mommiesquietplace

@mommiesquietplace
Health wellness, lifestyle blogger, parent mentor and advocate I write about our jourey of how one family copes living with DiGeorge Syndrome (22q11.2 Deletion Syndrome)
Community Voices

Genetic condition that effected your mental health?

What if you had a genetic condition that effected your #MentalHealth?

This post is one of the more challenging post I have had to write. I was ask how does 22q affect me personally and how does it affect my daughter. My friend kim and I exchanged post for a guest post on one another blog. Kim writes a blog about mental health. I never really know how to answer this because I don’t want to give off the stigma that because I have ptsd and adhd that all of us who have 22q have ptsd and adhd.I also have #PanicDisorder and #Syncope.

ptsd is not from the 22q but the abuse I endured as a child and the trauma I experienced which I wrote a book about and have not yet published. I would like to publish it but I am working on how I have grown and healed and yes even recovered from the extreme aspects of ptsd. Writing has been my way to cope and a way I release all of what I experienced. It was a journey of self-discovery and growth. Having my daughter gave me the reason to keep pushing forward. At the time during recovery that was my reason but if your child is the reason for recovery you won’t recover fully. I had to fail 3 times and 3 different in patient stays while I healed. I am currently writing about that time. I am writing about how my faith helped push me though the hard times and every day I need to make choices with effort with the thoughts of would this or not hinder my recovery. After having symptoms gone for almost 10 years and completely recovered for nearly 5. I have come a long way from the shy quiet person people used to walk all over.

support

I use my voice and advocate as well as mentor for others who were or are dealing with what I went through when I first was diagnose when I was 21 years old. Still just a kid trying to figure my way in the world. Now I am 35 I have my 11 year old I have been doing a lot of self-reflecting and kims questions couldn’t have come at a better time in my life. My personal first hand experiences were not easy we are not all cookie cutters no two people with this genetic disorder are the same so treatment has to be tailored. 22q is a total body disorder. It effects from head to toes. There are doctors and specialist my daughter and I both see that help us heal as well as we are doing. We are doing as well as we are because of my personal firsthand experience and the help other drs who have helped us

doubts

tt can be a lonely place for a mother too, no one really knows what you are going through, until, that is, when you meet someone else in the same boat. It’s a huge relief to connect with other families, other mothers who have had the same experience in my case there is no boat for me. I don’t have many others who are adults with 22q and have children with 22q.

I don’t really fit in. I had to make peace with the fact I was born to stand out. Bella and I are struggling with the same daily concerns as you are but we don’t get that sense of a ‘new’ family when we join support groups. I had to create my own. Because of the identification and understanding that you get from each other. Support groups are vital really – they make a difference between feeling hope and despair, between hanging on in there and giving up.

That is why I created my blog it has helped let me have a place to brain dump while fining others who accept Bella and I and my family all with how we are and where we are at without judgements. It’s only now looking back that I can see the huge emotional and psychological toll that loving and caring for a child with special needs can have on a family. Even my friends have been affected to a certain extent.

The times I have had to ask for help or the times I have had to retreat into my own cave. All my relationships have been affected. I only have a few handful of people I can count on my hand that I can call on and count on. When I created my blog it open an entire world that grew beyond my own control. Followers, haters, copy caters and even people who go out of their way to excluded us because we are not one of them!

I have my own truth and they have theirs.

There is a large community that reads my blog and just listening to each other and connecting one on one has been the most helpful. People need to know they are not alone. Including People like Bella and myself.

Isolating and staying up into the wee hours of the am studying side effects of medications reading articles after articles that all people who have 22q have a chance of hearing voices in their head is the stuff night mares are made up of. I don’t hear voices. So what is wrong with me and a million other what if or what is wrong questions go through my head.

I am also always second guessing what I thought I understood about 22q from watching my siblings and father to how raising my own child with 22q my first hand experiences is unlike any one else’s who’s boat do I fit into? The hardest part is the stigma that even parents of kids and adults have on people with 22q that we all ride the short bus and the shock when we wipe our own butts it sticking the lack of understanding and support.

That’s the stuff that makes some of my 22q friends not even try because it like why bother they will look at us the way they do anyhow. I had to learn all of this with a handful of people online who were supposed to be there for support instead they watch and stare and then glare that I am happy. I post a yay I did it post I hear crickets I post oh no one of us is experience a flair up I get all the hugs and prayers in the world kind of responses

. Then you add the people who have to show they know more and can do more than you do. Those are the insecure people who like to copycat and take my ideas and get credit for it and are offended when I call them out on it. So instead of dealing with all of that drama I have excused myself instead of seeking support from others in the 22q groups and find support elsewhere. I have so many other supportive people who I adore and they adore me just as much.

