Srikar underwent a "redo", as we call it in our hemi community, just 12 days before. We all learned that Srikar was not able to pull through this round of surgery and the complications that followed. Now, his family is dealing with loss, not recovery. As a family would be, our community is devastated. So many are in shock and are shedding rivers of tears for this child and his beautiful family. How could we not? As a close and knowledgeable community, we understand the risks of this surgery and the potential for complications. We all knew in our heads that this would happen eventually, but our hearts often have a hard time following and dealing with that which our heads knew. Complications do happen, but usually our children pull through and make a full recovery. For reasons we can't know or explain, this was not the reality for Srikar.

It is difficult to explain how it is that our emotions run so DEEP for a child and his family that in many ways, we only barely know. And it may be hard for some on the outside of THIS world to understand. Yet, the emotions are REAL and they are IMMENSE. But for this surgery, many of our families would not know each other...would never have had the opportunity to meet or may not have even had a common interest to build a friendship upon. Our families are from all walks of life, from different religious (or non-religious) or spiritual backgrounds, of different political opinion and thought...still, one shared experience called hemispherectomy levels the field for us all and stands out above any differences we might have over other areas of life. That experience is the one that binds us...as friends, as family, as a community. Every day, we celebrate the successes of our children, we pray for each other, we offer comfort to each other through the struggles, we become the strength that another family needs to get through the surgery, we share our stories of hope with each other, new families and the rest of the world. We ARE family to each other. We ARE friends. We LOVE each other. Anyone that knows me, knows how strongly I feel about these families...how much I care for them...how much they mean to me. And I know the feelings are mutual all around. Ask anyone of us, and we'd tell you that we never would have made it this far without each other...that we wouldn't have the HOPE that we do, the STRENGTH that we do, or even the LOVE that we have without our hemi community. It is easy to celebrate the successes of our families and children. And it comes naturally when you offer another family hope or strength to get through a difficult time. Today though, and in the days to come, we do the hardest thing there is to do, we mourn the loss of one of our own. We cry with Srikar's family and wish that we had some magic words to take away the hurt. We know there are none...yet, we want to find them. For his family, but for ourselves too I expect. Those of us that believe in God and a Heaven, know without a doubt that Srikar is seizure-free and well in Heaven....no doubt doing all the things that his body would not allow him to do on this Earth. And for us, there is solace in that. But, how does a mother and father and family know that and rectify it with the fact that they no longer get to see him, touch him and nurture him. I can't imagine the pain and the emptiness that realization must bring. How can anyone that hasn't felt that type of loss? In the end, all we have to offer them is our unending love and support. But we wish there was something more.

So many of us had the great pleasure of meeting Srikar, his mother Lakshmi, and his father Ravi this summer in Baltimore. This is a gift I feel so incredibly thankful for today and one which I am sure I took for granted on some level at the time. I remember seeing his sweet face for the first time in person... after months of seeing it in pictures, which is the norm. It is hard to put into words what that is like...meeting, for the first time, a child that you have come to "know" and love through pictures and the written words of their parents. It is profoundly moving... EVERY time it happens. And so it was with Srikar. I also remember how gracious and lovely Lakshmi was in coming over to introduce herself, Ravi and Srikar to me and my family. It was immediately obvious that this was a close and loving family... and two parents could not have been prouder of their child. They loved and celebrated every success Srikar had...and with this decision to have a redo...they were fighting for his chance to have more successes. Like so many families before them had.

 

May they find peace in knowing that they were doing everything they could to help him grow and develop and experience life, though short it was, to the fullest. May they find strength in this community of ours, and in the communities of each of our families. And may they know how incredibly blessed I feel to have known Srikar and to have experienced, even briefly, the gift of his life.

I can't avoid the obvious...as you may no doubt see in all of this. In April, Jon and I and our family will be where the Potluri's were. We'll be handing our child over for her own "redo". Her third redo to be exact. It will take a great and enormous faith to do it...understanding that everything will be done to keep her safe and to get her through recovery without complications...but also knowing that there are no guarantees. There is HOPE and love and a wish for "more" for her that drives this decision for us...yet there is the fear and the worry of that which is unknown...of that which we have no control. Those were the same drivers and fears for the Potluri's. And that makes this loss hit even closer to home. In reality, it could be any of our hemi families.

Please say a prayer for Srikar and his family today, and in the many days to come. Their home is going to feel empty in a way that it never did before Srikar, as will their hearts. Love, friendship and prayer....that is what we have to give them. May those things bring them some sliver of comfort and peace at this most difficult time.