you convince a two year old to lie still while a well meaning medical team painfully inserts a tube past his stomach into his intestines? How do you convince him that he needs this to stay alive and that your not trying to hurt him but desperately trying to help him?

The answer is you don't, honestly, I don't even know if I fully understand it. How did we get to the point where it is necessary to inflict pain in order to help him? These things that Cohen must endure are for his well being and that is an emotionally difficult place to be as a parent. 

This month has been exhausting to say the least. My little ones have had more than their fair share of pricks, pokes, and personal invasions but they have come through them all with sweet smiles and brave hearts... I am so proud to be their mama! 

People ask me all of the time, "How are you so strong?" but the truth is I get my strength from these little ones. I am only as strong as they need me to be at that moment. Don't get me wrong I'm not exempt from stress and fatigue, I just don't have time to give into them.

During an interview today, for an upcoming Ronald McDonald House newsletter, I was asked to recount our experience here. It was the first time that I had stopped to really take in what we had been going through. Together we have endured four surgeries, inpatient stays with three different children, an MRI under anesthesia, testing that lasted over three hours, accidental tube coming out, one trip to the ER and countless appointments.

When your in the midst of a battle you don't stop to reflect on what is happening around you, you just fight through each trial with every bit of your strength. 

My greatest lesson from all of this is that we must seize every opportunity to replace our brokenness with joy every day.

My perspective of life has dramatically changed over the course of the last two years, giving me a new appreciation

for each day spent with those I love. I have been humbled countless times by the generosity of others and have seen just how much good really exists in the world.

Although, this year the Christmas season has looked a little different for us... I know we will appreciate it more than ever! 

B is for Bennett

Please, let me introduce you to an incredible little girl... I promise she will change the way you look at life. 

                                 

I used to think that B was for boy or ball, but I have learned that it is most certainly for Bennett. This spunky blue eyed little soul is full of lessons to teach the world. And although she has experienced more trials in the past five months than most will in a lifetime... she still manages to smile.

Bennett is BOLD, beautiful, strong willed, and determined. She has the sweetest spirit that will cause you to fall in love with her the moment you meet her. She has an amazing presence that can't help but steal the attention of everyone near her. She knows exactly what she likes and how to stand up for it. She is quite possibly the smartest 2 3 year old ever and articulate beyond her years. She is brave, not because she wants to be but because she has to be and her bravery is tested daily.

Bennett was diagnosed with a rare brain tumor this past July. Her days are now filled with invasions on her body and strangers calling the shots trying to take away the one thing that Bennett holds most dear... her independence. 

Today this beautiful little girl will be spending her birthday in the midst of strange faces and hospital walls. Instead of enjoying party games and playing with friends she will be receiving chemotherapy, mountains that no child should ever be forced to face, especially on their birthday!

I am amazed by the incredible strength that comes from such a petite little package and I am grateful from the lessons that I have learned from this special little girl. Bennett has taught me...

to appreciate the small things in life, just  as she does for the tiny treasures she collects, to keep smiling even when I feel like I can't, to remain bold even when my spirit is weak, to stand up for what I believe is right, and to always give the gift of love.

To know this wonderful little gal is to love her and the same is true for her beautiful family. The only thing equally amazing to Bennett is her extraordinary mother. Katie Anne is fighting the biggest battle of her life while caring for a newborn and doing both with such grace and dignity, relying on faith and leaning on God. She has been an incredible source of inspiration and strength for me and so many others, I am so grateful to have been given the chance to know her.

Thank you Bennett and Katie Anne for teaching us what true beauty really looks like. 

                                              Happy Birthday Sweet Bennett, We love you!!

                            

                                    

Please stand with us in prayer for complete healing for our beautiful Bennett! Read more about this inspiring little girl at http://www.caringbridge.org/visit/bennettlester

Two ways to Support Bennett and her Family:

Send Christmas Cards to Bennett and her family...

