Tuesday, July 9, 2019

Happy Birthday, John



Sweet boy.

A precious part of our family!!

He's our gadget boy. The one who loves to organize. The helper around the house. Electronics and engines fascinate him. He loves to take things apart. 

He has big dreams and tons of ideas. He wants to be a house designer and a hotel manager. He wants to drive a big rig and work on a construction site. He wants to be a mechanic and run a restaurant. 

Dream Big, John!!!

We can't wait to see what the future holds for you!!

We love you more every day!

Saturday, July 6, 2019

Just Like Me

Wherever we go people stare at us.

We are a motley crew with our braces and canes and helmets.

People are forever wanting to pat John on the head, gasp at Mary's 'slam to the floor' seizures and jaw drop at Aaron's arms.

Sometimes comments will be made and questions asked. Why are your arms like that? Why does she wear a helmet? What happened to his legs?

We usually respond with grace, but it's not easy feeling like a constant circus act when we are out and about.

I feel for my sons who are at an age where they are much more self-conscious about their looks and people's reactions.

It's hard on them and there just isn't that much we can do to shield them from the constant stares and comments. 

It's never-ending and something they have to deal with day in and day out.

Except for the last few days.

For three days they got to be around other people just like them.

The annual Arthrogryposis convention.

It was our first time going and we were blessed beyond words.

Aaron could look around and find hundreds of other children and adults who were just like him. John was able to connect with others who were also, just like him.

And for a few days, we got to be out in public and know that the stares our way were stares of joy and excitement as we blended into a world where being different was okay. 

They made new friends and connected with old ones (a pictureful of Reece's Rainbow treasures). 

We found older men they could talk to about all the tricks and adaptation they make so they can live independently. 

We went to different sessions to learn and share and be encouraged. 

John was even able to connect with two friends from his old orphanage. How amazing was that?? 

We saw our doctors and enjoyed talking to them.

We even met a family from the same country as our children. When their son was born with arthrogryposis... THEY KEPT HIM. They refused to give him up. They ignored the doctors and nurses who told them he would be better off in an institution. THEY KEPT THEIR SON!!  HOW RARE IN THAT COUNTRY!! How rare and precious. I hugged her. I thanked them. I know where he would have ended up and it was pure joy to see him with his family. Surrounded by love. They have fought hard to provide for him and he is doing amazing! (Be Real shirt).

Like I said... we made new friends.... hmmmm…..

… although I'm not sure a friendship was formed for little girl... 

She had a rough three days. But we aren't going to think about that right now!

For Aaron and John - they made great memories and already are asking about next year. 

Because hanging with others "Just Like Me" is a rare and precious gift.