Driving home from the pediatrician’s office yesterday I kept turning to look at E in his carseat. He was staring out the window.
What is he thinking? Did he hear what Dr. M said? Can he process any of it?
Does he have any understanding of how his life is about to change? Of the work he will be required to do? Work that will push him to the edge of his processing, speaking and sensory boundaries?
Work that will frustrate and agitate him for the sole purpose of expanding those boundaries by a millimeter at a time, only to repeat the process next time?
My internal conversation had been interrupted by the sound of babbling from the back seat. Not from E; from his baby sister.
Little Princess. Our 14-month old baby girl. My mini-me.
“Oh God, how have I not even begun to think about how this will impact her?” I agonized.
I’m still agonizing about it today. I couldn’t sleep last night – again – thinking about it. Thinking about her. Wondering whether she will get to experience the unique and precious relationship of a little sister with a protective big brother. Whether she will be able to have a typical childhood, or if she’ll miss out on so much because her brother can’t participate.
For over a week now I’ve been focused almost exclusively on E. And if I’m honest with myself, on me.
With everything and everyone else, I’ve just been going through the motions.
She needs me too. She needs me to be present. E gets to live in his own world most of the time; I do not.
She’s napping right now, but I need her close to me. Lifting her gently from her crib – careful not to wake her – I snuggle her to my chest.
I need her to know I’m here. I need to apologize for not being truly present for the past week. I’m apologizing in her language. In cuddles. Hugs. Kisses.
“Oh God, how do we do this?” I pray, fresh tears streaming down my face and onto her pale pink onesie. “How do we raise her to understand the challenges her brother faces when we don’t even understand ourselves? How do we make sure she doesn’t resent him for the experiences she may not get to have?”
As I look at her sleeping peacefully on my chest, my mind races to future birthday parties, sleepovers, carnivals. Going to movies, concerts, sporting events. Will E be able to handle any of that? And if not, what does that mean for her?
Suddenly, a memory from more than a year ago surfaces in my emotion-wracked, sleep-deprived mind.
I was 6 months pregnant with Little Princess. E was 3 years old. My husband had moved to Texas ahead of us for a new job, so my Mom was staying with me to help with the upcoming move.
I’d heard that Sesame Street Live was coming to town and bought tickets immediately. E loves Elmo! His first birthday party was Elmo-themed! He will LOVE this!
On the day of the show, I dressed E in his Elmo shirt and we set off for the venue. I was giddy with anticipation over the joy I just knew E would have when he got to see Elmo in person.
My excitement was short-lived.
From the moment we walked into the venue and took our seats, E was off. He wouldn’t sit in his seat. He climbed into my lap and buried his head in my chest. My Mom and I looked at each other in bewilderment.
The show began. The characters took the stage to loud, lively music. E screamed and clung to me.
“E, what’s wrong? Look, baby! It’s Elmo! Don’t you want to wave to Elmo?”
He turned his face up to me and what I saw shook me. Pure fear. Terror, in fact.
“Mom, we have to go,” I said, my heart racing as my protective instinct kicked into high gear. “I don’t know what’s going on, but he looks terrified. We have to get out of here.”
I gripped E to my chest like my life depended on it as I maneuvered my pregnant body over the row of moms, dads and kids gleefully enjoying the show. We drew some strange looks. I didn’t care. “I’ve GOT to get him out of here,” I mumbled to myself.
Once in the car, E fell asleep immediately. He was sweaty and spent. Exhausted from anxiety.
As he slept, I cried. Tears of frustration. Tears of failure.
“I don’t understand it, Mom,” I sobbed. “He LOVES Elmo! I thought he’d be so excited! I thought this would be such a special day for him!” I’m a failure, I’d thought at that moment. Here I am trying to do something special for my son that I thought would make him so happy, and all I did was terrify him.
The memory is interrupted as I realize my heart is pounding and my body temperature is rising. Little Princess must be feeling that too, because she’s stirring on my chest. Her eyes are fluttering open.
“Hi, baby girl, Momma’s got you.” I squeeze her tight.
She looks up at me with her trademark smile. Full of joy. No condemnation. No anger about the past week. That’s in the past. We're in the present.
This moment is about joy. Unconditional love. The love of a child.
Love that does not have the capacity to keep a record of wrongs. That doesn’t complain. Doesn’t condemn. Doesn’t waste a moment on the “you should have’s”.
There’s no room for any of that in this pure of a love.
It hits me. This is how God loves. Not condemning, just loving.
She’s had to sacrifice this past week. Because of me. Yet her eyes and cuddles are speaking pure love.
I can feel my heart healing.
“I love you, baby girl,” I whisper. “I promise you that no matter what experiences you might have to sacrifice, I will make up for those with more love than you’ll be able to hold.”