Ronald McDonald House Charities of Greater Cincinnati

Lester Family Room 40

350 Erkenbrecher Ave.

Cincinnati, OH 45229

Or go to Blessings for Bennett

'Tis the Season for FOOD... the four letter word!

I use to love this time of year and all the fun that comes with it but this year is a little different.

As much as I want to get into the spirit I just can't help but feel a little less than festive. 

Have you ever stopped to think about how much food plays a role in our celebrations? I never gave it much thought aside from the occasional post dinner jokes about excessive calories or overindulgence. 

Although, this little four letter word, isn't the real reason for our celebrations, it is pretty hard to ignore when your child can't eat anything! 

And let's not forget it isn't just the lack of eating that's the problem, it's the missing out on all of the memory making fun that involves FOOD!

Honestly, it isn't even the fact that while everyone else indulges on mouth watering treats while my little guy slurps up shaved ice, that causes the biggest sting to my 'mother's heart'. 

It's the pumpkin carving and patches, trick-or-treating for candy, turkey and pie eating, Christmas cookie making... FUN... that I will miss the most.

I guess the hardest part is letting go of so many holiday traditions that we have had since our first child was born. 

I know that our little superhero will not miss these things, in fact he doesn't know any other way... it's me. I'm The One!

It will be me that misses getting to see his squeamish smile when he touches slimy pumpkin guts for the first time.

I'm the one that has to let go of not getting to watch a messy face toddler plunge into the thanksgiving fixings.

I'ts me that longs for the perfect image of all of my children gathered around a table with endless smiles as they cut out and decorate their Christmas cookies... while sneaking licks of icing when they think no one is looking!

I'm the one that is missing out on him doing the same family traditions that have become synonymous with the holidays.

Now, trust me I realize that I am blessed to even have the opportunity to share these holidays with my little guy, and I will not let anything keep me from soaking up every moment... but I would be lying if I said, "It doesn't hurt a bit."

Please don't get me wrong, we won't let this keep us from making wonderful memories, we are just going to have to get creative and find new ways to make jolly holiday fun. Very soon I will begin to relish in the joys that come from our new traditions... I promise!

But for now, Thank you...

... for not judging this special needs mama for letting her feelings of sadness surface for just a moment. 

... for allowing me to mourn the loss of the "normal" care free way of life that we use to enjoy. 

.... for supporting us in more ways than we could have ever imagined.

... for going above and beyond to make our little superhero feel included.


I feel better already!!

Our Superhero: Cohen's Story (Super Cohen's Crusade for FPIES)

I realize that perhaps some of you have become pretty numb to my relentless requests to pass along information about my son's condition.

Please before you scroll past another one of my posts understand why I do it...

This media is all I have at the moment to feel as though I am doing anything productive for my child and his illness. I am left without resources to help my son and it is a helpless feeling as a parent, one that I hope none of my Facebook friends ever find themselves experiencing. So I am doing the only thing I can... I am advocating for a change so that my son and others can live fuller and less painful lives.

I pray you never have to hold a limp and lifeless child.

I pray you never have to hear a doctor say, "we just don't know what to do."

I pray that you are never told that your child cannot eat.

I pray you never have to experience the pain that comes watching your child suffer.

I pray that you will help us spread awareness and bring light to this illness.

Global FPIES Day is about sharing our stories to help others that might be caught in the painful cycle of misdiagnosis and to raise awareness that will bring about critically needed research.

My child cannot eat food and that affects every aspect of our family's life. It is our everyday battle...one that we hope you will chose to help us fight.

I ask you... because I need you! There are still so many doctors that have never heard of FPIES. Please share our story, Cohen and his friends need your help.

Please visit Cohen's Facebook Page, LIKE it and share it to help spread awareness.

Happy Global FPIES Day!

How Our Journey Began     Here's the story of one little Superhero...

By the Light of the.... Little Pump

I have recently become aware of new talent that I have unknowingly developed. Isn't it funny how you can move through your day and not even realize that you have picked up odd habits.

