self-love, self-compassion and saying "no". Setting healthy boundaries.

self-love, self-compassion and saying "no".

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Setting Healthy boundaries


!. Allow yourself some self-love, self compassion and know it’s okay to say no.

Many people think that they don’t deserve to set boundaries. We think we should automatically accept anyone who wants to befriend us on Facebook or go out of our way to help a colleague of a colleague with a recommendation on LinkedIn. Give yourself the permission to set boundaries and say no, I have set up a Facebook fan page for anyone to follow me on there and I can interact with them in my own time on my own terms. A lot of people were upset with me some of the younger adults with 22q took offense when I told them no I don't have time to talk about 22q as a on call therapist for free at any given hour of the day. I have commitments to my family, husband, self care used to take a back burner instead of eating and working out the way I needed to prevent gasteroparies flair ups I would sit for hours sometimes while husband was at work and I had nothing to do other then house work I felt that was my purpose was to be on the other end to help others to know they are not alone. I did mange to set the page up with some ruffled feathers because friends didn't want to take the time to read my blog posts which is just same things I would tell any other person about what's going on if they were to ask. It was easier to ween out who was there for me vers who was there to watch me. I also discovered who to keep on my personal fb page and who get's to hang out on the fan page. If they were on my personal page but didn't go to the fan page I knew then I didn't have their full support and backed off from them. I wanted people around who cheered me on in all I do.

2. Consider your purpose.

what helps when setting boundaries is thinking ahead about how you’d like to use social media. Ask yourself: What purpose does social media serve for me?

Are you using Facebook to keep in touch with friends, to network professionally or both? “What would make you feel safe in terms of how many people you allow [as your friends]? Do you want an open or closed profile? [Are you going to] not put up much personal information and limit access?”

Remember that if you’ve got 800 friends on Facebook — many of whom, it’s safe to say, are acquaintances, at best — all 800 are privy to your personal facts. And that can be risky, So consider what kinds of information you want out there. I learned that the hard way and took a long social media break to work on my own recovery and healing. It's also less stress and less of other people issues that are not mine but now I can say okay call me text me or email me and I can get back to you at such and such time. This in turn allowed me to have more meaningful connections vers the annoying small chat that I can't stand.

3. Set boundaries surrounding time.

Let’s face it: Sites like Facebook can become a black hole, sucking your time into its abyss — if you let them. It’s easy to feel powerless, especially if you’re using social media sites professionally and want to build a supportive circle. This one took the first 3 years of blogging to learn the hard way. I had a wordpress hack and lots all of those followers I didn't get many of them back but they truly didn't support me they were only out for themselves and wanted to have people follow them so they did the I'll do this because I have to beat the numbers game.

I learn that the smaller more engaging audience the more powerful my message got across

The Internet is like a moving target, and with that comes the expectation that we need to respond to people’s comments right away, return email within a day or even hours and stay plugged in so we’re continuously in the know. I felt like there was a target on my back like I was being watched and not very supported it sucked.

But remember that you do have a choice, and “there is no requirement, Rather, figure out what works best for you. Blocking out 15 minutes a day for catching up on comments and your community can still help you make and maintain connections — without feeling stressed and overwhelmed. I now take a half hour in the am before everyone wakes up to posts on social media and by lunch time I return the comments with a more loving positive attitude which reflects and shows

4.Interacting with others

Interacting online can get tricky. tips specifically for interpersonal communication.

Take things slow.

Relationships on the Internet move fast. And we’re not just talking romantic relationships, but interactions of all kinds. When you’re chatting away on your computer in the comfort of home (or the nearest Starbucks), particularly with like-minded people, it feels like you know them intimately. But take your time.

It takes about six to nine months to get to know someone’s character, Since people usually want to present themselves in a positive light — as Chris Rock famously joked, “When you meet someone for the first time, you don’t meet them, you meet their representative” — it takes time to see their true personality. That’s when you see red flags or inconsistencies in their character.

In online interactions, you might get to know the person faster, but either way, “it’s generally better to take it more slowly and approach [your relationships] in a thoughtful and careful way.” Give yourself time to get to know the person before revealing too much about yourself, she added.

