Friday, September 12, 2014

My life as a special needs mom and reflections on those who do not Act



“Silence in the face of evil is itself evil: God will not hold us guiltless. Not to speak is to speak. Not to act is to act.” Dietrich Bonhoeffer

This quote is really resonating with me today on a variety of levels. I haven't blogged in quite a while and wish I made an effort to do it more often. But here goes, blogging about what's on my heart and in my head... Maybe some of it will resonate to you and maybe not. But nonetheless thanks for reading and listening...

People are fed up with the way things are going yet not willing to act is often the common trend among many in today's society. Everyone wants something for nothing... Sometimes willing to act means making sacrifices, sharing the load so one person isn't stuck fighting against the establishment alone. In a perfect world that is ideal, but the reality is a lot of people are in the trenches and sometimes standing alone. 

Complacency is a choice, and we reap exactly what we sew. There are days I have chronic fatigue, brain fog and literally have handfuls of hair falling out because my health conditions are flaring up due to my thyroid, PCOS or whatever is the culprit at the time. There are days it's a complete joy and things all come into full circle reminding me of why I made the choice to educate my children at home (these are the days I live for).  Other days I speak up for my convictions and injustice in order to protect the liberty of myself and others, sometimes igniting a fire in others to speak up as well and other times to be called radical and divisive, wishing I could say "Don't attack the messenger". Many days however can be a challenge, none of us are with out our challenges, some of us however have more than others.

I have learned over the years to not expect society and even those close to me to comprehend a day in my family's life, I watch so many take for granted the independence their children have, realizing that for many children including my own that independence is not automatic to their development. For my daughter fractions of that independence can be learned, but we have to resigned ourselves with being placed with that challenge we face as special needs parents. Some of our children may not ever learn all the skills of independence but we learn to be at peace with it. While others contemplate the jobs, marriages and futures of their children, I have to contemplate what do I prepare for my child in case something should ever happen to me, how do we navigate adolescence and adulthood with so many developmental unknowns? Ever see the puzzle in a lot of Autism Awareness symbols? There's a good reason for that, it literally is like a puzzle, you never know what each new day will bring including the future. Sometimes that brings great joy when your child defeats the odds of their diagnosis and other time pain when reality sets in they are completely depending on you for guidance in this crazy world and may always need someone by their side to do that. Some have jobs, get married and go on to live their own lives but the reality is many do not, that is not often comprehended by some, until you live it though you can't. Sometimes it brings sadness and I don't blame people for not comprehending at the same time, some days it hurts. My husband and I would do it all again, but we often take turns taking breaks, letting one have some down time, and it's not as easy to just go places as a couple, we often have to turn down invites to go places because we can't just leave our daughter with anyone. It sets up the potential of a bad situation for a babysitter as well as our daughter, in case a meltdown should occur. Thankfully we have a few people in our lives that we can trust if we need to call on them. That is something for many years we didn't always have. More of our years as parents than not we had to go through the road alone (God by our sides) and make it work. I share this not to ask for your pity, but to be grateful for the blessings you have. Every single one of us have our struggles, some are fighting to live and battling more life threatening challenges and that is what helps keep my grounded and remember to thank God even in the midst of my struggles. I am still human though, as we all are. Don't take for granted the moments with your child and spouses, because some families don't have as many of those moments and opportunities as others.

We learn to savor each and every milestone and have a deeper appreciation because it was a milestone that took climbing a mountain to reach and wasn't automatic. I to have an appreciation for the beauty in a child naturally develops also; I remember watching in amazement our youngest put words together and learns social emotional interaction simply by being in the environment around her. Potty train almost effortlessly, when it took my oldest years and years. The fact she did potty train was miraculous because some will need diapers for life, full time and part time. So I have an equal appreciation for both. And again I thank God for the victories we have won.

  My youngest is a toddler transitioning into a preschool that keeps me on my toes, and our special needs daughter with Autism will be turning 10. Developmentally she is not her age level, while we have seen some great strides and she making progress at her own pace in her academic studies, it's a unique slow process. We don't desire to push but help her flourish. She is not a one size fits all and her challenges with Autism are unique, but none of our children are a one size fits all at the same time either.

Yet despite how crazy my life may be some days, I try hard to not ignore the calling God places on my heart, sometimes I question why me? Why when my life seems upside down already, why do I have to act at times? I would much rather hide away searching for curriculum for my girls and on facebook land. Then reality comes to the forefront and I realize if I don't act who will? Sometimes many of us step up to the plate and other times, only a few of us do. Those times where it's only a few, the burden is a heavy load to carry.

Today my prayer is whether I am standing up with a crowd or if I am standing up alone, please Lord help me remember to ultimately ask for your hand and help in carrying that load. All of us sin and fall short and faith in man alone will leave us feeling empty. When I forget that God is by my side, my load seems overwhelming, lonely and heavy. Today I was reminded why I must remember that.

Help us all remember our treasures are not stored in this world, they are stored in Heaven, helps us not ignore that still small quiet voice that tugs on our heart to Speak up!!! to Help others!! who are struggling, and Fight for Liberty!! As this world gets more and more crazy we know ultimately man alone cannot save it and that is why we need Christ and the salvation he brings. But in the mean time keep fighting the good fight and being involved big or small it all matters. You never know when you might touch the life of a struggling family or even make a mark against helping slow the out of control freight train our government has become; not only in our nation, but in our state, our communities and even our school districts.

May God's face shine upon you and may he bless you and keep you Numbers 6:25 Thanks for reading :) 



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