how to manage stress?

One of the questions I often am asked the most is now that I’m 35 and I’m raising Bella who is 11 which we all “appear not like 22q typical children” are we doing okay for the most part? depends on who ask I say sure. Why because they only want to hear their truth. They want to understand 22q the struggles and setbacks.

The failures I’ve had had with health such as gasteroparies dosen’t seem to bat an eye lash with some people after they ask me. They don’t know the pain I have daily the throwing up the faiting feeling the exhausted all the time the frustrations of being isaolated and not supported by a community that says they are suppose to support those of us with 22q.. The majory of people are only intereted in how well Bella has turned out and basically if I can function as a parent because I have 22q. Not everyone has these questions mind you most are understanding the parents who struggle with dealing with the disorder and it’s many complicated symptoms as an adult I also have those symptoms. I learned to adapt and adjust and manage own my own because I didn’t have any other choice.

Over the years of blogging I have shared content about Bella and my journey with doctors but now we just deal with every week visits to the pt and psychologist. those are soon coming to an end as well. We don’t really need much info or help from U of M either there is one more final visit and it’s either surgery or it’s not. Bella has been seeing the clinical team to help us ngativate her issues basically just watching and monitoring the success and struggles we have had since Bella was 5 years old. Bella being 11 is now the time we start ending things medical related because things are going well. Sometimes we take 3 steps forward and 3 steps back and we have a great team from her doctors office to the school front. Bella is mainstreem with an Iep and doing well.

Bella struggles with adhd isuses and social issues of course but Bella is in the 5th grade and is making the transition to middle school. We are not in crisis but there are struggles and challanges and Bella struggles with leg pains while I struggle with pains associated with gasteroparies. I’m able to take care of me because I have a supportive husband and a handful of friends I can count on.

some of my friends have asked what are these coping skills I talk about when it comes to dealing with my aniexity and panic attacks.

The first step is you gotta have your mental break down where you reach rock bottom.

I had to build myself up after being hospitalized struggling with the feeling like poop most days after Bella was born because of others online who bullied me and picked on me. There are so many others who think I don’t have 22q because I haven’t shoved my fish test in their faces (yet) I have a family history of 22q My father has it, 3 siblings have it, one passed away when he was 6. My own daughter has it. I know 22q from so many factors that are apart of it that the different perspectives I have about 22q. I have learns the tricks and tips only because I have had to. I worked hard and continure to always grow as a person.

I don’t allow 22q to get in the way in fact we didn’t know I had it until I was 24. I’m 35 now have had lot’s of mentoring and training from different advocates as well as author mentors. I’m working on a book but it didn’t come easy not one bit.

The tricks and tips I find that are most usefull are listed below. I hope this helps you feel not alone.

use mindfulness and meditations. I find comfort in spiritual practices. I have used eft tapping when the going is tough I have syncope but been great about no passing out since my daughter was 2 she is 11 now. Back when she was 2 I had a meltdown from all of the online bullying and others claiming things about me ect. I learn boundaries and coping method. I have to say eft helps and meditatiom. I also write and blog on my website but haven't had much to blog about latley life is incredible right now. My ptsd makes me on hyper alert so I use theraphy sessions as a monthly tune up to check in and to prevent relapses as I have a mini me with the same disorder and she has to learn by my example

Sometimes you get the hope that your going to make it and succeed and then others come along and stab you in the back. The online bullies remember them. The main lessons I have learned is,,,

When others attempt to try and crush your dreams for their own ego just brush it off and keep moving forward act professional and keep chasing after your dreams and goals. More to come in the New Year.

The systems are in place and I’m so glad you guys are sticking around I did take a social media break and worked on my boundaries if you want help with anything 22q related, a pm message or questions please be a subscriber and follow the fan page. Then I can know your truly interested and like what I share.

Thanks so much for all of the support.

est _ 2014.jpg

SPED (Special Education), Autism, Dyslexia, and ADHD (Attention Deficit Hyperactivity Disorder) awareness.

Both Bella and I have 22q both of us have ADHD there is very limited resources and help because we are not on spectrum.

I have 22q.JPG

My goal for the new year is to bring more awareness in the new year of what life is like with having to attend weekly therapy sessions and the struggle of keeping up with being mainstream with an IEP in the 5th grade in public school.

Organization is a challenge with thoughts and things

Having it as an adult is exhausting the sticky notes and alarms on my phone for reminders.

The distractions the overwhelm feeling over multiple steps.

Trying to remember to maintain friendships while raising a child with the same issues. Making time for romance and quality time with spouse comes natal and spontaneous for those with out adhd.

For people like myself these things have to be plan out.

Routines structures help so does monthly tune ups with my own therapist so I don't relapse.

10 years and going strong.

Weekly recovery group at church had reminded me of how far along our family has grown.

It not easy it got easier because I didn't sulk and whine about it I buckled up buttercup and handled myself and my issues.

