Recently at one of Henry’s Soccer practices, I watched on feeling defeated and frustrated. The sun was setting, it was gorgeous and the little 8yo boys were working their hearts out, all but one, that is. My Boy wasn’t with the group and had no desire to be. I felt bad for him for a while and even cried a bit thinking he must feel left out and abandoned,(even though the team was doing the right thing) but God quickly reminded me of several things about Henry’s disorders and I finally saw Henry for who he was and is. I’m still seeing it in a fresh and NEW way even now, and I am so grateful for this. It all really got me thinking deeply about things from Henry’s perspective and I truly believe God wants me to see things more from that view. I think it’s important for you to see things from where Henry is and where our family is too – maybe why we do the things we do in a way, when it comes to these particular struggles. As the Holy Spirit impresses upon me to share, I trust that there is someone out there who can somehow be encouraged by this part of our story tonight . . .
“I Wonder What It’s Like . . . “
By Ryan McLaughlin, Dedicated to My Son, Henry
I wonder what it’s like to be a boy in a world which doesn’t understand you. What’s it like for those around you, having certain natural expectations for your behavior and yet, you truly cannot comply, cannot even force yourself to conform to what is the societal “norm”. It is simply mentally and physically impossible for you to do so because your brain works differently, it’s wired differently, and that is the true and only reason. Dear Boy, what is it like, having the world around you, your community, teachers, coaches; your neighbor and friends (and parents of friends) misunderstand your every word, your every move? Truly, your language is not ours and yet you are no less of a person than me, or anyone else on this planet! You have just as much right to be heard as anyone else, no matter what your language, so keep communicating, Dear Boy.
I wonder what it’s like to think differently, to process everything differently than the rest of the world. No checks and balances, no groundings or time-outs or any other mixture of discipline; not even rewards for good deeds because those things don’t register in your brilliant mind. How do you NOT understand true right from true wrong? It’s possible. Consequences are hard to wrap your mind around if you don’t feel the danger or warning most of us do. What goes through your mind as you run across a busy street without a flinch, just to gather your ball which ended up on the other side of the road? What you are you thinking when you decide to climb to the very tip top of a tree and attempt to jump all the way down? Nothing phases you, nothing that should concern you concerns you, ever (like your own safety or ideas about ‘what would happen if I . . . ?).
I wonder what it’s like to physically touch, feel and sense things so differently than everyone around you. Your senses are like mine yet multiplied by 10,000. A tiny pinch or minor fall is a major ordeal to you, full of pain, causing sobs, feelings of agony and even fearing the pain of death! How do you go about the day feeling that intense pain over and over again? Your overwhelming feelings in the environment cause you to run and hide, finding the tightest of places – shelves in the grocery store, the bath tub, storage bins, even the clothes dryer brings comfort your senses. You want to feel safe. It’s your “fight or flight response”; you want to feel secure – something every human longs for. You feel every movement, hear every sound and the sensitivity to it all must be maddening even in everyday life – the school bell, the TV, sisters crying, big brother’s friends loudly playing; the lawn mower buzzing and even church music meant for praise . . . the sounds of the world can be torture to you. I’m now sensitive to that.
I wonder what it’s like to have the same thoughts run through your mind continuously, endlessly, seemingly without end. Your focus right now is on dogs and you’ve started looking for the next dog you want in life, even though we have two healthy ones at home. You learn about breeds and memorize the details; you make lists of what to name your “one-day pet” and dream of where they will live, how they will act, and more. You talk about dogs to everyone who will listen and you draw pictures of them with your family, then show us internet picture upon picture of a certain breed you decided upon that particular day and you start trying to convince mom and dad your new dog would fit right in. Do the constant thoughts make you tired? Do they stop when you close your eyes at night, Dear Boy? Do you notice when the obsession comes in and takes over or is it a silent dictator, seemingly ravaging your entire being?