Unless of course you decided to join a church and take a 12 step CR class but I'll open up a bit about that story for another time. That might be a posts for offline communication

Do you have any advice for interacting online? I would love to hear your ideas in the comments below




Fear no more anxiety and I

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Anxiety and 22q It can be challanging having to face anxiety. Jesus is a great comfort when we are in times of trouble. We have to do our part as well. Pray and get our mind set right then use the coping skills and tools Doctors and therapist help given us. I recently have been examing my own anxiety issues and remembering the time of my Being in hospitals also can be tough even tougher when you are a mom who has a child with the same disorder. I've been in and our of doctors offices just like Bella has been while I was trying to find out my stomach issues and getting the diagonses of gasteropparies a damage to the vegas nerve was the root cause.
Nothing is too hard for God to handle and He will take care of us. We just have to keep pushing through our anxiety knowing God will help us and is always by our side "Cast all you anxiety on Him because He cares " 1 Peter 5:7 is a scripture I refer

Someting I have leaned is we have to do things scared any ways and even though we pray we might not hear the answer as soon as we pray. Things time time such as healing and handling big scary diagonses like 22q. I just know that God has our back no matter how awful the outcome turns out sometimes. If you don't belive in God that is okay I'm not hear to prach at you. you might even have a higher power sourse you perfer either way the devil or those thoughts like to sit on top of our shoulders telling us we are worthlese, why bother and then the cycle of depression and fear repeasts it's ulgly pattern. Anxiety is not from God. God is love peroid. Anxiety can not be managed alone it takes a lot of effort for someone with anxiety to do day to day task sometimes. I have a fear of driving on the high ways and taking test and a lot fear of public speaking is one of many my aniexty but finding that taking classes and learning how to cope best has helped. In terms of public speaking going to conferences has helped. I am I a world renounded speaker of course not but I have been sharing my story iwth a group of godly women every Monday night we are more like sisters now we shareed our ups as well as downs as we journey the 12 step program together. It has been 10 years since I had an over doses and today they did a clean tocken but I wasn't sure how long I have been clean for. Clean maning over dosing on my aniexty meds to help take away the anxiety. I did that 10 years ago just after my daughter was born it's not easy to admit on this blog but I'm sick and tired of people in foundations for this disorder not understanding exactly wwhat 22q is like with first hand perosnal experience I'm also a mom to a child with 22q and that makes it that much more are. I have a father and 3 siblings who have 22q and that makes me part of the exclueeded group because I know what 22q is and the experts don't want to be proven wrong. I have nothing to prove to them I jsut want to get the word out about our little known disorder and get the correct resouse and support in place instead of the stima of pills for people who struggle with issues are often looked at as werid with our with out 22q. I'm learning daily with reminds from God's direction how far I have come and I am enjoying where I am going. I was remind that I am in the season of rest and recovery but soon I might be aksed to share my journey with more then just a few close friends of mine. It took a lot of work to see the fearless confident women you see today. I worked on character defects step 7.1 in the recovery book and I went back to depression, anxiety and inpaitence. I remember a lot of the pain I had to endure just to get to this confident fun sometimes sickly from gasteroparies flair ups you all have come to know. I had to dig deep even taken a socail media break to focus on myself. People at first took offence to it becuase they assumed I didn't want to add them as a friend or help but I have a handful of parents I mentor I have my own stuff I had to work on and I'm so glad I did it has closed doors for me had me look deep at old past hurts and hang ups. Making a invetory of people who have hurt me and gone out of their way to sort of even to an extent blanck list me. I have a differnt truth then most ofther moms who have 22q I know the good bad and the ulgly parts of this syndrome and how it effects my own family. I can not give you a guide or a how to map for how you will manage your own issues with 22q. Each person with it is effected differently based on where the deltion is and family history. speaking of family my own parents are the top of this invetory lists then there are other minor supporting caracters who's rolls has helped shape my life. We are a product of our parents weather we agree with this or not My own father has 22q I do as well. He might disown me but that's nothing there's no denying. No matter how much I one day hope to find out I was adopted. I'm not I lookd into it when I was younger. I had outside influences other people who encouraged and support me some were godly women others so far away from god but had great loving supportive hearts. Over the years I have learned so much this past feb I had turned 36 and really have been reflecting on how far I have come along our family has come along. I use a lot of coping methods some even consider werid. One therpist told me to put ice cube in my hand to bring down the level of intensity of the anxiety. I thought they were nuts until I did it and you know my only thought was how cold that ice cube was suddenly what ever I was worried about at the moment settled down to a level from a 10 to a 8. I do many other tricks since and I even have my daughter using coping skills and tools. We have had to miss out on some theraphy sessions due to insurance issues. Bella has medicade back again and we are ready to start with the regular dr visis some more. Dealing with the school and Bella's visits caused some great aniexity 20 absences would put any parent into a panic. I looked up my rights and learned I could have her absences which all of them are excused to be waved as well as the letters the school sends to turancy. I also have to come up with a plan for a totur for Bella so she can get some help when she returns and catches up with out putting stress on the teachers to play catch up. In Micddle school Bella will have a lot more help and I'll have a lot less aniexty over these visits with the specialist. It was nice having a short break and Bella even only just sees one specialist now which is nice to be able to say she has come a long way. Bella used to have Ot Pt and speech on top of seeing a therapist to help her with the adhd and social issues at school. I am glad to say that things are getting better and there is a great plan put into place. Sometimes just knowing the options that are out there plays a big role. Knowing there is options sometimes helps easy aniety like I could continue to have frested about the 2-3 absences a month for Bella and get all worked up in a huff over my own ego or I just take a moment pause reflect on the legal issue at hand which in reality wasn't really an issue. Things are being taken care of and Bella now can be confident attending school with out fear or pressure being placed when she returns to catch up which causes her anxiety and her tummy to get feeling sick which in term causes more missed days of school after she get's sick to her stomach from the stress. now tihngs with her friends have seem to settled down she's moved on to the nicer cooler kinder kids she is doing a lot better being in girls on the run which helps boast her confidence level. I'm so proud of how far she has come. I cam imigine my aniexity as an adult with 22q but Bella being a teenager with 22q amplify that because she also has adhd so somthing on my anxiety level of a 5 could be her anxiety level of a 10 and vise versa. It' not safe to say all of us with 22q have aniexty or skitofrenia. There are just study's that are controled those studies were of people with skitofrenia who had been tested for 22q of course it dosen't take a reocket seicentist to figure out that a common genetic disorer will pop up. If you test people who wear hearing aids or have heart issues or have teeth issues they will also come up with test results in the same way. The Anxiety based awareness prevention based awareness is not key. Knowledge is hope awareness is key. It a lot to say you want to spread awareness but to apply it outside of the 22q community that is something that is hardly ever done unless you are a person who comes into contact with a lot of doctors and become a personal test subect for the medical community to watch and glawk at like Bella annd I have been with out very little credit given for our efforts. I was chatting with a few other adults and this is why we don't speak up often about 22q because the support and awareness isn't out there for digeorge and 22q. end the stigma choose kindness say hi to an adult with 22q we don't bite and you might actually learn something new or I might learn something new and we could help support one another Thanks so much for reading. #motherhood #mommyblogger #momsofinstagram #glassesfashion

