Saturday, July 26, 2014


      Before I settled back into the daily routine of life, I took some time to reflect on the past five days of an amazing experience: my family’s first CCA Retreat in St. Louis, MO.   I have seen all the Facebook posts and pictures over the past few years of previous retreats, and have really wanted to go, but for many reasons I have been dragging my feet on planning this trip for my family.  Some reasons were the timing of surgeries, Steve’s work schedule and being able to take off the time that the retreat was scheduled, but also it was my fear of the unknown.   Apprehension seemed to have kept me from choosing to register, mostly because I didn’t feel I was ready.  I knew that attending a retreat like this might force me to face and relive some emotions all over again and was worried that it might not be what I expected, or wanted from this trip.  Who wants to go on vacation with the possibility that it might turn out to be depressing and emotionally draining?  Luckily, this retreat was quite the contrary!  And now that we have finally gotten the opportunity, and made the choice to be a part of this journey, I feel that my life has been forever changed.  So what do I take away from this experience?  I take away the sense of acceptance, being part of another family, a much bigger family with delightful people who have “walked the walk”, if you will, and have felt the pain of witnessing their child’s surgeries and struggles.  Even though we didn’t necessarily discuss all of our surgeries and experiences with each other – family-to-family, I felt there was an unspoken comprehension of what we’ve all been through.  I thought to myself, “these parents get it…. they have been on the front line, and know what it’s like to hear the constant beeping of the hospital monitors, the needles and I.V.’s (oh those dreaded needles!), the pain management, the turning of devices, the tube feedings, the anxiety, sleeping on those awful hospital chairs (or not sleeping at all), the swelling after surgeries, (I know I’m leaving out a lot of medical events here), signing and attending hundreds of I.E.P.’s, and advocating for your child on so many levels.” This gives me comfort knowing that you truly understand.    Although our social media provides great tools for connecting with others, there’s something to be said about face-to-face interaction, and perhaps this is what makes it so surreal.  As a parent, it was therapeutic to finally connect with people in person who understand where you’re coming from, regardless of which craniofacial syndrome or diagnosis your child has, and getting the chance to discuss not only the difficulties our children have faced or will be facing, as well as the ones we as parents face, but also celebrate the obstacles and challenges they have overcome.  I take away satisfaction in seeing our kids take ownership with confidence in who they are and where they fit into this world, especially as other children who are “like” them, as well as their siblings, surround each other with kindness.  I’m certain that I am not the first parent to point out how empowering the retreats seem to be for our kiddos AND their siblings….to know that they are not alone.   When I asked my kids and husband how they felt about the retreat, this was their response:  Logan (12 with Apert Syndrome) “I actually just felt like a normal guy around here.”  Landon (9) “I had so much fun and I made so many new friends!”  Steve – “I had a great time getting to meet so many new families.  Being able to ask questions and also help by answering questions for others who had younger children was very rewarding.”  I truly feel that this was a pivotal moment in our lives.  Going on vacation is always the highlight of the year, but to take a vacation surrounded by people whom I know I don’t have to worry about the stares, or whispers, or what they are thinking, and just being able to really leave it all behind, is the ultimate.  To sum it all up, I take away a new sense of belonging; and as a first time retreat parent, now I get it.  We do belong! We do have something in common with other families!  We do not have to feel like that family who has problems, with that child who has so many difficulties.  We are accepted!  WE are not alone!  Regardless of the miles in between us, we have made some lifelong friends and I cannot wait until the next retreat when we meet again!  Thank you Char, Annie and Jill for your dedication to serving all of the CCA families, and the many ways that you make a difference in so many lives!