I wonder what it’s like to be homebound, unable to be in class because of the sheer fear and severe separation anxiety you experience on a daily basis. I wish you could explain how you don’t miss school or your friends. Do you wonder if you will ever go to school again, like your friends in the neighborhood? Do you grow frustrated that this is the third year of struggling socially and, although you test above and beyond, you are unable to sit at a desk in a classroom where everything naturally changes from day to day, in a school where things naturally change from day to day? Change is too hard – harder for you than for most. I see it now: change is hard because it doesn’t make sense to you even when it’s explained. My Dear Boy, does the sheer thought of being unable to see me or hear my voice always make you crumble and come undone or does it pop up now and then? I wonder what is it like to be crippled with fear, needing your “person” or object while you do everything from going to the bathroom, to fixing a snack; from playing in the backyard to taking the dogs on a walk; from brushing your teeth and getting dressed. Do you wonder if the fear will always be there?
I wonder what it will be like when PANDAS dissipates and starts leaving your body (I hope it leaves in droves). I wonder what it will be like to see if you without PANDAS as it’s been with you for so long. I wonder what it will be like to see you FREE – FREE to love in word and deed. FREE to give of yourself willingly and devotedly. FREE to share appropriate emotion with your “tribe”. FREE to care for your beloved animals without the worry of thoughts creeping in, wondering where the next one will come from. Free to understand what others are saying to you – for things to make sense and finally fall into place and in order; for the world of communication to open up before you! I wonder if you will be able to see God’s goodness through it all and how he used it ALL for His glory and for YOUR good.
I wonder too, what it will be like when the PANDAS storm is over for you. Will you remember the bad and the good? Selfishly, I wonder if you’ll remember how much we’ve fought for you, Dear Boy. We’ve fought for you spiritually, emotionally, physically, and mentally – every which way possible. There is no doctor I won’t pester, no agency I won’t call; there’s no company Daddy won’t track down nor pharmacy he won’t trek to in any type of weather. We will continue to protect you, stand up for you and stand beside you always, forever. I have no doubt whatsoever God will bring beauty from the ashes that are PANDAS.
“I Wonder What It’s Like . . . (continued) . . . “
Dearest Boy, May you never wonder how your mother feels about you or how she sees you the way you truly are . . .
· You are so intelligent - you get bored with school and homework, making it hard to focus during school time. You like your brother’s books and his games as they spark your imagination instead.
· You are so giving – You give away even your BEST toys, even your favorite toys or new toys are freely given by you to your friends and family. You get so much joy in giving and it comes naturally to you. It most definitely is a spiritual gift!
· You are so tender and sensitive – you cover your ears as the world gets too loud and yet you step out bravely and love on your sisters, gently talking to them and singing to them. The way you still talk about Ellie Kate melts my heart and I hope those memories stay with you always. You were the first to hold baby Bowen and you did great!
· I love how creative you are, always thinking outside the box (Mommy usually gets stuck in a box of some kind) and you are always there, helping see things from a different point of view. You are so creative, you make your own designs and styles, including with your clothes, shoes and accessories as well as toys and science experiments. I’m so happy I don’t have to pick out your clothes each day but that you have an imagination which allows you to pick and choose what “feels” best and looks best to you that day, in that moment.
· I love how STRONG you are! You are so physically strong – strong like an ox, and I love it when you use your physical strength for good, such as helping others or bettering yourself by working out or practicing for your soccer team. You are a great help to Momma, esp when we are out and I need you to push LB so I can carry Baby B. Such a strong man!
· I love that you are passionate and while I hope you will one day break free of focusing on one object or subject alone, I DO so enjoy how you plan out every intricate detail for all involved. Nothing goes past you, Dear Boy!
· I love that you communicate differently. This one is the most difficult, I know, Bud and sometimes this love is a choice, an action for me, without a doubt. It’s hard for you. It’s hard for me. It’s hard for all of us to understand each other. It’s like speaking two different languages or being from separate planets where what I say doesn’t have the same meaning to you as it does for me and thus, things get confusing, misinterpreted and become beyond frustrating. Let’s promise to always communicate, Dear Boy and I will stand as your mouthpiece, your interpreter or as your liason for as long as you need me to.