What I wish I knew before I found out I had 22q

What I wish I knew before I found out I had 22q

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It been ages since I did a rant blog post!

I call this what I wish I knew about 22q because even after all these year efforts of research is still unknown of how this affects us who have 22q.

 There can be a bit of variability between each of the conditions. Such as 22q11.2 deletion can be a trisomy or there can be chd or no chd. You can have thyroid issues or no thyroid issues. You can have learning speech hearing heart issues or none at all. I wish I knew and understood that no two people with this disorder are affected by it in the exact same way no matter how hard I searched for answers and asked others who have it or have kids with it I always found out there are some similar characteristics but not all of the exact same symptoms and even if we had the same symptoms as someone else there are for different reasons.

I knew what Digeorge syndrome was but I did not understand velocardiofacial syndrome until a few years afterward I did not understand the basics of genetic 101 I can now probably teach a seminar class on it.

I did not know there is an entire country who wants to wipe out rare genetic disorders and completely get rid of anyone who is a big quirky odd or different with how God formed them. I did not understand why parents were shocked when I could raise my own family when I told them. I did not understand the hatred of people who have this disorder but yet claim their love for their own child they too will have a child who grows up one day to be an adult like myself.   I also did not think parents would never want their 30 year old live on their own and be functional adults in the real world I didn't know why parents were so over protective until I had my own child. I will not limit my daughter like some of the parents I know and have ran into but instead, encourage her where she needs encouragement and help her by nurturing her independence no matter how stubborn or strong willed my redhead has become at 10 years old. I am so thankful for her stubbornness because that is what got her through all those years of multiple doctors visits her leg braces and her dental work. That what pushed us past our limited views of others to help us reach our potential we ran a 5k together not many normies can say they did that. 

I understand now the fear is the unknown and the hate is not hated but it is grief it a loss of life they thought they were going to have. I get it I have my own daughter who has it. I too experience all of the awful mixed up emotional feelings that come from having this disorder but I did not allow my self to stay stuck. I educated myself and I am educating others so they know what to expect once knowing what to expect they can be hopeful that is the worst case or they can hope for the best case but either way there is hope after knowing what they are getting into.

Feeling pretty lost scared and confused is a typical day to day functional normal for us none normies who are trying to figure life out. Adjusting to routines and schedules is a challenge trying to manage just a two bedroom apartment can be a chore for someone like myself but here I am doing it basically wiping my own butt. I am shocked that others are shocked that I too can wipe my own butt and look after myself and not only look after myself but after others as well. I am a wife mom and step mom some define what I do a success

I am not impressed one bit by being someone inspiration simply because I am stand to own my own two feet and get up each day and do things that I have to do. I get some people can't I really do get that but to label that all of us with 22q can't do that is unfair and it is already setting more limits on the limits that are already in places. Screw the limits set by others is what I wish I knew!

 

I have anxiety and Adhd and ptsd but most days are good days medications are little because after all these years I have coping skills and things set in place I know that will help. such as sticky notes and how to guides I use a binder system to keep track of everything. I also have a binder for everything I really wish I knew about this binder system that I use. It would have made high school so much easier.

I wish my passing out spells I had in high school were vaggo vessel and that I just had to take this pill for and it would all go away. It does not go away with just a pill I wish it did.

It can be scary to hear your child has a genetic disorder. It can be scarier to know you also have the disorder what is even scarier is knowing you have a disorder and having a child any how because hey life happens and birth control is only 99.9 effective.

I see these worst case scenarios in support groups and such and watch others just stare and hear crickets when I write a post about the good stuff but when I write about the bad everyone comments. I wish I knew I was only a relatable human being by sharing about my stomach filar ups. I would have written a blog post and shared pictures of every time I picked and hugged the toilet bowl I wish I knew you all would cheer me on for that. I wish I knew what I needed to do to be part of a support group to be a team player rather then having to create a blog and website and from my own tribe. I wish there was a tribe for me where I could fit in but it is what it is. I wish I knew life is what it is before life got all messy by my trying to fix it and help others.

I wish I knew how to handle the stress from the nonstop specialist and pt and ot appointments we had to attend and that I had to attend while I was pregnant and after. If I did I would not have ended up in a 72 hour phyc hold with an over dose of Ambien just by mistakenly trying to simply sleep because my brain wouldn't shut down. I wish I knew how to write about that moment to help others to prevent others from going down that path that I did. I wish I knew about 22q.

I wish I knew my brother who passed away from having 22q at 6 years old. I wish I knew what I outlived him. I wish I knew why God takes the little child and not me. I wish I didn't have a second hospital trip for a medication over dose because I didn't know how to process grief I didn't know how to deal with my father who disowned me who has 22q as well. I wish I didn't learn these coping skills from my step mother who enjoys attention seeking behavior choices and takes tynole by the bottles when life gets too shitty for her. I wish I understood mental illness when I was a teen.

I wish I didn't have to have a complete mental break down after I had my daughter when she was 1 and another when she was 2. I wish I knew I had ptsd do to the major abuse and neglect from my parents. I really wish I didn't have to hold all of this in until I was 25 years old. I am 34 years old and I really have only enjoyed living life since that last trip to the mental hospital. I am recovered by the grace of God I understand why God allows bad stuff to happen to good people I didn't know then I wish I knew that too why God allowed 22q. 