I don't mind to admit that our little superhero has challenged everything I know... or thought I knew about child rearing. Nothing with Cohen has seemed to follow suit with his four older siblings.  But I have had to learn how to grow and stretch my understanding of parenting in order to accommodate his unique needs. Along the way I have not only learned many things about myself but I have apparently developed new gifts as well.

So what is this new talent you ask...

Well, awhile back all of our bedroom clocks decided to retire themselves and for one reason or another they were never replaced. Now, it has come to my attention that I have found another more unconventional way to tell the hour throughout our long nights.

A short while ago I realized that I have been periodically waking and looking at the level of Cohen's formula to determine the time. Because Cohen has the same rate every night, I can tell how much time we have left for sleep by looking at how much formula he has left in his bag. It's a strange gift I know and one I had been developing for longer than I realized.

Who knew that when we welcomed that glowing little noise maker into our bedroom that I would find another extraordinary use for it (I mean besides its, sustaining the life of my child one).

I guess you could say that this is my little way of turning lemons into lemonade!

Reese-Pie...Reese-Pie, Oh my Reese-Pie

Happy 4th Birthday to my spunky little funny bug. We are so blessed to have you in this crazy little gang or ours. You are such an amazing little life and you bring happiness to each and everyday.

 I love that you can act like a teenager one minute and then a toddler the next.

I love that you never shy away from giving your opinion, or demonstrating your uncharacteristic strength for someone so small.

I love that no matter what you find when you look out the window each day you say, "Mama, it's such a beautiful day." 

I love that you remind me that life is short and childhood is even shorter.

I love that you think it is hilarious to hide for minutes behind walls just to jump out and scare us.

I love that you climb in bed with me really early every morning just to snuggle.

 I love that you still put your shoes on the wrong feet just because you, "like it better that way."

  I love that you won't go to sleep at night until I give you your hugamugas (nose kisses... see Daniel Tiger for more details).

I love that you really do want to be a princess when you grow up, except for the day you thought perhaps you would like to be a dentist.

I love that you do the Reese-Pie Dance, when we sing, "Reese-Pie, Reese-Pie....Oh, my Reese-Pie."

I love the way you sing all day long, reminding me that nothing should keep us 

from making a joyful noise. 

 Oh, Reesie-Pie how we love you soooo!

Happy Birthday Sweet Little Girl!

Psalm 100:1-2

Make a joyful noise unto the Lord, all ye lands.  Serve the Lord with gladness: come before his presence with singing.

Deep Breaths

Allergy testing

Four of us sat for over an hour in a small 8 x 6 room waiting anxiously to hear again from doctors. This seems to be a frequent scene for our family lately and unfortunately, I have come to expect little results from these gatherings. I was particularly nervous about this appointment because of the testing that had taken place earlier that day. 

For those that don't know, my girls have been suffering chronically with lung issues and where diagnosed with severe Asthma at the age of 3... and apparently their youngest sister has decided to follow suit (let's save her story for another day).

The morning of our appointment my two oldest girls underwent Methacholine Challenges; it's when a chemical is administered in increasing concentrations with the intention of inducing symptoms in those with respiratory issues. I was present while these test were being administered, going between two rooms in an effort to try to comfort each girl. I would watch as this long drawn out process progressed on for both girls. If at any point they exhibit respiratory distress the test would be stopped

and they would administer abuterol to reverse the reaction, which would confirm the diagnosis of Asthma.

Now, keep in mind I have been treating my girls for severe Asthma for about 9 years so at this point I was secretly thinking to myself... these tests better be positive.  We have lived through so many scary breathing episodes with both girls and each winter usually brings with it very sick children. We were desperate for answers and the reassurance that our kids were not going to have to continue living this way. Kayla  alone has endured 7 episodes of pneumonia and countless doses of oral steroids.

It is such a helpless feeling to watch as your children continue to become ill with no one able to identify the real cause.

