Tuesday, 19 April 2022

Our Feelings Matter

 


When I was younger, if I had an issue with anything, certain responses were always "just put up with it, ignore it," etc….. Because people didn’t know how to deal with things or resolve them, or help me to feel better, ever. There were never even any hugs given, or I love you’s when I really needed it. 


Because of this, it causes one to feel like they have to stuff away everything they feel when they aren’t given a chance to be heard, or acknowledged. Regardless of whether people can handle a subject or help make someone feel better without it being something like candy or chocolate… (This was the answer back then. It was a ‘’temporary’’ solution and only distracted from the matter.) In the end, what do you feel? More mad, more frustrated.  


As self-care seems to be an ongoing theme for me, an important part of self-care is also knowing when to speak up.


Even when you feel like you won’t be heard, the effort has to be made at some point. 


I believe in healthy give and take, and healthy relationships call for both parties to have a voice, be heard, and feel heard. Experience forgiveness, an apology (letting go of one's pride, accepting when they have done someone wrong, making a conscious effort to NOT do it again, along with serious efforts to fix an issue when there is sincere love. 


In this Covid/war world, we have too much thinking time - and I am looking forward to having some long-awaited things at least attempted to be dealt with, “maybe some nice surprises come out of it?’’ and maybe finding some love from some of these people I deal with. I am also needing to take on some martial arts later, and also plan on learning some more assertiveness skills for myself and my daughters’ sake.  


To Be Continued!

Written by Nahani Johnson, April 2022
Living with 22q

Trust Yourself - Always!

 


I was a naturally shy child in my younger years. I was bullied almost every day in school. My dad was also one who would avoid ANY type of confrontation he could - a form of people-pleasing. 


I didn’t have many friends growing up, so later on in life, I would be ecstatic for ANY Friend, even if they weren’t good for me, or tended to use me for something. I didn’t learn how to have the right kind of friends and this has caused MUCH hurt in my life. 


There is this ‘’one word’’ we have to say sometimes.  


<NO>


WE ALL HAVE A RIGHT TO USE IT. 


WE ALL HAVE A RIGHT TO NOT BE ‘’AFRAID’’ TO USE IT. 


The worst things that happen to us, usually, are the cause of a boundary issue, knowing when to say yes or when to say no. 


It is so hard especially if you have wounds in other areas. Parents, teach your kids how not to be afraid of it. Especially, before they reach adulthood.  I think it is the one thing that a kid should learn when a kid prepares for adulthood.


If you have to take courses or another type of training to help. Don’t be afraid to.  


My biggest hurts and mistakes came out of being afraid to say ‘’NO.’’



Friends


Trust your instincts always. If you don’t have a good feeling in your gut.  Do not agree with "anything." MOST things you can think about. For the things that you can’t, this is why you need to be so in tune with this area.


RELATIONSHIP SCAMMERS… SO MUCH FRAUD. Trust your gut!


So things don’t catch up to you like they did me, and then you are "really in a pickle." If you have a dream, pay attention to it. (Also a recent experience) Dreams do guide us as well. 


If you have to role-play for practice, do so. Whatever you have to do, do for you!


Written by: Nahani Johnson  April/22

Living with 22q





Saturday, 2 April 2022

Book recommendation - The Tao of Davis


We always try to watch for new resources for families that can help them on their journey, and we were excited to see a new book (January 2022) written by Cheryl Wood, mother of a child with Phelan-McDermid Syndrome. The book is entitled Tao of Davis: A story of developmental disability in a mountain town.

Having someone put into words the experiences we feel as parents make us feel seen. It certainly helps us to know we are not alone.  

From the author:


"When I hear from others that my life appears to be a challenging one, I smile for I have yet to witness a life without a challenge.The follow-up comment, which never fails to turn my lips downward with discernment is that “they” could not do it, be in my shoes and tend to a family member with special needs. Nonsense. Any of us can. At some point most of us do. Accidents happen, diseases loom in the corners, loss occurs (intellectual or physical), parents and spouses age, and children are born who are different and will require more assistance. What I know is that each of us with the responsibility of caretaking can be flawed enough to be embarrassed when we stand out, and strong enough to create a home filled with laughter alongside the tears. We can learn to be flexible when our days go sideways, and to regain our balance when we stumble on ever-shifting terrain. Living with or without challenges is a physically and mentally fragile process.To do it well requires practice, and this starts with today, not tomorrow. I have learned to forget about happily ever after and fight hard for happily ever now."

Thank you, Cheryl, for sharing your son with this new book!

For those of you who purchase it, don't forget to leave a review on Amazon for the author, and please share this new book with your networks. 

You can find the book on Amazon.

You can learn more about Phelan-McDermid Syndrome by visiting the Foundation's website, pmsf.org 

Visit Chromosome 22 Central's website at c22c.org

Do you have a story or resource we should know about? Email us at c22central@gmail.com.


It will all work out...eventually!

Avalon: You two are gonna keep doing things as usual. Booth: Sometimes you gotta settle for second best. Avalon: By the way, my cards tell m...