Friday, March 16, 2018

"Don't worry, you can't catch what I have."

"This is my little brother, he has an illness where he can't eat and has to go into the hospital all the time because he gets sick a lot."

I listened from the other room as an introduction took place between my seven-year-old daughter and her new friend. My heart had become terribly used to a lot of jabs but it wasn't quite prepared for the pain that would come from the next few words spoken.

On the floor in front of them, sat a sweet little five-year-old boy who had become very adjusted to his medical isolation, and apparently, without me knowing had become extremely aware of his own medical condition.

This new friend looked curiously at my son and without missing a beat, he replied, 
"Don't worry, you can't catch what I have."
In that single moment, I was whisked back in time to a scene of me rushing a vomiting toddler out of a children's museum. I could vividly see the gawking parents in the play area, their faces, resembling that of the child which then stood in my living room. That day in the museum had been etched into my memory. I carried my young child in one arm while using the other free hand to catch vomit. As I made my way towards the exit I could feel the piercing eyes of concern from the parents around me. In my need to defend our presence in the children's play area, I defensively began to repeat, 
"You can't catch what he has, please don't worry, you can't catch what he has!"
My instinct at that moment was to free the onlookers of their fear of catching a virus from another child. I have come a long way from that moment in the museum, yet suddenly I found myself transported back to the insecurity of those feelings.

My heart broke knowing my child felt the need to make that same distinction to others. 

"You can't catch what I have!" 
No child should have to make that kind of clarification to someone. No child should have to feel the need to defend their existence that way.

His words broke me... but not him. 
To him, it was just a simple reassurance which he sensed this new person needed.

When did he become so aware? I still see him as a young baby that has no knowledge of his differences. Yet, here he sits trying to comfort others with the news of his illness.

Daily he watches others consume food, something he has never been able to do.

Daily he watches others run and play outside, something his body just doesn't have the stamina to do.

Daily he misses out on bathing even though he would love to indulge in the water that he covets.

Frequently he watches others swim, something he can't be apart of because of his central line and risk of infection.

Often he misses out on life while stuck in a hospital, enduring procedures and fighting infections and fevers.

Yet, he feels the need to reassure others, bringing them comfort in coming to an understanding of his situation. These circumstances have just become his way of life and he has an incredible ability to make the best of it. Never asking,
"Why me?"
Yet, no one would blame him if he did.

Instead he,

...pretends to eat food when everyone else sits down to eat a meal. through a window shouting funny activities for others to act out while he giggles at their silliness.

...splashes his hands in a sink full of water, while others submerge in a bath.

...drives a motorboat and shoots water guns at the others while they play in a swimming pool.

...turns a hospital room into an imaginary world filled with pirates and dinosaurs, while others continue on with their lives on the outside of the hospital.

How can one little boy endure so much and still find joy in each day? He teaches us that we are so much more than our circumstances. He reminds us that all life has value and purpose, modeling how each of us must choose to find the good and allow it to cast a shadow over the struggles we endure.

Once again this little child has taught me a valuable life lesson. My instincts often lean towards sitting and licking my wounds, dwelling in the sadness of such moments. 

His, however... is to address the concerns of others by giving them comfort and reassurance.
 "It's the best day ever mama."
Words that often follow days filled with pokes, procedures, and tests. 

Words that my perspective would not have allowed me to utter, yet somehow he freely offers them as an attempt to comfort me.
"How's your day been?"  
A question I hear him frequently pose to those he encounters throughout his days. Leaving me to wonder, when's the last time I concerned myself with the goodness of someone else's day?

Perhaps if we all focused on a concern for others and less on the darkness of our own days, we too could redirect our perspective, guiding our own attitudes towards hope and joy.

It sure seems to be working for this amazing little five-year-old boy! 

Once again I am humbled by his young wisdom and pure heart.
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Monday, January 22, 2018

A Day In The Life 2.0

I can't believe how long it has been since I typed words on this page. It's been a tough year and honestly, I have struggled with finding words to write. The truth is, I want to stay positive and focus on the good... but the past year has been a doozie.

So I decided to do a fun update on our, "A Day In The Life".  I find it so funny that our old post lingers at the top of my, Most Frequently Read list and yet it is so far from being an accurate depiction of our current life.  Consider this A Day In The Life 2.0 an updated "Real" version.

January 18, 2018

7:00 am Wake up with a child crying that her throat hurt.

7:10 am Take her downstairs to get her some ibuprofen and make her some hot tea.

7:20 am Go back upstairs to get Cohen and change his g-tube drain (a.k.a. belly diaper), then head back downstairs.

