Posted by: Leigh Reynolds | July 22, 2014

I am, He is

People often ask how I am doing, and I usually answer “fine” or “pretty good”, occasionally “blessed!” Friends who know about Wil and his autism often ask how Wil is doing, and I typically say, “He is awesome. Amazing. So great.”  I answer this way because, for the most part, I am and he is.

But the real answer is never truly that simple. There is this life with autism that lies underneath. The worry. The reality.

When Wil was diagnosed, life moved into a new place. A place of delicate balance. Life became therapy and therapy became a central part of life. It’s not just breakfast, it is time to work on life-skills, practice communication, use his desire to be fed as a motivator for language. That is how each day begins and how we go through each day. Each moment a chance for therapy, an opportunity to either gain some ground or – if we don’t take full advantage – possibly lose it.

Every day I try and focus in the moment. When I ask him what he wants for breakfast, he doesn’t answer, he leads my hand to the box of Nutrigrain bars, but tomorrow he might. When I ask him if he wants to play outside, he doesn’t answer, instead he takes my hand and leads me to the door, but tomorrow he might. When I pick him up after school, I smile and ask how his day was. He doesn’t answer, but tomorrow he might.

I soak up his smile. I feel the warmth of his hand in mine. I enjoy the walk to the car and I know he is happy to see me. I am pretty sure he had a good day.

I keep the worry at bay. I hold off the fears. I push it all aside and focus on this moment. With a lot of faith, prayer, focus on how amazingly blessed we are, I get through one day at a time and I am just fine. I have a joy that comes from knowing my life is in God’s hands and so is Wil’s.

But it is all still there. Underneath. Am I doing enough? Will my son ever have expressive language? When and how will we tackle potty training? What about church? Will we be able to work with Wil and the nursery volunteers enough that Wil can go to Mission Friends in a year? What about school? Will we be able to afford the private school we want him to attend? Even if we can afford it, will he be ready? Will other kids accept him and his uniqueness or will he be bullied in a way that dims the light that shines from within? What about later? Will he drive a car? Will he be able to have a job? Will he have friends? Will he be able to take care of himself? Live a full, rich life independently? Will he be OK when his father and I are gone?

I keep these thoughts at bay. I hold them in. I lock it up tight so I can live,  so we can live and love and laugh and enjoy today. So that Wil will know he is surrounded by love and joy and peace. So my other two children will know the same.

Every once in a while, something happens. BoomCrash!AirBag

Like in an unexpected car accident, there is a hard impact you didn’t see coming and the airbag burst open. All of these fears burst forth in a rush and I can’t hold them in. The pressure of them pushes against me. I feel the burn of it against my skin. I try and catch my breathe, but I am suffocating under it. I hit at it and try to hold it back, but there’s no stopping it.

This past weekend it was watching “Sounding the Alarm” put out by Autism Speaks. It is pretty well done. I’d love all of my family, friends, neighbors, teachers and congressmen/women to watch it. It tells a tale that more need to understand, about the rising tide of autism, the lack of services, the confusing journey for families, and the parent’s struggles with feelings of failing.  But for me, it was the impact that made all my fears rush forth. I spent the next two days in tears, off balance, struggling to get back to center.

And I got there – or at least I am getting there. I’ve spent a little more time in  prayer. I spent a little more time walking, breathing, singing praise music. And this week, when someone asked how I was, I was a little more honest. I shared the struggle a bit, because in the sharing, the load is lightened and it helps me breathe again. Like deflating a raft with one of those air-flow stoppers, it is a slow process and you just have to take the time it takes.

A friend of mine has some pretty good advice on the subject as well. “Therefore I tell you, do not worry about your life… Look at the birds of the air… your heavenly Father feeds them. Are you not much more valuable that they? … Do not worry, saying ‘what shall we eat? or drink? or wear?… your Heavenly Father knows what you need… Seek first His kingdom and His righteousness, and all these things will be given to you… do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” You can read more about what He had to say in Matthew, chapter 6, beginning at verse 25.

So, because of God’s great grace and love, through faith and focus, when you ask me tomorrow how I’m doing, I’ll likely say great.

I am, because He is.

 

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Responses

  1. I love your blog posts Leigh. Your future fears reminded me of a story I just saw about a man in Florida. He runs a car wash that employs almost entirely people on the autism spectrum. Going through the car wash one day, observing the rhythm, the attention to detail, the repetitive nature, he was inspired that it was something his autistic son could do and enjoy. It sounded like it is working out fabulously. I think it is called Rising Tide Car Wash. It is inspirational to see and hear from people, like yourself, who embrace the beauty and appreciate the uniqueness in their children. I have no doubt that however Wil’s development progresses, you are a parent who will be able to find a way for him to reach his potential and have fulfillment in his life.

    • Thank you! I saw that story too and thought it was great. Thanks for reading the blog and offering words of encouragement. 🙂


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