As I watched and waited, I could see that Kayla was not going into respiratory distress, and while normally that would be a great thing, it was not very comforting for me at that moment. I kept telling the respiratory therapist, "I don't understand, you should see this kid and how sick she gets with breathing issues." My concern started escalating into frustration... I had been treating her for Asthma for 9 years, giving her medication to relieve symptoms, her doctors heard wheezing on many occasions... how could this be!!

Our, "We Can't Eat After Midnight" late night party at the RMH!

The room across the hall was producing much different results. It wasn't long into the test when Addyson began to have difficulty breathing and the test had to be stopped... a diagnosis of Asthma was confirmed! But her older sister continued to plug a long through the test and it wasn't until the final dose that she had a mild enough drop in her lung function that she needed reversing treatment. However, it was still not enough for a positive test result.

Now, as I sat in that small room waiting

My Brave Girls!

to hear from the pulmonoligist my anxiety began to rise. I was preparing myself to hear the words, "she doesn't have Asthma, we don't know why she gets so sick... sorry good luck to you all." I couldn't let my little girl go through another horrific winter without answers and I began to give myself a pep talk, urging myself to stand firm and let the doctor know my frustration.

When she finally came into our room I could feel my pulse pounding, I was ready to be as vocal as need be. Our doctor grabbed her papers wheeled her chair over in front of me and said, "Let's start with Kayla." I took a deep breath and readied myself to hear what she had to say. She went through the test in detail before telling me what I had suspected to hear, "The test was not positive, indicating she doesn't have Asthma." Before I could let my building frustration speak she continued, "But what the test does indicate is that she has something called Bronchomalacia."

I couldn't believe my ears... She wasn't leaving us without a diagnosis, she was giving us the correct one. She went on to say, "That asthma treatments actually make bronchomalacia worse by weakening the already floppy airways. She also explained that Kayla's lungs can't clear mucus very well, which is why she has had pneumonia so many times."

                                   

I tried to hide my tears as I realized that we had not only spent the past nine years NOT making my sweet child better, but we had in fact been "making" her sicker with her Asthma medications. 

"So you are taking away her Asthma diagnosis that she has had since she was 3?" I said as flashes of the past nine years zoomed through my head. Her voice softened as the words, "Yes, I am," hung in the air... before echoing painfully in my heart.

The guilt began to overwhelm me and I could no longer hide the tears that had been forming in my eyes. She and Todd, both almost simultaneously said, "It's not your fault," but their words were not enough to comfort me. How could this be and why had it taken so long to figure out?  

The doctor then put her hand on my knee and very sympathetically said, "The bad news is that this will never go away, it is something she was born with, and she will always have it. If this was Asthma I could offer you all sorts of support but there is not very much we can do for bronchomalacia."

At least now we're receiving long awaited answers and someone was finally connecting the dots on almost all of Kayla's issues. However, the sting of the past was still rattling through my mind as I did my best to refocus my thoughts on the positives.  

What about Addyson...

Well, she kept with true Bramlee fashion... we like to go BIG or go home!  Our middle child must have felt the need to one up (or should I say two up) her older sister. Addyson very clearly has Asthma (evident from the methacholine challenge) but she also has bronchomalacia and the beginning of tracheomalacia (floppiness in the trachea). 

Remember above when I said that, "Asthma treatments makes bronchomalacia worse." Well, I am sure you see our dilemma.  Our pulmonologist said, "There is no easy answer or a good plan for Addyson, if she is wheezing give her abuterol and if it doesn't work and makes her worse then give her steroids immediately." That's right... our best plan is in fact just a roll of the dice, with the very real potential to make her worse not better.

Here Is Our Plan:

~keep the kids as well as possible because any illness reeks havoc on their lungs

~administer higher doses of inhaled steroids at the first sign of a sniffle

~if inhaled steroids do not stop symptoms within 48 hours they must take oral steroids immediately

~therapy to learn to cough differently in an attempt to try to keep their airways from collapsing with each cough

It is such an uneasy feeling when an expert doctor, from a major children's hospital, looks at you and says with a sincere expression, "I just hope this treatment works." 

