Wednesday, July 24, 2013

And, away we go!

These friends will have to say goodbye for a few days
Today we leave for the CHARGE Syndrome conference in Scottsdale, AZ.  There is a professional day on Thursday, then two and a half days of parent sessions.  We will undoubtedly learn a lot about Ronan's little world, and will meet a lot of families and professionals who "get it". I have been both looking forward to and fearing this event for quite some time now. 

It took me a solid four months to start to see out support regarding Ronan's CHARGE Syndrome diagnosis.  During those first four months, I could hardly believe what was happening and that these were our lives.  It seemed surreal to hand my son over for open heart surgery.  What parent has to do that?  I kept thinking that we'd see just one more doctor/specialist/therapist who would fix everything, or some miracle would happen and Ronan would be better.  During these months, I also carried a lot of guilt, wondering if there was something I did during my pregnancy, some toxin I was exposed to, or something I could have done to prevent this from happening to Ronan.  I'm not sure that will ever go away even with everyone saying there was nothing we did wrong, but I rest easier now about it. 
At 6 weeks and 23 months

I remember the turning point for us.  Paul and I were sitting in the cafeteria of Children's Hospital LA.  We were looking around at the families there, and talking about the children we saw there.  We both grabbed each other hands.  I remember Paul looked at me and said, we can do this.  We can do
this together.  And from then on, that was our mantra:  

We can do this together.  

That was when I slowly started to transition from researching CHARGE to seeking out support.  I joined groups for CHARGE.  I joined groups for various aspects of Ronan's diagnosis, like groups for congenital heart defects, facial palsys, colobomas, and others.  I found great comfort when interacting with a group of people who just fundamentally understand the emotions of the unknown when it comes to a child's health, and who get the frustrations, pain, and sadness that can come with watching your child struggle.  They also understand how amazing even the smallest improvements and milestones are, and celebrate appropriately.  I am so looking forward to meeting these families who have supported us and cheered us on, especially in the early months. 

What does make me nervous, however, is the amount of information at this conference.  One way I have coped with Ronan's diagnosis has been to compartmentalize what I need to research and think about.  I pretty much worry about the next step for Ronan from a gross motor, fine motor, speech, and overall developmental standpoint.  This conference will force us to consider further down the road.  While not a bad thing, it certainly will be new ground for us. 

Here's to four days of intense learning, and to meeting some of the people who helped us transition into the family that we are today!


  1. You can do this together! We are praying for you guys. Always know how much you are loved!

  2. Can't wait to hear how it goes!