What if your genetic test came back positive?

What if...

your genetic test came back positive?

Would everything turn out okay?

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What do you have to do for treatment?

What kind of specialist do you see for a condition called Digeorge 22q11.2 deletion syndrome?

how much do you put aside for medical cost?

how do you keep your faith while your entire world changes before your eyes. What if you too get pregnant?

What if you can't have children?

what if your child starts to have mental health issues?

feeding issues? only to grow out of that and find speech and learning delays?

What if your child develops dual diagnoses?

Like 22q and cp?

What If you didn't get that stupid genetic test that changed your entire world upside down and how friends and family view you?

what if people just started to drift away because you gone crazy because you can't get support because you are blocked and ignored every chance you get because your truth is different from the other parents all they want to do is stare laugh and wonder if their own child will turn out just as well or awful as you are depending on who they talked with

What if you were labeled a freak of nature? What if you never told anyone?

what if you were a momma who want and need their child to cling to them for life because of fear they maybe able to wipe their own butts or God forbit get a job, move out and get married to someone who actually loves them and finds them attractive because they don't see the limits you see?

What if you were shocked they actually accomplished something?

What if others didn't want to see you achieve your goals and made it their mission to steel your thunder? and compete and copy all you worked so hard on your own to learn.

What if someone was the voice for others who were voiceless and shared the ups and the downs. Giving hope but not false hope because no two people even in the same family are the exact same some times people in family are polar opposites and you wonder how are you even related. What if you had attended a ton of classes and training and became an advocate with a blog that grew beyond your own control and others hacked and copied it. What if I had proof of that and told you all of those what ifs were my what ifs too!

What if you had an 11 year old who didn't want surgery because she okay sounding hypersnale like Fran dresser  and has the confidence to pull it off well. What if that same child had panic attacks over her home work?

What if the educators suggested home school, doctors suggested home school but homeschooling would only injure the fragile ego she has and tell her she doesn't belong because she not physically disabled other then leg pains that keep her up at night from her dual diagnoses of mild spastic cp but not sick enough to seek the help that is out there and support. What if you a mamma who also has 22q and as you learned about issues your child has you were learning about all of the issues you too have. Only to find others are out there wanting to be and do all you are doing and wonder. really? WTH what if you were told you jumped to conclusions because you figured out how others viewed you and they were shocked you were able to connect the dots.

What if you had just a genetic disorder that was so hidden unless you said here I am look at me no one would bat a eye and just think you looked way younger then you are and you are not taken seriously.

What if?

Here is what I did with all of my what if's I cried and I battle it out with God and study the bible and I prayed and had others pray for me and with me. I had seeker answered up late at night sometimes until 3 am trying to answer all of my what ifs. 

I welcome you to this website where you can search for the what ifs and email any questions form someone who been there, done that and raised a 22q and has 22q on top of step kids, married and has been though this roller coaster ride we call parenting a special needs child.

thanks for reading I hoped you enjoyed this one

I have and had so many what ifs. What are some of you're what ifs?

Over the past 10 plus years my what if's turned out to be all made up in my mind.

look at how beautiful my what if's has turned out!

 

Thank you for reading.

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My worries and concerns as a parent to a child with 22q11.2 deletion

My top 22 worries

1. When I was growing up I watched my siblings struggle with 22q issues from feeding issues to learning and developmental delays. I had none of those issues. I was told feeding issues is one thing I struggled with and seizures and I out grew both of those things. I wasn't tested until I was 21 years old.

2. People think because I have 22q I have special needs. They think I hear voices in my head because that's what experts advice suggest based on a controlled group of people who have mental health issues with 22q. Those people who had mental health issues like hearing voices and seeing things that are not there were not tested until this study. Yet it is being pushed around like it's the bible and end all be all.  There are people who have endrochronic issues like hypocalcuma and a few others who just simply need other forms of treatment then psychotic medications to put a bandaid on a complicated genetic problem.  I do not hear voices, I do not see or hear things that are not there. So does that mean my genetic test was a fake a false positive test? I have other issues that relate to 22q I did not have to deal with until I became an adult. Such as early menapause. I am in the periomenapause stage. Hot flashes are not fun

3. Am I looked at as less than a mom, employee author speaker because I am a adult who looks younger form my age thank you very much vcfs velocardiofacial syndrome that's part of the 22q deletion

4. am I excummicated from support groups because my story and ideas are different then the parents who have kids with 22q am I not relatable because I am an adult with a disablity in their minds. For the adults do I relate well becuase I am a mom and step mom and I have entered the early stages of emptyness syndrome. Our youngest has 22q and is turning 11 on April 27 does that mean I'm not apart of the parent or the adult crews?

5. Where do I fit in? who do I fit in with/

6 I was born to stand out I am rocking my Q and my daughter she while she's rocking her q  notice upper case for adults and lower case for kid's.

7. am I or am I not a 22qtie I'm still cute right ?

8. syncope effects my ablity in driving working passing out will it ever go away? 

9. If doctors keep finding cures for Ed why can't they stop playing with their dicks for one minute and work on real research ? oh right funds money cash

10. I'm vulgar if I cuss I am not old enough or mature if I use a few choice cuss words. I'm Canadian it's what we do when we become passionate and it often will slip out when pissed off. oops sorry not sorry spread the gossip Amanda cusses that's all you have on me go for it.

11. Gossip instead of support prayer chains becoming a way to gossip and not actually do anything productive and focus on the real issues. I'll pray for you. Really? you'll gossip and be all concern about my stomach issues and act like I'm on death's door. Will you offer support if I'm crying in pain from exhaustion of having to be stronger then I really feel?

12. Odn't even get me started on eliminating down syndrome in Iceland will they do that next to all others who have other chromosome disorders once they learn and understand genetics defects  101. Will they realize that 22q is next to downs? We don't look like a downs person so because we can hid our defects under an invisible illness we are of more worth and value? Pro life pro choice is not the issue there is it than? Law of broken ethics

13. Precision med that's all I'm putting about this here who idea was it to start playing God the debated topic the help and harm it does

14. CBD oils a fad or treatment that helpful that the government is trying to make more bank on instead of allowing it to help and do any of the good it can do. I have seen some amazing things from other parents who resulted in learning and using cbd as a treatment however with insurance you have to go though the ends of the earth in order to get any kind of medial assistance with it. The miss use of people doing it just to do it is ruing it for all of those out there who it will help. much more research is needed

15. education employment insurance income all overwhelming emotional garbage we all have to face but with a genetic target on your back saying I have 22q look at me can be harmful or helpful depending on which funding programs you apply for. How seriously you want to be taken based on your talent not genetics

Thank for reading if you liked this post and found it helpful feel free to share with your friends

 

 

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