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.

your photo name

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.

your photo name

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.

your photo name

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
your photo name