I am convinced Jesus disguises Himself in children with Special Needs. Watching them is like seeing His reflections sparkle across the day. I used to be angry when people would look at our daughter with pity or disgust, afraid of something they don’t understand. Or the parents who pull their children away from ours at the park because they don’t want their child to catch Zoey’s extra chromosone. 9 years into this Brutiful ( beautiful and brutal ) journey I now pity those people . They are missing out on such a magnificent moment to see what I believe the true love of Jesus is really like. You see Zoey doesn’t understand race, she doesn’t understand religious differences, political differnces, she doesn’t care if you are in a wheelchair, missing limbs or unable to speak to her. She only sees a soul and she loves fiercely regardless of how you see her. She forgives quicly. I am always taken back by how quickly Zoey responds to someone who is hateful to her….she marches right back up to them and still wants to see if they will play with her or she can help them. That trait blows me away. Her momma has not even come close to mastering that. If you hurt my feelings or especially my child I am slow to respond with the same enthusatic resolve that Zoey has.
Zoey woke up with a fever today. In most famalies this is not a big deal. In Zoey’s life everything is a big deal. At 2 years old she had open heart surgery, while in surgery they found out that her liver was cirrohissed. We now know she has Alpha 1 Antitrypsin Disease, meaning her liver can’t process proteins as it should. At 4 years old Zoey went into Septic shock and every organ in her quit. Every organ was on life support. She was put into a medical coma so that the blood could focus only on her brain and heart. Blood was being pulled out of her and new blood inserted, kidneys were on dialysis, lungs heart ..every organ was on support. She had a 15% chance of making it. Fast forward, she defied all the odds and today is 9. We now know from that episode that Zoey has Funtional Asplenia. Meaning she has no functioning spleen. She can’t filter germs like most…so now she takes 2x dialy penicilin as a substitue immune system…
Once you go through an experience like that , you don’t sleep anymore. You are constantly listening…i wouldn’t say in constant worry but in the back of your head your mind is always ” on ready” with a hospital bag fully stocked ready at all times.
For some reason today Zoey’s fever sent me into a minor tail spin. Things have been “so good” for such a decent season of time that a fever out of no where caught me off guard. She went to bed just fine last night and woke up this morning radiating heat. The day she went into septic shock she had gone to school that morning perfectly healthy and happy and in what seemed like a split second her body was covered in tubes, iv’s and machines making her body work. When I got home my fears compounded as she was throwing up.
You see there is always now in the back of my mind this constant fear…is today the day the penicilin doesn’t work properly, is today the day her liver fails, one thing we are on alert for due to her increase in cirrohsis is Hyper Portal Tension. She would just start throwing up large amounts of blood and we wil know her liver has failed. She is checked every six months for cancerous tumors caused by her cirrohsis.
Some days I handle this all so very well. Not in my own strength. I rely on my “living hope”. No one is guarenteed a set amount of days. Some people only get hours, some days and some never make it out of the womb. What are you doing with the ones you have been gifted. You see I have learned that with Zoey. Health is a gift. And Zoey is a gift, she is on loan to us from someone who loves her even more than her daddy and I ever could, but man thats a hard thing to imagine, someone loving her more than we do.
This one little life who has taught me so much about Jesus and His love and how to love. She is proof that you don’t have to be an elequont speaker or do all the right things to reflect Jesus, all you have to do is Love