At least NOW we know WHAT we are battling against, making the fight much more fair!  

So for now I am working on forgiving myself for my unknowing role of contributing to making my girls sicker for years.  Oh, the logical side of me realizes that it wasn't my fault, but for some reason I just can't seem to convince the ache in my 'mama heart'.

We will not let this defeat us!  We now know what we are fighting and that gives us power.

Sweet little girls your daddy and I promise that we will never stop fighting to keep you well and we will always give you our very best.

1 Peter 1:6-9

 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls.

Flight Night

After four days in our local hospital my hopes of remaining close to home faded quickly.  As I found myself face to face with two gentleman dressed head to toe in flight gear and standing in our hospital doorway, my mind began to replay the events of the day.  I was desperately trying to remember how we came to be at this point.

First, let me say I have come to love our "small town" hospital and pediatrician's office, they've earned the right to be called our front line defense for Cohen.  They know us and they know what to do when he is having a reaction.  We have developed a relationship with these wonderful people and they are part of our "Team".

So for us to be able to stay close to home for this battle was a blessing for me to say the least.  But with the passing of each day I was warned of the impending transfer to our "Big" hospital.  After a few days I thought we had possibly dodged the proverbial bullet but then it happened...

Cohen wasn't getting better and one of our very trusted "team doctors" made the decision that it was time to get him to Cincinnati.  I felt like someone had kicked me in the stomach... our other kids were here at home, Todd was here, friends and family that could help us.... they were all here.  But everyone agreed that this was the best plan for Cohen.

As his doctor began to make the arrangements for the transfer he periodically come in to update me on what was happening.  At one point I was told that they were trying to determine whether Cohen would be going by helicopter or plane.  I was informed that if he went by helicopter I would not be allowed to fly with him.

The idea that I would be at best a 6 hour drive behind him was frightening for several reasons. Besides the obvious of having a sick child whisked away from you, there was much concern about Cohen's severe allergies. On several occasions at our "Big" hospital  I intervened, preventing several mistakes that would have made him extremely ill.  Who would advocate for him if he was flown there alone?

I did they only thing I knew to do... I got on my knees and began to pray... I asked my friends and family to pray... and I sent out a Facebook call to prayer.  I was desperate and scared for my little guy.

I spent the passing time holding and comforting my sweet baby boy and praying.

The news finally came, they would take him by plane and I WOULD be able to go with him (Praise The Lord), however I would only be able to bring a very small bag with me.... seriously, I would go with only my toothbrush in my pocket if it meant being able to stay with him!!!

Now, in my doorway stood our transfer team who quickly introduced themselves and informed me; "That my child was now under the care of Cincinnati Children's Hospital and that they would do everything they could to keep him safe and comfortable during the transfer process."  My head was still spinning from the events taking place and I could tell from the look in Cohen's little eyes he was feeling the same.  

I placed him on their gurney (which must have cost more than most people's vehicles) where he was surrounded by computerized equipment and emergency gear.  He looked so small lying there.

We began to make our way down the hall and I could hear the whispers of onlookers making their speculations as to what was happening to my little guy.  His sweet nurse (now friend and "Team Member") came out to hug me and give me her love, leaving these people that I have come to trust so dearly was hard and added to the emotions building inside of me.  

On the ride to the airport I sat quit and unable to speak (something very uncommon for me).  I have watched movies where the scene shifts to slow motion and the events of the moment seem to drag on... and now I found myself living in one of those moments.  Todd tried to arrange to meet us at the airport but we were already to far in our route for him to get there in time.  I am certain that seeing him would have probably released all of the emotions I was so desperately trying to hold back.

It was pitch black when our ambulance pulled onto the runway where "our" plane was waiting for us. I had been here many times but I had never seen it look this desolate and lonely. I quickly became aware of the fact that the only people at this airport where here for the sole purpose of taking care of my son.  I quickly dismissed the thought for fear of becoming overwhelmed with emotions.

