I am about 12 years into motherhood now.. and like a lot of Mom's I know, I still don't feel like I'm getting it right. Mothering kids with medical issues takes a purposeful amount of focus and attention, the kind that sometimes prevents you from being that cool " chill" kind of mom..yet still I try , and every day I learn.
I have learned that sometimes rolling off the bed as a result of a tickle fight is the kind of good clean fun that all kids need, low muscle tone or not.
I have learned that a smiling , happy faced kid, that got that " 5 more minutes!" in the pool she desperately wanted can help you dismiss and not obsess over-the flushed color of her fatigued face.
I have learned that your sad, crying kid- can break your heart at any age- whether a sick toddler unable to tell you what's wrong or a frustrated, overtired 10 year old that just can't verbalize every feeling she feels.
I have learned that your child can inspire you in the every day.. that if a kid who has to work so hard to accomplish the easiest task ( go to school with an overflowing backpack of medicine, snacks, toileting aids, technology super tools, a walker , a power wheelchair and a full time aide) is able to end her day proclaiming " I love my life!" than what do we have to really complain about anyway? Happiness is what you make it.
I have learned that parenting never gets easier, it just changes all the time.
When my youngest daughter Zoe, was 3, I was worried she would never walk, never speak- or learn what she needed to know. I was new at being a special needs kind of mom.
Now, Zoe is almost 10, and I still worry about the way she walks, the way she speaks- and how she learns. I am experienced at being her Mom, but in the back of my head , still think like I am her therapist.
I have learned that when O sometimes cries to me, feeling sad about the extra attention her sister receives, or whatever else I might have done to hurt her feelings- that it is okay to admit that I am not perfect and that I have failed, and that to hold her tight will make things amazingly better.
I have learned that at bedtime, when Zoe curls up against my chest, awkwardly propping her head against me.. that it's okay not to reach for a pillow to support her tired muscles, and that it is okay to just let her be- and pull her into me.
That just holding her in my arms is .. good enough.