I don’t know about you, but sometimes I get so focused on dealing with all the current crises in our family life that I don’t spend enough time reflecting on our blessings. Most notably, in our fight for progress with our children’s care now, we forget how fortunate we are to live at such a time as this. Not only are treatment breakthroughs of every kind occurring more rapidly, but the flow of information happens at the speed of light. When I see what parents can now access versus even a decade ago, it blows my mind.
Mulling this over inspires me to continue a long look backward, applauding the parents and children who have gone before us on this journey. I am not just talking about the mothers and fathers who merely lived prior to the wonders of Google and Facebook. As I read on the history of our own hemophilia community, I learn that as recently as the 1950’s a child like our son would only have a life expectancy of 27 years. It hurts my heart to think of burying any of my children before me. With a lack of treatment options, our lifestyle would have been much more limited and our outlook grave. Yet, this was the outcome for those born in that era.
Of course, this isn’t the only disorder to have improved prospects in our lifetime. As recently as the 1980’s a parent with a child on the autism spectrum could expect to see their child institutionalized. Now look at how the doors of opportunity are busting down! Temple Grandin has surely been an encouragement to the community, and we even learn that people like Bill Gates and Daryl Hannah have Asperger’s.
The same is true of those with Down Syndrome, who only had a life-expectancy of 25 years in the ‘80’s. Look at all of the actors who have built acceptance and brought this diagnosis out of the shadows! Even if it does not happen with the speed that we would like to see, work opportunities and inclusion continue to increase. Dynamic events like the Special Olympics are also on an upward trajectory.
Life for those who have gone before us was definitely no picnic. Significant special education law was only passed in 1975. If we think we fight hard for our children’s education now, imagine the battle prior to that time! We have also become accustomed to most places now being fully accessible to individuals of all physical abilities. Yet, this year marks only the 25th anniversary of the Americans with Disabilities Act (ADA).
Prior to these days, parents like us watched their children shut out in virtually every way. If we are isolated now, how much more were those who couldn’t at least read a daily blog or build friendships on the internet. Children like ours were more marginalized than included with other children. The “R” word was acceptable speech for peers and adults alike.
Thank God that so many of these grim, painful inevitabilities are part of the past! We owe a debt of gratitude to those who have gone before us, not only because of what they have endured, but because they have paved the way for the rest of us. In generations where the doctor’s word reigned supreme, in eras where their children were made to believe they were less-than, these parents didn’t just shut up, sit down, and take it. They persevered through public scorn, sharing their stories, building awareness, attempting to make the future brighter for OUR children.
“As to you, Titus: talk to them; give them a good, healthy diet of solid teaching so they will know the right way to live.
Here’s what I want you to teach the older men: enjoy everything in moderation, respect yourselves and others, be sensible, and dedicate yourselves to living an unbroken faith demonstrated by your love and perseverance.
And here’s what I want you to teach the older women: Be respectful. Steer clear of gossip or drinking too much so that you can teach what is good to young women. Be a positive example, showing them what it is to love their husbands and children, and teaching them to control themselves in every way and to be pure. Train them to manage the household, to be kind, and to be submissive to their husbands, all of which honor the word of God.” (Titus 2:1-5, VOICE)
In addition to all this fighting of personal battles, these parents have been faithful leaders and examples to those of us who have walked the path behind them. They have taught us how to advocate, where the boundaries lay with school and medical staff, how to persevere in our marriages, how to find the blessings in the midst of sorrow. This continual pouring out of themselves have made them our heroes, though we seldom notice or give them credit.
I, for one, would be totally lost on this journey if it weren’t for my persistent predecessors. These mothers and fathers have affected my personal decisions and shaped who I am as a parent. They have consulted, mentored, encouraged, and just shared a good laugh, normalizing our life with challenged children.