Two pilots and another transfer member were standing by the nose of the plane waiting to introduce themselves to me. Their kind attempts at trying to make the mood a little lighter was lost on my foggy mind.  I watched as this giant gurney was attached to a mechanical arm that lifted it and it's precious cargo onto the plane.  

I was then ushered inside and given a seat close to Cohen's head where he could see me.  My strong little boy had never uttered a peep this whole time and now searched my eyes for reassurance.   I held his little hand as we began to taxi down the runway.

When we started to ascend Cohen suddenly began to scream and tears of pain rolled down his little cheeks.  The flight nurse quickly came to his side and attended to him, I would learn later that the changing of altitude was creating even more pressure in his already gas filled belly.  The nurse was able to vent his G-tube and reduce some of his discomfort.   He finally settled and fell asleep.

I had never been on a plane this small. I am not a big fan of flying to begin with...  and on this little gem I was able to look out of the cockpit window, a view that I was not entirely comfortable with apparently!  

The trip took us about 45 minutes.  During the flight I had a chance to finally catch my breath and attempt to take in everything that was happening.  I kept looking at my sweet little guy thinking about all that he had been through.  This isn't  a situation that you every think you will be in with your children.  And now here I was thousands of feet in the air with complete strangers that I was completely depending on and trusting with the life of my child.

I watched as we passed over hundreds and hundreds of lights, each representing people that were going about their daily lives.  I tried to think about the everyday things that I would have been doing and certainly taking for granted if I were home.  I wondered how many times people in similar situations had flown over my house and seen our "going about life light" glimmering below them.  It was thought provoking enough for me to make a commitment to start praying for the planes and helicopters that pass over me each day.

When we finally arrived there was an ambulance and more transfer team members waiting to escort us to the hospital.  This proved to be another long silent ride with me still to emotional to speak, for fear I would start crying and not be able to stop.

The night was long, Cohen's IV blew while we were in flight and a new one had to be placed. The hospital has a team that is designated to specifically put in IV's for kids's like Cohen (he has a lot of scar tissue from all of his IV's and is very hard to stick).  Even with this special team he had to be stuck more than once to finally get his new IV started.  

Todd and the girls arrived the next day... and my heart never felt so full!!  I couldn't hug them enough. Cohen slept most days still, which allowed for me to spend some much needed time with the girls.  My wonderful husband knew just how hard the events of the passing days had been on me and was trying to provide me with as much reprieve as possible.

I was doing well and had been holding it together and then it came time for Todd and the girls to go back home.  Now, I am not a real big crier, I mean I do... just not very often or over little things.

And then it happened...

I was trying to check them out of the Ronald McDonald House when one of the SIX sweet ladies behind the counter said some very well intended words... "I hope you have a safe trip home."   Now, up until this point I had not shed a single tear, maybe I was just to exhausted or perhaps I hadn't let myself fully take it all in, however for some reason this was the straw....

These poor unsuspecting ladies were suddenly staring at a blubbering lady that was trying to get out the words, "I don't get to go with them." Between my uncontrollable sobs and feelings of humiliation (I hate crying in front of people much less strangers) I was a mess and I was trying to hide it from my girls.  Fortunately, they were off getting a snack for the road and missed the whole scene.

These wonderful ladies did their best to comfort me and went out of their way to do all they could for us.  I am so grateful for the kindness of the people that work at the RMH.

It has taken me awhile to be able to write about the events surrounding our flight.  It was a difficult time for our family and it wasn't something I wanted to revisit in my mind.  Now, that I am sitting here in the comfort of my home and have been able to keep our little superhero out of the hospital for awhile, I can fully appreciate the experience and what it has taught me.

For now I am taking each day one at a time, appreciating every opportunity to be together as a family. And reminding myself that; there is joy to be found in each day and although some days you may have to look a little harder than others.... never give up, it's there!