It’s a ‘Wonder’ Full Life

I’ll go ahead and give fair warning…if you don’t care for “raw” and “real,” you may want to stop reading now! ūüėČWhen I decided a few years ago to share some of our journey, I realized that transparent is the only way I know how to be.¬† Somehow it’s just easier to be painfully honest in writing¬†since it doesn’t¬†require¬†us¬†to see each other’s “ugly cries,” if we don’t want to. ūüėä I’ve had some things on my mind lately and thought I might actually blog about them at some point, but something kept telling me I might want to see the movie, “Wonder,” first.¬† Boy, am I glad I did!¬† It addressed so many of the things I’ve been thinking on and possibly worrying about a little too much.

Pitt Hopkins Awareness Day

I’ll admit, I broke my rule with the boys about having to finish reading a book first, before seeing the movie.¬† I had also promised them we would see¬†“Wonder” over Thanksgiving break, and we didn’t get as far into the book as we had planned before¬†the break¬†was almost over.¬† For those who haven’t seen it yet, I promise I won’t give too much away!¬† If you’ve seen the previews, though, you probably have a pretty good idea of the story.

Before we get to the movie, I should explain what has been on my mind so much lately.¬†¬†The¬†reality is hitting me that Lindsay will start kindergarten next year.¬†¬†She’s been in preschool for almost three years¬†now, but we are about to enter a whole new world.¬† Since she is in a county that believes in¬†complete “inclusion”¬†in the classroom, that means she will be¬†in a typical kindergarten class.¬† Back in my teaching¬†days, I¬†would have thought this was ideal.¬† Now that we are talking about my child, it’s a new ballgame.¬† Of course, I want her to be included, and I think having “typically developing” peers is essential.¬† What I worry about,¬†though,¬†is Lindsay being the child that everyone whispers about and no one wants to get to know. I can’t even type that without the tears¬†beginning.¬† I wonder things like, what will she be doing when everyone else is learning to read and write? How¬†distracting will it be to her classmates when she starts “singing” in her sweet little voice, at the¬†top of her lungs? What will she do when all of the other kids are running and playing games at P.E.? Will everyone stare at her in the cafeteria, when she has to have help feeding herself? The list goes on and on. I’ve had many parents tell me that all of the kids will love her, and they will just get “used” to having a child with¬†disabilities in their classroom.¬† That sounds wonderful and all, but when your child is the one everyone must get “used” to, ¬†it’s¬†beyond painful.

Watching her favorite shows!

I’ve never been a crier in movies, but that changed about a few minutes into watching “Wonder.”¬† Of course, I felt for the little boy, “Auggie,” when he realized¬†that because of his severe facial deformities, people¬†often wouldn’t look at him, or would do the oh-so-familiar, look quickly and then look away. Even worse, people would¬†just come right out and ask him what happened to his face. ¬†(Sort of like¬†the lady yesterday, who looked at Lindsay and asked, “What’s wrong with her?” ¬†Once I’d had a few minutes to digest what she said, I really wish I had answered, “What do you mean?” It’s hard enough when children ask these questions, but can we please agree that as adults, that is never an okay question to ask?) I hurt¬†for the boy in the movie, that he was fully aware and had to endure the¬†stares and comments.¬† Then, I¬†became overwhelmed¬†with thoughts of gratitude, first, that Lindsay most likely won’t know if others are talking about her.¬† A few seconds later that gratitude turned into heartbreak, that she most likely won’t realize others are staring and/or talking about her.

Teaching Lindsay to arm wrestle!
I thinks she likes herself!
Sweet little “Poppy” at therapy.

I am not the first parent to have a child with disabilities, nor am I the first parent to worry every day over all of the unknowns.¬† All I can do, though, is speak from my experiences.¬† When¬†I watched this movie with my boys, I thought it certainly should be required viewing for every school-aged child and¬†his or her¬†parents.¬† I honestly think that for the most part, we tend to maybe avoid eye contact with those who may be seen as different because we don’t know what to do.¬† The na√Įve part of me wants to believe that, because I simply cannot justify that anyone would purposely choose to either avoid or make fun of someone because of something that makes them unique.¬† I think so many things in the movie were huge eye openers, not only for me, but¬†also for my boys, as¬†they realized more than ever how important it is to choose to be kind.

