The Sunshine, fresh air, and warmth all feel right together. If I added the words joy, hope, and laughter, no one would question their natural place in this list. What if I wanted to tag grief onto the end? How about fear? No. We don’t picture ourselves in a sun-kissed spring garden weeping or worried. How about under a weeping willow, alone? Yes, it’s ok to feel sorrow there. However, anguish and despair are only allowed in absolute solitude.
As a parent of a child with disabilities and complex medical needs, I feel all of these emotions almost daily. Whether I am changing my baby’s shirt or cleaning his bottom, I wonder if I will be doing this for the rest of our lives. When I gently caress his face and wipe off the spaghetti sauce, I ache with fear that he will never do this on his own. When Tug was a little over a year old, I made the following Facebook post about a harmless comment that brought the painful truth into sharper focus.
While walking into Church yesterday, a lady said about Winston, “wow, he’s growing so fast! I bet he’ll be walking soon.” I gave a smiling non-commital response.
She meant well. She cares about my boy. I know these things.
But, he isn’t growing fast and will definitely NOT walk soon. We’re still working on sitting and crawling. He will stand someday. He will walk someday. Just not soon.
In this post, I publically state my tentative hope that my baby boy will stand and walk someday. To the world, this is shared as fact because people want sunshine and cheer. And, because I am called to spread joy and love, not despair. The truth? I don’t know if he will walk someday. Three weeks ago, I wasn’t sure he’d stand. But, a tiny ray of sunshine peeks through my solitude to feed my hope. A hope that scares me more than Tug’s future.
Hope can be crushed. I had confidently hoped for a healthy and whole child. Right after his birth, I prayed for a miracle. Yes, I see many miracles when I look back on those difficult days, but the sunshine barely shines through my personal shadow of fear and pain. My heart is already in pieces. One truthful sentence was all it took. “With this level of [brain] damage, it is unlikely he will have no problems.” Crush. In one day, I learned that my child may never walk, crawl or even stand. The neurologist said that Tug could have significant cognitive delays as well. Darkness. A shadow reaches over my shattered heart. That shadow is still with me and may never completely leave.
Truth can crush, but it also heals. Mist and shadow can be burned away by the warmth of the sun. Each time Tug figures out a new skill, a bit more hope warms my heart. Every milestone met melts a few broken pieces together again. Two days ago, my baby boy stood while holding my thumbs. He stood! Winston called the sun to break through a bit more when he waved goodbye clearly for the very first time. He’s over 15 months old and these milestones are late. Or, as the doctors would say, delayed. I have yet to quiet the voice that reminds me of where he should be.
The voice of real Normal deepens the shadows. The little guy at the pool who is toddling around in his floaties is adorable, yet so very hard to watch. My friend’s baby who is already coloring brings our Not Normal into clearer focus as Tug is still mastering grasping. This is My Normal. My Normal is in this shadow. My boy is growing and blooming under this willow tree. This works for him as he develops and learns at his pace. Tug brings life and beauty to our little garden in the shade, and I am learning to see the beauty in the shadows.
As we sit under our willow tree and focus on today, we experience hope and joy… in the little things. The sunshine pierces the shadows and hope penetrates the sorrow.
I originally experienced this heartwrenching video on the website, Popsugar. I linked the YouTube version of it here for readers to see this painful path. My road is full of worry and heartache, but there are many moms out there who struggle with much more. A mother’s strength is truly just enough.
flower picture credit: sunset.com in the “20 colorful plants for shade gardens” article.