One (in 150) is the Loneliest Number

Can I be real with you?

It’s been about seven months from the time that we were first alerted to the fact that something might be wrong with our little Josiah. I’ve been kind overcome lately about how lonely and painfully long this journey of autism can be. At first, you work so hard to get all of the wheels set into motion so you can help your son, and you’ve got to push through the pain to do what needs to be done–get him set up to succeed, and don’t waste a minute of time–get educated, get motivated for the road ahead. And then the frenzy dies down and you wait for the progress and healing. Slow. Steady. Two steps forward. One back. You wonder which of the dozen things that need addressing–diet, sensory, motor skills, speech, social skills, biomedical treatment, advocacy, awareness, support, your own health and marriage–you should try to tackle first, but you feel like you’re failing everyone and every venture because you can’t work hard enough or fast enough to patch any sort of normalcy together. If just one area was really succeeding! But everything feels clumsy, out of sync, messy, and unsettled. Life is a pendulum. One day, you feel like you’re riding on the upswing; the next day, you feel like the big metal pendulum hit you right in the gut.

Through it all, you feel like everyone else’s lives kept going and you got left behind to deal with this thing. At the end of the day, it’s you and your husband, and maybe the closest of family, and a few people you’ve met online or in person who have kids with autism too who are actually in this with you. Not to fault your co-workers or friends for not stepping in to help shoulder this more. Because oftentimes they don’t know what to say or do and it’s not like you haven’t learned how to put the mask on and do your work and make jokes, and still appear to be the bright, happy person you’ve always been. But, you know that you’ve changed. And you wish so badly that someone would ask, “How are you doing, really?” and maybe offer to take you out to coffee to just be there for you. But you are so consumed with the world of autism, it would probably overwhelm them to hear about it anyway.

Upon dealing with his son’s diagnosis, one father so resonated with me when he put it this way, “You want your child to get better so much that you literally become that desire. It is the prayer you utter on going to bed, the first thought upon waking, the mantra that floats into consciousness, bidden or unbidden, every ten minutes of every day of every year of your life. Make him whole, make him well, bring him back to us.” (The Autism Sourcebook).

I’m not who I was. Literally, one day before a family member mentioned something might be wrong with our son, we were talking about how great things were going and maybe we could take a trip to London or something the following summer to celebrate our 10th wedding anniversary. That seems like a lifetime ago. One day, I’ll probably emerge as a better person who has been refined by the fire. Tonight, I miss the feeling that I used to have when all was right with the world, and I wonder if I will ever get a break from autism. I wonder if I’ll be able to look at the families that have the two typical kids that are doing great and living the life that I always dreamed we would have without feeling that tinge of sadness for what could’ve been. I’m not saying that I’ve lost hope for the future. I can almost see that a few years down the road, we’re going to be amazed at how we’ve come through this. But, tonight, right now, I feel alone and kind of scared.

All of this comes flowing out of me after Josiah had a really good weekend, and showed us some excellent signs, too! I guess it means that my tank is running low again, and I need to go to God and read his Word and be encouraged that he is there with me. He is more than enough. Thanks for letting me spill and be real.

Isaiah 41:10
Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.

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2 Responses

  1. Hi Tahni, I have enjoyed reading your blog. Thanks for being so honest about what it is like for you. It helps me to understand what you and others I know are going through. You are right: He is more than enough.

  2. In response to …looking at other families and imagining what could have been…..I’m not sure if that feeling goes away. But, 13 years after diagnosis, it’s definitely less painful. There are also the eye opening moments when something tragic happens to the “perfect” families I once envied. It reminds me that most people do have hardships that they deal with in life, and if my boys having Fragile X is the worst thing that is happening to our family, then we’re doing great!

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