Joy and sorrow...one day at a time...

It has been a rough few weeks. Two weeks ago Javad was admitted into the PICU for pneumonia...his heart rate was a 180 for over an hour. We spent a week in the PICU, which for Javad standards is a blink of the eye...the day before the speedy PICU admission we had been a the doctor asking for the possibility of being admitted for intensive rehab. I was prepared to really list my reasons and potentially fight as to why this was in Javad's best interest...we were reaching the point where if we didn't do SOMETHING, we may not move any farther. It was an easy sell...so easy that here we are a week later...in Rehab.

It's been a rough few weeks for our little MTM-CNM community. It seems that there is a rise is heart or seizure related activity. More and more I am realizing that, although incredibly horrible, we dodged a bullet last year. Javad survived and, although we are unsure of all the potential damage, he seems fairly unscathed. I mean, let's be realistic...we have lost a lot. Javad essentially cannot move  and has lost almost all function, but he survived. I try to focus on the good, but it is hard not to feel the loss. Then, in weeks like this, I am reminded how luck we are. Two children lost their lives in the last week. Both had major events that started their decline. Both events were startlingly similar to last year with Javad. There are two more boys in the hospital...both so sick.

We are happy to be in Rehab...even if it sounds funny, I am grateful to be here. Two days in the books and Javad is working really hard. I am grateful and hopeful. I know my own personal sorrow is at times deep, but I also know that I need to have joy to celebrate that we have made it through this year. We continue to be warriors. I continue to take life one day at a time...it is all I can do and , frankly, I am grateful that we have days to take...one at a time! #giraffestrong #mtmfamily #giraffesforjavad

Comments

  1. Thank you for sharing this. I am with you in spirit always. Sending light love and healing energy for your path.

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