Let your light shine bright
Self reflection post: For me it was being diagonsed with 22q11. Deletion (digeorge) and having very few symptoms and then having a child who also has 22q.
My own inner healing journey began when I was 21 and fist diagonsed. I am 36 years old now with a 22qt tween of my own she's 12
I used to ask why him not me lord? We dont have to understand why our path is what it is but... If you are not a spiritual person who believes in faith that is okay I didn't used to either. No judgement zone here. Just know this....
Prevention is not key! knowledge and hope is. Not the false hope kind either. Share your story the truth of your story will help encourage others and inspire others. Don't belive me. I have dozen of young 22q hopefull young adults asking me how did I end up doing as well as I have. I am not trying to be inspiring to others to say the lest I am trying to stay out of the public eyes. I shut down our youtube for that reason it started to get too big and I wasn't in control of ohw others started viewing me. Now it does not bother me one bit. I have my truth and they have their truth and that's how it's going to be. I'm not a cookie cutter or carbon copy of anyone else just becasue I am missing a small genetic piece of dna. I mean really something so small makes everyone react like its' this HUGE deal. Sure there are challanges I have faced and still face. sure I want to toss in the towel some times with the toll mental and physical health can take on me having a genetic disorder but if I gave in and sucked whined blasted facebook posting about fear monguring and hate where would that put me mentally. It would keep me stuck and the others who write me off and shove me aside because I have 22q they don't get it but in reality they are just trying to prove they know more then the next person and have the awareness spot light on them. As a person who has 22q and a child with 22q I don't have to compete with any one. If if feels that way maybe your the one convicted to look at life form another point of view. Things that should have taken me down mentally didn't break me for ever. The over doses, the hospital trips all those years ago. 11 in fact after my own kid was born I was the hottest mess you would have even seen. Those in 22q support groups laughed me out and said I was not one of them because I don't have throid issues yet I do have a positive test. They didn't support me so I created my own support. That was really life changing and dare I say life saving. Knowing that I was not the only one enduring the multipe dr visits watching my kid suffer while I was really dealing with my own health stuff I learned more about my issues by watching my child grow up. She is 12 now and I would not trade her for anything in the world. Even her tween challaning break downs and outburts. Sometimes I want to have mental time out and vacation whine and call it quits. I keep pushing forward. That's just how life is. I can't show others they were right and that I am something to be brushed aside. It's not about proving to others my worth but showing myself my worth by who God says I am. My worth is not defined by my health, blog, husband, child yet I have gotten lost and sucked in by all of those things. Most recently I have learned to love self care. I go out with my friends from recovery group and I make time to focus on doing simple pleasures such as fancy coffee drinks, working out, spending time with each one of my family members alone and as a group. Its about that self help wheel of balance. From how I think and cope with life challanges such as Adam's new job to a stomach flair up because I went out and had fun at two bbq's this summer. self isolation is almost a thing of the past. I worked hard at being who I am and okay with others not truly understanding who I am. it's not about them but if I can help one person though the blog posts that just made the pain worth it.
For the rest of us life keeps moving on for those of us still here. I used to even ask myself why did my brother passaway and I did not. try loosing a 6 year old to the same disorder you have and not have that mess you up mentally then have a child who out lived him in number of years and is not only doing well but is thriving and baffling doctors and anyone who understands life with 22q. The We are all uniquely made is why, this was my proof. I could have continue to make myself sicker to end up where I didn't need to be by self hate, self isolation allowing those comments online to tear me down but I chose to stay the course the assined mission was life. There are those who think they are older wiser more experienced then me and think it's a competion even from those who are younger then I am. I don't need to compete my life speaks for it's self. You know what so does yours. Stop trying to mimic others and just do you. As mom I have to pick my battles both with kids (I am also a step mom and hubby and I are aising our daughter 22qt bella ) I had to pick which battles to choose from stubborn kid battles over bedtime (seperate post soon) or my own emotional battles. Sometimes both are intermingled sometimes the only competion is within myself to prove to myself I can do this or that. I don't even think who is all watching. Most of the time I don't have that filter to really care Let your own light shine bright
Example below is a photo I took with my camera. This is just one example of the things others try to duplicate.
If you took a photo with the same light settings and the same camera it would look simular but your image would be yours not mine.
don't let others dull out your light and make you feel small just because they don't have the same courage to shine as bright as you do.
Thanks so much for reading. Image may not be copied with out asking me.