The Hole in my Heart...

There are days like today when the unfairness of the last four weeks comes crashing down...the frustration and unfairness of what is happening with Javad. I feel like the last thirteen years we have fought for him...fought to keep him alive, fought to give him the fullest life possible, only to have that ripped away those Mondays ago.

I am trying not to be angry but the hole in my heart is huge. I love this boy deeply and without fault. He brings me such joy. I would give anything to see him smile, hear him growl. Each moment that I watch his little body, twitch with out control...his nerves are waking, muscles starting to make connections. I am looking forward to watching this happen, but feel sad that I cannot help him fully navigate this next phase of his life.

I will be here, we will all be here, waiting, helping him move forward, get stronger, but the pace that this happens will be slow... I am sure excruciatingly so.

The hole in my heart is large...the desire to scream at the universe about how unfair everything is is high. There has been so much work...labors of love pushing the life of our sweet boy forward. We have taken the challenge  of years past, laying the foundation for more, but for now...I just need to sit here with the hole in my heart.


  1. Oh Shannon, I am so sorry. There are no words that will be right but know that there are a lot of us holding you in prayer, light and energy. Much love being sent your way.

  2. I'm so sorry for your pain. It's hard to struggle and struggle to help the people you love. I can only hope that things get a little better each passing week and the hole in your heart stars to heal.

    A to Z Co-Host S. L. Hennessy


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