Back at Thanksgiving we went with all my in-town family to see the movie “Wonder.”
After the music swelled and the credits came up Dave and I sat in that dark movie theater until we were the only ones left…me with tears streaming down my face, almost to the point of the “ugly cry,” Dave tense and mellow at the same time, overwhelmed.
Because that movie was too close to home in so many ways, good and bad.
I loved that movie, it exuded goodness and love and acceptance and it made me feel. Dave didn’t love that movie. I think it made him feel too much.
The thing that hit me so hard was that the kid in the movie (Augie) had great friends. They were the best kind of friends…loyal and good, able to see the beauty and goodness that radiated from the inside.
And I loved that it reminded me of Lucy’s own circle of goodness…the girls (and boys) who surround her and love her despite her chewing with her mouth open sometimes and falling apart into a puddle of emotion other times. They are golden.
As the music crescendoed and the crowd stood and clapped at the end when Augie got his award in seemingly glowing slow motion…even the “bad guys” seeing the goodness and light, my heart wanted to burst that kids can be that kind. That that Augie had an army of love surrounding him. And that Lucy has that same support in so many ways.
But I couldn’t help wonder what was next for Lucy. And for Augie too. What happens when all those good friends grow up and feather out in different directions? What happens in the real world? Teenagers have so many concerns of their own as they grow and develop and learn…it’s so difficult to try to navigate those tricky years. Their friend circles change. Their interests change. They’ll all be busy in their own ways, (including Lucy hopefully with things we can help her keep interest in).
All the emotions of raising a daughter with special needs crashed in on me in the darkness of that movie theater that night. I didn’t know if I could ever be as strong as Julia Robert’s character, always saying the right thing, and knowing how to help. I worried about my older kids and Dave too. I don’t want them to feel neglected as the older sister in the movie did. Sometimes I feel like I’m on an island, trying to keep Dave and all the kids safe from the darkness that comes along with this road we’re on, yet sometimes falling into it myself, and trying to keep Lucy away from the darkness that many kids with BBS have.
Depression is inevitable when you have something going on with your body you can’t understand let alone explain to others as you try to find your spot in life. And it’s pretty common for BBS kids (my biggest heavy take-away from the last BBS conference). I couldn’t help but think of the loneliness and sorrow Lucy will face as she grows and matures…in a slower way than those piers, eyesight dwindling, not being able to articulate why it’s so difficult which leads to outbursts and darkness.
Sitting there in that theater I was filled with gratitude for what we have going here, but so much darkness for the future.
Not long after we watched that movie I got an email from Lucy’s teacher letting me know her class had nominated her for an award at the assembly coming up, and invited me to be there.
It wasn’t a big deal thing, but when they announced her name and had her come up to receive that little green piece of paper Lucy just beamed. 
And there was something about that army of kids cheering and hollering for her that reminded me of the audience Augie had in the movie. It was beautiful and just buoyed me up.
I got the distinct impression that IT IS OK. I need to fully enjoy what’s happening now. Enjoy those golden friends and soak in all the beauty.
Sure it will change as they all grow. All of life changes. There will absolutely be twists and turns in the road but the steepness of the road and those sharp turns here and there are what will make the easy-gliding parts glow.
I was reminded that day that what really matters is what’s on the inside. The things happening in her life right now, the goodness of the people surrounding her, the table of good women I work with during her IEP meetings, her teachers at church who strengthen her connection to God, her teacher at school who is full of light and encourages class service projects every month…all these things are building what’s inside Lucy’s heart and soul.
She is being fortified in ways we can’t even comprehend, and that: what is on the inside, is what is going to get her through. No amount of carrying her and friends can do it for her. Eventually it comes down to her.
Oh how lucky we are for the army of goodness building up the inside.
And how it motivates me to help join that army for others around me who are struggling in all kinds of myriads of ways. Oh the needs are there in all kinds of shapes and sizes. And we are here to strengthen the feeble knees and mourn with those that mourn, just as Lucy’s friends and their parents do for us.
We can BE that goodness. And that is a powerful thing.
I love this quote I stole from Kara’s blog:
May we all feel with our hearts all the beauty around us, and listen to the whisperings to guide us to those we can strengthen and build just as Lucy’s army has done for her (and Augie’s too :).