I met my lifelong friend for lunch the other day, and she said something¬†I hadn’t ever¬†really considered before¬†that might have caused a few tears for both of us.¬† I’m sure I mentioned something about¬†wishing Lindsay could talk, etc., and she said, “I really¬†think you are¬†her voice.”¬† I think she might be right.¬† Until she is able to effectively communicate one day, (and I believe that she will) I am her voice.¬† So as hard as it is to watch her slowly achieve “inchstones,” (I know most people have milestones, but we have “inchstones,‚ÄĚ over hereūüėČ) that’s exactly what I will be.¬† As much as I wish weeks weren’t filled with therapies to learn to be able to use one finger to push a button, learn to put one foot in front of the other to take a single step, communication devices to tell us what she wants, and school assessments that are too painful to look at, I will keep doing it.¬†¬†As long as she needs me to explain to others why she’s riding in a “princess carriage” to get from place to place, I will keep explaining.¬† If she needs me to continue to¬†ask people to move out of the way so we can get somewhere in her carriage, I will gladly do that, too!ūüė¨

“Boys…You probably shouldn’t leave your math lying around if you don’t want me to eat it!”

I asked both Carter and Cason what the most important thing was that they¬†learned from “Wonder.”¬† Cason immediately said he liked the quote, “When given the choice between being right or being kind, choose kind.”¬† Yes, please.¬† Always.¬† Carter said he learned to not be afraid to be yourself.¬† I couldn’t agree more. I learned so many things, but it stuck with me how much the issues with Auggie affected his sister.¬† Since he had been born with so many problems, she sort of learned to suppress her feelings and to just keep things to herself.¬† Of course, as I watched, I thought of the boys and how our day-to-day must¬†affect them.¬† Almost immediately, though, I realized just how proud of them I am, too. ¬†I learn so much about how I want to be by watching how they treat their sister, when they don’t even know I’m looking. ¬†They just “get” it.¬† When Carter felt so bad because Lindsay hadn’t ever been¬†trick-or-treating and created that experience for her, it blew me away.¬† He set up houses for her to visit, carried her to each house, and gave her his best candy.¬† When Cason tells her how cute she is, wants to know¬†exactly what she worked on in therapy or what she did at school that day, I cannot help but be grateful. ¬†When Carter could choose to write a poem about anyone for school and he chose his sister, he demonstrated the fact that he is not afraid to express how he feels about her¬†in front of his friends.¬† Just recently, the sweet lady who sits behind us at church told me, “Every Sunday I watch each of them take care of her and her little needs.¬† They do things they wouldn’t necessarily have to do, but it’s things that make her moment better.¬† The boys don’t do it to be seen, just comes naturally.¬† They have no idea they are being observed.”¬†Thank you, God, for making their ten year old hearts so tender. And thank you, Lindsay, for being¬†the¬†exact teacher they need.‚ėļÔłŹ

“Trick-or-Treating!”
Carter’s poem he wrote for school.ūüė≠
Who needs to walk, when you can be carried?‚ėļÔłŹ

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In my perfect world, we would all do things not to be seen, but because it is the right thing to do.¬† We would be so used to “choosing kind,” that it would be second nature to us. We would be like the Publix I was in the other day¬†that had two employees with Down Syndrome, feeling acknowledged and valued, as they happily bagged groceries and carried on conversations with each person who came through their lines. Disabilities would be invisible.

Dress up days for school might be my favorite!

If there‚Äôs one thing that gives me comfort in this life we’re living, it‚Äôs that as unfair, exhausting, and frustrating¬†as it may feel sometimes, there is One who knows just how I feel. He watched as his Son was ridiculed, spat on, denied, belittled, and ultimately sacrificed, for me. For you.¬† I can’t begin to fathom that.

(Isaiah 53:3-5) We despised him and rejected him; he endured suffering and pain.¬† No one would even look at him-we ignored him as if he were nothing.¬† “But he endured the suffering that should have been ours, the pain that we should have borne.¬† All the while we thought this suffering was sent by God.¬† But because of our sins he was wounded, beaten because of the evil we did.¬† We are healed by the punishment he suffered, made whole by the blows he received.”

What a ‚ÄúWonder‚ÄĚ full¬†life we are living, as our pain pales in comparison to the pain our Heavenly Father chose to endure. ¬†Our trials don‚Äôt even begin to compare to what He suffered for us, simply because of His Amazing love. ¬†And so as Lindsay continues to teach us, we are hopefully able to help others in some¬†small way¬†through¬†what we‚Äôre learning.

Until next time…

Laura