The toll 22q can take on sometimes stigma is strong. I wish it wasn’t

mental health and having any kind of disorder is a challenge but when you have been dealt the card of having a genetic disorder that you passed on to your own child you are looked at like a freak of nature and are to be avoided at all cost.

Thank you for reading this post is hard to express and I only hope these words can help someone out there to know they are not alone.

With the help of family, friends skills and medications and working out I have over come the odds and recovered but it wasn’t easy. when I was inpatient stay they looked at me like I was to young to be there and that on the outside looked like I had my life pulled together. Perhaps life around me was okay but inside I battled the ptsd night mares and flash backs and the birth of my child with the same genetic disorder it was a hard time but the love and support of my husband and friends after I opened up and told them what was going on and wanted help the healing process began. I found myself though my faith. Sometimes we have to reach rock bottom before we see the top

Thank you!

Community Voices

What if you had a genetic condition that effected your menta

This post is one of the more challenging post I have had to write. I was ask how does 22q affect me personally and how does it affect my daughter. My friend kim and I exchanged post for a guest post on one another blog. Kim writes a blog about #MentalHealth. I never really know how to answer this because I don’t want to give off the stigma that because I have ptsd and adhd that all of us who have 22q have ptsd and adhd.I also have #PanicDisorder and #Syncope.

My daughter she has the them issues minus the ptsd aspects. ptsd is not from the 22q but the abuse I endured as a child and the trauma I experienced which I wrote a book about and have not yet published. I would like to publish it but I am working on how I have grown and healed and yes even recovered from the extreme aspects of ptsd. Writing has been my way to cope and a way I release all of what I experienced. It was a journey of self-discovery and growth. Having my daughter gave me the reason to keep pushing forward. At the time during recovery that was my reason but if your child is the reason for recovery you won’t recover fully. I had to fail 3 times and 3 different in patient stays while I healed. I am currently writing about that time. I am writing about how my faith helped push me though the hard times and every day I need to make choices with effort with the thoughts of would this or not hinder my recovery. After having symptoms gone for almost 10 years and completely recovered for nearly 5. I have come a long way from the shy quiet person people used to walk all over.

support

I use my voice and advocate as well as mentor for others who were or are dealing with what I went through when I first was diagnose when I was 21 years old. Still just a kid trying to figure my way in the world. Now I am 35 I have my 11 year old I have been doing a lot of self-reflecting and kims questions couldn’t have come at a better time in my life. My personal first hand experiences were not easy we are not all cookie cutters no two people with this genetic disorder are the same so treatment has to be tailored. 22q is a total body disorder. It effects from head to toes. There are doctors and specialist my daughter and I both see that help us heal as well as we are doing. We are doing as well as we are because of my personal firsthand experience and the help other drs who have helped us

doubts

tt can be a lonely place for a mother too, no one really knows what you are going through, until, that is, when you meet someone else in the same boat. It’s a huge relief to connect with other families, other mothers who have had the same experience in my case there is no boat for me. I don’t have many others who are adults with 22q and have children with 22q.

I don’t really fit in. I had to make peace with the fact I was born to stand out. Bella and I are struggling with the same daily concerns as you are but we don’t get that sense of a ‘new’ family when we join support groups. I had to create my own. Because of the identification and understanding that you get from each other. Support groups are vital really – they make a difference between feeling hope and despair, between hanging on in there and giving up.

That is why I created my blog it has helped let me have a place to brain dump while fining others who accept Bella and I and my family all with how we are and where we are at without judgements. It’s only now looking back that I can see the huge emotional and psychological toll that loving and caring for a child with special needs can have on a family. Even my friends have been affected to a certain extent.

The times I have had to ask for help or the times I have had to retreat into my own cave. All my relationships have been affected. I only have a few handful of people I can count on my hand that I can call on and count on. When I created my blog it open an entire world that grew beyond my own control. Followers, haters, copy caters and even people who go out of their way to excluded us because we are not one of them!

I have my own truth and they have theirs.

There is a large community that reads my blog and just listening to each other and connecting one on one has been the most helpful. People need to know they are not alone. Including People like Bella and myself.

Isolating and staying up into the wee hours of the am studying side effects of medications reading articles after articles that all people who have 22q have a chance of hearing voices in their head is the stuff night mares are made up of. I don’t hear voices. So what is wrong with me and a million other what if or what is wrong questions go through my head.

I am also always second guessing what I thought I understood about 22q from watching my siblings and father to how raising my own child with 22q my first hand experiences is unlike any one else’s who’s boat do I fit into? The hardest part is the stigma that even parents of kids and adults have on people with 22q that we all ride the short bus and the shock when we wipe our own butts it sticking the lack of understanding and support.