#twinning #22q #22qtie #22q11 #22qawareness #22qtiesunite #22qmom #lifestyleblogger #authors #writingcommunity #writinginspiration

#blogger #advocate #motivationalspeakers #motherdaughterlove #motherdaughtergoals #motherdaughter #daughtergoals #motherhoodunplugged

Self care after caregiving.

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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.

Self care tips: using Lovebeautyandplanet product line

sponsored post: Lovebeautyandplanet self care products for personal care health and beauty. A Review by Amanda Ripsam

 

My hair after use of the shampoo and conditioner. I did not need to use the dry shampoo but I used it on Bella and she loved it. Bella did not want her photo taken for this blog post so I am sharing the dry shampoo that I got in with my goodies. I got body wash, dry shampoo, shampoo and conditioner. The scent is citrus and coconut. I love the smell of them all. I love that they can be found at Target or Wallgreens.   

My hair after use of the shampoo and conditioner. I did not need to use the dry shampoo but I used it on Bella and she loved it. Bella did not want her photo taken for this blog post so I am sharing the dry shampoo that I got in with my goodies. I got body wash, dry shampoo, shampoo and conditioner. The scent is citrus and coconut. I love the smell of them all. I love that they can be found at Target or Wallgreens.

 

sponsored post: Lovebeautyandplanet sent me these products from Crowdtap for free in exchange to test and review the products mention. All opinions are my own.

My goals for 2018 is to be more open and share even more with all of you. a lot of my readers are parents to children who have a genetic disorder called 22q1.2 deletion syndrome there for I wanted to take some time to share about some of the self care products I use and suggest for others to use. 

Most of the products I suggest I pick based on if I love them or already use them. This is a new to me product that I have fallen in great likeness over. I like them and Bella our 10 year old also loves them. Bella and I both tested out the shampoo, body wash, conditioner and the dry shampoo and we both love the citrus coconut scent.

