Death

I have had many people reach out to me after my Facebook post to ask if something has happened with Alex. The short answer is no. The longer answer is something has been happening for eight and a half years.

Imagine being a six year old boy who spends most of their time in the hospital and doctors appointments. Imagine having a disease that you know the name of, but not a whole lot more. Imagine having a best friend, a brother of sorts who has all the same medications, all the same tubes, all the same doctors and all the same times in the hospital. Imagine that best friend dying one night while you are in a room just a few doors away. Imagine knowing at 6 that your disease could kill you. Imagine questioning why your doctors "let" your best friend die. Imagine the grief, but also the fear.

Fast forward three months and you contract an infection just like your friend and now you are fighting for your life. Imagine every week for  8 years sitting in appointments where doctors talk about treatments and surgeries and your life always with the undertone that your life could be short. Imagine being scared every time you have to go to the PICU, because that is where they send you to die.

Imagine knowing that the same line that sustains your life and provides medications and nutrition is the one that can and probably will kill you someday.

Fast forward again to the teen years where everyone is starting to talk about growing up and the future, but you don't know if you have a future. Imagine thinking night after night about leaving everything and everyone you know and love.

So no nothing has happened...we are living a life that most people cannot begin to fathom. We do our best to CHOOSE JOY and use our story to shine a light on GOD and the good in this world. But don't think for one minute that because we put a smile on our faces that this disease has not robbed us...it has caused us heartache and pain, fear and anxiety. It has stolen my son's childhood.

Pray for my sweet boy, his precious sister and for me. That I have the words to provide comfort and the strength to navigate each day as a mother in a life no one would choose.

Ali