Child abuse survivor, chronic illness warrior 𝐛𝐢𝐫𝐭𝐡s 𝘤𝘩𝘪𝘭𝘥 with down syndrome, ‘I WILL be the mother my kids deserve’

“Growing up, I did pageants and country clogging.

I quit around age 7 and ended up breaking my first bone. I broke over 20 bones by the time I was 18. I spent most of my school years on crutches, in wheelchairs, and on and off in the hospital. At around 13, I was diagnosed with type 1 Osteogenesis Imperfecta, which is a connective tissue disorder featuring bone fragility and blue whites of the eyes. I had very severe mental health issues from being 𝓈ℯ𝓍ually assaulted by a family friend as a 𝘤𝘩𝘪𝘭𝘥 and from being bullied due to my medical issues. Once I reached my 20’s, I was already an alcoholic and using hard drugs.

My relationship with my mother was always up and down. She had serious health issues herself, both physically and mentally. She refused to take care of herself and do what she needed to do to get better. I moved out for the second time around 24. I turned to heroin and drinking. Thankfully, I chose to get clean after about a year and I finished outpatient treatment right before I met my husband. I think we were so blinded by partying, we didn’t realize we actually didn’t get along. I ended up getting pregnant 3 months after getting together. We were living with my parents and everyone pressured us into getting married before our son was 𝐛𝐨𝐫𝐧. I became completely sober for the first time in at least 10 years. My relationship with my husband was just not what I ever pictured marriage to be. We decided to move out shortly after our son was 𝐛𝐨𝐫𝐧. We thought maybe the stress of living with my parents, particularly my mother, was driving us apart.

Less than 2 months after my son was 𝐛𝐨𝐫𝐧, my mother fell ill. They said it was the flu and 3 days later, she died from pneumonia. I honestly have always had a hard time dealing with her death. I have wondered why I wasn’t enough for her to take care of herself. Why did she not love me enough? I swore I would make sure my 𝘤𝘩𝘪𝘭𝘥ren never had to feel the same way.

Courtesy of Tiffany Russotto-Grzankowski

We decided to move to North Carolina and try to work on our marriage shortly after my mom died. Over the years, my health drastically got worse, I was finally diagnosed with fibromyalgia and found out I had herniated disks in my back. My marriage failed after only 5 years. I thought it was finally time to find my happiness. I was working at Walmart and in a new relationship when I was in a horrible accident at work. A metal stocking cart fell on my head. I had seizures, a sprained neck, post-concussion syndrome, and lost my job over it all. I was bedridden for a while and ended up having to sign the primary custody of my son to his father. Not only could I no longer work, but I could also no longer take care of myself most days. I ended up engaged and again, I didn’t know much about the person I was with. I found his body one morning after he overdosed. I ended up homeless in south Florida after going to try to get help. I honestly lost everything, including myself.

I turned back to drugs, tried to commit suicide, and ended up in four mental hospitals over the course of about 14 months. I truly thought my life was over and that I deserved to die. I was at rock bottom. I really didn’t think I was going to make it, nor did I really want to.

I went from Delray Beach to Panama City, fresh out of a mental hospital. I had just been arrested for the third time in about a year. I was hanging out with the wrong people and could not get help. I tried to find rehab and mental health help but everywhere I turned, I was denied. I had gone to Panama City to be with a friend and was basically dropped off at the worst motel in the city and left. I ended up meeting a man who was staying in the hotel and genuinely wanted to help me. After about a week, he offered to let me stay with him and help me get clean, find mental health help, and get out of the mess I was in. I could not get a job. When I was working, I would end up in the hospital at least once a week and would be let go. Most places said, ‘You are a liability, due to your health issues.’ He ended up taking care of me while I fought for my disability. My legs were swelling all the time and I was going to the hospital at least once a week for something.

Courtesy of Tiffany Russotto-Grzankowski

I ended up pregnant about 6 months after getting completely sober. I was excited and scared, of course, but I felt like this was supposed to happen. All I wanted was to go back to North Carolina and be with my son again. We were told, ‘Your daughter has Down syndrome and will need heart surgery after she is 𝐛𝐨𝐫𝐧.’ I honestly never thought twice about having her. I was being urged to have an abortion, due to my own personal health issues. Everyone doubted my ability to be a mother to a special needs, medically complex 𝘤𝘩𝘪𝘭𝘥. I was determined to prove everyone wrong and let this give me a second chance at a good life.

The pregnancy was awful. I was always sick and having to see specialists. Upon 𝐛𝐢𝐫𝐭𝐡, we found out her heart was much worse and after 4 weeks in NICU, she was flown to Gainesville. At 6 weeks old, she had open-heart surgery to close two holes in her little heart. I stayed with her as much as I possibly could. There were many moments I thought, ‘Am I going to have to go home without my 𝘤𝘩𝘪𝘭𝘥?’ Finally, at 12 weeks, we were able to go home. Over the course of the next few months, my disability was approved. We could not get proper medical care and were both in the hospital multiple times. After one medication mix-up that caused a major hospitalization for my daughter, we packed up and moved into a hotel in North Carolina.

Courtesy of Tiffany Russotto-Grzankowski

I was set on having my 𝘤𝘩𝘪𝘭𝘥ren together and having the right medical care. I started seeing my old doctors right away. We found out I had lymphedema in my abdomen and in both legs. We ended up finding a modular home to finance and I was getting my son every other weekend. Life was finally falling into place. The man who had saved my life and gave me purpose again helped me get exactly where I needed to be.

