Genetic condition that Affect mental health?
I am 35 I have my 11 year old I have been doing a lot of self-reflecting and kims questions couldn’t have come at a better time in my life. .22q is a total body disorder. It effects from head to toes.
Life can be a lonely place for a mother too, no one really knows what you are going through, until, that is, when you meet someone else in the same boat. It’s a huge relief to connect with other families, other mothers who have had the same experience in my case there is no boat for me. I don’t have many others who are adults with 22q and have children with 22q.
I don’t really fit in. I had to make peace with the fact I was born to stand out. Bella and I are struggling with the same daily concerns as you are but we don’t get that sense of a ‘new’ family when we join support groups. I had to create my own.
A few years ago a friend and I started a rare genetics support group that met up locally in a Mcdonalds
I shared how I passed out once at a children’s birthday party. Where my daughter saw me curled up. I ended up in the hospital few times having my stomach pumped in what I now look back and see was my cry for attention and help because I didn’t understand at the time what was happening to me why I was throwing up and passing out when the world became overwhelming.
Stress and panic did a number on me. Being a new mom is fighting but being a mom to a child who has the same genetic disorder that I have was down right scary. What kept playing in my mind was would she be just like my siblings who have 22q and much more sever conditions from 22q would my child pass away like my brother did while he was a sleep. I had so many questions none of the so called experts could answer and I had to become my own expert.
It put me in the position I am now with a understanding that not many others have from all perspectives mom adult sibling of someone with 22q I seen the belly of the beast sort to speak but I’ve also seen hope and others living with it and not even knowing about it like myself until I was 21. Sure I appear fine now as does my child but that came with a lot of hard soul searching, group and individual therapy sessions that included exposure therapy, eft tapping and cbt as well as dbt skills. writing journals and dumping out old thoughts for new ones and new truths and discovering my worth in God
only now looking back that I can see the huge emotional and psychological toll that loving and caring for a child with special needs can have on a family.
I had to learn my limits. learn it was okay to not be okay ]Mental health is part genetics the other part is choices we make and the effects those actions have on others.