My mini me watching me was my motivator

The part of my book I am writing is of my recovery the journey and the personal first hand experiences the struggle of the others online I took a long social media break and time away from blogging. With the support of the recovery group I am inspired to keep writing. I have a different perspective my truth is my journey.

I am no longer others target. I've learn to let toxic people go.

I am thankful for the support of friends and loyal readers.

My blog since 2014 had grown internationally and accomplish so much from being a parent advocate to a champion of hope.

I look forward to what the new year is going to bring

This is the week of SPED (Special Education), Autism, Dyslexia, and ADHD (Attention Deficit Hyperactivity Disorder) awareness. For all the children who struggle every day to succeed in a world that does not recognize their gifts and talents, and for those who are walking beside them, please let this be a gentle reminder to be kind and accepting of ALL people. Recognize that the "playing field" is not always a level surface. Children who learn differently are not weird. They are merely gifted in ways that our society does not value. Yet they want what everyone else wants: To be accepted.

If you choose, please copy and paste this in honor of all children who are deemed "different". Our world would be far less beautiful without them.

https://www.mommiesquietplace.com still going strong

Routines and Adhd

Some of you have asked what is a typical week night routine in our home looks like.

Structure and routines help typical children thrive but when your child has adhd both physical and emotional adhd it helps to have consistent routines.

Here is a copy of our routines chart.

Mind you Bella is 11 but still needs routine changes set her world off in a huge way so we created a chart a while back using a ticket time reward system for positives reinforcement. A bucket filled with goodies for her to keep on with organizational skills and time managements skills.

Creating a reward at the end of the week helps with intrinsic values.

Develops a strong work ethics

Adhd both physical and emotional its not only about pills but skills to that help.

Medication is only half of the battle.

I will not list her meds here as I don't want a bunch of people going out getting meds their children might not need.

However they have helped and even teachers notice a difference with Bella on meds vs without meds.

The chart helps make Bella more in control of her actions and helps remind her with out my having to prompt her every 5 minutes.

I will share this up on the blog too.

For more check out our website filled with tips and tricks we have used from my first hand personal experience living with 22q11.2 deletion syndrome.

A fun chart she colored helped make her take ownership of this routine empowers her to follow the steps and if she argues we have a list of house rules we refer to as a reminder. Cutting down on the struggles and makes life easier. So many parents I have mentored have asked me to share what we use as routines. I hope this helps

Also this allows more time for hubby and I to connect each night even if sometimes I fall a sleep on the couch watching tv

We also attend physical theraphy sessions to help with her leg pains that keep her up at night from the MILD CP and we have psychology sessions to help. However over the past two months we have been keeping up with Bella’s school work and she’s had a swimming lesson in there that was a week long. Before that Bella was feeling runed down and had a cold in Sept. There are always going to be changes to routines we can’t do the same thing day in and day out but typically this is our normal routine unless we have a outting such as going to the movies or out to eat for dinner as a family

I hope this has helped as some of you have asked to see a routine chart that we use.

https://www.mommiesquietplace.com

routine chart.jpg

#WhyIwrite

Bellamompark2.jpg
  • #WhyIWrite I write to share our journey and help educate people out side of the 22q #digeorgesyndrome community learn about what living with a missing piece of dna in the #22q #chromosome is truly like as a mom to a #22qtie and as an adult with #22q11deletionsyndrome also as a sibling and daughter.
    My prespecrive comes from every angle that some others might not have.
    I have seen the down side and the upside and all the stuff inbetween.
    My 11 year old is my why I write with her co occurring disorders and symptoms
    I share the treatment plans and options we pick and choose to hopefully help others.
    I write find a glimps of hope and light in the darkness and help take away the fear of the unknown by showing what is known of this uncommonly spoken about genetic deletion
    Sharing my truth one dr teacher nurse at a time.
    To find the right agent and publisher for my story now that the tricky part the story is in a pdf the first draft part completed
    The quiry letters and the editing process isn't fun the Nos or your not a right fit or what I'm looking for in a mentee I want someone closer younger older
    Already struggling in a world where I don't fit in. I was born unique in a world that likes conformity and division but blogging and vlogging has helped me connect and find my tribe. Mentoring others has not only helped them but also has helped me. To know I'm not alone on a deserted island.
    To be thankful of our journey isn't always easy with dr visits test and the fight to get my childs needs and my own needs met while not being disabled enough for services we could truly use.
    I write for not only myself but you the reader the confused fearful parent grandparent ect is #whyiwrite even if I have only helped one person keeping my website has been worth the effort and every penny spent.
    I don't do it for attention or for the fortune I do it so not one more person has to go though this journey alone like I have.
    Thank you to everyone who has encourage supported or I have mentored

