It’s been some time since I came here in my own voice to share my thoughts and fears, hopes and experiences with anyone who might gain anything of value from them. For some time, I have to admit, I wasn’t sure I had anything to pass along. What could I possibly say or do to help me and help you, and keep us all going?
I found myself (of recent) drawn back here, back to the emotions I love to weave into black and white, emotions that are indescribable to most. I want to reconnect with you. To still remind you that you’re not alone, to remind myself. Yet for so long, I felt like I couldn’t figure out what exactly I wanted to say to you. Then it hit me. The thing that many of us need, rely on, lose, reclaim, and that which spirits us forward in our journeys.
I wrote this for you, a few short months ago…
High school starts for our oldest in just a few days. High. School. He’s a 9th grader. With significant needs… but…
I can’t help but look at his coming days and worry about his transition to his high school years. What does his day look like? Will his teachers, his paras, his typical peers… will they be as good as the ones we’ve been blessed with for the last years? How scared will he be? Though he seems excited… maybe I’m just the one who’s scared… scared of bullies. Of people laughing at him. That someone won’t remind him to wipe his mouth when he’s eating. That they’ll let his clothes be twisted after a visit to the restroom. That they’ll forget his visual deficits and he’ll run into a pole. Or a person. Or down the stairs. I worry for his safety and his feelings. It surprises me that I am not finding worry for his education.
Looking back, I recall the year, the day even that we returned from an appointment with J to pick up our other kids from elementary school. I found myself falling into a friend’s arms and sobbing uncontrollably for the knowledge we just learned that I knew would shape my son’s future. The report of so many tests showing his IQ so low that there was no hope of ‘catching up’. I was lost. Hope, for much more than a fleeting moment, was lost. Losing hope is not an adventure that special needs parents should experience. Hope is all we have to get us through so many days. Having lost hope… I was devastated.
As we do, we kept moving forward. There was no way to know that the twists and turns, the therapies, the appointments, the surgeries, the years of it all… that all of it would lead to this week of him starting high school without me worried about what he’ll “learn”!
Now, I know he’ll learn what he needs to – in time. It’s all relative. We know he needs to learn the basics of navigating the world of buying groceries, not what a right angel is. I know that years ago he didn’t understand why something would need to be washed, much less how to – and today he asks if he can help with he laundry. I know that two years ago he couldn’t read, and now he surprises us at every turn when he reads the simpler words in his world. No… I’m not wholly worried about his learning. I’ll watch, I’m an active member of his IEP meetings and will always advocate with a watchful eye… but I’m not “worried”.
It dawns on me this week, that I was wrong all those years ago. It would seem his IQ wasn’t the destitute fate I foresaw.
And it would seem with that simple sentence, with this simple realization that I’m able to find a set of worries so very different than I started out with, that I can pass along these words to you….
Hope. Hang on to hope. Don’t let it disappear, forever losing its fire of light. If it fades, and it
will may, let it only fade – allowed to return; for it will in time. Never let it extinguish. You might not see it, might not recognize it, but it will be there waiting for you to see it… to claim it… to grab on and hold onto it the way it’s holding on to you. In a seemingly insignificant moment, in the stream of the survival of life that seems less shaded than the rest, it will be there. A little beacon, beckoning you to recognize it and cling to it. That is your hope. It’s there; not leaving your side. It will spring you forward, hold you up, wipe your tears, give you peace, give you itself. It’s your hope.
The hope that one day, your worst fears get pushed to the back, becoming the lower of your fears and different, less ‘important’ fears creep in. Something less dreary and dooming. Something sprinkled with light.
Life isn’t perfect. Our family’s needs are still great. We’ve learned to navigate them with a finesse that makes them appear normal… until we’re around ‘normal’ and are reminded of what challenges we actually have. But we’re managing, and merging our ideas with the future that reappears, ever changing. Where the flow will take us, we can’t predict. But for now, we claim our hope as our strength to keep us moving in an upward direction. And that’s what I want for you too.
That’s what I want to say to you. Hold on to your hope.