That’s the stuff that makes some of my 22q friends not even try because it like why bother they will look at us the way they do anyhow. I had to learn all of this with a handful of people online who were supposed to be there for support instead they watch and stare and then glare that I am happy. I post a yay I did it post I hear crickets I post oh no one of us is experience a flair up I get all the hugs and prayers in the world kind of responses

. Then you add the people who have to show they know more and can do more than you do. Those are the insecure people who like to copycat and take my ideas and get credit for it and are offended when I call them out on it. So instead of dealing with all of that drama I have excused myself instead of seeking support from others in the 22q groups and find support elsewhere. I have so many other supportive people who I adore and they adore me just as much.

The toll 22q can take on sometimes stigma is strong. I wish it wasn’t

Mental health and having any kind of disorder is a challenge but when you have been dealt the card of having a genetic disorder that you passed on to your own child you are looked at like a freak of nature and are to be avoided at all cost.

Thank you for reading this post is hard to express and I only hope these words can help someone out there to know they are not alone.

With the help of family, friends skills and medications and working out I have over come the odds and recovered but it wasn’t easy. when I was inpatient stay they looked at me like I was to young to be there and that on the outside looked like I had my life pulled together. Perhaps life around me was okay but inside I battled the ptsd night mares and flash backs and the birth of my child with the same genetic disorder it was a hard time but the love and support of my husband and friends after I opened up and told them what was going on and wanted help the healing process began. I found myself though my faith. Sometimes we have to reach rock bottom before we see the top

Thank you!

Community Voices

Girls on the run 5k with mild cp and 22q deletion syndrome

My daughter has been training for a 5k race she is 12 years old with mild form of spastic cerebral palsy and a genetic chromosome deletion called 22q11.2 also known as DiGeorge syndrome and velocardiofacial syndrom. This is her last year running the 5k girls on the run race because she is moving on to middle school in the fall. Bella is a beautiful redhead with bright blue eyes. Bella is smart, fun and strongwilled determined to meet her own personal goals dispite pushing through some tough leg pains on ocassion.
Bella has kept up with girls on the run since she was in 3rd grade. Missed days of school to attend physical theraphy appoitments, occupational appoitment and speech on top of psychology appoitments.
we made it through one step at a time achieving one goal at a time.
I wasnt to encourage parents of newly diagosed kid that the moutian we face is huge we can achieve thing in our own pace in our own time. It not about winning first place in the race but building endurance and to keep pressing forward even when our legs mind and hearts feel like jelly piles of goo.
I too have 22q and having my child has shown me humans are made to achieve great things, push past limits and standards set by others.
we are proof that the power of perspective is a powerful force to be reconed with
thanks for reading
#ChronicIllness #MentalHealth #22q11 .2 #CerebralPalsy #Running #Health #Parenting #SpecialNeeds #ADHD

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Community Voices

I am 35 have my 11 year old I have been doing a lot of self-reflecting  22q is a total body disorder. It effects from head to toes.
Life can be a lonely place for a mother too, no one really knows what you are going through, until, that is, when you meet someone else in the same boat. It’s a huge relief to connect with other families, other mothers who have had the same experience in my case there is no boat for me. I don’t have many others who are adults with 22q and have children with 22q.
I don’t really fit in. I had to make peace with the fact I was born to stand out. Bella and I are struggling with the same daily concerns as you are but we don’t get that sense of a ‘new’ family when we join support groups. I had to create my own.
 A few years ago a friend and I started a rare genetics support group that met up locally in a Mcdonalds  
I shared how I passed out once at a children’s birthday party. Where my daughter saw me curled up. I ended up in the hospital  few times having my stomach pumped in what I now look back and see was my cry for attention and help because I didn’t understand at the time what was happening to me why I was throwing up and passing out when the world became overwhelming.
Stress and panic did a number on me. Being a new mom is fighting but being a mom to a child who has the same genetic disorder that I have was down right scary. What kept playing in my mind was would she be just like my siblings who have 22q and much more sever conditions from 22q would my child pass away like my brother did while he was a sleep. I had so many questions none of the so called experts could answer and I had to become my own expert.
 It put me in the position I am now with a understanding that not many others have from all perspectives mom adult sibling of someone with 22q I seen the belly of the beast sort to speak but I’ve also seen hope and others living with it and not even knowing about it like myself until I was 21. Sure I appear fine now as does my child but that came with a lot of hard soul searching, group and individual therapy sessions that included exposure therapy, eft tapping and cbt as well as dbt skills. writing journals and dumping out old thoughts for new ones and new truths and discovering my worth in God
 only now looking back that I can see the huge emotional and psychological toll that loving and caring for a child with special needs can have on a family.
 I had to learn my limits. learn it was okay to not be okay.