It is imporant to take time to shower oh I can not tell you how many showers I skipped out on when Bella was born I would loved to have had some great dry shampoo back when she was younger. One or two sprays is all that I needed and my hair felt more bouncy and smelled so good. I take pride in the fact that 10 years later I take personal time for me to shower and take that extra step for personal care health and I even have a beauty routine.

As you can tell I was super excited that my first freebie find of the year arrived at my door today. I did not even have to walk in the snow to go to my mail box. I love when packages arrive at my door.

Since 2012 I have been a member of so many websites that offer products in exchange for a full size product or samples that I have been asked to make a video about how do I find all of these goodies I get in the mail my friends want to know how I too can do this. I use the power of the internet my laptop and my time. You do not just get things for free.

I had to write ton of surveys and answer questions before I scored this box filled with goodies. It is something I do while sitting on the couch watching tv or while Bella watches her tv shows on Netflix and I have seen them a billion times or if my hubby is watching one of his commic nerd movies oh Marvel why so many ? I admit I do love a good Marvel movie. oh yeah back to the freebie hunting and the cool package I got.. My hobby started years ago. Its not something new I am doing. I have tips and tricks I wanted to share and I thought I would write a mini post about the most recent example. I even shared about it on our Youtube channel.

https://www.youtube.com/watch?v=S_HuGa7mYOk


Lovebeautyandplanet is a new drugstore favorite body wash, shampoo, conditioner and dry shampoo that Bella just discovered for the first time. . Bella thinks dry shampoo is the coolest thing on the planet because it means she can wash her hair less. A moms struggle is real here. At least it is Bella approved and totally something I would let her use so win win for us.
There is a light citrus scent and it smells so great with the coconut. I am looking forward to testing all of these for the crowdtap mission.

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Suicide Prevention Awareness Month- My story

Suicide Prevention Awareness Month

 

Suicidal thoughts, much like mental health conditions, can affect anyone regardless of age, gender or background. In fact, suicide is often the result of an untreated mental health condition. Suicidal thoughts, although common, should not be considered normal and often indicate more serious issues.

Each year, more than 41,000 individuals die by suicide, leaving behind their friends and family members to navigate the tragedy of loss. In many cases, friends and families affected by a suicide loss (often called “suicide loss survivors”) are left in the dark. Too often the feelings of shame and stigma prevent them from talking openly.

September is National Suicide Prevention Awareness Month—a time to share resources and stories in an effort to shed light on this highly taboo and stigmatized topic. We use this month to reach out to those affected by suicide, raise awareness and connect individuals with suicidal ideation to treatment services. It is also important to ensure that individuals, friends and families have access to the resources they need to discuss suicide prevention. NAMI is here to help.

Informational Resources

Crisis Resources

  • If you or someone you know is in an emergency, call 911 immediately.

  • If you are in crisis or are experiencing difficult or suicidal thoughts, call the National Suicide Hotline at 1-800-273 TALK (8255)

  • If you’re uncomfortable talking on the phone, you can also text NAMI to 741-741 to be connected to a free, trained crisis counselor on the Crisis Text Line.

Awareness Resources

Help promote awareness by sharing images and graphics on your website and social media accounts. Use #SuicidePrevention or #StigmaFree.

While suicide prevention is important to address year-round, Suicide Prevention Awareness Month provides a dedicated time to come together with collective passion and strength around a difficult topic. The truth is, we can all benefit from honest conversations about mental health conditions and suicide, because just one conversation can change a life.

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Life is not always perfect and neither are any of us normies or not.

Peoples judgment used to be a trigger for me to lead me down the path of depressed self-defeating thoughts. I no longer care to be a concern for the judgments and what others think of me having a genetic disorder is challenging own its own without having the fear of what would others think if I said or did this or that.

I dealt with the guilt and grief I been there though I won't lie I did have a mental breakdown after I had given birth over 10 years ago I was in a very dark place between all of my multiple doctor's appointments and my daughters it was a never-ending struggle. I never saw the end of the tunnel or the light that things would improve.

These days are lighter and more fun and the struggles are not the same there are some days that are more of a challenge and some days there are fewer things to do but we made it past the 10 year age where the children with this disorder are most fragile. We can breathe a little bit more. We made it for now.

I mean I am 34 years old and still going strong. I am not offering a false hope there are others out there who have it way worse than we do and I am so thankful and blessed that yes I have hard days and my daughter does as well but I also count my blessings and remind myself that life is too short after my brother died I take each day and life to the fullest to the best of my ability.

