The reality .. 22q11 is a hard thing to live with.. the truth its a battle.. the facts its not easy living with the pieces that are known to hold you together. My biggest battle is depression, mood swings, and anxiety. the biggest and worst thing I have ever had to endure is knowing that one day I will have to explain this to my daughter.
Yes I battle depression, being fine one minute and extremely upset the next, wanting a divorce from my husband and wanting nothing to do with my family. Anxiety,, Part of 22q11. I hate it oh yea, I hate it, The headaches the feeling you get that is just sometimes unbearable to cope with. Mood swings.. one of the WORST things to ever battle. the ones you do not understand why you are upset , ok one minute and the world is just awesome the next minute.
The hardest part of all this.. being a mom and having to see your child at such a young age sit and watch her mom experiance a million emmotions at once.
Thank goodness for my family who tries to understand, who tries to be a support system, and who tries to encourage me and keep me going.
What keeps me going.. my daughter. I push through the anger and frustration that I have to live with 22q11 and she doesnt. I am quickly reminded she could have easily faced the challanges that i have to deal with and thank god daily for a healthy thriving little girl that is full of love and joy and such a blessing to have.
My issues for me did not start until later in life. I can hit rock bottom one day and then turn around a few hours later and be fine. I did not want to accept I had a lot of the mental aspects of 22q11 and have been able to live such a normal life until my issues hit around the time i turned 26/28. In fact if truth be told i did not want to accept I had 22q11 at all.
What changed my acceptance? knowing there are others out there that have it like me.. what frustrates me the most.. having to search high and low for treatment for adults with 22q11 and some that are brave enough to tackle a heart patient with depression axiety etc.
I am beyond thankful for my family. They have stood by me through my darkest days when I have before becoing a mom stayed locked in my room and not wanting to come out. My husband has stood by me on those dark days also. I still have my dark days but my little ray of sunshine keeps me going. My life is not easy. 22q11 is not easy to understand. do I regret writting any of this no, . Living with the issues i have and continuing on with life is robably one of the geatest pleasures i have with this syndrome.
I have hit rock bottom while derek my husband was deployed and toughed it out. when I married that is when I finally decided i needed help. that is probably one of the hardest things I have ever had to admit to myself., Getting help was probaby one of the best things I could have ever done. I have even reached the dark days of suicide thoughts. thanks to the love again from family they bailed me out and gave me a dose of reality.
I write this tonight with a heavy heart and the fact that a lot of us out there deal with these same issues. life is tough with this syndrome. we have to eventually attempt life and try to succeed . I am now on medication for depression mood swings and anxiety. I am picking up and continuing on with life again.
being a mom is not an easy task while having 22q, but i get through it. life is tough, but having 22q11 is tougher.. people aways say what doesnt kill you only makes you stronger. I have lived I have achieved and i will survive life with this syndrome. I will go on and raise my little girl and I will go on and enjoy life. Life ws never meant to be easy.. sometiems the good lord above gives those of us an extra challange in life to p rove that we can succeed . Thank you for taking the time to read about my struggle with 22q11 deletion. "Never let it stop you and never let this syndrome bring you down"