mandy.jpg

Adhd,Aniexity 22q11.2 deletion syndrome- Bella's coping skills and meds

Adhd,Aniexity 22q11.2 deletion syndrome- Bella's coping skills and meds

Adam and I are sitting next to one another he's playing box after we did laundry and cough up the house this weekend being Canadian thanksgiving we relaxed and did deep cleaning I did the kitchen while he rearranged the entire living room bella is enjoying time on her kindle a coping skill to deal with being med free she has been out of meds since Friday :( When I picked her up after school Friday I was told that she was wild and they noticed the difference with and with out the meds. I would have kept her home on Friday but with all of the days she has away from school for her Tuesday appts which are excused I didn’t want to risk it for later in Nov and winter months where she get’s sick more often since all she has to do is look at a sick person and she get’s sick. I do as well Bella did have her flu shot earlier so I hope that helps her.

Bella is staying home Monday we talked about it and since we have a med review tomorrow she will be missing school because she had a hard time on Friday with out her meds but at least everyone can tell the difference between medicated bella and un medicated bella :( always a silver lining. The big noticable difference was Bella had a spelling test and only had 3 out of 5 correct. It was a hard day Friday.

Bella will be back on Tuesday which is her dog run used to be called the fun run where they raise money for her school and she raised 67 dollars out of her 150 goal I’m looking forward to Tuesday as she will have her meds if the medication gods are nice and the pharmacy has them. and can fill them. That happen one time it’s a popular medication as they work that well.

The way we cope with that time we are in limbo is by going with the flow the best we can. There isn’t much more we can do at this point and there not much we could have done to prevent any of it. When your a bigger kid it’s tough emotionally wanting to be like the other kids but knowing you need to take meds. It was hard when she was out of her one med only one of them and because like I said that’s because her meds need evulating do to aging up gaining a bit more weight and hight it all sucks but if I sat and grumped about how much it sucked nothing would move forward and we would be stuck in the sucky world poor us holding pattern.

Bella is going to struggle she has adhd and panic aniexity issues she's 11 and doing 5th grade mainstream class work with iep and assistance but next year she will not have as much help that she has in middle school and we have to work on transiting her.

The main thing we do weekly is we have been working on coping cat skills and the hops system. It's working well but today Bella's coping skills involved playing games on her kindle and listening to her play list getting lot's of snuggles and hugs.

That is completly okay by us fround upon by others I'm sure but Adhd aniexity is not something we just let slip past us we address and treat it however this is just a timing issue of meds running out and needing the dr approved to get meds. She's still has her 5 pm med we call it guficiane and her bed time med for her leg spasm do to her cerebral palsy pains. Backflen They are welcomed by 5 Bella notices the difference with out the folican in the am. The controlled substance. We are grateful we have such an amazing team all around working with us. Bella is excited she has the dog run on the 9 we knew in advance about this event so I was able to work out the appointment son that day a Tuesday to another week. Bella is all cough up with her school work so far and we have an Iep this week Friday. I'm looking forward to the progress reports and seeing the huge growth the fact that Bella even got anything correct on a spelling test with out meds. Amazes me. Although Bella appears like there is nothing wrong she struggles the difference is we do not allow our struggles to define us. We just have to go about things differently adjust and go with the flow.

I hope this helps encourages you to look into treatment for your child we started by having a neuro psych eval when she was only 5 years old. That was a struggle to get but we got it done and that has been a huge help when it comes to her Iep.

I’m so proud of how far Bella has come.

If you would like to help donate to Bella’s fun run ugh dog run here is her link

If you have any comments or questions you can leave a comment on the blog post or click the contact me button.

Bellamothersday2018.jpg

HAPPY CANADIAN THANKSGIVING WEEKEND

Hello friends

A little video to explain why Thanksgiving is a different day in Canada then in the Usa

I was asked by the kids what makes this day different then the ones in the Usa

enjoy this video

https://www.youtube.com/watch?v=wyQzCc6E8ms

Photo by me

Amanda Ripsam

Gunlake10.jpg

Self care after caregiving.

Mommies.jpg

Today was another dr visit for myself. Us moms gotta take care of us too. I went for a mental health eval and medical eval. No I'm not in crisis infact what ever the word for not in crisis is I am in treatment to actually get treatment not just banaid this and that and to finally get the adhd and sleep issues under control. Ptsd depression and panic is always going to be apart of who I am. Medication or not, treatment or not. It has been over 10 years since I have been in crisis and I am very proud of that. I am thankful at how far our family has come along. I am finally at the stage where I can begin driving. I panic as a passanger, I get distracted easily sometimes and my directional skills lack such as westnage and west main look simular I know they are not but that's how my mind get's scattered. little projects around my home I will start and stop and I have a billion other things always on the go. That's one of the reasons I haven't blog so much I have been focused on myself. I used to be there all the time for others and that I am to a point still. However as I have aged up with living with 22q I have to look at I'm not going to be around as long as the average joe and if I don't tackle these things while I'm young enough and able bodied enough it will get worst then I will be in crisis mode. Preventitive health care is a huge thing for me and my family. Bella being stable and doing so well has been my number one goal now she is out of that risk stage I can focus on myself my health my personal life goals. Work, drive and friends with real people out in the world not just online. I post and share this in hopes it encourages other moms or parents to take a look at their own heath needs mental physical and spiritual health needs as that all needs to be in balance if it's not we can take on other peoples problems get sucked into others unnessary drama and start to spiral backwords. I had a gyno appts and have come to the soultion that it's time for me to get my tubes removed.