My other brother, not the one who passed away but the one still living was the first of us to get diagnosed after he had his first seizure which happens after we ate turkey one Christmas Night. He was treated for hyoocalciuma and low iron levels. He is developmentally behind and had a learning delay as well as a speech delay. My sister is more developmentally behind then my brother and she also has a speech delay hypocalciuma seizures and low iron levels. She was also tested positive for 22q. They were given reccaltrio and calcitro for the calcium issues. Sadly I lost my 6-year-old brother to a seizure; he died in his sleep while having a seizure. He hemorrhaged in his brain and that caused him to die. His eyes belong to another boy now and his brain was kept for a study. His life reminds me why our life matters why I need to keep pushing forward.


 

Even though I didn't get to know him much I lived in Michigan and my father disowned me after I moved to the usa but that never truly affected me he was never around for me growing up neither was my mother. I grew up with my grandparents that's how I manage to not be a druggie or a drunk by the grace of God and their love I was raised by someone who cared if I had not been for them I don't think I would be as strong as I am today with the values the instilled in me.

I know that his short time here on earth was to remind us that the little things are really pretty and we need to work together and focus on the bigger picture and stop and smell the flowers.

I am 34 years old and my birthday is Feb. 10, 1983. I was born in Toronto, Ontario Canada. I moved to Grand Rapids, Michigan when I was 21 years old. I got diagnosed at 21 in Canada because the test at the time and the treatment and such would cost around $5,000, which I didn’t have so I went back to Canada to get tested and treated. Then came back here got married and then my brother died and my grandpa died all within two years of each other. My grandpa was the guy I called to for advice when things got hard.

I got pregnant when I was 24. I also got married and I’m a stepmom to three kids who all graduated high school and are all working. On the day it will be my time to leave the nest too and work I joke but today is not that day. Today I write and I do what I do for Bella until she too is on her own driving and working and out on her own one day like I made it.

If you don't think things were difficult and we always got along I can't say we can be friends because if you know me you knew the struggles were real from financial to the immigration all in between.

I did have a complicated high-risk pregnancy. I refused an amnio test as I knew I could have my kid and get a fish test. I wasn’t planning on aborting my child healthy or unhealthy. I always was sick during my pregnancy. I don’t think there was a day I didn’t throw up. I started to pass out and they put me on bed rest. This too shall pass was the words the pastor told me while I was going through this pregnancy with Bella. I knew she would be a fighter there was never a day her elbow was not up my ribcage.

The rough part about my pregnancy was I had developed the hypocalciuma as my daughter was pulling the calcium from me and no matter how much calcium supplements I was given to take or milk to drink it wasn’t enough. My levels stayed at three during my pregnancy; my iron levels were also around six. I couldn’t afford the medications to treat so bed rest it was. I had a lot of embryotic fluid I started out being 135 pounds and my last weigh-in for pregnancy was 198 pounds. I’m only 5’2.” You can imagine the leg pains and the back pains I had. I gave birth to a beautiful 7 pound, 5-ounce baby girl. She started to turn blue and had tremors in the hospital. I urged the doctors to do a fish test.

They doctors wanted to wait a week. I was against the waiting; I said it needs to be done now. They tested her and, sure enough, she has 22q deletion she had hypocalciuma feeding issues. We ended up having to thicken formula with rice to the consistency of honey. We did a swallow study and I couldn’t breastfeed her because she would puke it up through her nose. I did pump my milk into her formula to mix it with the formula and the rice to add more nutrients.

I cried screamed and yelled and pushed everyone away and shut down compeltely self absobred into learning all I could about this stupid 22q disorder. I stayed up reading all I could so much so that I struggled with sleep and after a few weeks of not sleeping I fallen to the grown in exhaustion and passed out and ended up in the hospital for an emotional timeout or as the professionals call it a 72 hour hold. I had a roommate in my room that had ocd and would walk up and down the room and open and close the dresser over and over. She turned the faucet on over and over and I was in this place with people who really had no impulse control I didn't feel like I belong in treatment the first time. It didn't smoke I didn't drink and I didn't do drugs I didn't see why I was there in this place with these people. I went home and still struggled to pretend the world was great and put this smile on my face that all was okay and guess what I couldn't do right I couldn't even choke down sleeping pills the second time. It didn't work for me ending my life could not work for me the second time either but the 3rd time that time I knew that if I couldn't choke down sleeping pills right God had a bigger plan

