A lot have been asking about my biggest challenges being a mom with 22q and CHD to a healthy non cud and 22q baby. I had to take a lot of time and think about my challenges and obstacles I faced now that my daughter is 11 months old.
My biggest challenges with my 22q issues are only just mood swings and anxiety . I have been successfully able to stay off of medication for a year now. I do best in calm and collected environments and have found recently that a lot of what I eat can also effect my moods. I have tried to eat more healthier and stay away from fast foods and seem to be in better moods.
With that being said: My biggest challenges have been staying focused on what I need to do from day to day being that Myranda is completely healthy. It seems with a lot of 22qers we have troubles trying focused.
My other challenges have been accepting the fact that my daughter does not have 22q or TOF like I do since I was told for years that I could not have kids and would pass down everthing I have and they have a higher chance than most with having the deletion and TOF.
My husband is now out of the navy and working as a civilian. My biggest struggles have been to re adapt to the civilian life. I basically do not have to worry about anymore deployments , i do however miss the military life , but hopefully he is going to be able to re enlist in the airforce soon to finish out the 6 years he had left in the navy.
I also recently on november 20th had to get a new Pulmonary valve put in . That on its own was a challenge for me with being a mom also. I was up in Missouri at the time (that is where my husband is from ) My valve I currently had due to being pregnant played out which is rare for a bovine. I only had my bovine for 4 years. I went a head and got the melody valve put in via cath. It seems to be doing well now and I am able to keep up with Myranda a little bit better.
One thing about being a CHD mom that will always be in the back of my mind is that I am slower . I worry about being able to keep up with Myranda as she gets older. I am waiting on the day to come when Myranda asks me about my heart and I plan on telling her the entire story and how she is a miracle to both her dad and I .
It was hard having my valve replaced and being down for a few days. I could only imagine having to go through a complete open heart surgery and being a mom . It killed me not being able to pick up Myranda for a week.
I am looking forward to this next year and what life has in store for my husband and I. My life has always been an interesting journey for some and a lot of hope for others. With the love of my family I have made it this far in life. Being 35 just means beating the odds of very little hope my mom and dad were given. Being a mom with 22q and CHD just means I accomplished something people told me I never would do.
Life is an open door for accomplishments I have learned in the past few years . I never thought someone like my husband would come along and accept me beyond my flaws. I never thought at 34 years old I would be hearing its a girl and at 35 be hearing her say mama. CHD and 22q does not have to mean there isn't life and you have to live in a bubble. I have done so much that many said I couldn't and am all the time proving people wrong. I may not have been able to hold down a job , but i can at least say I have the most important job of all being the best mom I can be with a broken heart and a few missing pieces to the most b beautiful little angel that we were blessed to raise. I do not regret anything in life I have done.
Life is not always beautiful, sometimes its just plain hard. it may not always be beautiful but it can be one of the most beautiful rides you will ever take. Don't ever hold back our hide in a bubble. A bubble can only go so far without popping. Get out experience life enjoy it grab it by the horns and keep riding.
Myranda has taught me one of the most beautiful things in life are answered prayers and god will pay attn to those that deserve it. CHD and 22q doesn't stop me from being a mom . I can only hope and pray that valve procedures get a lot more easier.
