We are so glad you found us.
I know your looking for answers and have many questions. I can't say I have all the answers to the questions you might have.
I can share with you what I have done for myself what worked and what hasn't worked for me. Please don't do anything I have done with out first talking to a doctor. I have attempted and tried almost everything along this journey learning the hard way usually of what not to do rather then what to do. I show you tricks, tips and share what has worked and sometimes even things that have not worked for me. Like googling at 3 am and trying to figure out what stomach issues people with 22q have. It is mind boggling that people assume we are all alike when genetics is the major factor here and that makes it so this disorder is unique in so many different ways infact over 180 and counting to be exact of how many different things can be different then the average person and there is no cure for any of it this syndrome is a managed syndrome and we treat what symptoms pop up.
I can share my first hand personal experience and knowledge of living life with 22q11.2 deletion syndrome.
Blogging is probably the best thing I do for myself. Through my blog, I've made connections with other parents, found answers to difficult questions, and gained the support I can't always find in real life or in online support groups. The second best thing I do for myself is reading blogs written by other parents of kids with special needs. The third best thing I have done is I have taken parent mentor training and advocating training I have connected with strong amazing parents, family and formed new friendships locally and internationally that will last a life time.
I have equipped myself with knowledge from being an active role in the 22q11.2 deletion community since I was diagnosed when I was 21
My scary hard journey is found on this blog on my blog Our Journey
I am now 34 and have seen first hand the good bad and ugly side of living life with this uncommon disorder.
I share the joys as well as sorrows of living life with 22q11.2 deletion syndrome.
I have a father, three siblings with 22q11.2 deletion syndrome I also have myself and my amazing Bella who has 22q11.2 deletion syndrome. My views are unique in such a way of first mom, then adult with 22q, then sibling to and daughter of someone with 22q. I have all different perspectives and do not typically fit the normal 22q support groups of parents who have kids with 22q but I do love connecting with other parents and offering guidance and support why? because it was something that isn't there for us adults who also have kids with 22q. we are looked at as the outsiders where people will stare and watch. I changed all of that for myself and I changed the competition of who knows more factors when it comes to social norms of online support.
. Welcome to my quiet place. Mommies Quiet Place where we can find so comfort while we search for our normal. This blog if for those of us who are on the outside looking in
check out the links below
first list is a list of only a handful of people who I have met along this journey living with 22q who also have 22q11.2 deletion syndrome.
I have met so many amazing parents of children with 22q and plan on adding more stories.
If you would like to have your story featured on my website visit the contact me page and leave me a message.
If you like comment, share and subscribe to my blog posts to stay up to date on our journey.
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