I happen to be a married Christian woman who is the mama to four children. Not much sounds too unique, yet, right? Well, our two and a half year old has a serious genetic mutation (mecp2), lacks necessary coating on her DNA, and has Rett Syndrome (which is said to be like Parkinson's, Cerebral Palsy, Epilepsy and Autism in one diagnosis). And our eldest, almost eight years young, has Intractable Epilepsy and juvenile mental illness likened to Schizo-Affective Disorder. Okay, I realize this all sounds a bit boring - but I'm getting somewhere, trust me.
Before we were thrust, quite unexpectedly, into the world of mental illness I was undoubtedly naive and ignorant to this unique, complex, and chaotic world [of rare illnesses and mental illnesses]. I realize, though, that it's difficult for anyone to truly understand unless you're IN IT. It's easy, however, to have an opinion on what the problems are, especially when it comes to the mental health community; parenting, discipline, religion, medications/no meds/treatment in general, schooling, etc...
Before we were thrust, quite unexpectedly, into the world of mental illness I was undoubtedly naive and ignorant to this unique, complex, and chaotic world [of rare illnesses and mental illnesses]. I realize, though, that it's difficult for anyone to truly understand unless you're IN IT. It's easy, however, to have an opinion on what the problems are, especially when it comes to the mental health community; parenting, discipline, religion, medications/no meds/treatment in general, schooling, etc...
I purposefully, and prayerfully, share "a lot" about our journey. Comparatively speaking, though, I only share a speck into what our world is really like. And honestly, through that, we have been blessed with support, prayer and people who lovingly try to understand. Still, I want to clarify some things.
When my mom had a massive heart attack, did anyone say, "All she needs is God and prayer; stop all meds, turn off the machines, discharge her from the hospital." No. No one said that. And, no one [usually] does in those cases. Why? Because there isn't such a massive stigma wrapped around heart disease. With mental illness, though, there is. Does our son need God and prayer? Absolutely! But, please don't over simplify this more than difficult and complex situation that we are living through. Furthermore, please don't insinuate such things like --- if Eric and I had anointed our children with oil (which we have and will continue to), like you did, our children would be fine [like yours]. Yeah, in my book - that's just wrong (i.e. you're wrong). Please, don't insinuate that, to anyone, regardless of their illness. People have been healed through prayer and anointing, but you cannot assume that our children would be fine if we basically followed your footsteps. Grace, compassion and... silence go a long way.
I'm sorry, but why do some people act like every person in the Bible was healed and walked in fields of poppies with blue skies free of trials and suffering. Quite the contrary, actually. Even those with great faith suffered greatly. Oh, but didn't they just anoint each other with oil and tap into their faith so their suffering would end, free them from prison, prevent them from being beheaded or stoned? It doesn't work that way. Not then, not now. God is able but we can't dictate how our cries are heard and prayers are answered. It's called sovereignty. And, I'd rather not minimize prayer by equating it to my personal genie in a bottle in my time of need or want.
Now, if someone you care for was diagnosed with Alzheimer's, Dementia, Diabetes, Parkinson's, Cancer etc... would you minimize their illness and treatment to "it's all in their head", "they're demon possessed", "if they would just pray more", "they should stop all their medications and just have more faith"? I know some, unfortunately, do respond that way (I've experienced it personally and with my children), but I sure hope you wouldn't. Sure, spiritual oppression is legit and should be prayed about. But, that's not what I'm talking about here. I'm talking about the above quotes - those ways of thinking are hurtful and could be deadly for relatives and friends who are ill. And, believe it or not, this is very often true for mental illness, as well.
Here's a quick Q&A to clarify a few more things: Do I believe that we have to be diligent, do research and pray about treatment plans; homeopathic and/or "western"? Yes. Are some medications dangerous and should be limited/ avoided? Of course. Are meds over prescribed? I tend to think so. Do I prefer less man made chemicals (or none) in our bodies? For sure. But have some been used to save lives and improve quality of life? Undoubtedly.
Does God still answer prayer and heal today? Yes! Does He always choose to heal? No, and it is ridiculous to blame that on lack of faith on the part of an ill person. Someday you and I will die and it WILL be because a part of our body is sick, not functioning properly, got too old, or was badly hurt (organically, accidentally, in a criminal way). This is inevitable... and it WON'T be because of lack of faith but because this is a broken world and it isn't our Home. So, it bothers me when people speak proudly, blindly, and hypocritically when it comes to illnesses - specifically mental illness. Sure, I realize that people have good intentions (most of the time) but, it still stings and I find it my duty to protect and prepare my kids for such comments (and to share to help advocate and shed light on this touchy matter).
Like most people, I see a lot of posts slamming this, that, and the other - usually things that the people who are posting don't really understand (honestly, I can't say that I'm not guilty of that either- we're all curious people with an opinion). As of late, because of the horrific shooting in Charleston, those posts and comments have been about medications and mentally ill people. Actually, I agree with a lot that has been said - but not all of it. Our mental health system [and community] needs a lot of help; it's broken. And, no, I don't think more medications are the answer, and sadly, some add to the problem(s). However, we also can't solely blame the medications ignoring their importance (in a lot of cases).
