My name is Amanda. I am a wife ❤ special needs mom to 1 & step mom to 3 young adults. That is 4 in total. There is always something going on and I needed to find a way have some quiet time. I started writing our of fear that people were getting the very wrong message about those of us who have 22q. That we can’t do things like get married, go to school or work jobs.
A lot of fears come to a parent when they hear the words there is something wrong with your child and it’s a genetic piece of dna that is missing on the 22 chromozone. that’s what 22q is that’s what I have and what Bella has. I decided to create a place where others can connect and find each other. I also needed a place where the kids wouldn’t find me or really care what I was writing about. I started writing out of fear hopelessness and on bedrest while I recovered from a mallory wiese tear and bouts of gasteroparies flair ups that I didn’t know how to manage at the time. I also had a place to brain dump about the multiple doctor visits my daughter was having and continues to have. I wanted to share her journey incase one day I forget how for our family has come.
I had high risk pregnancy and complications at Bella’s birth that led her to have mild form of cerebral palsy. I am a rare family in terms that the uncomon genetic disorder we have my father and 3 other siblings have as well as Bella and I so 5 of us with 22q. One sibling past away when he was very young. I have seen the good bad and ulgly. It’s shaken my faith. I’ve been to the bottom and back to the top only to back to the bottom and some place inbetween.
I started this journey writing out of fear of the unknown. As I experienced first hand personal experience what raising a child with special needs and my own chronic illness I learned so much along the way. If I can help others know they are not alone then I have done the job I had set out for this website. Only at first it was one person’s email, then another and more kept coming up. Soon I was nominated for a national honor’s of hope for rare diseases website spreading awareness about how my family is rare with this little known genetic disorder that’s as common as down syndrome. I soon started getting attacked online and targeted harassing because my truth is different then theirs and what experts deemed we had to be. I started writing more out of fear and a place of aniexity and now it’s a place of peace and hope. It wasn’t always this way. It’s taken years to develop a thick skin to learn to go with the flow and put my trust in a higher power. I also write devotionals until just recently I have started sharing them. My blog is my journal since 2014 although I have taken down a lot of posts some were to hard to read and others I didn’t want to edit but instead I took them and made into the first draft of a book I may or may never publish. I am writing my recovery journey now and it’s been amazing. So many doors are opening up as I have allowed myself the freedom to work on mental and inner healing acceptance and just letting go of the fears of the future and being in the moment one minute at a time because sometimes multiple moment’s come at me at once. My blog has become my journal for my emotions and exploring those emotions with God and myself I found a passion for communicating threads of hope though stories. I want my daughter to have a glimps someday of all of the love and hard work we have put in and hopes it helps her understand any parts of her past she may have forgotten as she get’s older. My life as a child was filled with abuse neglect by the two people in the world who were suppose to fight to stay together but never even attempted. They both abounded me in one form or another being disowned by my father and my mother flaking in and out as she pleases. I fight sharing about that here on my blog it’s all apart of who I am and what makes me. I want Bella to know how much her father and I both love her and work hard to not only stay together but thrive together as a team when we are united. I didn’t always have the faith and trust in a higher power but know now that something out there greater then I am has kept me going.
instead my quiet place became my loud voice where other’s shared and started being influenced by what I shared. I reached rock bottom and only with God’s grace did I ever get pulled back up from the ashes. I’m working on the second part of my story now and it’s about recovery the journey from the pit’s of depression to fearfully sharing my story in front of others.
One day I decided to journal out my feelings thoughts and experiences. I spend a lot of my free time working on my website from scratch, particularly photography/videography, social media, and blog posts. Everything you see is almost a one person deal. I do have my husband help with the securing of my website after the wordpress hack I had. I am building my platform from scratch as well this year (2019) I started blogging back in 2014 but I was blogging for the wrong reasons and my message was getting jumbled.
That journal has become a blog where I share my families story. I love sharing our adventures and apparently so do all of you. I have a high social media reach but not much in terms of engagement. It’s time for me to step outside of my website and become more social and speakup.
I love sharing about a great experience our family has had or a fun new product that is the current must try. I also write devotionals and volunteer my free time as a parent mentor. I advocate not only for my own child but others as well. If you want to ask me a question just hit the subscribe button on my website and send an email.
My story is about how one family copes with 22q11.2 deletion syndrome (DiGeorge) or 22q for short and multiple health issues that came with the genetic disorder.
I love connecting with other family's to share—the good, the bad and the unbelievably messy. My husband says” Your the cross between the artsy high tech mom and the hot mess mom you meet next door.” remind me to thank him. We are celebrating our 14 year anniversary together.
Why are the kids and hubby's are so messy? how I manage my home. Life skills tips and tricks.
What is 22q?
A common comment I often get is that I look much younger then my real age.
Spoiler: My answer is “That’s because it’s in my genes. I have 22q deletion syndrome.”
My first hand personal experience of having 22q myself as I raised the child my hubby and I created.
Read on for insight and advice from my personal first-hand experience and connect with other moms who've been in the trenches.
Here are some of my passions:
chocolate, coffee☕ and Books 📚
enter contest/ giveaways
hunt for freebies
working on writing and someday publishing a book or two
attending conferences and workshops
Worshiping our creator.
I won’t preach at you though ever. I do write devotionals, if you are interested. I write for parents of kids with special needs.
This blog has been up since 2014 and I have helped many other people who have children with 22q. I have also help guide young 22q adults start their blogs to help encourage them to share their stories. Knowledge is hope.
You’re invited to share our journey living life with a genetic condition.
Follow me as I share our journey of hope from fearful to fearless I do it all scared any ways.
I couldn’t have done it without all of your support!
Thank you. p