Imagine for a moment…it is the death of winter, and you are standing just on the outskirts of a grand forest. A team of networks surround you, cameras in hand, ready to film your every move. Because you…yes, you…have been challenged with a monumental task. On the path ahead before you is undergrowth…a random smattering of dry leaves and broken branches. The rules have been laid out clearly. It is simple, really. You are to be blindfolded, and must find your way to the nearest clearing, without making a sound. It’s true, the forest is teeming with wild animals who are ravenous (Would anyone tune in if there weren’t some form of danger?) And the temperatures, plummeting somewhere around frigid, will prove to put all of your senses on overdrive. But there is an enormous financial reward if you are able to complete the task. If you succeed, in fact, no member of your immediate family will ever have to work again.
Not wanting to appear a fool on national television, you have practiced and practiced and practiced. You look around at others in your family who are more capable, and wonder, “Why Me?” Pep talks from them have been a constant, and your shrink has even jumped in to offer advice on mental steps that can be taken to best prepare. You’ve tried it all….yoga, meditation, massage therapy. It’s important, after all.
The path is forever etched in your memory, because you’ve walked it multiple times a day for weeks. Only five hundred yards or so, at most, is the clearing. There is no time limit. Your family looks on with such hope in their eyes….”I can do this,” you say silently to yourself as one foot steps out in front of the other.
Each and every footfall looks the same. With painstaking control, you balance on one leg while reaching out with the other, to check the path at your feet. Allowing your toe to gently rub the ground before you, you give a soft swish of the foot to carefully remove any debris that might be in the way. The only way to be completely silent, you know, is to walk on an unobstructed path. Once your foot is secure, you then reach out all around you, carefully, with both arms, feeling for anything that you might need to duck beneath or slide around. The blindfold is tight. Everything is dark…you have been forced to rely on all of your other senses. The stress level? Well that is beyond nuts, and you feel so vulnerable that you might as well be a purple headed, eight armed monster. You are certain ALL eyes are on you. Some pull for you, some pity you, but others judge you.
Only steps before you reach the clearing, you lose your balance and set your foot down upon an old fallen tree branch. CRACK! And just that fast, the opportunity is lost. You’ve surely disappointed your family, but you’ve also let yourself down. Cruel defeat. So you sit. It’s done now, right? Why get up? Why move forward? Then you lay down on your stomach, cover your eyes with your hands, and cry.
But most of all, you wish the rules of the stupid game had been different!
What I have described for you, in an over-dramatized way (since I love me some drama), is my visit to Target with Hope today. Hmmmm. Wait a minute. I say I have “over-dramatized” it, but since Hope is non-verbal, I am only guessing what the experience may have been like for her based on my own observations. I could be under-dramatizing the whole thing, which brings us smack dab (yes, I just typed the phrase ‘smack dab’) to the most difficult part of parenting non-verbal kiddos who have extreme sensory issues. Most of the time we don’t know what the heck we are doing. The whole process for us as parents is like….is like….well….it’s like being charged with finding a clearing in a grand forest while being blindfolded. The truth is, the scenario I created above could describe my visit to Target today too. I mean, I was as nervous as my kitty cat on vet check day when we walked into the store, ready to claw the eyes out of the first person who dared to roll their eyes or look down their noses at my baby girl. This road is not for the faint of heart, is it?
Our child is challenged = WE are challenged.
So much work and preparation goes into getting Hope ready to walk into any public place. Push her in her wheelchair, which is her “safe space”, and the girl can conquer nearly anything. So it’s tempting, sometimes, to just offer her the rolling chair and make life easy breezy. But taking her by the hand and asking her to walk is a gigantic leap requiring loads of faith. On both of our parts. We talk about it. We practice it. She is offered incentives….humongous incentives… that truly entice her (cookies)… and we employ countless therapeutic techniques to get us through. Each of her steps are meticulously placed with care, and when overwhelmed, she closes her eyes and clings to me, trusting me to be her guide. I’m sure she believes all eyes are on her, and many are, because people do stare…. so I stand by her side as she puts forth her best efforts.
While Hope has yet to make it out of Target without falling apart in some way, today, she nearly prevailed…yes, we dipped our toes into the warm pools of victory….making it it all the way to the check out line with no incidences. Well, almost no incidences. She did randomly slap a lady on the butt as we pushed our cart by the toy section….and then there was that pair of men’s sized Superman feety pajamas she pulled off the hanger and dragged clear to the women’s accessory department before I noticed, but who can be perfect? (And why are men buying Superman feety jams? Any one know?) It was when we came to the check out line….the finish line….that things took a turn. The line was very long, and since Hope thinks all the candy and goodies at the check out line are for sampling while you wait, “the experience” went downhill fast, leaving her in a big heap on the floor. Eyes covered, tears falling.
After picking her up and placing her back onto her feet, I knelt on my knees so that we were face to face. Wiping away all the tears with the sleeve of my sweater, I whispered to her how proud I was….told her we’d get it next time….and then we hugged it out. Oh, how I wished I could have exclaimed to all those in line how far she had come….how she had nearly succeeded…how she had made it around the entire route through Target without faltering (until we got to that long line and the candy—ooooh, that darned candy!)….how hard she had been working…how much we had practiced….but I knew no one else would understand. Only those who walk in similar shoes can relate to the journey. And so I share Hope’s “defeat” with you! I share it because I know tomorrow is a brand new day….I share it because we nearly succeeded today….I share it because we will not give up…we will work together until she conquers Target and a host of other obstacles. As Maya Angelou so aptly stated: “… it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, and how you can still come out of it.”
My tip for the day is…you may encounter defeat, but don’t ever accept defeat.