7:30 am The rest of the gang begins to trickle down and begin to want to eat.

7:35 am Make breakfast for everyone.

8:00 am Remember that I had forgotten to make my coffee but managed to receive a compliment from my ten-year-old,  that despite me not having my coffee yet... I was actually still nice.

8:30 am Clean up dishes and referee a spontaneous Nerf battle that broke out all around me.

8:45 am Give morning medications.

9:00 am Morning devotions

9:30 am Get everyone started on school work.

10:00 am Give Cohen a bath.

10:20 am Prepare supplies and then change Cohen's dressing with Todd (who hadn't left for work yet because of snow delay).

11:00 am Work with the little kids on their school work and talk with medical supply company and nursing agency on the phone.

12:00 pm Prepare lunch for my crew.

12:30 pm More phone conversations with another nurse and insurance company.

1:00 pm Work with my high school kiddo on his research project.

2:00 pm Work with my middle schooler on her math review and go over her test.

2:30 pm Prepare supplies and set up Cohen's TPN infusion.

3:00 pm Prepare supplies and set up Cohen's steroid infusion.

3:15 pm Finish and flush of Cohen's steroids and speak to Cohen's medical supply deliverer.

3:30 pm Fix snacks sandwiches for my four oldest kiddos so they won't starve during their workouts.

3:45 pm  Fix three heads of beautiful hair for gymnastics practice.

4:00 pm Pack this crew into the car.

4:15 pm Run to the bank.

4:30 pm Drop the girls off at gymnastics and speak with the coaches briefly about their meet tomorrow.

4:50 pm Call from our amazing nurse in Cincinnati to touch base on the day.

5:00 pm Take oldest to meet daddy at the gym for their boys only workout.

5:20 pm Hurry home to meet our medical supply deliverer.

5:45 pm Unload all of Cohen's WEEKLY medication and supplies and put them away.

6:00 pm Prepare supplies for Cohen's medication infusion.

6:30 pm Make dinner and put it in the oven.

7:00 pm Flush off Cohen's medication.

7:15 pm Head out to get gas and then go to the girl's gym to watch them before practice ends.

8:00 pm Talk to the girls' coaches and then head home.

8:05 pm Remember that we have to get note cards for my oldest child, so we stop at the store... after leaving the store I remember I also needed bobby pins and hair gel for the girls gymnastic "meet hairdos"... so I run back into the store!

8:20 pm Finally arrive back home for some long overdue dinner, I'm starving!!

8:25 pm Remember to call and wish our cousin happy birthday, before its actually over (in our defense we did celebrate with him last weekend).

8:40 pm Dinner Time devotions, with daddy.

8:55 pm Clean up the kitchen and the girls get their baths.

9:15 pm Boys head to bed and girls line up to get their "meet hairdos" (we have to leave really early in the morning for their meet, two hours away, and getting 3 heads done that time of day just isn't in my skill set!)

10:00 pm Gymnastic hair completed and girls tucked into bed.

10:15 pm My turn to get showered.

11:00 pm Pack all of Cohen's medications that I will need for the next day and double check to make sure that the girls have all of their stuff for the gymnastics meet.

11:30 pm My exhausted head finally hits the pillow! Tomorrow will be the difficult day.... ALL day gymnastic meet with five kids and no available husband..... yup.... Just another day in the life and I wouldn't trade it for the world.

*Before I get the school question.... yes an hour of individual time can be enough per child when you work one on one. And yes my older kids work independently (for the most part) with the exception of some subjects and projects... that's the benefit of teaching your children to learn, "how to learn".

Don't get me wrong there are some days when I spend a lot more time with individual children and at any given time a child needs help with their school work. Today was actually a lighter school day because no one was learning new concepts, those days are more involved for me.
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Sunday, April 2, 2017

Please Forgive My Anger

A lot of parents caring for sick or special needs children often wear a smile, but sometimes those smiles are hiding something from you.

This is hard and we get angry!

Not at anyone specific (usually) but at what our children endure daily and our inability to take it away. Our journeys may differ slightly but our anger comes from a common place, our children live a life filled with struggles and it's too much to bare at times. So we often silently struggle with our anger and hurt.

The truth is, at times, I need to be allowed to just be angry.

I'm angry because my child never gets to taste anything... nothing. He watches the world eat snacks, meals, and even slurp down tasty drinks. While everyone else chooses which flavor to pick, he is forced to choose between quenching his thirst or drinking a few sips of water and suffer so much that he needs pain medicine. 

I'm angry that every meal reminds me that there is a plate that I will never get to fix. And when our family gathers around the table he feels the isolation of his reality. 

