“A happy life consists not in the absence, but in the mastery of hardships”. I came across this quote that I shared on social media in early 2011 (Pre-Tiva) and it got me thinking... what kind of hardships was I going through back then? Maybe financial problems or a marital disagreement? I really couldn’t think of anything that compares to some of the hardships and struggles we have faced with raising Tiva. After a bit of thought, I came to a realization - those hardships, though big in my mind at the time, are insignificant now. Everything works out. We all go through different seasons of hardship, heartbreak, depression, etc, and in conquering those, we gain wisdom, survival skills and ultimately it makes us better people - stronger people. I’ve been blessed by my hardships. I don’t know that I am a “hardship master”, but I’ve learned that trials do pass and and we do survive and we are better because of them. I’ve also learned this...Tiva faces hardship every single day, she never holds it against me when I fail her and almost always has a smile on her face. Tiva HAS mastered hardships. She has taught me more in her mere 6 years of life than I ever could’ve imagined. In the six years of being her mama, I feel like I can completely relate to the opening paragraph in the Charles Dickens novel, A Tale of Two Cities - “It was the best of times, it was the worst of times.” (And on many days, that was before breakfast). Shortly after we adopted Tiva, we started to notice she was different. She had behaviors we didn’t understand and our tried and true parenting techniques that worked on all three of our adult kids failed to work for her. There were a lot of struggles in the first few years and until we started parenting in a way that supported the different way her brain functions, we all were frustrated. I even thought that perhaps this was God punishing me for bad things I had done in the past. That, maybe because I was blessed with 3 wonderful children who (looking back) rarely gave me much trouble, that this was my pay back. I thought this was my penance. I know now, I was foolish to think that, because I’m pretty sure God doesn’t work that way and as it turns out, she has been one of our biggest blessings. Buuut, she IS only 6, so maybe the penance part is still forthcoming...though I do feel better prepared because of our neurobehavioral training. Raising a child with an “invisible disability” is hard. When you can’t see the disability, sometimes on the good days, people forget it exists. Heck, even I have changed expectations after experiencing a string of really good days (and I have professional training in this stuff - which is why I always say I’m the slow learner). This is why I like to educate people as much as I can. I love to educate by telling stories. I am also brutally honest and open about pretty much anything and everything. This, I consider a character flaw because I even call myself out when I make a mistake that has gone unnoticed. I wasn’t always this way. I remember one time in my early teen years when my parents had caught me in a lie and told me every lie I told, I would be grounded for 1 week. Little did I know, they knew exactly what I had done. When I had told so many lies, that I was grounded for two months, they discovered that they were punishing themselves too by having me stuck in the house that long and they stopped asking me questions. Perhaps that is when I learned to be so open and honest. Anyway, back to my story... I have realized that there is a lot of stigma attached to talking about Fetal Alcohol Spectrum Disorder. People like to play the blame game instead of setting aside judgements and helping those who are struggling. As a society, we need to band together, be kind to everyone, especially “that weird kid”, stop judging and start asking how we can help. Educate yourself. Let go of the stigma, let go of the fear and start having those hard conversations about invisible disabilities, brain based disorders and mental health issues. After all, they affect everyone (whether you actually have one or not). I love telling stories about Tiva... not just her disabilities related to FASD, but her abilities. She is fun and funny and quirky and brilliant in many ways. She can teach us a lot about life and living! We have our share of bad days and there are a lot of worries that continue to keep me awake at night, but we do our best to educate those in her life on ways to support and accommodate her. Sometimes those conversations are scary and hard, but when knowledge turns to understanding and frustrations dissipate, it’s worth it. Let’s start talking about it.
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