A smile that speaks the language of hope...

After yesterday's Doctor meeting disaster, I woke up this morning more determined than ever to get things straight. I was determined to let the doctors know what a train wreck their meeting was. In addition to that message, we were determined that Javad was going to heal. Their presentation could definitely use some refining. They should never (and I emphasized this...), never take away hope from families. One of the docs was totally shocked that this was our interpretation of the conversation, while the other seemed genuinely interested and concerned that the meeting had not gone off as planned.

This was my giraffe mother spirit coming out and giving the flying giraffe kick to medical professionals and letting them know who really knows the littlest boy best. There have been so may years of being told what people believe about Javad, how they see things moving forward, what their opinion is. What people don't know, especially medical professionals who have no experience with Javad, is that he doesn't really follow the rules, he is on his own path, he does things his way, which often does not follow the path that medical professionals feel is the norm.

Today gave us hope...today we got a smile.  We actually got three smiles. They were clearly a lot of work for him. They started small, each of them a half smile that grew into a whole one. I had been kissing his hand when he gave the first smile. When I asked him if he smiled at me, he smiled again. Each smile took work and effort, but for the first time, we saw a glimmer of our boy. It made me more determined than ever to get him back, to continue the fight, to work hard to bring him home.

This boy is our heart, he is a special one, he is our bridge child, the one that connects our oldest three to each other. He is Grampa's "Big Boy," he is the one with a special bond with Grama. He is the one who keeps us all on our toes, the one that has taught us more about medicine than we ever wanted to know. He has allowed us to meet other families with MTM children, he has paved the path for many. His journey is not finished, he has much to do. Today, we got a smile...it is only the beginning...we are now speaking the language of hope! <3


  1. Javad and your family are such inspirations! Here's to more smiles and even some growls ; )
    Mrs "L"

  2. Dear Shannon, we are very inspired by your strenght! Keep fighting you are not alone on this. Together we are strong! Many hugs from another mtm mama, Jennifer

  3. So glad to hear this news. I am sending much love and hope for many more smiles and a return home.


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