I'm angry because at any moment I could be plucked right out of any resemblance of "normal" life, spending weeks in a hospital. Missing out on the routines of "normal" life has a way of making you feel invisible to the rest of the world. I am forced to miss out on the gift of being able to care for the needs of ALL of my children.

I'm angry because my child lives for weeks and weeks in hospitals. He suffers through painful procedures, frequently requiring him to be held down while he screams for help.

I'm angry  because he can't be around a lot people for fear of germs. His immune system kicks into overdrive when an illness enters his body. And because he has a central line (permanent IV) he is at extreme risk for infection and sepsis, so he is hospitalized for days with a fever of 100.4 degrees.

I'm angry because some of the best doctors in the country tell us that our child's illness is most likely so uniquely rare that we shouldn't expect a cure at this point. How does a mother digest those words? Our child is perfect to us and he deserves a perfect outcome.

I'm angry because daily life can be difficult at times and the possibility of him ever getting to do normal kid activities diminishes everyday. He is supposed to be playing with kids his age and enjoying parties, not living in a bubble.

I'm angry because I have to watch so many of our friends, daily, struggle with every fiber of their beings to keep their children alive. I have seen the unimaginable brokenness that comes with burying a child. Children shouldn't suffer and parents shouldn't have to anguish over making critical life and death decisions for their little ones.

So please forgive me because at times I am angry, but I want you to know that there is always something that can overshadow that anger,
 Faith and Hope

I have faith that there is something bigger. There is a far better place where we walk free from pain, free from anguish, and free from anger.

My hope is in the promise of there being more to this journey than these things that make me angry. And by living faithfully in this season of struggles I am allowing God to create a greater purpose for my life.

I know that I must choose by faith to release my anger and receive peace in its place, so that I may continue to walk this path in grace. Peace allows me to take my eyes off of the hurt and focus on the joy of my children.

My faith gives me hope, without either I could not receive the peace I need to thrive in this journey.

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Thursday, February 16, 2017

Why Are People Committing to Eating Ice on February 28th?

Why would people forgo delicious treats and instead choose tasteless ice to eat on February 28th?

Its simple, because despite all of the negativity that we see bombarding our screens and filling up our minds, the majority of people are still good and caring with a deep desire to help each other.

Can you imagine living without tasting anything?

Let me introduce you to an amazing little boy that lives everyday without ever taking part in the most natural of all experiences. He lives without eating. At four years of age he lives only on a nutritional life support given to him through an IV, nothing enters his digestive system but ICE. 

When our family gathers around the table at mealtime, he sits and eats his ice, enjoying it as if it was food. Cohen reminds us everyday to appreciate the little things. He never complains, in fact he gives thanks for his ice before eating it and after each bite he says, "Mmm yummy."

February 28th is Rare Disease Day, a day set aside to remind the world that there are rare diseases equally devastating as many of the well-known ones. Most of these individuals have had long hard journeys seeking a proper diagnosis and still others, like Cohen, may never know the name of the monster that attacks their bodies. It takes an average of four to seven years to finally get a proper diagnosis and even then there is little hope for a cure due to that lack of understating of these illnesses.

As difficult as it is to imagine, there are people dying from diseases that cannot yet be identified by science or are far to rare to have success with research funding. Many of these people have been told, just as we have, that, "We are waiting for science to catch up."

Committing to eating ice may seem like an insignificant act of kindness to most people but to one little boy who lives life in isolation, it means a moment of inclusion. It will provide great encouragement to him and others who experience this kind of aloneness. If one person asks the question, "How can I help people living with a Rare or Undiagnosed diseases?" then this challenge was a success.

I remember living in a world where I didn't have to think about children suffering, nor watch friends anguish in silence. But that world is not the reality for the estimated one in ten people living with rare diseases. Let's make them feel valued on February 28th and break their silence. Eat Ice. Spread Awareness. Join the fight against Rare and Undiagnosed Diseases.

Take part in the, "I'm Eating Ice for Super Cohen" Challenge at Super Cohen's Crusade FaceBook Page

Get creative with fun ways to eat ice, post your pics and Cohen will be the judge on February 28th

Please visit  Rare Disease DayGlobal Genes or Rare and Undiagnosed Network for more information on rare diseases and how you can help.

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Thursday, February 2, 2017

Groundhog Day

Forget the little critter that pops it's weather predictive little eyes out of the ground to break the news of a longer winter to the world.  It's the iconic movie, Groundhog Day that fills the minds of my generation, when we think of Feb. 2.

Even the idea of repeating your BEST day, over and over again seems annoying and frustrating but living a bad day over and over again, seems unbearable.

