Sweet encouragement from a friend-

“I’m so glad things are going well, Lisa. I know it’s been a long road. You’ve handled it all with grace. I’m not sure I could do what you’ve done.”

“I appreciate your sweet words, but you most definitely could. I believe we all do the best we can when faced with challenges. Grace? I’m not so sure about that, but thanks for saying it.”

I’m not sure that ‘grace’ is a word I ever thought of to describe this journey. Fear, disappointment, resentment… these were our closest companions for years. Waiting for the next crisis became our normal. Our lives rotated around new doctors. The ‘best’ in their field. Doctors were talked about like the newest and coolest cars. “You must see this one. He is the best.”

Passing familiar faces in waiting rooms. These faces became our friends. Moms and Dads that knew all too well our struggles. They saw behind our smiles and neatly dressed kids. They saw the hurt we carried, because they carried it too. They also, looked longingly through the glass barrier of life that we ASD parents sit behind. Watch the kids playing; having a party; inviting friends for a playdate. Listen to the parents complaining about too many friends at their house or the cost of sports equipment. The things we had dreamed of for our child, would now be a struggle if they ever got to have them. We are busy teaching them to speak, eat, walk, play.

How strange is it to have to teach a child how to play? The therapists would come and go. They would teach our crying son to play and act, dare I say, more normal. Days turned in to years. The crying and fears weighed on us. So we learned to be selective. We will only deal with stress if it is a life skill or will help him grow as a person. You see, our stress bucket got filled a long time ago.

Then came 7. I’ve written about it before, but at 7 year 2 days old, Ethan told me for the very first time- unsolicited- that he loved me. The way he looked directly into my eyes, the way he said it and the true emotion behind the words. In that moment, I knew that things were about to change, for the better. I’m so glad that Freddie was there in that moment. The 4 Cliffords all shared that together. It remains one of the most treasured moments in my life.

Ethan is now 13 (almost 14) and Ansley is 9. Ethan’s health has had its ups and downs. He has a seizure disorder now, but it is under control. He is happy for the most part. He has his stressed out moments (days) but they are also manageable.

Ansley, our comic relief, continues to light up our days. From the day she was born, she has been our joy in even the hardest of times. She is my little helper and Ethan’s biggest fan. I jokingly refer to her as ‘little Mama.’ She helps direct Ethan and challenges him to do his best. He doesn’t always appreciate her instruction, but they work it out.

Ansley is a hard-working lady. She tries her best with every thing she does. She gets frustrated when she doesn’t do as well as she thinks she should. I remember one conversation where she was very upset about not doing as well as she had hoped. I explained to Ansley that being her best is always enough. She replied “But I was doing this for me and Ethan so I should have gotten it perfect. He was counting on me.” What?  I had no idea what she meant. She explained that sometimes she decides that the task at hand, she is doing for her and Ethan. That if she is perfect, it would be like she and Ethan both got the top award. Woah. So we had to have many conversations after that. I had never heard of a sibling taking on the responsibility of the disabled sibling. I now know it is common. Sort of like survivors guilt. “I have the abilities you don’t so I am obligated to do this for you as well.”

Ansley now knows that she can dedicate an achievement to Ethan, but that it’s not fair to pressure herself into performing to compensate for him. I think she gets it. I sure hope she does. I will keep repeating it to be sure.

So, back to the beginning. My conversation with a precious friend about the long road and grace. Yes, we have been afforded much grace. God has been better to us than I could have ever dreamed. Beauty from ashes. The promise of catching our tears. I know all of this to be true. I also know of celebration and the dawning of new days. The ASD glass to the world gets clearer and thinner. We do have moments to celebrate. Ethan and Ansley both work very hard and earn their own recognition for a job well done. And yes, I will continue to shout those accomplishments from the rooftops. Not because I think my children are better than anyone else’s. I shout it because the long road to this destination was never guaranteed. When we have something to celebrate, we do it! We are overjoyed at the good that God has allowed. All I can say is that if it is too much for anyone, turn your head from our direction. The cheering is for the Clifford 4 and those who get us. The cheering is for our merciful God that has been so good to us.

So Pardon Me while we celebrate grace.