I am often asked my biggest challenges on being a mommy with 22q11 ds. I had to take time out to even wrap my head around if I had any challenges at all as everything seemed to come together after having our daughter for me.
My struggles I had with 22q11 ds my depression and anxiety have seemed to just completely go away lately. My biggest challenges now : accepting the fact that I have a "normal " daughter. At f first after Myranda's amnio results I was in major denial. I did not want to accept the fact she was free and clear of 22q11 DS after it was drilled and drilled into my head that if I did CHOOSE to have children, my children would more than likely be affected by 22q and also my Tetralogy.
Everyday I look at her I think... I did it I beat the odds how and why I am not sure, I just know that God was on my side and Myranda being 22q11 DS free was the reason she was giving to us after 5 years of struggling how we were going to have a family of our own and how we were going to figure out how to avoid passing on everything.
Is an amnio worth getting if you have 22q11 ds... YES!! it took a lot of weight off of our shoulders as I wished I was detected as early as children as now. I was not diagnosed with 22q11 Ds until I was 25 years old. I thought if Myranda does have it, I will at least know a head of time and have my ducks in a row when she arrives and know where to turn for the best care of her. I luckily did not have to use those resources I had lined up in case we needed them. Drs were even amazed she was cleared , but did educate me on the fact that if I choose to have a second child ( which Cardiologists of mine weren't allowing because of the current condition my heart has been in ) the second child could be affect and the out come may not be as mild as myself.
Believing that I did this without all the struggles we thought I would have carrying my own child is another challenge of mine. I did it, I conquered it and will now tell others that ask me for advise on pregnancies with CHD..all I can now say is listen to what your doctors tell you . I was told not to do it and to do it all over again I probably shouldn't have went through with the process , but I just wanted the chance to be able to put it behind me. My doctors finally gave in and willingly gave me the chance to become the mommy I am now.
Myranda if anything has giving me the ability to focus, concentrate , and even control my depression and anxiety. IF nothing else ever goes right in my life from here on out, I at least have her to go back on and say look what I did when others thought I would fail. People have in fact told me to my face I would fail as a mother because of my disabilities. I took that on as a challenge and am proving them wrong daily.
I do have my days where I want to break down and cry, but when I look at the sweet little miracle I was blessed with today I learned that everything just falls together for a reason. I may have failed at things in my past , but one thing I will not do missing pieces or not is fail at being a mom. Life is is so much simplar now. I feel more human and more complete.
I know life is full of challenges , but to me life with 22q11 and being a mommy has turned more into an adventure than a challenge. I surpassed one of the biggest challenges on just even becoming a mommy and I would not trade this adventure for the world.