Why does this matter so much?
A sense of belonging, of being amongst our own tribe, is one of the reasons this matters. The conference is packed with back to back educational and informational sessions covering areas concerning infants, toddlers, kids, transition age and adults. Sessions about sensory processing, physical and occupational therapy, speech therapy, growth hormone, special needs trusts, IEP meetings, transition, updates regarding research, feeding issues, and much, much more. There is a separate track for the Self-Advocates, as well as a separate track for Siblings. There is also more bonding time after daily sessions are over with a Mom’s night out, Dad’s night out and an outing for all families together.
Lillian’s only friends are her chromosome 18 friends. She texts, emails and writes letters to and with them. They get to see each other face to face at the conference. The bonds they have established grow and deepen. They get to swim together, eat together, be silly together and perhaps even talk about their parents and siblings together with someone who GETS IT! They understand each other. They feel comfortable with one another. She has friends all over the World due to a difference in one little ole chromosome.
I’m excited about the opportunity for Thomas to meet other siblings, share with them, form new friendships and know that he is not alone in the path that he travels as sibling to Lillian.
We learn, we grow, we bond, we are inspired, we laugh, we cry, we come home with information we can use. We each go home knowing that we all belong, knowing we are not alone, knowing that we have a special something in common through an uncommon chromosome.
For anyone who does not know us, here’s a little more information. Lillian, my 11 year old daughter, has a genetic difference referred to as 18p-. She is missing a piece of her short arm of chromosome number 18. This affects 1 in 50,000 people. The Chromosome 18 Registry & Research Society provides an online venue, private and public, for us to connect. They perform genetic research and are there to guide us and answer our questions. The Registry is located in San Antonio, Texas. It exists because a Mom, Jannine Cody, was told about 20 years ago that her daughter had 18q-. Her advocacy, strength and courage led to what we have available to us today. You can find even more information by going here.