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