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.