I love my Bella she is amazing but I have to look at the facts. I am 35 with a genetic disorder and a ton of health issues associated with having gsteroparies and my pregancy was not an easy one. Is an understatement I had all kinds of high risk complications due to my own health issues and such I had been inpaitent at a few mental hospitals after Bella was born. It took 3 attempts to really get the help and treatment. I went though Dbt, cbt and all kinds of expsoure theraphy for the abuse I endured. As a new mom I was sleep deprived and fearful my child would pass away in her sleep like my 6 year old brother had. Sometimes I get a little panic when Bella gets seizures but she hasn’t had any in years thankfully. The passing out spells are gone I used to get such bad panic attacks I from the ptsd flashbacks my world would crumble and I used to self distruct. I have been better for 10 plus years now. I am so thankful to all of those who have helped me and tought me self confidence, self control and healthy boundaries. with out any of that I wouldn’t have the skill set I do to help mentor other parents I would not be here even.

looking back at how far we have come I have come and grown as I have aged has helped me realize that I was given this mountian to show others how it can be moved. I often meet others who are going though simular things I have in the past and I’m now able to say yes I have been there got the Tee shirt this is how I managed to get things better. I was never really able to express into words how that journey looked for me. I wasn’t sure I wanted it out in the world that I had over dosed on medications and that’s how I got the help I didn’t want the first time or the second it took the third time of treatment for me to really get it. that was over 10 years ago. I was ashamed of my past but being in a recovery at church has open my eyes the 12 step program has helped me realize that no I don’t do drugs, drink or smoke or anything else but food comfort and social media was there to fill a void that void was I felt indeaquate never felt like I belong or good enough for anyone. Friends come and go and been shady or flaky at most I would get used easily by friends and then dropped as soon as they got what they wanted form me being resouces or a connection I have had in the 22q world or writing world. I was seen as not strong enough to stand up to any of these people who used to try and tell me how to live my life. My logic now is if they don’t pay my bills there voices don’t matter. It’s taken a ton of work to get to where I am and this treatment is finally the last steps towards freedom I have been craving. Learning to drive now that my passing out spells are gone, discovering how am I going to start working full time once I’m finished with treatments and surgery for tubal removals. How to cope with others who feel they have to assume and say this that or the other thing behind my back with out coming to me first directly from the source. Attending my weight loss group and working on that has also helped.

That’s all I have been doing working out, writing my food down, so now I have the time with Bella in school to write and blog but thankfully there isn’t much to blog about with aspects of 22q life except to update everyone on this moms going to take care of her self for once with my husband by my side of course but I have been taking care of everyone for 10 years. Now it’s my turn.

I want to loose wight for health reasons as well and have been working hard with my husband together and doing so. I'm in complete recovery and able to fully enjoy all life has to offer. I look forward to sharing my personal journey and meeting others who have simular issues who are experiencing some stages in life like I am. I'm almost an empty nester now that the older 3 step kids are young adults. Bella is 11 and will be entering middle school soon. I have no more excuses not to take care of my own health even insurance isn't an issue any longer. My appts so far has been one with the gyno to talk about the tubal removal and I was approved so that will happen soon.

The other is with the mental health I have kept stable but I want to drive and be able to handle working a full time job. There is a lot of life changes happening and sometimes no any time it's okay to talk and get the treatment with out having to be in crisis. I'm so proud of how far we have come.

I look forward to growth in not only my website and with all of you but in every aspect of my life.

I hope you will still follow along now that I wont be only blogging just about Bella my wonderful 22qtie. I will also be writing about what it's like as a parent to a child with a genetic disorder of it's good bad and messy ways it effected our life.

I will still be working on editing and publishing my own book I have added to it. I am trying to decided if I want to self publish or traditionally publish. Or if I just want to upload it to my website and sell it as it is.

Thank you everyone the past 10 years has been a learning experience both good and bad and I wouldn't trade any of it. Thanks for those who have stuck around and supported us and our journey and still do.

Blogtober Happy First day of October.

Blogtober is here I am so excited it is my favorite month to blog in.

A time of year when bloggers challenge themselves to post everyday for a month.

I heard a lot of people had planned for this in the summer I started to prep mid Aug-September.

