Glass Children

Ever since we found out about Niko's diagnosis, I've been focused on providing Niko with the best care, the most love, the best balance of protection and exposure to life.  I've been focused on creating memories, documenting moments, and trying to create meaningful keepsakes that will live with me long after Niko leaves me.

I have put a lot of my energy into what feels like a mission – a mission with the objective of magnifying and celebrating Niko's life.  But during this time, I have a counterbalancing concern. 

And that is Mila.  This concern is not only about giving both girls equal attention.  It’s way beyond that.  Any parent with multiple children, in which one is disabled, knows exactly this dilemma.  How do I protect the healthy one?  How do I inform her?  How do I prepare her?  How do I explain that Niko requires greater attention?  How do I express that "not now" does not mean "not you"?  How do I prevent sibling guilt?  How can I avoid ruining her life?    

I did a quick search for sibling guilt or survivor guilt and I found this incredible talk on TED.  This woman is a surviving sibling.  She is among a group that is sometimes called, “glass children”, children with siblings of special needs.  I’ve never heard of this term before.  This talk is fascinating.  She talks about her childhood experience as the healthy sibling, the guilt, the frustration, the expectations, the devastation.  She also talks about how one should treat the "glass children", how to impact their lives in a positive way.            

Side note, ever since I have noticed a change within me towards anger, I have become less sensitive.  I'm no longer the emotional mess that I have been for the past year and a half.  I can now have a serious adult conversation about Niko without wetting my clothes with tears.  I once read a quote somewhere, "I do not want to cry.  Because once I start, I'm afraid that I won't ever stop."  That is what happened to me, literally.  I used to be someone who just never cried, and then suddenly I could not stop crying.  It's been one continuous cry for one and a half years.  I went through my days on the very verge of tears, and anything triggered the release of the dams.

Am I going through the classic stages of grieving?  I don't know, maybe.  First stage:  Denial.  Second stage:  Sadness and Crying.  Third stage:  Anger.  I don't know what's next.  I have not read that handbook.  But what I do know is that this third stage is much better than the second.  Self control has been reintroduced, and I realize that it's been sorely missed.  I even made it through this Ted video without a single tear.

Here are just some of the many ways Mila performs as the entertaining sibling.  Niko is so lucky to have Mila.