sneak peak of my book preview: One family copes with 22q
I wanted to talk a bit about what my book is that I am writing about. I know a lot of you have seen me on social media post about the different conferences I attend and the many different events and volunteer services we have offered or taken part in promoting, mentoring and being an active part of the 22q community both inside and out of the community comfort zones spreading awareness to one ER dr, Nurse, and teacher at a time.
This journey has been amazing and all of you following along for the ride watching us every step of the way has been a bit strange and odd.
I never intended to put myself or our family out there like that. I do so because I have emails weekly saying how inspiring, and resourceful I have been to them and family's are so grateful that I am willing to step up and sand up for those of us who have 22q and be that advocate. That was never my intention (I don't like the attention) I am shy in person and I had to force myself to step out from behind my blog and take public speaking classes, attend conference and invest the time and money I have put into the Mommies Quiet Place brand and website.
It was only natural I started to write a book to share my personal first hand experience in such a way as to not give that false hope or put the fear of God into the person reading.
My TRUTH my story my way had to be put out there of ALL of the experiences the good the bad and the very messy. Emotionally, physically and spiritually painful journey that life has become but it's only one life we are given and I learned lessons to live each day as if it was the last day here on earth. I have seen the painfully heartbreaking side of this disorder first hand from my brother passing way to the amazing journey of my daughter growing up into her teen years,yes, even some of that painful teen girl drama is painful to see but as she grows I have learned and grown as a person not only on the outside (ha ha weight gain reference but inwardly as well as expanding my social reach both online and off.
I am a wife mom and step mom to 3 young adults. We have our daughter Bella who has 22q and my husband is 11 years older. Both Adam and I have had our personal journey with 22q we both view it from different angles but come at it the same we acknowledge our struggles with fiances, weight, mental and spiritual but we are a team sometimes not always a 50/50 team we do always find that we are out for the same cause the Amazing child we bought into the world together and raise her as well as we can with the limited support and resources that were given to us. (or not given to us)
The book I am writing others are also trying to start blogs and write their own books and kudos to them. Each person journey is different and no two people with this disorder is the same.
The story dives into about my disability' which are invisible. unlike down syndrome which is the chromozone disorder next door #23 ours is #22 on the q arm band. I have a spot about genetics 101 on my tabs pages on my website.
My faith and what I have went though and how God has helped me discover the joys and accept the lessons learned that I can now pass on to others who are going though the same spot of where I was over 10 plus years ago.
I am thankful how much has changed for the better in the past 5-10 years and for everyone who has helped us though it. I even thank those who have challenged me laughed at me and put me down and talked down to me. That pushed me to prove them ALL wrong. Here I am with my website 5 plus years later.
I want to thank everyone who was super supportive and again not supportive when I was having sever stomach pains digestive problems and concern and assumptions about me. I was diagnosed with gasteroparies over 4 years ago and people even question if I have a eating disorder with how much I have gained.
I do it's called a delayed stomach where the vegans nerve is damage not form the birth of my child but due to complications of having dna missing connective tissues that don't communicate some of the messages my body needs as a result of the genetic piece of dna missing. Every fiber in our cells are effected in one way or another. We are formed and created in God's image beautifully and fearfully wonderfully made. I know this full well.
My faith was not only challenge but that was the major lesson I learned recovering from a over dose on sleeping pills attempt thanks to a broken messed up abusive childhood up bringing and reflecting on my ability to be a good mother based off judgements stares and laughter at me from even other Moms who have children with 22q but not the 22q them self after my daughter was born. Island even has eliminated births with down syndrome is our disorder and any others like them next once the so called pro lifers learn about these hushed medical mysteries. The more I learned and joined in groups the more insane I became with fighting the stigma. I got sucked in staying up until 3 am googling symptoms my child and I could have.
Where was I? oh right the book I am working on. I wrote about my past when I was 30 in a mini book just over 8000 words about how it effected me ect. Now I am writing about my recovery the journey the Amazing journey of the bumpy roller coaster ride we have been on.
A lot of people ask me about what is 22q and how does it effect Bella and I. I hate answering that question to so many people I really hate answering it to an ER who had to tell me I was pregnant. I hated telling it to an er dr when I was in the er with my stomach pains every time. I hated telling the er drs when I gave birth and they had all of their medical students come in and listen to my story. I hate the most is explaining to my child's teacher every different teacher she has and she is in 5th grade in the fall about her and her 22q and how it will effect her education because of the panic attacks, missed dr visits and how the disorder makes her learn differently. I made peace with 22q I don't hate 22q I would hate myself and my daughter if that was the case and I worked my butt off to love myself to hate something that is apart (or not apart?) of me.
With the support of my family I have been making my dreams of becoming a christian author a very slow reality it has had many challenges even some that has shaken my internal core.
It takes me 3 times to edit something before I post and even then I find some typing mistakes.
When I was in the small group at a conference I attended my very first year I was physically shaking trembling about to pee myself I kid you not my voice would hardly make a sound as I spoken about the abuse I endured, the journey it took for immigration issues to proverty levels to hearlth issues and while sharing my story the entire story in front of small loving group of Christian women who were supportive I cried and sobbed like a baby.
On the other hand I was free from it all after I shared and spoken up I had ladies thank me and to this day are still friends with me. My fear was sharing my story with other Christians I would be judged, dammed to hell because I was not of god only to discover in a writing assignment I am fearfully and wonderfully made (only in his image) not mine
I am so thankful for the feed back and encouragement I am grateful for the mentors and life coaches.
I have one lady tell me I did great once I relaxed and just spoke from my heart now I share my story as my heart isn't broken any more and neither is my voice.
I used to hide behind my paper and that conference because I to a point was ashamed of sharing my story. After that conference I know who I am in Christ, I am fearfully, wonderfully made. (even if I don't agree with his will or timing) My journey on how I became while in Christ from tortured and abused to wellness and health is amazing there is no way I did any of it on my own. I had the guidance and support and connect of spirit or divine intervention
I have been taking my time in writing my story because I know all good things come to us not in our own time but in his time.
I enjoy early morning sunrises that I share on my Instagram and the love and annoyances that come from parenting a special needs child while having my own invisable chronic illness.