I found out I needed half of my thyroid removed, shortly after getting into our new home. I had a hard time finding mental health help for about the first year I was here. I started really struggling again. I felt like I had lost my purpose in life, and maybe I was only meant to be a mother. I was lost, but in a different way. Other than my long list of health issues, I really had no reason to be so depressed. I was approved to get my Hep C treatment done, which I had transmitted during my time I was homeless. I successfully completed treatment and finally found a place to do groups and ended up getting a counselor, which changed everything.

Shortly after I started group therapy, I broke my collarbone, my 37th broken bone. It honestly was the beginning of a drastic decline in my health. About 6 weeks after, I developed a major cellulitis infection in my chest and right side that hospitalized me. I was on antibiotics about 2 weeks when lymph nodes in my groin started swelling and I fell very ill. I had some strange viral infection that attacked my liver and left me very sick. We never figured out what caused it. I was getting all sorts of infections and viral issues, having low-grade fevers all the time and was severely fatigued. All this while trying to care for a special needs 𝘤𝘩𝘪𝘭𝘥 and rebuild a relationship with my son.

In October of 2019, we found out during a routine heart check that my daughter would need a pacemaker as soon as possible. Being on disability, I was unsure how we would afford the trips to Charlotte so I decided to start making elderberry syrup and bath products. Even with my own insurance, I was getting crazy medical bills and I really didn’t want to keep asking for help. Phoenix had her pacemaker on November 15th, 2019. I was just in the hospital a few days prior and had to recover in her hospital room. Shortly after getting home, I was in the hospital again from some sort of allergic reaction. We finally decided it was time to see immunologists, rheumatologists and maybe even go to UNC or DUKE for further investigations.

Courtesy of Tiffany Russotto-Grzankowski

I really felt like I needed an outlet and my little side hustle was giving me a way to keep my mind off all the things going on in my life. My son’s stepmom gave me the idea of Down with the Struggle, a Facebook page I created to not only show all the things I was making but to also blog about my struggles. Over the last few months, we found out I have a severely retroverted uterus that is also tilted to the side, uterine fibroids, and a cyst on my ovary. Every month for about 2 weeks, I am absolutely miserable. I swell and bloat very badly, to the point I feel like my insides may explode. We are very limited on options and looks like I will need a partial or full hysterectomy, which I am completely fine with. My fear is not having someone to help with my 𝘤𝘩𝘪𝘭𝘥. Having a nonverbal toddler who is also not walking while preparing for surgery is hard. Knowing I will have to go weeks without picking her up is devastating honestly but the thought of going on like this is worse.

My life was falling apart. I felt completely broken down by the health issues I have been faced with. I have survived addiction and 𝓈ℯ𝓍ual assault as both a 𝘤𝘩𝘪𝘭𝘥 and an adult. I have survived more in my lifetime than most people experience in theirs. I have lost my mother, all my grandparents, and a man I was going to marry. I have never let any health issue I have faced break me down like I have this.

Courtesy of Tiffany Russotto-Grzankowski

The last 8 months have been extremely hard, but I keep fighting! I still have specialists to see to try to figure out why all these things are happening to me. It’s very possible these issues are flaring others. In a matter of 6 months, I went from tolerating it each month to it becoming completely debilitating. I end up on the floor in my bathroom crying and puking in pain each month. I have to force myself just to shower and eat. It is hard to explain to people how I am feeling or what is going on with my body. I physically and mentally feel exhausted.  My mental health is just as important as my physical health and I have learned it is okay to not be okay, as long as I refuse to let it keep me that way. I WILL be the mother my kids deserve. I WILL have the quality of life I deserve.

By the end of 2020, I plan to look back and say, ‘Wow, that was a wild ride.’ Most of my health issues will never go away. Some might get worse, some will get better. I don’t have much control over most of my issues because they have no cure but the issues I do have control over, I am going to deal with. Truth is, my 𝘤𝘩𝘪𝘭𝘥ren will always need me. I plan to be here for them because they should never have to wonder why they weren’t enough for me to fight.”

Courtesy of Tiffany Russotto-Grzankowski Courtesy of Tiffany Russotto-Grzankowski

This story was submitted to Love What Matters by Tiffany Russotto-Grzankowski of Asheville, North Carolina. You can follow her journey on Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful stories here:

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‘I remember feeling venom shoot through me. I fell into a deep, incoherent state as my veins pulsated into my head.’: Woman celebrates 6 years of sobriety after heroin addiction

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Share Tweet Email Brittle Bone Disease, Compassion, daughter, Depression, Down syndrome, emotional, family, grief, healing, health conditions, hope, husband, inspiring, kids, Kindness, loss, loss of mother, Love What Matters, marriage, parenting, recovery, self love, 𝓈ℯ𝓍ual assault, strength, wife ‘Go home and rest. It appears there is nothing we can do to prevent this.’ I look over at my husband and his face breaks me.’: Mom adopts after infertility battle, ‘He chose us, he set us aside to be parents’‘He hugged me tightly. ‘Mommy, I’m so happy. I hope school never opens. I don’t want to see my bully ever again.’: Mom says ‘let us return to school changed and kinder’


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