Have you ever experienced that unnerving feeling in your spirit that something isn’t right? No matter how hard you try to ignore it or to snuff it out, the feeling is persistent and insistent.
I hate that feeling.
Last week, I loaded Alisa in the minivan and took her to an appointment with a pediatric ophthalmologist. We had been waiting to see a doctor for her eyes. For the last month or so, we noticed that Alisa’s eyesight did not seem to be what we’d expect at this point. Lack of eye contact and little eye tracking were among the other outward symptoms prompting that feeling of discomfort to arise within me. As a parent, I’m not sure anything is more unnerving than realizing something might not be working correctly with your child’s eyes.
Once again, I found myself at this place of complete lack of control over the health and well-being of my daughter. I could not fix the problem; I could not identify exactly what the problem was, if there was a real problem at all. All I knew was that my daughter needed to be seen by a medical professional, and there was a very long wait to get an appointment.
And so we waited. While we waited, we continued to work with Alisa. I spent my days desperately trying to get Alisa to look into my eyes, to smile while making eye contact, to let me know in some way that she could see me. I would occasionally see her focus, but not for long. She can see, but she can’t see well, I would tell myself.
And so we waited. While we waited, the nights were long. I would go from rejoicing in the daytime over signs of vision in Alisa to worrying in the nighttime over the most irrational fears concerning Alisa. She can’t see; she can’t see at all, I would conclude. Isn’t it amazing how all manner of reason seems to slip from our learned critical thinking skills in the middle of the night? It was exhausting.
Finally and miraculously (supernaturally?), an appointment came available for us last week.
The day before the ophthalmologist appointment, I found myself sitting on the floor next to Alisa as I talked with a new therapist visiting our home. She wanted to know some of our journey with Alisa, so I gave her brief details, not really wanting to go into the whole story. Finally, she looked me in the eyes and asked, “Have you grieved yet?”
I hesitated for a moment. I fumbled, looking at Alisa. Truth be told, I had been grieving deeply that day, but I couldn’t find the words to explain how I felt. If I could have expressed in that moment what my heart was really feeling, I would have explained it like this: suddenly being thrust into the world of Down syndrome has brought me through a sort of ocean-like grief. We received the diagnosis prenatally, and we grieved hard over the shock, as if being tossed about by waves in a great storm. Eventually, we arrived at a place of understanding and accepting, and the waters settled. All was peaceful for us as we focused on getting Alisa here safely. Since her birth, our days truly have been filled with such gratitude and thanksgiving over her life. We delight in Alisa, and we marvel at her fighting spirit. I believe she will achieve great things in her life. I have never known, though, when a rogue wave might wash over me, or when I will find myself once again battered by a fierce storm of grief.
Instead of saying that, I blurted out something like, “Well, um, we found out prenatally, so I did a lot of grieving then, but…you know, I do still grieve sometimes.” I looked in the therapist’s eyes, and she was nodding her head with encouragement at my not-so-eloquent words. She understood even the things I didn’t speak out loud, because her 20 year-old daughter has Down syndrome. She graciously replied to me, “You will find your experience that way. You will grieve, then you will be fine for a while. Then something else will trigger grief again.” She then told me all about her daughter, and she smiled with joy and pride as she recounted all she can do now as a young adult. Sure, there are limitations, but her daughter’s life has far exceeded the expectations this mother had 20 years ago when they received the surprising diagnosis at birth.
As we talked, I felt a yearning deep within me. Hope.
I realized that afternoon that my concern for Alisa’s eyesight had quickly ushered me back to that raw, grieving place. While grief can be healthy and necessary, choosing to think on things we cannot change is fruitless. Concern for my daughter’s well-being had consumed my thoughts, and at times I found myself focused on things I cannot control and on things that might not even be reality. As I talked with that mom the day before Alisa’s eye appointment, the Lord drew me back to His comforting refuge. I had allowed fears in temporary circumstances to draw my mind’s attention and my heart’s affections away from the One who matters, the One who loves my daughter more deeply and completely than I ever could. I cannot change anything for Alisa by living in fear or nurturing an imagination of “worst case scenarios,” but I can trust and call on the One who has ordained her days.
After visiting with that therapist, I finally heard as the Holy Spirit whispered healing words over my heart. He recalled in my heart a verse I had memorized long ago, and He sang this verse over me:
“Weeping may tarry for the night, but joy comes with the morning.” Psalm 30:5b, emphasis mine
Joy? Ah, joy. It is amazing how I can so quickly forget about you when circumstances arise that remind me of my limitations and humanity. Joy, you are an ever-so complicated emotion to me. You are the meaning of Alisa’s name, given to her in a time of great despair for us, and for that reason, you are precious to me. You visited me throughout my pregnancy and have had a welcome presence in our home during Alisa’s short life. That day last week, I saw in Alisa’s therapist a fellow mom who has discovered the joy of the Lord, she at one end of the journey and me at another, both of us walking hard but wonderful roads.
And there you have the quintessential difference between one who genuinely knows Christ and one who does not. Though the world may think we have lost our minds, in Christ we can know joy even in the unexpected. This is our promise. Weeping? Yes, it will come. We all will grieve in life. We all will face the unthinkable at one point or another, feeling that night will never end, that the sun will no longer return to bring light into our lives. But the storms of grief will only tarry for a night; we can count on that as fact. For Christ followers, suffering will not last forever.
But joy? Joy comes with the morning, and in Christ we have the freedom to take hold of joy today.
By the way, Alisa’s checkup with the ophthalmologist was very encouraging. She can see, though she did have a few areas of concern that we will watch and treat in time, if needed. Right now, we will allow her eyes more time to develop and mature, as that is what she needs. Overall, though, her eyes are doing well. Thank you for praying for our girl!