January 21, 2014

Post 15

With all of Gabriel's challenges, I felt the need to make connections with other families who have children with Costello Syndrome. I have been blessed to be welcomed into the Costello Family Network.  This is an organization of parents and family members who experience the same challenges Gabriel and I face.  Most of these other children are in the clinical study, as is Gabriel. The bonus is that it includes geneticists and other doctors who research the Costello Syndrome.  Every two years a major conference is held so families can meet and share with each other AND meet the researchers from all over the world face to face.  It is a powerful group!  There are only about 300 Costello children in the world.  ( 7 of them are in Texas!).  I actually sold some of my furniture that had done nothing for me other then collect dust, to pay my part of the 8 day hotel bill!  It was worth it! I can't tell you how much this trip meant to me! Two years of feeling very much alone, even though I knew other families were out there.  To actually meet them in person was a life changing event for me.  I have spent many nights staring into the sky wondering how are they all doing around the world.   I’ve often wondered, how do THEY cope? What are their lives like?  Do they fear the worst for their children?  Am I so morbid that I can’t seem to release this fear of my child passing away?  I work at focusing on positive things, but often my fear overcomes me.  I’ve come a long way since the first day I was told that Gabriel had this life changing syndrome, but I still have those moments and maybe others do too.  It’s something that is really hard to talk about unless I'm talking to someone who shares my fear.  That thought that just dwells in our brains always. The idea that Costello syndrome is a cancer syndrome is hard to wrap my brain around and it just scares me. With heart, airway, feeding, developmental problems....and still we have to worry about cancer creeping in on our children.  So I guess in my mind I was thinking if I could meet these people a part of me would heal.  And it has.

The trip to Orlando, Florida was a lengthy 8 days.  There was a lot to pack!  It was a pain getting through airport security with all of Gabriel's stuff.  Luckily we were smart enough to get advance clearance  through TSA to take additional carry-ons for medical reasons.  It was not exactly easy! In Dallas the TSA gave us an escort, but we had to fend for ourselves everywhere else.   It was quite the juggling act with SEVEN heavy carry ons with medical equipment, a cooler of formula, a carseat for the plane and the stroller. I pushed the stroller and held bags while my poor mother was pushing a wheel chair with a mountain of equipment in it towering so high it basically blocked her view. By the time we made it on to each plane we had broken a sweat but relieved none the less. Our fellow passengers seemed a bit irritated, as we had no choice but to take up about 5 overhead bins to hold the equipment.   I was glad I opted to bring my mom as helper/luggage manager.   It was Gabriel's first time flying and he was so good even though we sat on the tarmac 2 hours after we landed in Orlando....and coming back there were plane problems that caused us to have to take 3 flights back! 
With only a couple brief meltdowns, most of the time Gabriel kept happily occupied with my iPhone. 

The conferences were packed with information.  There were days of lectures and then we had the honor to meet with each doctor/researcher one on one.  They are all so awesome.  There is no way to thank them enough for all the personal time they invest in CS research.  It was also an honor to meet the founders of the Costello Kids and Costello Syndrome Network!  Some of these families were the first to have children with CS before anyone really understood what CS was!  They have gone through so much with their CS children and it is inspiring to hear their stories!   I thank God for the day we got in touch with Dr. Karen Gripp at DuPont Children's Hospital who confirmed Gabriel's condition. 

I left the conference feeling like I had met all my heroes and joined their family

No comments:

Post a Comment