Another early morning of packing the car up to go see a new doctor. Goldfish, M & Ms, sweet tea….check! Homeschool books, iPad…….check! Miss Ansley is off to another day of school. We assure her that if we are late getting back from our doctor trip that Miss Stephanie will pick her up. Let me stop here and say- I have been blessed with the most amazing people coming into our lives. As we move from place to place, we always meet sweet people that are our “back up.” Because of friends, we can do what we need to do for Ethan and not worry about Ansley. Thanks Stephanie! Your help means the world to us ❤

So hugs and kisses for Miss Ansley and we are on our way. As we drive, Freddie and I are able to discuss our plan. What will we ask? What do we need to be sure to share? Did we complete all the paperwork? Did the referral get put in the system correctly? Well, of course the referral was not put in correctly! That is just how it is sometimes. So we drive along, discussing everything as we answer calls trying to get this referral straightened out. Yes, we were driving out of town to an appointment we weren’t sure we could actually go to. But we had faith, so off we went. Thankfully the issues were resolved by our wonderful doctors. Now back to working out the details with Dad.

We got to the appointment just in time. We raced in with our bag of tricks – snacks, paperwork, etc. Arms filled, we looked like we were moving in. We never know how long an appointment will last so we have learned to go prepared for anything.

A couple hours later and thankfully only one test, we were leaving. Long story short- they bumped us back to the referring neurologist. If no news is good news, then we got Great news…lol.  The genetics team could not find any metabolic/genetic markers to identify anything. So Ethan’s migraines, cyclical vomiting issues remain a mystery. But that is our pattern. Ethan is a mystery. We have heard that from almost every doctor Ethan has seen. Some issues can be explained or treated. Other issues cause Ethan to be passed from doctor to doctor.

As we drove back we talked about how Ethan is very lucky. He has progressed and continues to. We discussed how thankful we are for all his progress. Yet we are still looking for answers. I think we always will. We don’t know how to just be ‘ok’ with things because his life is better. If there is any chance of lessening any of his physical issues or his autism symptoms, we will gladly pack up and start driving.

Amazingly through everything, Ethan is happy. He laughs a lot and generally has a positive disposition. He gets overwhelmed but bounces back quickly. We understand some of the triggers for his anxiety and help him the best we can. But we can’t control everything in life, nor do we need to. He needs to learn coping skills. Life isn’t always easy on him. We just do the best we can to help him cope.

So we drive in to pick Ansley up, just in time for the 9/11 Remembrance Ceremony. Wow- good timing there. We walk around the school and speak to many parents and kids. By the time the ceremony starts, Ethan is ready to go. I explained that we need to be there for the ceremony and we could go right after. For a few people, the ceremony brought tears. It was a nice tribute and experience for the kids. Well, all but Ethan. He was OVER IT. He was pacing and ready to go. I didn’t understand why he was agitated. We finally got back to the car and he seemed to calm down a little. I asked him what in the world was going on. He shook his head and said “I was ready to be done.” Ok. But why? There were no loud noises, it was a calm and relatively short ceremony. He replied “I do not want any more of YOUR baddddd emotions like that. And all of YOUR, YOUR, YOUR……YOUR *Eye Contact*” He was motioning toward his face as he talked about the eye contact. “YOUR?” Who was he talking about? All of us non-autistic people. He thinks WE are weird. We go to ceremonies to be sad and make uncomfortable eye contact. Of course Freddie and I were laughing so hard at him. He was chastising us for being “Weird.” You know, what you get from Ethan is honesty. He doesn’t have a good poker face. We are working on his ‘social filter.’ But if he doesn’t like a situation, he has a difficult time hiding how he feels.

I Samuel 16:7 – “But the Lord said to Samuel, “Do not look on his appearance or on the height of his stature, because I have rejected him. For the Lord sees not as man sees: man looks on the outward appearance, but the Lord looks on the heart.”

So maybe we are all weird, a little. We go to events we know will make us sad. Or drive out of town to an appointment we aren’t really sure we have. We go to the ends of the earth for the ones we love, no matter the emotional cost. But when it’s all said and done, I don’t want to be remembered for what I drove or where I lived. I want to be remembered for how I loved. I want my kids to remember that Mom (and Dad) were always there for them. I want them to remember that they were our priority. I want them to remember the silly things we did as a family as well as the relaxing walks on the beach. I want Ansley to know that we think she hung the moon and stars. She will forever be our Princess. And Ethan? I want him to remember that while chasing answers, we were searching for ways to improve his quality of life. The search is not for us. In our eyes, Ethan ROCKS! He is our little miracle boy and dream come true. There is the courage of a lion in his 11 year old body. But we know that the lion will snap at us if we require him to make too much eye contact while being subjected to bad emotions.