There's a crazy thing that happens to a parent of a child with special needs. And it's not that I never experienced it before as a parent of a "typical" child- after all, you have 9 older brothers and sisters. It's just that it's magnified. Like a billion times.
And every time it creeps into my thinking, like a tiny sliver under the skin, pricking at first but threatening to turn into a throbbing, hurting wound if left untended...I have to tear it out. Deliberately, immediately, stop the downward spiral of pain that will inevitably continue without a conscious effort to end it.
It's the comparison bus. And if I had a dollar for every time it tried to hit me, aimed straight for my heart at lightning speed, unwavering in its path ....I'd be a very rich mama.
And Lily, the hard part is- I never see it coming.
Because honestly, we're way past the grief thing in this journey called Down syndrome. It's been many, many months since I cried any tears over your diagnosis. And honestly, you amaze me every day with what you can do, and those milestones you're reaching really - truly- flat out astound me. I must ask your daddy a hundred times a day- seriously- can you believe how smart she is? I'm soaking up every little moment, and learning to expect not accept has gotten so much easier...you've made it easier, because you really have taught us that even if we didn't quote that little mantra to ourselves daily, you'd be proving to us that there's a whole lot more can-do in that extra chromosome then we thought. But sometimes...
Sometimes I read somewhere about a baby who is exactly the same age as you, possessing that same extra chromosome...doing things or saying things that you're nowhere near doing or saying...and the bus hits. Doesn't just threaten to hit, but slams full force into my otherwise terrific view of "life with special needs" and has me asking all the painful questions again...
What if these delays aren't just delays, but are road signs, pointing to a future of serious cognitive limitations?
What if you aren't ever able to communicate effectively, and in spite all of our efforts to help you speak some day...you don't.
What if, in my effort to be the very best mommy for you that I can, reading everything I can get my hands on to help you, gleaning from other parents and therapists and trusted sources, I am not doing enough- and you suffer for it.
And Lily- I never asked these questions with your brothers and sisters. Sure, I had times when I compared what one of them was or wasn't doing with another child their age, and made mental notes to focus more on fine motor skills or eating healthier or reading more...but I never felt the weight of what those efforts might mean for their futures, never questioned that at some point they would eventually "get it" and I could relax and know that my child was going to be okay.
We've had late talkers and late walkers, we've seen both ends of the spectrum as far as when our children crawled or climbed or strung words together...but this comparison game never had such deadly stakes, never meant the difference between doing fine and drowning in despair.
But the great thing about walking out this parenting-special-needs-thing ? It does get easier. Because this time when I watched that baby perfectly sign to his mama what he wanted, eyes locked on hers and clearly saying "music" with his hands, this time when I read those words, "she says baby" and knew that little accomplishment was probably light years away from where you are right now...
This time...I stopped the bus.
Because you know what I've found, dearest Lily? It's just an illusion. That dark phantom, barreling down the highway of my mind, ready to knock me off guard again, sending me careening wildly to the place of grief I thought I recovered from long ago? It's just a mirage. It has no more hold over me than I will let it, and with the flick of a little switch in my brain called will, combined with a sucker punch of faith - it's gone.
I truly do have power over my fears and my faith and those inevitable what-ifs. I can choose to dwell on them and allow them to torment me and rob me of what-is, or I can turn them off and realize that at some point you are going to be who God made you to be. Will I strive to do better if I feel I'm not giving you all the tools you need to grow and learn and develop well? Absolutely. But torture myself by analyzing every little detail of what we're doing to help you, from how many hours a day I spend on therapy, to what type of vitamin regimen we put you on? Not going to go there. I am going to allow healthy introspection and honest assessment of our parenting skills, but I refuse to live my life worrying about the future, and what it holds for you. I'm not going to scrutinize every little milestone- missed or celebrated- to try to judge what lies ahead.
Because in the end, you are happy and you are loved and you are my Lily, and I don't want to miss one single beautiful moment of who you are today by grasping at who I hope you become.
Finally brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things. Philippians 4:8
Loving my perfect Lily,