End of the Pity Party

After receiving the diagnosis last Friday, I thought that I would stop posting to this blog.  I wanted to do this blog for Nikola.  Therefore I didn't see the point anymore.

After shedding many gallons of tears, I've decided to end this pity party.  I'll continue to do this blog.  And I am doing it for Nikola.  I'm not the cheesy sentimental type.  But I think everyone gets to be emotional and sentimental at least a few times in their lives.  So here's my cheesy line.  This blog allows Niko to be heard.

This blog will be shared with our families and closest friends who would like updates on Niko.  I know a lot of people are asking about Niko's condition and we haven't shared the news with anyone other than family yet.  I can barely speak due to the hard lump in my throat.  Each sentence takes about five minutes to complete.  So rather than repeating the painful monologue over and over again, this blog is easier for me and Niko.  Niko doesn't like it when she's drenched in my tears, and since I carry her all the time, she cannot escape the waterfall.

So this is the end of my pity party.  My main focus now is to give her lots of love, the best quality of life we can afford, and make her feel the least amount of pain as possible.  It's also my job to stay on top of all her medical needs and learn all I can about I-Cell.  Most of the doctors we met admitted that they know very little about the condition and have never met any I-Cell patients at Kaiser.  I cannot rely on them to know all the answers nor foresee the exact direction of the I-Cell progression.

I'm also going to enjoy this time when she is still, more or less, a "normal" baby.  She still looks pretty normal if you are not studying her specifically for signs of I-Cell.  I'm going to enjoy the interaction with strangers while they are still giving us looks of awe, rather than looks of pity.  

Ironically, I'm now fully enjoying and appreciating motherhood.  Life has a weird way of teaching perspective.  The responsibility of raising a Nobel Prize winning overachiever has been lifted off me.  Conversely I don't have to worry that she will become a serial killer one day due to my bad parenting.  Sadly but plainly, because I don't have to worry about her future I can focus on making her smile by reading books in my best character voice.  I can smother her with boob time without thinking that I'm spoiling her.  I can focus on the current moment without any nagging worries of the future.  I'm enjoying being a better mother to Mila as well.  I think we're having more fun already.

Today Niko has given me some no-cry awake time.