Emotional Rollercoaster

Over the next couple months we went through the motions and emotions and hit each stage accepting our son's condition (still going through a few stages today).  Our family and friends continue to be there supporting us with each and every step of the way and for this we will forever be grateful.

We hopped online and researched for weeks (I don't think this step ever ends).  I joined the Listserv which is a group of people who are all dealing in some way with ACC (this is an email based group but also a Facebook group).  I found blogs and brochures and websites to help us understand every single detail of this newest diagnosis.  Just google and/or Youtube "Agenesis of the Corpus Callosum" "blogs about ACC" "NODCC"  "What is ACC" "The University of Main and ACC" "Dr. Sherr" "Angels around the world" "Magic Foundation" and you will get to all the information you have ever wanted to know about this condition and those coming together to educate and support one another with this condition.  We got advice and emails sent to us by many people who have been there and are living with a family member (or they themselves) with ACC. It is not as rare as the doctor originally told us and it is not something to just push aside as nothing to worry about like the doctor originally told us.  (Obviously we are no longer seeing this particular doctor and wish to one day to have a very open discussion about his plain lack of bedside manner, education, and misguided direction regarding this diagnosis.)

We then filled out the many packets of information to get Noah started with our states Early Intervention Program.  We live in Utah and it only took us one phone call to have a case worker sent to our house to evaluate our son.  Noah was barely three months old when we finally did this and I wish we would have done it much sooner.  The case worker was wonderful, kind, gentle, and skilled.  He was amazing.  What we thought was him just holding and cuddling and playing with our son was actually him evaluating his needs and figuring out all sorts of stuff about our son that we did not even know.

You see, Noah is our first, and like all first time parents we are just learning how to do pretty much everything when it comes to newborns and parenting.  First baths, diaper changes, nursing/feeding, swaddling, holding, and even putting them to bed.  Like any parent we of course blame ourselves if we miss something that we think we should have noticed earlier. Which of course leads me to my next post......Silent Aspiration!!!!