E and I visited our home state this week while her Papa worked tirelessly at home preparing for our move. It was so good to see our friends and family after a year apart. Yet, my heart was downcast.
With each visit (and there were many), our dear ones commented on how strong E was, how well she looked. All well-meaning, and I very much agree! E has met her physical milestones slowly, but beautifully. Every time she sits or stands or even moves I swell with pride!
I often post her physical milestones to share with friends… So I suppose their enthusiasm stems from my own social media. However, I post them because they’re the most obvious to see… and they happen more frequently.
My E has roughly the cognitive level of a 7 month old, lower in some areas, higher in others (she’d be off the charts if cleverness and stubbornness were scored). She does not play with toys the ways they’re meant to be played with, often tossing them around instead of truly interacting with them. It took her ages to play and enjoy peekaboo. She opens and closes drawers and cabinet doors but doesn’t care what’s inside.
She doesn’t babble, only squeals. Her lips have never uttered “Mama”, and purely accidentally said “Dada” twice. Literally twice. The statistics of her syndromes tell us to not expect to hear any utterances of the intelligible sort. They say I may never hear my sweet girl call me “Mama”, her Papa may never hear “I love you”.
The sorrow of this is difficult to put into words but it’s the reason my heart was downcast during our visits (and why I’m not excited about the Gilmore Girls reboot). In the hardest part of my heart I would rather E not walk if it meant that I could have a conversation with her: a fully aware, full cognitive capacity type of conversation that I know I’ll only have with her in Heaven.
Yet I pray. I thank God for her, for how far she’s come, and I ask Him to let her speak some day, to let her be able to tell us when she’s hurt or when she’s sad, or why she’s happy.
Last Sunday morning E and I attended church with my mother-in-love, excited to see all of the people who had been praying for her. The pastor asked before the service if he could pray for us, and I agreed. But after a week of selfish, ungrateful thinking my heart was hard. As he asked us to come forward I asked God to change my heart, even though I “just” knew it was going to be another “Help her walk, Lord!” kind of prayer. (Like I said, bitter and ugly heart moment). But the Pastor gently took her hand and only said three things.
Give her enough energy to make her Mama tired.
Give her a voice, Lord.
Make her a preacher.
I. Lost. It. While losing it, and doing my trademark ugly cry in front of the congregation, I felt the Lord press upon me with a truth for my embittered heart: “I already have given her a voice. She is already my preacher… Don’t you see?”
And I realized: Ben and I are her voice. We speak up for her, tell her story, and tell others how faithful God has been to her and us. We advocate, we educate, we laugh loudly and slowly so she can one day giggle with us. I am loud, and am never succinct in telling others about her.
And boy, does she preach. She preaches His goodness in her smile, His strength in her perseverance, His attention to detail in her chromosomes. She preaches about what it means to love simply and purely, and she teaches us how to have faith when the future is dismal. She teaches us about the power of prayer.
Of course, one of my prayers will continue to be to hear her sweet voice someday, and I may take awhile to watch Gilmore Girls without crying… but that prayer was truly a kiss from Jesus. It showed me that He is well aware of our girl and her struggling Mama, and He hears both of our voices. 🙂