One of the questions I often am asked the most is now that I’m 35 and I’m raising Bella who is 11 which we all “appear not like 22q typical children” are we doing okay for the most part? depends on who ask I say sure. Why because they only want to hear their truth. They want to understand 22q the struggles and setbacks.
The failures I’ve had had with health such as gasteroparies dosen’t seem to bat an eye lash with some people after they ask me. They don’t know the pain I have daily the throwing up the faiting feeling the exhausted all the time the frustrations of being isaolated and not supported by a community that says they are suppose to support those of us with 22q.. The majory of people are only intereted in how well Bella has turned out and basically if I can function as a parent because I have 22q. Not everyone has these questions mind you most are understanding the parents who struggle with dealing with the disorder and it’s many complicated symptoms as an adult I also have those symptoms. I learned to adapt and adjust and manage own my own because I didn’t have any other choice.
Over the years of blogging I have shared content about Bella and my journey with doctors but now we just deal with every week visits to the pt and psychologist. those are soon coming to an end as well. We don’t really need much info or help from U of M either there is one more final visit and it’s either surgery or it’s not. Bella has been seeing the clinical team to help us ngativate her issues basically just watching and monitoring the success and struggles we have had since Bella was 5 years old. Bella being 11 is now the time we start ending things medical related because things are going well. Sometimes we take 3 steps forward and 3 steps back and we have a great team from her doctors office to the school front. Bella is mainstreem with an Iep and doing well.
Bella struggles with adhd isuses and social issues of course but Bella is in the 5th grade and is making the transition to middle school. We are not in crisis but there are struggles and challanges and Bella struggles with leg pains while I struggle with pains associated with gasteroparies. I’m able to take care of me because I have a supportive husband and a handful of friends I can count on.
some of my friends have asked what are these coping skills I talk about when it comes to dealing with my aniexity and panic attacks.
The first step is you gotta have your mental break down where you reach rock bottom.
I had to build myself up after being hospitalized struggling with the feeling like poop most days after Bella was born because of others online who bullied me and picked on me. There are so many others who think I don’t have 22q because I haven’t shoved my fish test in their faces (yet) I have a family history of 22q My father has it, 3 siblings have it, one passed away when he was 6. My own daughter has it. I know 22q from so many factors that are apart of it that the different perspectives I have about 22q. I have learns the tricks and tips only because I have had to. I worked hard and continure to always grow as a person.
I don’t allow 22q to get in the way in fact we didn’t know I had it until I was 24. I’m 35 now have had lot’s of mentoring and training from different advocates as well as author mentors. I’m working on a book but it didn’t come easy not one bit.
The tricks and tips I find that are most usefull are listed below. I hope this helps you feel not alone.
use mindfulness and meditations. I find comfort in spiritual practices. I have used eft tapping when the going is tough I have syncope but been great about no passing out since my daughter was 2 she is 11 now. Back when she was 2 I had a meltdown from all of the online bullying and others claiming things about me ect. I learn boundaries and coping method. I have to say eft helps and meditatiom. I also write and blog on my website but haven't had much to blog about latley life is incredible right now. My ptsd makes me on hyper alert so I use theraphy sessions as a monthly tune up to check in and to prevent relapses as I have a mini me with the same disorder and she has to learn by my example
Sometimes you get the hope that your going to make it and succeed and then others come along and stab you in the back. The online bullies remember them. The main lessons I have learned is,,,
When others attempt to try and crush your dreams for their own ego just brush it off and keep moving forward act professional and keep chasing after your dreams and goals. More to come in the New Year.
The systems are in place and I’m so glad you guys are sticking around I did take a social media break and worked on my boundaries if you want help with anything 22q related, a pm message or questions please be a subscriber and follow the fan page. Then I can know your truly interested and like what I share.
Thanks so much for all of the support.