I went home and still struggled to pretend the world was fine. I pretned and put this smile on my face that all was okay and guess what I couldn't do right I couldn't even choke down sleeping pills the second time. It didn't work for me ending my life could not work for me the second time either but the 3rd time that time I knew that if I couldn't choke down sleeping pills right God had a bigger plan than my own plan for myself. I learned into my husband pleading and begging for life to be over with asking him to take him and the kids but the stigma of being that crazy lady plagued me and haunted me I just wanted to be out and done with. I finally got help and started seeing someone who tested me for ptsd the sleepless nights the nightmares of the abuse I had growing up and the neglect all popped up because that was what was haunting me not the no breastfeeding or feeling like I failed but that I was lost and overwhelmed. I am glad I went and the doctors got me on some meds now I no longer need those kinds of medications 10 years later

I take a few meds for my stomach issues and for depression but it all low does and I help others now and mentor other parents who had been where I was. I offer the guided tour sorta of what life was like for me how I manage to pull up my big girl panties and deal with life and get things done including the scary immigration stuff.

I had to get the help and accepted the help finally when I was a danger to myself because I didn't know how to care for myself I learn to lean on others and allow the help. I was spending all this time pretending it was all okay and that I had it covered my husband unknowingly not knowing what to do for me called for help. He was helpful with Bella but the mental traped I kept myself it was a way too much I was not a good mother in my mind because I couldn't do something women are born to do I could not breastfeed. No one told me it was because she had a soft palate.

I felt broken and I was so sure it was because of the stupid 22q I had.  I had my own emotional mental breakdown not do to voices in my head I do not have schizophrenia or paranoid thoughts or delusions. That doctors are now trying to push with their biases questioning I was tested and treated for post-traumatic stress disorder and adult adhd. That's why I would get overwhelmed that's why I could never keep up with the housework and to this day

I still can't keep up with all of the housework on my own but I know I am not a failure based on what I am able or not able to accomplish in my day. I did try to take my own life I did want to end it all and felt that Bella my husband and step kids would be better off without me.

It is all in the open no one can use that against me it out there I'm proud I had finally gotten the help and recovered I am proud of all I have accomplished. I don't care who is jealous or envious or hates me. I learned to stop caring what others thought and valued my own thoughts and started setting boundaries and letting go of toxic people, places, and choices.

Now I still have to deal with all of Bella's multiple doctor's appointments but I have coping skills and tools to use to help. Like when things become overwhelming and just too much for my brain to handle or process all that comes at us I put up sticking notes and I ask for help. I make routines and charts and we have a system that works for us. It's not perfect and we are still adjusting but without all of the help from all of these people doctors, therapist and yes even an immigration lawyer I'm Canadian and often get homesick during the immigration process I have not once said I give up because I already know what given up looks like and I refuse to go back to that way of thinking. It is all out in the open now and people have tried to use the immigration thing, the fact I knew I had 22q but you know what those people do not matter they are not paying my bills. So life and just be you and do you. That's the message for today from me and why I felt I needed to write this difficult vulnerable post.

As for my beautiful redheaded daugther She has had speech delays, hypernasle is 80 percent and she has low muscle tone in her palate in her upper mouth so we have to send to a palate specialist which we We also have her in speech therapy. her articulation has improved she also has had tubes in her ears. They just took them out with a paper patch and she’s doing great. she has had two cavities and gotten two fillings done. The doctor just put her on clairtion for her allergies and that’s helped with the runny noses and the dark circles under her eyes are starting to fade.

It has been several years of research and sharing the personal first-hand experience but we are starting to get answers and she’s just starting to get the help she needed since birth I been telling drs but they are reluctant to do anything with kids so young. So now at this point, she’s off her seizure medicine and were waiting for the first neuro physiologist appointment.

We have since had that neuro physiologist appointment and I am following up on how we managed treatment plan with not one but different neuro evaluations done. Bella had one done at 4 years old and then again at 10 years ago. I blog about our journey and how her treatment progress is going and all that we do to keep her looking and appearing as healthy as any other normie child. Bella is one of a kind unique and wonderfully made in the eyes of God and I would not be the person I am today if I didn't give birth to my wonderfully strong-willed redheaded child.

I know this post isn't going to stop anyone from self-harm people will do what they want to do anyhow but I hope these stories on Bellas page warms your heart and helps you keep an open mind on people who have genetic disorders as we are not all the same.

Every one of us is created different and unique like a snowflake.That my brave story and I hope you don't just stop and stare but comment even if you are left speechless just say hi or you get it. Thanks so much if you liked this post subscribed at the top

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