You see, our son was VERY ill prior to meds (there are no words to describe it, really). And, sadly, he still is but his medications (though truly considered a double edged sword to us) are helping. At the same time, we have done our best to minimize the amount of meds he is on (we refuse to over medicate him causing him to be a robotic-sedated little boy deprived of his own personality), we involve various forms of therapies in his treatment plan as well as in our home, we pray with and for him every single day, we try to eat well and are aware of all the buzz in terms of our guts (we were even totally gluten free for over a year), we are trying essential oils and other homeopathic remedies, we have read and watched a TON on raw cannabis/ medical marijuana in regards to seizures, I nearly stalk his doctors via email (not literally, don't worry), we have lived separately for safety precautions and so our son could get treated at a residential hospital, he's required numerous hospitalizations at psych units as well as neurology units, we support him and do our best to research his illnesses to educate ourselves, we research meds and homeopathic treatment options, and researched where to uproot our family of six to live for the best care, we... the list goes on. I share all that because it's easy to point the finger at doctors/ meds/ parents/ "psycho" kids - when, really, we never really see all that is going on behind the scenes... behind closed doors where things that I wish no one had to endure, were happening - even with great doctors, supportive parents, support groups, NAMI meetings, prayer after prayer, healthy eats, and limited medications.
You see, our son was VERY ill prior to meds (there are no words to describe it, really). And, sadly, he still is but his medications (though truly considered a double edged sword to us) are helping. At the same time, we have done our best to minimize the amount of meds he is on (we refuse to over medicate him causing him to be a robotic-sedated little boy deprived of his own personality), we involve various forms of therapies in his treatment plan as well as in our home, we pray with and for him every single day, we try to eat well and are aware of all the buzz in terms of our guts (we were even totally gluten free for over a year), we are trying essential oils and other homeopathic remedies, we have read and watched a TON on raw cannabis/ medical marijuana in regards to seizures, I nearly stalk his doctors via email (not literally, don't worry), we have lived separately for safety precautions and so our son could get treated at a residential hospital, he's required numerous hospitalizations at psych units as well as neurology units, we support him and do our best to research his illnesses to educate ourselves, we research meds and homeopathic treatment options, and researched where to uproot our family of six to live for the best care, we... the list goes on. I share all that because it's easy to point the finger at doctors/ meds/ parents/ "psycho" kids - when, really, we never really see all that is going on behind the scenes... behind closed doors where things that I wish no one had to endure, were happening - even with great doctors, supportive parents, support groups, NAMI meetings, prayer after prayer, healthy eats, and limited medications.
The bottom line is we have (and love with all our hearts) a little boy who lives with auditory and visual psychosis, paranoid delusions, extreme anxiety, severe aggression, depression, insomnia, significant cognitive decline, daily seizures, being on the spectrum and more. Sadly, there isn't a clear cut, easy, cookie cutter treatment or prayer that is guaranteed to make our sweet boy free of those symptoms and the dangers that come with them. And to treat families, like ours, like there is a "clear cut, easy, cookie cutter treatment and prayer" as a guarantee "fix" for our illnesses and woes is so very blind... and hurtful. But, regardless of the mounting negative opinions and WITH the support of many who truly care, we are doing our best. And, we aren't the only family who is trying, with everything in us, in every hour of our day, with every speck of insight/wisdom/knowledge thrown our way, to do what's best by our ill child[ren] and family.
With our broken, sometimes offended, uniquely blessed, beyond tired hearts our prayer is the same as if our children had more well known, less stigmatized, less abtract illnesses... may Jesus be seen as our strength, Anchor, and hope in our brokenness. Our gratitude still wells in us because His grace really does change everything. There is much uncertainty, blind judgement, hypocrisy, suffering (mentally and physically) but... such things won't last forever. As we endure, what many don't understand, I pray that more than even the world of mental illness many would come to understand, and know, the source and Giver of our living hope... such things truly endure.
Side Note: I was so passionate about writing this I couldn't wait to get onto a computer so I pecked it letter by letter on my phone, off and on, surrounded by my four children (lots of laughing, crying, diaper changes and other needs) - please pardon the abundance of typos and errors! I will try to get to editing them... in time. :)
#mentalillness #juvenilementalillness #rettsyndrome
#hope #loveoutloud #christianslistenup #brokensystem
May we choose to love out loud, walk in compassion, and share grace beyond the stigmas of mental illness, any illness for that matter.
Otherwise, may we learn the power of silence.
Side Note: I was so passionate about writing this I couldn't wait to get onto a computer so I pecked it letter by letter on my phone, off and on, surrounded by my four children (lots of laughing, crying, diaper changes and other needs) - please pardon the abundance of typos and errors! I will try to get to editing them... in time. :)
#mentalillness #juvenilementalillness #rettsyndrome
#hope #loveoutloud #christianslistenup #brokensystem
