Wednesday, May 15, 2013

Today is Tuberous Sclerosis Complex Global Awareness Day so I thought it would be a good day to tune back in to writing on this blog.  I didn't intend to take that long of a break; I just fell out of any routine of posting and found it hard to get back into it.  At first I wondered if I should continue it because I do a short little blurb about what's going on in our world on facebook every now and then and sometimes post photos there.  Yet, I realize some people I know and love don't do facebook and never will.  I am not crafty and scrapbooking is just not my thing, so having records of anything my kids do or say is just not going to happen that way. I actually enjoy writing and don't mind using this as the format and I hope for this to be something meaningful to pass on to our kids.

I started this blog not long after Micah was diagnosed with TSC mainly as a way to keep people updated on his progress and ways that they could pray for him. These last 8 years have gone by very fast in some ways.  It has been a tough road for many of those years but we have seen many blessings as well.  There is disappointment with milestones not being met, frustration with not knowing how to communicate with Micah at times, and general weariness of  the realities of him being globally delayed.  There are also lots of joys at seeing signs of progress and development.  There are a lot of smiles and laughter at watching him when he is thrilled at playing in the water or laughing hysterically because he is enjoying riding a horse.  Sometimes it doesn't take much at all to make him laugh and I love that.  When Micah was diagnosed at 5 months old, Dr. Raja (our wonderful pediatric neurologist in San Francisco) asked how we were taking the news of him being diagnosed with TSC, I remember saying through tears "He is still a gift, no matter what the diagnosis."  I still believe that and always will.