It seems the human race was born with a desire to label, to classify. When you meet someone, the first thing you do is ask their name and offer your own. While pregnant, everyone asks if you've picked a name. Then they have to tell you how they feel about the name. We agonize, as soon-to-be parents, over our future children's names. We name our pets. We name our teams, our events, our families.
So its not surprising that we gauge everything by what the name tells us about it. We form support groups, based off the names for the things that ail us. But what happens when you have no name for the thing that has taken over your life? When you don't fit into any of guidelines that our world operates on?
You become a Zebra. You deal with the fact that people often can't acknowledge what they don't understand. We've seen the look that passes between doctors in the ER, the ones who haven't witnessed our journey for the past 23 months. The look says that we are crazy. Its often a young doctor, who still believes that those above him know everything and have magic healing powers. He doesn't say anything of course, but I know the look. Its the one that brings my blood to boiling.... the one that makes me want to scream, "Dont you DARE refuse to acknowledge what we have been through."
It started in the ER in December 2010. Addison hadn't pooped in 2 weeks and was distended, vomiting repeatedly and screaming in pain for hours. For about the 3rd time in a row. I explained how she hasn't pooped on her own at all for weeks and the doctor took notes. As he walked out the door, someone asked him what was going on with the baby. His reply? "Oh, just a little constipation." I'll never forget that moment. It was the defining moment when a fire was lit somewhere inside of me. A fire that burns stronger than ever today...
Being a Zebra means trying to make people understand that its not a one-time illness and the rest of the time they are just normal kids. It's so far changed and consumed their entire lives. Hospitalization after hospitalization. Clues but not answers. What should be playdates are hours spent at therapy. Instead of family time, we have bowel management time. When my daughter cries out for me at night, there are so many wired and tubes attached to her that I can't snuggle her and walk around the room to soothe her. Its changed every aspect of our lives. Our family vacation? A trip to see a mitochondrial disease specialist.
So whats in a name really? Everything - everything, except my children's beautiful spirits. The one thing that remains untouched by having or not having a diagnosis. Truly that is our saving grace in this. God has blessed them with remarkable resiliency and the ability to teach us that life happens in God's time, not in our own. Everything that is tangible on this Earth is tied to a name. And not having one, has turned out to be a struggle greater than I ever imagined.
We own a home, 6 miles from here. Those six miles, meant the difference between thousands of dollars because we have no diagnosis. Coverage for those gray areas we live in, varies by state. So here we are, 6 miles from 'home' because of some stupid wording written by someone who has never walked in my shoes. There are so many resources in this country for people facing all kinds of diseases and conditions - but without a name, we are turned away often. Insurance is a huge battle to keep the kids in therapy. They want to know WHY they are struggling. ("Get in line!" is usually what I think to myself!)
All those support groups you see? You don't fit into any of them when you are a zebra... its been an incredibly lonely journey for Adam and I trying to understand where we as a family can fit in - who can understand what we are going through. We've struggled to attend church despite the fact that we would love to go, because of the logistics of taking two kids with special needs and all their gear. Many friends stopped calling - we cant go hang out, catch a movie, throw the kids in the car and meet at the park on a moments notice. There are those who remain loyal to us and it means the world to us to have them in our lives. Thankfully, because of all of you, we've found our very own support group. I can't thank you enough for the uplifting messages and prayers, they are truly a source of solace in hard times.
A doctor earlier this year had the guts to ask me why I want a diagnosis so badly.
I answered him by saying that without a diagnosis, I have no way, at the end of the day, to promise myself that I did everything I could for them. Thats beside the obvious hope that there may be treatment or better opportunities for them! How sad would life be if I didn't have faith that God will provide an answer one day? I don't want to live like that and I don't want doctors treating her who don't care if they figure it out or not. They are way too strong and beautiful for anything less.
This is Addison ONE year ago today at 11 months old.
This is Addison now.... 14 pounds bigger.
We are going to keep moving forward - its how we got this far!