Still, I can’t wait to get started! I have already taken a fall leaf photo with water drops on it. see my Instagram post here https://www.instagram.com/p/BoYzm82hfbF/?taken-by=amandaripsam

From what I’ve seen, people take part in blogtober in different ways. Some people like keep it strictly Autumn and Halloween themed, others choose to share their personal stories and just let their readers know what’s going on in their lives. Since I blog about what’s going on in our lives (when I have stuff to blog about) I plan on keeping an Autumn and Halloween Theme since that is Bella favorite time of the year.

I’ve prepared some Halloween and autumn based posts for this month, but my main goal is to blog every day rather than stick to one theme. I’m going to try between the two themes I mention earlier.

I hope you’ll stick around this October so you can see everything I have planned!

I want to shoutout to all who have donated to Bella’s dog run this year. She has raised $55 and is a third of the way to her goal of $150. I have a donation button set up on Fb by mistake I just wanted to share her donation link but it wouldn’t allow me to with out doing so the amount on her page isn’t reflective of the additional 2 others who have donated which is last I looked at the $30 mark. it’s for a great cause the money will go to help fun the kids parties and events at the school the staff have a ton of fun planning these too. I want to help out as much as we can as this is Bella’s last year in Middle school. I know my 22qtie is all grown up and doing really well. She’s fun fun and loves running so this is something she’s bugged me about to ask my friends for weeks and ask me daily if there is any more funds on the donation link

. It might not seem difficult to people who already post daily, but for people like me who sometimes forget to post things or just don’t feel like writing, it seems kind of daunting! That is why I am excited t give blogtober a try. I love writing prompts and it’s a lot better use of my social media time. I have been working on spending way less time interacting with others but I still need to engage in daily adult conversations while kid is at school and hubby is at work as step son sleeps during the day as he works later at night he works closing. As a stay at home mom years ago I come to the conclusion the stay at home mom isn’t for me personally but it is a must to keep Bella healthy and as active as she is. I’m even finally starting to take care of my own health issues but that’s a blog post for another day. If you liked this post please consider liking commenting sharing and don’t forget to subscribe.

if you would like to donate here is the direct link

https://99pledges.com/fund/dogjogakaf/isabella-r?utm_campaign=user-share

A picture of Bella this was her fist day of back to school photo.

5thgrade.jpg
sorry number 16 cut off but it’s something orange. I would love to see your answers and look forward to reading your responses.

sorry number 16 cut off but it’s something orange. I would love to see your answers and look forward to reading your responses.

Donation button up you can now buy us coffee and smoothies

so I've come to find out I'm crappy at updating the website. I know everyone finds out all the info on facebook and other social media. However, I've been crappy at sharing on there as well. So, I guess I owe you. lol

Photo by me Amanda Ripsam used cannon rebel eso t6

Photo by me Amanda Ripsam used cannon rebel eso t6

Check out the kind of photos I can take with my camera. I upgraded I just need more lighting gear and our Youtube channel will be all set. I missed my youtube friends

Think of this post as a life update and a way for me to explain the buy us coffee button is up and you can use paypal money to send it to our donation funds

I'm currently working on loosing weight and that has been a struggle. The car needed $1,000 in repairs but we ended up paying only $500. Now because of the car we had to pay rent late making that any extra $50 for the late fee. I set up a donation page that will get deposited into our paypal account I hope to earn enough to help with some of the medical bills.

There is smaller things like I have to cost of the website the cost of picture day and fundraising this week for Bellas school. The cost of our Biggby dates while we attend Bella’s Tuesday appts psychology and physical theraphy we get a bit of a break in between to work on missed class work such as reading math and all of that fun stuff.

I have been trying to get The One family copes with 22q book complated but it’s going a different direction with agents suggestions. Editing is kicking my butt it’s almost completed, and taking care of my own health physical and spiritual. I am doing a 12 step program for food addiction which also helps with other issues because under these lines of addiction of any kind the thing about it tends to be excape or advoid. I’m journaling and answering questions to the 12 step program I considered posting those answers out on the world wide web but also know who my aduiance is lol I love you guys but sometimes you get a big squirly and overy concern.

I have also made the decision to not have any more beautiful children the rate of me having another 22q child is high. with my father my siblings myself and Bella who has 22q I think being 35 and already a high risk pregancy then add the gasteroparies it wouldn’t be a good pregancy for me. I admit I also want to have fun and enjoy life more. Bella is stable now and is doing well so well we are finally able to focus on my issues. I have a few doctors vists set up. One was eye glasses the other the gyno then there a physicans assistant I will be meeting to be my new family dr it’s an amazing office where oddly every doctor there are women. It’s one of the places my comerical insurance approves. I’m also going to be dealing with reader glasses vs bi focals. I’m 35 and need bifocals but I can get away with just readers at 1.25 for now and my typical glasses I’m far sighted with astigism

I'm also still enjoying Adam working a lot but I get bored during the day and I am trying to not spend so much time online. I want my online time to be productive (what ever that looks like) Thanks to Fb Instagram and Twitter for being big time wasters at the same time it’s allowed me to connect with all of you which I am forever thankful for. With that said, I should have more time to focus on writing and updating things after I get home.