I know now I know from the bible study's from the medication from the teachings from all the years of hard work in therapy. I wish I could pass all of this knowledge on to others so hey don't have to feel so crappy about having 22q or living with someone who has 22q but what I know is people are going to do think act and feel how they want and there is nothing I can do to change that. I also wish I knew I would make and lose friends who have 222q based of what others perceived about me. I wish I knew all of this about 22q

I wish I didn't see this from a parents perspective and also somebody that suffers from it. I wish I knew all of this about 22q.

I wish I knew that insurance did not cover anything related to my daughters health condition and that having children's special health was useless because Medicaid will cover generics of what she needs.  I wish ssi knew what 22q digeorge syndrome was and that it not going to get healed because she can speak. I wish I didn't have to appeal ssi or have to deal with ssi every time we tuned around but only one of us can work because I have no ablity to stay at a full tme job with the ups and downs of my own illness. I wish I knew there was more support.

I wish I knew all of this about 22q.

What do you wish you knew about 22q ?

 

 

 

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#SpeakUp2017-speakers and writers conference-Blog Hop


Hello everyone

This blog post is for Cindy Bultima an amazingly talented writer and speaker friend who is hosting a blog hop. Cindy asked what were our take aways from the conference.

My personal take away from the Carol Kent's SpeakUp2017 Conference that I attended a few weeks ago was a reflection on my own personal growth in the two-year time frame since the very first conference I attended.

I took some time to really think about this blog post since so much happen during the three days at the conference that and I made so many new friends and enjoyed seeing some friends from the first time I attended back in 2015.

I was so scared the first time and quiet and shy my first time I went I did have a mini panic attack sharing my hard personal story of how I over came abuse and hardships. I learned I can not read and speak at the same time. I do a lot better with out my notes in front of me and just wing it and speak from my heart because who knows my personal story more than I do. I don't need notes. This time I wrote about the need for self-discipline and shared how my health journey was related to a 5k race. I had to share this story with a small group of fewer than 10 people and the people were not my scary factor it was seeing the number 2 pop up as the time ticked away and knowing I had one minute left and I froze was I going to get out all I needed to say in less than 3 minutes.

My first time I went I shared for 16 minutes as people kept wanting more from my story. I did do it in 3 minutes and I narrowed my aim a class I took the first time I went helped with that aspect. speaking of classes I took few different break out sessions including two the Cindy her self-was teaching. I took another about Bible journaling and another about telling your hard story it was in that class where I learned that I am on the track I need to be and I am ready to share my story.  I also was in a social media crash course and an ever note class because I went to the wrong room by mistake and listen in on ever note then went into the social media one. 

I suppose it wasn't bad for my second time attending. I have to speak louder when I speak to strangers I become a quiet mouse and struggle to get my voice out. This speakup conference is all about that speaking up on topics and issues that matter and touch peoples hearts minds and spirts. I also had over come to my personal fears of networking and sitting at a table eating lunch I had no clue how to talk to these amazing women but after a bit, I started to feel comfortable calm and relaxed meeting talented people who knew.

I reminded my self of where I used to work at a hair salon that catered to celebrities and I am sure I could handle some book writers but the book writers were more of a challenge because that is where I desperately want to be some day. I want to have my book sitting in a Barnes and Nobles. One day some day maybe I too might have the chance to meet with a literary agent who was also in attendance at the conference but I shy away from a few of them I have to do a lot more writing like from 4500 to 69000 or so words is what I found from one of the agents they want more meat to their books some want less but that's kind of thing I learned.  I felt like I could never fit in with so much talent I know my short comings.  This year it was different I got to see some friends I made the first time and we connected and chatted and asked so many of them about what they do and focused on each person very being concern about telling everyone about myself unless of course, they asked me. I took away new friends and a new direction that I need to take my writing.

  I was going to list all of the amazing talented authors and speakers that I met but really that people I meet aren't a takeaway that more of a personal connections list I might make in a different blog post. This one is to share the break out sessions I learned.  I am ending the post with pictures to share a bit more of the experience I had at the conference.  Also here is a link to the speech I wrote that is less than 3 minutes when I shared it.

  Pictures sometimes say more than words can! I wanted to share one last take away that I left with from the conference. I now have different direction to take my writing I have options I didn't have before and I am not going to be a island any longer I will reach out to others when I need encouragement and not allow myself to get blogger burn out like I had before attending the conference.

I want to know have you ever attended a conference before? I want to know what other types of conference other people attend as I am encourage to seek out other conferences and learn all I can. Let me know in the comments below and until next time my friends keep the faith and keep pressing on.

The break out sessions where I leaned so much I even have a binder filled with notes to refer back to

The break out sessions where I leaned so much I even have a binder filled with notes to refer back to

Carol Kent speaking her story and it is amazing. I am so inspired by her breavery. 

Carol Kent speaking her story and it is amazing. I am so inspired by her breavery. 

I think my biggest takeaway is in reference to this verse Matthew 5:14-16is that now is time to stand up and speak up. I am so encouraged and inspired and that is something that I lacked before attending the conference as I had blogger burn out. I know there are other ways to share my story and get the word out!

I think my biggest takeaway is in reference to this verse Matthew 5:14-16is that now is time to stand up and speak up. I am so encouraged and inspired and that is something that I lacked before attending the conference as I had blogger burn out. I know there are other ways to share my story and get the word out!

      

 

 

 

 

 

 

 

 

 

 

 

 

If you want more information on the Carol Ken'ts SpeakUp conference so you can attend next year or want to see what the conference was all about here is the link http://speakupconference.com/