A Beautiful Resilience

Update on Zeke by my daughter Mikka:




Okay, here we are, nearly three months old. To describe our journey thus far as a roller coaster is an understatement. Zeke has made his point that he does things on his terms, and has fought a tremendous fight with beautiful resiliency, we are in awe of this incredible little human.


In this front row seat to both the most frightening and amazing journey of my sweet boy has forced me into a space of self growth. Having a child that suffers with any kind of illness or condition is an indescribable pain that forever changes the person you are. Spending all my time with Ezekiel is the greatest pleasure of my life. His infectious, joyful smiles bring a lump to my throat. I find joy in the fact that I have been able to create a life for this little boy that is safe and makes him happy. I feel that is my duty as he is living a life I will never understand or relate to. All I can do is stand idly by while he does all the heavy lifting.




I find myself in the monotony of our routine, then out of no where the severity and delicacy of his life smacks me in the face. I return back to that scared, helpless place of fear that I lived in for most of my pregnancy. There is not a day that goes by that I don’t live in the joy of getting to be his mommy, his safe place. I soak up the moments of normalcy as I missed out on so many the first 36 days of his life.




As we look to the next surgery, there is a sense of excitement as we have been informed that life is able to be a bit more normal. BUT, there is also fear, so much fear. We are familiar with what we are facing because we went through this once already. The difference is this time we know him. Like really know him. Knowing that I once again will have to carry Zeke back through those doors to the operating area of the hospital and physically hand him over to a nurse. Knowing that he will once again be sedated, intubated, his chest cut open, his heart altered, and all of that recovery, again. Breaks. Every. Single. Part of me.




So for now I will live in his smiles. Live in the conversations we are starting to have since he is now cooing. Take all of the kisses and snuggles he will allow. And enjoy him and his beautiful resilience.