22q and parent concerns worries and fears
Why worry? If you’ve done the very best you can, worrying won’t make it any better.” – Walt Disney
So many people ask me how do I deal with stress and worry? AS a mom and as a person who has 22q11.2 a lot of things you might not consider are worries and concerns a lot of them I don't post on social media because that would not be productive and it would on my end be seen as attention seeking from other moms who have children with what appears t to be much more sever symptoms of 22q but although the symptoms we have now are not in the high risk there is at any given moment a flu bug just around the corner or the fevers and the tremmers are not something we shouldn't worry about always be mindful about those mystery temps.
potentional seizure or a fainting spell from tempature disregulation which some parents of normal kids have made fun of us for becuase we might seem to make more then what things need to be. In the extreem heat we don't do well I worrie about camping and bug bites turning into infections and will my child wake up in the am the next day as my brother didnt' one day.
In a matter of a short time learn how short life is. I don't sweat the small stuff to much. I attempt to go with the flow and have firm boundaries in place to help matain my sanity but it has not always bene the case.
as a mom we think our kid will not amount to the type of excellence we see in other kids even some of us with kids who have 22q we see older adults like myself who are married raising kids of their own and think I don't simply see that for my child right now! Why worry about the future. They are small enjoy them while you got them life is to short to sweat the small things all the time. So what if I'm 36 and can't drive I get around! wait that sounds bad lol there are options always, in metro city's public transportation is easy to manage with a map and a good bus pass. Life skills cooking, time management sure that slips by even the best of us some times,
Planners accessories the stupid smart phones all have apps for one thing or another that help with life. Assistive devices like bella's orthopedic inserts and medications and things that manage life easier yes the cost adds up the bills are endless but we make it work how we just do. Thinking you or your kid wont measure up isn't good enough just because you and your child have 22q.
A lot of people don't want to see me doing well and I'm okay with that we are not all born for everyone to like us. I found soultions creative soultions I might add with the help of friends, therapist and social workers. Life has it's ups and downs. If you can see and hear your child be thankful count every single minute. I've seen the worst of this syndrome a brother passing at 6 years old.
I'm survirving sometimes out of guilt because I have my beautiful child with health issues of her own and I have health issues of my own too. I blog to get things out sometimes the words don't come out like how I owuld like to I worrie what others think of my website and why would people just read and not reply to me but reply to otherss who have 22q or why they reply to others who have children with 22q we parents who have 22q and have a child with 22q and are siblings and a daughter as my father also has 22q we have a different prespective and that simple swtich in prespective makes the world of difference from can't do wont do and will do no matter what the doctors say I say find a person who you trust and open up to about your worries and concerns on point the only person I could tell my concerns too was God but then I created this litle old blog in cyber space and in the bible is says fear not. go a head look it up. I don't worry beacause at least I'm not dead. it's simply clear as black and white there is no grey area. I hope you read this blog maybe you found it via a goodle search fileld with worry and dread about your child future and came looking for that magical pill called hope. I am sorry to say I am not always hopefull. I do stress and worry I just don't plaster it all over facebook. I call on my higher source, I turn to my husband and my friends for support wisdom and guidance and get this I actually take their advice (most of the time) Do you have any worries or concerns about living with 22q or raising a child with 22q. I would love to hear about them in the comments below let's change the concersation from why me to why not me. our hurts are in our path our place to help inspire others and I would liek to think that's just what this little old blog has done. Accorging to the hundred of emails I get. If you would like to leave an email to me feel free to message me or leave a comment below. I would actually like to hear from you. until the next blog post keep your chin up and sometimes we have to fake it until we make it thank you for reading