A political break...time to talk about giraffes

This week there have been many things that have happened. I know that since yesterday much has happened in Trump-land...questioning a federal job and going on vacation. Tonight I decided to do something different...ignore the news. I am taking a break and focusing on something else...Javad, my little giraffe boy.

Many who read this blog know about my son, Javad. He is fifteen and is affected by a very rare musle disorder called Myotubular Myopathy. He is a gentle and wise soul, one who makes me a better person. It has been a long journey with him, spending a lot of time in the last fifteen years in the hospital, sometimes barely surviving. It has been a emotional challenge for all of us.

I am lucky that I have three other great children who, although the times were rough for them too, have loved their little brother unconditionally. It's hard to be a sibling of a chronically ill child...all the focus is on them much of the time. In many ways it is like living two lives, the "normal" life where you go to the movies and other activities, then the "medical fragile" life where so much  depends on nursing and Javad's health.

Almost two years ago, Javad had a massive seizure that almost took his life. It was the beginning of a new time. He was in a coma for almost six months. Since the seizure, he has lost almost all function in his hands and arms. We are now on the slow path to healing. When you have a medically fragile child, life is in moments not hours. It is an exhausting and challenging life. You are constantly on guard, waiting for the next event. You dodge PTSD due to all the life and death decisions that have to be made. In the last fifteen years, I have gained an incredible about of medical knowledge...more than I ever imagined. I can talk as equals with many in the medical field. It's a life I never planned for.

Maybe you know someone with a life threatening disease or someone who's child has been affected by some disease. I beg you to find it in your heart to be supportive. Find a way to support them because they often have nothing to give. Every ounce of their strength is being put toward the most basic needs of themselves or their child, leving nothing else for others, including themselves.

Life is often held together by a thread and that invisible thread is often holding things together. It doesn't take much to rock the boat. A small change can throw things into chaos. It is a balance that is easily toppled.  Patience and kindness goes a long way. Supporting those who can't ask is a gift of kindness and love.

Today I am not focusing on Trump-land but rather the sweet smile of a Giraffe boy who stole my heart more than fifteen years ago. Sometimes those who are the quietest are the ones who are the most powerful. My sweet boy has impacted so many and I feel lucky to be his mother. #giraffestrong


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