Exactly one month ago to the day I sat in this very same surgical waiting room waiting to get my sweet boy back again. These walls are way too familiar, as are these feelings.

He is only 4, but....

14 15 times I have gone through Pre-Op evaluations with nurses and doctors.

14 15 times I have sat for hours playing and distracting him from the monotonous passing of time while we wait for our turn on the sterile stage.

14 15 times I have watched him bravely endure the details of this day.

14 15 times I have walked him through the cold double doors pretending to be listening to the small talk of the nice orderly.

14 15 times I have stood and smiled at a room full of blue hats and said, "No I don't have any more questions."

14 15Times I have watched his beautiful eyes roll back into his sweet head while he drifted off to assisted sleep.

14 15 times I have heard the words, "Don't worry mom we will take good care of him."

14 15 times I have kissed his little head and told him I loved him as I turned away, leaving him with a room full of strangers.

14 15 times I have walked down the cold hallway swallowing my tears, trying to pretend I was okay for the benefit of my concerned escort who asks, "Are you doing okay, mom?"

14 15 times I have felt an enormous lump in my stomach while I waited for his sweet little name to filter through the air for my turn at an update.

14 15 times I have been called into a little room to find out that we now have more questions than answers.

14 15 times I have waited to have him back in my arms, yearning for the moment that I get to stand by his bed while he slowly comes back to consciousness.

14 15 times I have wondered when does life get easier for my beautiful little boy.

14 15 times we have endured this Groundhog Day... we're ready for a new day.

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Wednesday, January 11, 2017

How Much More Can Our Hearts Take

I used to live in a world where I rarely had to think about sickness affecting children, let alone mourn the loss of them. I miss that world. I'm not sure how much more our broken hearts can take.

When Cohen learned about his dear friend Dylan passing into the arms of Jesus he collapsed onto my lap sobbing, "Not another friend!" These past two years have been difficult. We have had to say good-bye to so many friends and have others that are still fighting for their lives. 

Yes, "Another" sweet friend of ours has battled mountains that no child should ever have to and experienced life like many never will. And like so many of these young beautiful souls Dylan too created a legacy, in almost 13 years, he impacted the world more than most of us ever will.

We met this incredible little guy when we were first admitted to CCHMC three years ago. Daily, he would come and stand at our hospital room door trying to lift Cohen's spirits. If Cohen would cry he would come to check on him, bring him gifts, or offer to play with him in the hallway. These two bonded immediately. Neither can eat food which allowed Dylan to understand Cohen's life at a level I will never be able too. 

Last winter, after Cohen had gone into acute liver failure the two were once again on the same floor.  Almost everyday Dylan had a new gift for Cohen, encouraging his love for reptiles and dinosaurs, and spoiling him rotten. Dylan received a remote control car for Christmas and gladly shared it with my grabby little toddler, never complaining or fearful of him breaking it. I always knew when Dylan had visited Cohen while I was away by the sweet lingering smell of his famous cologne. His beautiful spirit was definitely beyond his years.

Many of Dylan's organs may have weakened over time but his heart was surely not one of them. Dylan was the most caring, loving, little boy that I ever have had the privilege of meeting. His roots run deep because of the dedication and love his parents Diana and Terry have instilled in him. It's no wonder Dylan was such a gift to others, he witnessed his parents modeling kindness daily.

Hospital days are difficult but those trials create bonds between families. Terry and Diana never shied away from loving on others in the midst of their own trials. Many times Diana would come and rescue me from my stress and fearful thoughts with her sweet smile and loving hugs. I came to look forward to our mornings by the coffeepot as we chatted through our sleep deprived foggy minds.

Terry and Diana, you are incredible examples of faithfulness. You have shined Dylan's light and shown the world what TRUE faith looks like, I am honored to know you. I will never forget the time when many of our families, that share this incredible bond, stood and prayed together at the RMH for Dylan and Mackenzie. God's arms were around us then just as they are now. 

I know that nothing can numb the pain of no longer hearing his sweet voice or holding him close, but please know you are not alone and you are loved.

My heart hurts so deeply for you right now. I am clinging to the hope of tomorrow, grateful that this world is not the end. My peace comes from knowing that one day we will be reunited with your sweet boy with the biggest heart.

Dylan, you left an amazing legacy for all of us to live up to. You set the bar high by your example of caring for others, even in the midst of your own struggles. You have challenged the world to live as you did, I pray we make you proud.
Please lift this wonderful family up in your prayers. You can see more of Dylan's amazing legacy by visiting his Facebook page Pray for Dylan Trevino 

"Me miss you Dylan." ~ Your little buddy Cohen
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Friday, December 30, 2016

Life in the Undiagnosed World: Our Journey for a Diagnosis

“Take him home and try to give him as normal of a life as possible.”