I also need an editor who wants to work in exchange for food hair or photography. I can dream right/ I had an editor friend help me with my book and let’s just say we have taken it a different direction I wanted just a simple E book and a magazine article here or there but they are dreaming better and bigger for me.

There ya have it. Life update I know I suck at it sorry guys. I have posted 4 post recently I hope you read them and enjoyed

Thank you for reading

Eyes and aging 22q and adult health issues

Amandaandbella.jpg

Another dr this one eye exam dr didn't know/remember what 22q11.2 was.
If anyone going to change awareness out side of 22q world it is me.
Not many others do different one dr nurse specialist at a time will learn from Bella and I and others like us.
This is why I keep mommies quiet place.
Both Bella and I had eye exam today
Bella astigmatism and near sighted scored two pairs of glasses and I scored bifocals and first stage cataracts which I have known of for a year are still same they haven't gotten worst since last exam.
Vision is just blurrier vision so readers and glasses or bifocals.

I picked up glasses and readers. 1.25 which are not so easy to find by the way

I'm to young for bifocals lol 35 and falling apart.
Should be able to show off our new glasses by the 29th
Thanking the insurance people.

Life update: Where did summer go?

I blinked again!!

Summer is almost over we had such a laid back fun easy summer as compared to last summer I had to pinch myself. Adam and I even worked on our bedroom and decluttted our secret hording stash it's now a fully functional bedroom that looks like two adults live in it. My apartment has had no direction or plan for decorating or organizating I just kind of put things here or there where ever I found the space. I really had a stressfull school year and last summer with Bella and that reflected in my home. It is now fully back together all of it takes just minutes to clean up and put things away now. Structure and routines are back in place and tomorrow night we start night one of heading to bed at a reasonable hour.

Another change is our church we had been attending sold and we were churchless. I am happy to report that we even are attending a new to us church.

On top of newness Adam started a new job back in June and it's working out so well. Our budget is set for an entire year on an excel spread sheet and we are sticking with it.

Adam and I have also signed up for real appeal a weight loss program and I will be blogging about my personal weight loss journey to help myself to keep track but a lot of you have mention you also struggle with weight loss.

 I haven't really been blogging as much as I had hoped this year but I did get some focus and worked a lot on my book. I did updates for my apartment and worked on my photography

Over the year online we have:

We have enjoyed earning funds with everyone online for The American Heart association.

Bella had earned top earner in her 4th grade year.

Raising just over 600 dollars.

She couldn't have done it with out all of your support.

My goal is to make her last year of elementary school her 5th grade an even larger success in her fund raising efforts. As well as her over all school achievement educational and social.

Bella has 22q deletion and mild cp takes part in girls on the run and we run the 5k race every year. All while attending multiple doctor visits. Thankfully we nailed down all of her sessions to two specialist Pt for aqua therapy oh and we can't forget her amazing dentist who keep her smile so pretty and the pt that helps her for her leg pains and psychology for social issues she has at school and help with the adhd and anxiety issues she has after her neuro evulation we have finally knocked majority of her appointments and just have two more U of M trips left this year. A scope to determine if we are going to do surgery and a sleep study. Still has a few bed time issues but most of the real struggles have been helped with therapy and she has that twice a month now. Pt once a week but we are going to see about every other week to allow her to focus on her studies more this year will he her most difficult year yet. I'm so sad we are almost done with summer but looking forward to what the school year will bring.

For myself I have a new dr I will be starting with Adam new job and having a nicer health insurance that will work with my many issues I myself have from having 22q.

I am going to only focus on blogging when I am online. Or entering sweeps. I am cutting almost all social media out to allow my time to heal and focus on my weight loss.

 

I tend to go to social media for social support when I should be going to those around me but it's often difficult to do that when they don't have a genetic disorder and can't possibly understand what I as a mom wife and women go though at 35 with this condition.

Gasteropaires has taken it's toll on my weight and I need to step up the weight loss in order to help fix some of the issues with it. I wake up chocking in my sleep and it's been scary almost to scary to put out there last time I did I had someone say I was on my death bed and are just waiting for that moment. It was scary since I put my family out there and people started gossiping and making assumptions instead of coming to the source and talking with me personally.

There are others who copy what I do and then try to claim my ideas as theirs and I was just done with all of it. I am dealing with health issues and I do struggle but reaching out has shown that it's not kind to adults with 22q who are also mothers. I'm putting an end to that and developed my back bone. My website is still here and I'm going to start blogging again in Sept I do need the page views and such so I wont have any photos of any kind unless I share it on my website.

