Where everyone knows your name...

Yesterday my sweet giraffe boy was released from the hospital. He was admitted a week ago Friday with pneumonia in both lungs. It had already been a rough week. He had been wracked with fever and overwhelming amount of secretions. I won't go into the finer details, but let's just say that there was snot coming from every orifice of his cute face. This was our first hospitalization in about a year. It was both strange and comforting to be there, walking familiar halls that I have walked so many times before.

I have always said, "If you're at the hospital, you don't want them to know your name, but when you have a medically fragile child, you want to go to a hospital where they know their name." That is Randall Children's Hospital. Javad is well known here to both nurses and doctors alike. They marvel at how big he is (almost 16) and how well he is doing. Some were honest, this time, that they never thought he would make it to 16. It's both refreshing and frightening to have someone, especially those in the medical field, say this.

As I sat in his room, listening to the ventilator whoosh and the occasional beeping coming from the pulse oximeter, I think back on the years that we have survived, how so many times Javad walked the line between life and death. I think about the doctors and nurses that have been along this journey...people who have "seen" Javad...seen the boy inside the body that was holding his spirit hostage. They have smiled at him, talked to him, held his hand. There have been baths and hair washes with loving hands, gently massaging his body and scalp. His smile is what makes it all worth it. Eyes closed in a blissfully serene state, soaking in every movement, every touch to his body that can't move on it's own.

Javad is a unique being. I think about him and feel lucky to be his mother. He has taught me so much about love and acceptance, lessons that I will need to practice for lifetime. He has the ability to connect with others, although his "I'm asleep eye close" is a pretty epic ignoring method. It has been hard. My children have had lessons that probably they didn't need to learn, ultimately the stress of the years has caused the crumbling of my marriage. It is hard to maintain these when so much energy has gone toward one boy. Don't read into this...I am not sorry to have him...I am blessed. Maybe one of the lessons to take away is finding balance.

As I look back on this last week at Randall, I am grateful that we live near a hospital that has helped my boy so much. Doctors and nurses who have continually looked for better ways to improve his life. Each one of them, down to the women who runs the coffee cart ("Wow...we haven't seen you in awhile, maybe a year?"), work to make life better and more manageable. If you have to spend time at a home away from home...it is definitely better to be at a place where everyone knows your name.

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