What is normal? For one extremely, amazing four-year old little boy named Cohen, normal, means absolutely nothing can enter his body to nourish him. He survives solely on nutritional life support. It means being hospitalized for low grade fevers, extremely aggressive medications to combat infections, and being confined to an IV pole everyday. Normal, means his time outdoors is limited, no swimming, or rough little boy games. It means, leaving the house with a heavy backpack which contains a large volume of infusing fluids. This is Cohen’s reality and he deserves a better normal.

This brave little boy’s entire life has been full of invasive procedures and hospitalizations. All attempts to feed and medicate him through his digestive system have failed, ending with violent vomiting and internal bleeding. His body can only tolerate ice chips, which must be vented back out of his stomach through a gastric tube. Due to lack of motility, even small amounts of water can cause hours of painful episodes where he screams, begging for help. An extremely large colon and intestines are another source of his stomach aches, requiring continuous venting of air pressure from his belly to reduce discomfort.

Two years ago, Cohen’s growth and development reached a critical point and his doctor placed a central line (permanent IV) in his chest. It is through this line that Cohen receives TPN (total parental nutrition). His daily caloric intake is measured through blood draws which ensure all of his nutritional needs are being met. This medical nutrition is administered through 24 hour infusion, seven days a week. Without this life sustaining medication, Cohen could not survive.

Cohen’s body is in a constant state of inflammation and any illness can send his immune system into extreme overdrive, shutting down organs in its path. Cohen recently had emergency surgery to remove his severally inflamed gallbladder which was dangerously near perforating. In 2016, he went into acute liver failure from an infection that progressed quickly, wreaking havoc on his little body. Therefore, even low grade fevers must be met with aggressive medications to prevent extreme inflammatory responses and sepsis. Since he becomes ill so quickly he must be transported by air. Cohen's medical team is six hours from our home and it would be to dangerous to drive that distance during an acute situation.

Severe food/medicine allergies and intestinal failure are just a facet of Cohen’s illness. His list of symptoms and diagnosis cross over into every system in his body. Genetic sequencing revealed two additional diseases, Familial Mediterranean Fever (FMF) and Factor V Deficiency (bleeding disorder). However, Cohen's physicians do not believe these diseases are his main illness. He has also been diagnosed with dysautonomia, which is an umbrella term used to describe a lack of communication in the autonomic nervous system. For Cohen, this means he has fatigue and issues with temperature regulation, making it challenging for him to be outside. It means he screams in pain when touching snow or sweats profusely in warm temperatures. Other evasive health issues include; antibodies in his platelets,  pancytopenia (all blood systems low, making blood transfusions and iron infusions necessary), hands and feet turning blue, chronic pancreatitis, as well as malacia in his upper and lower airway and nodules on his throat and vocal cords. 

Normal for Cohen means heartfelt conversations with amazing doctors which begin with, “I know you’re going to ask me some really tough questions that I am not going to have the answers for, and I am going to feel awful about it.” It’s hearing the words, “Everything we try for him is experimental at this point.” Normal, is not having a plan for lack of a diagnosis.

Our team of care givers includes gastroenterology, hematology, pulmonology, immunology, ENT and rheumatology. Although, this is an amazing team of physicians, at one of the top children’s hospitals in the world, they don’t have a name for Cohen’s illness. His care is coordinated between all of these services and their resources, but they are limited by the boundaries of modern medicine. 

Without a diagnosis, we have no prognosis or plan of care. Our best hope is to keep him as well as possible. For now we simply pray that the extreme measures used to nourish him, do not eventually destroy the same organs they are currently keeping alive.

Physicians have no more medical intervention to offer him. No more treatments. No better plan. We find ourselves with an unclear picture of Cohen’s future. Currently, our entire care team agrees that Cohen’s illness has yet to be identified by science. 

What does all of this mean for Cohen? We wait, hoping and praying that the science of tomorrow will arrive today.

When Cohen’s disease finally gets a name we will have hope for a better treatment plan and the possibility of a cure. For now we simply pray that our story connects with individuals who hold the possibility for answers. Unfortunately, until that day arrives he will continue to be a member of the undiagnosed world and remain on a journey for a diagnosis.

“Take him home and try to give him as normal of a life as possible.” The ugly truth is although we are frustrated and hurt, we know these words come from well-intended and equally frustrated physicians, not because they want to deliver this kind of news, but because they have no more options at this point.

This is Cohen’s normal. My question is, “How can we make it better?”

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