 

I got bullied and pushed aside like I didn't matter because I look normal and not like a 22qtie while us 22qties grow up and have kids too. I allowed that to stop me from being social with those who do love and really support us.

 

Thank you everyone for the huge support over the years. As Bella's 5th grade year starts up soon I look forward to getting to know every one and blogging even more.

 

 

Our weekly appointments involved Biggby homework and lots of caffeine for this mommy. Bellla loves frozen hot chocolate

Our weekly appointments involved Biggby homework and lots of caffeine for this mommy. Bellla loves frozen hot chocolate

About Amanda Ripsam

me.jpg

Driven by a passion to educate and empower others who have rare or other health issues , Amanda is an passionate advocate.
Amanda loves taking complex problems and situations and delivering them in an easy-to-digest format for readers to help them understand what life is like from a first hand perspective of living with a rare genetic disorder while advocating on behalf of her own child who has the same disorder called 22q11.2 deletion syndrome.
She's a sucker for coffee meet ups with friends who write and loves hunting for sales and deals she can find on the internet. She is a trained parent mentor with a organization called Parent to Parent where parents call in and can connect with other parents usually Amanda is paired with other parents who have children with the same genetic disorder making her viewed online by hundreds of people on her social media channels. She's also the founder of www.mommiequietplace.com where she shares personal lifestyle health and wellness strategies to share hope compassion and find balance while living with her own health challenges from having 22q11.2. deletion syndrome. She loves coffee, running, and chocolate not always in that order and is always looking for new ways to save money and build a secure financial future for her and her family which leads her hobbies to influence marketing sharing about brands she loves and suggest to other moms who read her blog. She also loves to enter sweepstakes and going on hikes with her husband who is a desk side support tech in the It field and he is the full time income provider while Amanda stays at home care-giving for their child. Amanda is married and a mom and step mom to 3 young adults.
Originally born and raised in Toronto, Ontario, Canada living in a small town in Michigan Amanda uses Linkedin to network with others and enjoys meeting new people. ps if you are looking for a great guy who can help with all of your computer needs Amanda's husband may be able to help.

sneak peak of my book preview: One family copes with 22q

Bellamothersday2018.jpg

I wanted to talk a bit about what my book is that I am writing about. I know a lot of you have seen me on social media post about the different conferences I attend and the many different events and volunteer services we have offered or taken part in promoting, mentoring and being an active part of the 22q community both inside and out of the community comfort zones spreading awareness to one ER dr, Nurse, and teacher at a time.

This journey has been amazing and all of you following along for the ride watching us every step of the way has been a bit strange and odd.

I never intended to put myself or our family out there like that. I do so because I have emails weekly saying how inspiring, and resourceful I have been to them and family's are so grateful that I am willing to step up and sand up for those of us who have 22q and be that advocate. That was never my intention (I don't like the attention) I am shy in person and I had to force myself to step out from behind my blog and take public speaking classes, attend conference and invest the time and money I have put into the Mommies Quiet Place brand and website.

It was only natural I started to write a book to share my personal first hand experience in such a way as to not give that false hope or put the fear of God into the person reading.

My TRUTH my story my way had to be put out there of ALL of the experiences the good the bad and the very messy. Emotionally, physically and spiritually painful journey that life has become but it's only one life we are given and I learned lessons to live each day as if it was the last day here on earth. I have seen the painfully heartbreaking side of this disorder first hand from my brother passing way to the amazing journey of my daughter growing up into her teen years,yes, even some of that painful teen girl drama is painful to see but as she grows I have learned and grown as a person not only on the outside (ha ha weight gain reference but inwardly as well as expanding my social reach both online and off.

I am a wife mom and step mom to 3 young adults. We have our daughter Bella who has 22q and my husband is 11 years older. Both Adam and I have had our personal journey with 22q we both view it from different angles but come at it the same we acknowledge our struggles with fiances, weight, mental and spiritual but we are a team sometimes not always a 50/50 team we do always find that we are out for the same cause the Amazing child we bought into the world together and raise her as well as we can with the limited support and resources that were given to us. (or not given to us)

The book I am writing others are also trying to start blogs and write their own books and kudos to them. Each person journey is different and no two people with this disorder is the same.

The story dives into about my disability' which are invisible. unlike down syndrome which is the chromozone disorder next door #23 ours is #22 on the q arm band. I have a spot about genetics 101 on my tabs pages on my website. 

My faith and what I have went though and how God has helped me discover the joys and accept the lessons learned that I can now pass on to others who are going though the same spot of where I was over 10 plus years ago.

I am thankful how much has changed for the better in the past 5-10 years and for everyone who has helped us though it. I even thank those who have challenged me laughed at me and put me down and talked down to me. That pushed me to prove them ALL wrong. Here I am with my website 5 plus years later.

