You may have gotten this from my posts about fear and the autism clinic last week, but the truth is I’m struggling. Special needs parenting is kicking my butt in a whole new way. I knew C would have a difficult time transitioning to preschool. I didn’t expect to see him lose skills and independence. I didn’t anticipate that he would get a cold and end up vomiting so many times that he hasn’t kept a full tube feeding down in days. Yes, vomiting from a cold; because that’s how his life is as a tubie.
Whenever I hear parents extraneously worrying about a child’s aches, pains or viruses, I find myself wishing that the fear in which I operate was that simple. For me, fear is the accomplice of special needs parenting. I may not want it to be there. I may not like it there. But, it’s there.
Starting a new routine that includes school drop off is just plain weird! I do not know how my child got so big so quickly. Even with all the challenging days and nights, I don’t know how we arrived at preschool so quickly. I was apprehensive about today. He was leaving my care for a few hours. How could I be sure his needs were being met? How could I know he was okay?
You reached over the bed rail for my hand. I squeezed it tightly, gazing into your eyes. I love you, my child. My heart.
As I looked at you and gave your little hand a squeeze, I was brought back to the countless nights I rocked you to sleep. I slept in the rocking chair with you many days and nights, because you would not sleep any other way. I held you, rocked you, breathed in your sweetness.
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I hear Baby Jo crying and one eye opens just enough to realize that it is early. Too early. I set my alarm for 5:30am and it hasn’t sounded yet. Just as I start to say, “Are you kidding me?” our bedroom door bursts open and C appears at the side of my bed. “Mommy, I need you.” My day begins as it usually does, before the sun. I stagger to the Keurig, pop in a McCafé pod and go about attending to two small children while my coffee brews.
Baby Jo and I took this selfie last night. You see our smiles, but you can’t see anything but this brief moment in time. That’s the problem with selfies. We see all these smiling faces plastered over social media, but do we really know what’s going on? What’s the story behind the selfie?
I’ve been working hard on being a better listener. For me, that meant finding a church that I could call my home and not being anonymous there. I tried and failed twice to join a small group (Hubster’s night schedule is a little insane), but Hubster and I actually just finished one together. The key ingredient: they offered childcare! I wanted to find a church and get involved so that I wasn’t just an anonymous face. I wanted people to notice when I wasn’t there. Accountability, friendships, the feeling that our family was “settled” somewhere.
There was something about the holidays that was magical. The snow falling softly. The warm cup of coffee in hand as we critiqued neighborhood Christmas lights. The gatherings of friends and family.
I have to say, the holidays no longer feel magical. I think a lot of the “magic” of life is gone now. These days, my world revolves primarily around C’s health, therapy and feedings. Everything else just kind of…happens.
Friends, I need a little grace right now.
I may look at your message, only to be interrupted before I am able to reply.
I may not be able to answer your call, because C is acting out.
I may forget something that you asked me to do, because my mind is racing with therapy ideas and tasks.
“I hope you have a child just like you someday.”
What is that? A curse? Because it worked.
My 3-year-old son and I are one soul inhabiting two bodies. We are basically the same person. He is me – in the body of a 3-year-old boy, that is.