“I am failing at everything.” Dave’s puzzled look was accompanied by a tender, “You are being hyper-critical, and I need some specifics.” “Adelaide’s hair always looks disheveled.” I am sure that wasn’t the answer he was expecting. It was the first thing to spill out of my mouth. What I was really thinking made more sense. At least in my own mind. Adelaide’s hair looks so bad, because she spends so much of her day rolling around on the floor. Thrashing her head from side to side. I don’t get in all her therapy minutes everyday. She should be so much farther along. She is almost 3 and we didn’t meet all the goals I had hidden in my heart that I didn’t really tell anyone else about as I practically shouted that we were happy with any progress and I was cutting myself some slack. Lie. I haven’t been cutting myself slack. I have been pretending to grant myself grace in a crazy season, but I really do still think that I could be doing this special needs motherhood thing a lot better. “Well, get one of those hair things we saw.” A practical answer based on what I shared with him. So, I made the topsy tool and started fixing her hair.
But some adorable ponytails didn’t change the fact that I sometimes feel like I am watching my own life from seats right off a hockey rink. I can’t really describe it, because special needs parenting is so surreal. People say things like, “Well, she isn’t dead. You should be happy that she can do anything.” Yes, we are grateful she is alive. Yes, we are grateful she makes small gains. It doesn’t change the fact that lots of dreams died. And that I am supposed to have high expectations for what I want for her, while still keeping my expectations low enough that I don’t spiral into a depression when goals aren’t met and milestones screech to a halt and the gap between where she is supposed to be and what she does just gets wider every day.
I am speaking for myself. Dave is much better about all of this. When I start to feel like I can’t go one more day without progress, Dave reminds me that Adelaide will do all the things she has missed when there is a new Heaven and a new Earth. Some days, that keeps me going. Other days, I comb through every second of our day looking for some sort of inchstone. Did she make a new sound? Did she say a new letter? Did she try a new movement? I try to stay positive, speaking truth over our situation. Small gains are good things. We can do this day in and day out if she just makes a bit of progress every day. But even that isn’t the truth. There could come a day when Adelaide will stop making gains. She could most likely reach her potential. It may be soon, or it may be 40 years from now. I need to be ready for it and realize that even if we make no new gains in a day or a week, that it doesn’t mean I have failed. We still go on living if Adelaide reaches some imaginary line.
I often think my role is to help her do better, speak better, be better. But my role is to lead her to Jesus. And Jesus tells her that she is loved and that He was broken so she can be made whole. Her wholeness won’t be until later, but our understanding of time is so infantile. These past two years have felt like a decade to me. He also says that He will make me whole. And my wholeness looks different than Adelaide’s. My heart needs surgery right now as a I attempt to navigate this journey. I know that God wants more for me than feeling like I am hovering above my life and an option for an alternate ending is going to pop up soon like an Easter egg on a DVD. This is it. I want to be more intentional with this path.
I see other moms who are facing things I can’t even imagine, and they are graceful and put-together and a beaming example of joy. I know better than to compare myself to those moms, but I feel more like the mom in the before section of an ad about parenting. “Do you feel like you can’t be a special needs mom one more day? Do you just want to wake up from all of it and have a normal day? Do you look like this mom? [shots of Lyndse} Then we have the product for you…” and then those other moms would appear with smiles and pretty clothes and a Starbucks in hand to explain how they used to be like me, but now they aren’t.
And maybe I just need more time and I will morph into a mom who can handle this life. Or maybe I will just keep being me. Not sure. All this rambling to say, I have no idea what I am doing. And I don’t even know why I am writing this, except that I recently received a $20 Wal-Mart gift card from a friend and reader with a note: “You, your blog, and your Facebook posts bless me. Thank you for your honesty in some tough situations. In Christ, ______” So, I figured I would get really honest today. Maybe this time next year, I will be re-reading this while sipping a Starbucks and I will chuckle at my own words. Who knows.