Come what may in the future, that army has created goodness and light she will carry in her heart forever.
It was a good movie, although I thought it might have better if his friend Jack won the award at the end, not Augie. It would have made it a bit less predictable. Sometimes I worry so much about thing with my kids that I think I see their "weaknesses" or "struggles" is a heightened way if that makes sense –like I am hyperaware of them. It is hard to balance it all I know. I know Lucy faces a lot with BBS but she really seems very remarkable and unique (I hope you know that lots of 11 year olds chew with their mouth open!).
Thanks Shawni for your honesty and optimism blended with reality. Our son with special needs is 6 and many days are sooooo dark and discouraging. I appreciate knowing there are other parents and families in the same boat and thriving.
I especially enjoy seeing how generally sweet and good your other children are with Lucy. It is a good reminder to me to encourage best friends among siblings.
Lucy will always be bouyed by all of your love and support…even when life gets hard. keep up the amazing work!
I have a friend who is one of eight children and two of them have cerebral palsy. She said her parents always taught them "We are all different and everyone has some sort of a disability. The people with no kindness in their heart have the greatest disability of all". I've always remembered that.
BTW love your blog.
Loved this post with it’s realness and light! I have yet to see the movie, Wonder (it’s on my list), but have you read the book??? It’s quite good! And don’t they always say the book is better than the movie?! Thanks for sharing and letting us follow along your crazy journey called life! Life is Good 🙂
I have been a follower of your blog since Max was 9ish…my son was just a baby and now he's 11! I have admired you for SO long (and still do!). As I read your post today, I couldn't help but think of a video I watched just today…I'm going to share it here in case you'd care to take a peek. But the description of God's upside down kingdom and how disability can actually lead to freedom….made this mama's/special ed teacher's heart SWELL. I hope it's encouraging to you as well!! Thank you for continuing to write…your voice is a light in my life. http://rebekahlyons.com/freedom-d2kw
The worst thing is the not knowing. But if we knew all that was ahead of us, we would shrivel up and die in terror.
I was depressed quite a bit during my teens and twenties, not understanding or remembering being sexually assaulted.
When I finally started to remember, well into my 30’s, it was such a relief to understand why I have been so disabled by emotional illness.
And in the knowing we can find healing.
You already know that a decline is likely with Lucy, but at least you can anticipate the likely symptoms and have some preparation in place in terms of what her long term needs will be. I only hope that psychiatry and the drugs they peddle like candy will be a last resort.
The side effects from anti depressants are not worth the “cure”.
So many of our wonderful special needs children are doped with toxic poisons that ravage their bodies and minds.
I pray that you will read Peter Breggin before resorting to it Shawnee.
God Bless you.
Friends may come and go for Lucy (as they sometimes do for all of us) but as long as she has her loving, supportive family as a "soft place to land" she'll always feel loved and safe. And she is lucky enough to have a huge family of supportive aunts, uncles, and cousins to cheer her on while being friends and role models. She has what she needs with her family even if the outside world sometimes lets her down.
I have a son with epilepsy that has been changing, and those changes in his brain can scare me right out of my pants if I let them. So I have been reminding myself to stay in "right now!" because I can almost always handle what is happening "right now". It's when I jump into the unknown future that I can really freak myself out.
Good job staying in "right now". If you can do that, you'll make the entire journey. I promise!
My girls don't have any disabilities. But, I have the exact same worries and joys as you. Exact ones. My older girls are eccentric and I feel so grateful for the group of excellent kids they have as friends. They are patient and loving and I am thankful for that.
I have a nephew who has some conditions that make life extra difficult for him. He doesn’t have the support group at school and in the community that Lucy has. We as his family love him, pray for him, and cheer him on, but he doesn’t get any of that from peers, school, neighbors, community, etc. You should count your blessings that Lucy has not only great family support but also a great support group when she’s away from you. Not everyone gets that.
I have a daughter with special needs. She is 21 and we saw "Wonder" together with all our family. It hit really close to home for us too. Although it was a fantastic movie with a fantastic message, I don't think we will buy it to watch at home since it was so hard for us to watch, there are a LOT of feelings that came up. I get your thoughts about Dave not liking it, feeling too much. It was similar for some of us. God bless you for all the good you do. Thanks for shining your light!