I want to thank everyone who was super supportive and again not supportive when I was having sever stomach pains digestive problems and concern and assumptions about me. I was diagnosed with gasteroparies over 4 years ago and people even question if I have a eating disorder with how much I have gained.

I do it's called a delayed stomach where the vegans nerve is damage not form the birth of my child but due to complications of having dna missing connective tissues that don't communicate some of the messages my body needs as a result of the genetic piece of dna missing.  Every fiber in our cells are effected in one way or another. We are formed and created in God's image beautifully and fearfully wonderfully made. I know this full well.

My faith was not only challenge but that was the major lesson I learned recovering from a over dose on sleeping pills attempt thanks to a broken messed up abusive childhood up bringing and reflecting on my ability to be a good mother based off judgements stares and laughter at me from even other Moms who have children with 22q but not the 22q them self after my daughter was born. Island even has eliminated births with down syndrome is our disorder and any others like them next once the so called pro lifers learn about these hushed medical mysteries.   The more I learned and joined in groups the more insane I became with fighting the stigma. I got sucked in staying up until 3 am googling symptoms my child and I could have.

Where was I? oh right the book I am working on. I wrote about my past when I was 30 in a mini book just over 8000 words about how it effected me ect. Now I am writing about my recovery the journey the Amazing journey of the bumpy roller coaster ride we have been on.

A lot of people ask me about what is 22q and how does it effect Bella and I. I hate answering that question to so many people I really hate answering it to an ER who had to tell me I was pregnant. I hated telling it to an er dr when I was in the er with my stomach pains every time. I hated telling the er drs when I gave birth and they had all of their medical students come in and listen to my story. I hate the most is explaining to my child's teacher every different teacher she has and she is in 5th grade in the fall about her and her 22q and how it will effect her education because of the panic attacks, missed dr visits and how the disorder makes her learn differently. I made peace with 22q I don't hate 22q I would hate myself and my daughter if that was the case and I worked my butt off to love myself to hate something that is apart (or not apart?) of me.

With the support of my family I have been making my dreams of becoming a christian author a very slow reality it has had many challenges even some that has shaken my internal core.

It takes me 3 times to edit something before I post and even then I find some typing mistakes.

When I was in the small group at a conference I attended my very first year I was physically shaking trembling about to pee myself I kid you not my voice would hardly make a sound as I spoken about the abuse I endured, the journey it took for immigration issues to proverty levels to hearlth issues and while sharing my story the entire story in front of small loving group of Christian women who were supportive I cried and sobbed like a baby.

On the other hand I was free from it all after I shared and spoken up I had ladies thank me and to this day are still friends with me. My fear was sharing my story with other Christians I would be judged, dammed to hell because I was not of god only to discover in a writing assignment I am fearfully and wonderfully made (only in his image) not mine

I am so thankful for the feed back and encouragement I am grateful for the mentors and life coaches. 

I have one lady tell me I did great once I relaxed and just spoke from my heart now I share my story as my heart isn't broken any more and neither is my voice. 

I used to hide  behind my paper and that conference because I to a point was ashamed of sharing my story. After that conference I know who I am in Christ, I am fearfully, wonderfully made. (even if I don't agree with his will or timing) My journey on how I became while in Christ from tortured and abused to wellness and health is amazing there is no way I did any of it on my own. I had the guidance and support and connect of spirit or divine intervention

I have been taking my time in writing my story because I know all good things come to us not in our own time but in his time.

I enjoy early morning sunrises that I share on my Instagram and the love and annoyances that come from parenting a special needs child while having my own invisable chronic  illness.

 

What if your genetic test came back positive?

What if...

your genetic test came back positive?

Would everything turn out okay?

god.jpg

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.

IMG_0723 (2).jpg

Crainofacialawareness month

Crainofaical awareness month

A craniofacial disorder refers to an abnormality of the face and/or the head. Craniofacial differences can result from abnormal growth patterns of the face or skull, which involves soft tissue and bones. A craniofacial condition may include disfigurement brought about by birth defect, disease or trauma.

Our very mild facial difference is caused by a birth defect a deletion on the 22q chromosome.

Here is a video Bella wanted to make for spreading the word about Crainofacial difference awareness month.

https://www.youtube.com/watch?v=H_3YIsGYykU&t=27s

Explaining what 22q11. is and how we look just a little bit different

Bella wants to know how everyone summer is going?  Shares' about her 11 year check up and says to subscribe to our Youtube channel and help us get the 200 subscriber list.  (she's a tad bossy for a boss lady) I let her take over the website for the summer and she is doing a great job with research and coming up with ideas.

Head on over to our Youtube channel and see our latest video on

Crainofacial difference awareness https://ccakids.org/syndromes.html

for more info here is the

Crainofacial awareness website

and here is the 22q foundation's website bonus our story is up there for you to read too.

https://22qfamilyfoundation.org/living-with-22q/22q-stories/isabella

 

mandy.jpg