It’s scary, it’s rare — oh yeah, there are only a few hundred people in the world that have this condition
The yellow marker on the floor stares at me, begging me to cover it so it doesn’t dry out.
But I can’t. I’ve finally lain down on the couch, and I just can’t muster up the energy to crouch down and search for the cover.
My eyes begin to close, and I think back to a few months ago, when the doctor at the hospital told me my newborn had failed his hearing screening. He said it’s common enough, it’s not a major issue, even though it feels like it is. My mind jumps to crazy places, in the way only people with secret anxieties and worries can identify with. What if he can’t hear his mother’s voice? His father’s words?
I know I’m exaggerating because the doctor says he can hear. He can hear my voice; he can hear my husband’s. He can hear us telling him we love him. But it feels like there’s a huge rock on my chest that can’t be moved off until all the follow-up appointments are done.
He’s so perfect, my little baby, and I want the doctors to say he’s okay. That everything is fine, and I don’t have to worry or think, make more phone calls or book more appointments. I want them to say that all this rushing back and forth to and from doctors, trying to get urine samples (who knew it could be so hard to get that from a newborn?), and dealing with insurance issues is just a bad dream.
It’s all over. Everything is okay.
Or so we thought.
Really, it was the quiet before the storm.
This wasn’t supposed to turn into a story. We’re not one of those people. But instead, there’s more testing. Then a diagnosis. It’s scary, it’s rare — oh yeah, there are only a few hundred people in the world that have this condition.
It affects the eyes. Oh, Hashem, those beautiful big green eyes. You’re kidding me, right? I’m not even 30, I’m way too young to make all these adult decisions. Baruch Hashem, my baby can hear, but his vision? Well, no one knows. Those beautiful big green eyes might never see. The doctors say we’ll get a clearer picture of his visual ability when he can talk, but Hashem, tell me, when will he start to speak?
We’re very suddenly uprooted from the place we love due to all these medical complications. There are more therapy sessions than I can count, more doctor appointments than it’s humanely possible to go to. Friends? Ha, who has time to make those when you’re thrust into a new place, a move that was never supposed to happen?
I was never someone who was “good” with special-needs kids. I was that ra ra counselor and division head in camp who was constantly hoarse, while my friends worked with the special-needs children with such patience and dedication.
But now Hashem has given me one to take care of, to love, and to do the best I can with. Let the games begin.
I’ve always tried to be that amazing mother who gets pumped about the little things in life. When my three-year-old showed me her scribbles of green and blue (that was apparently a school bus), I really was excited and told her how proud I was.
But when my little baby started laughing, actually laughing, when his older sister screamed, “Ah!” at ridiculously high decibels, my heart burst. I felt like bawling. Who knew a baby’s laugh could be so powerful? “Keep screaming,” I told big sister, just so I could hear the sound of his laughter again.
What a gift it is that our body can emit such a pure and beautiful sound. What a gift it is that life is happy and joyous, that there’s what to laugh about. What a gift it is that a healthy human being has the common sense to laugh or smile when he sees a stranger doing the same.
But the real gift is that Hashem gave me this beautiful child to teach me to appreciate even the simple things in life. Therapists are in and out of our house all day. They’re basically our best friends, though we have no privacy from them.
One day I had a minute to speak to my husband on the phone and jokingly described the hectic morning to him. When I hung up, the therapist who was there said to me, “Well, at least you’re still laughing!”
It’s so true. It’s totally up to me whether to laugh or cry about my situation.
There’s so much to be thankful for on a day-to-day basis. I just have to keep reminding myself of that. Thank You, Hashem, that my child is able to eat without a feeding tube, sleep at home, and I can cuddle him as much as I want. Yes, he has a restricted diet, and yes, he has digestive problems that can cause him to scream for hours, and the vision situation isn’t a simple thing. Don’t get me wrong, there are still days when I wish I could hide in bed, crying.
But sometimes I decide it’s time to let go and just laugh. Life can be gray and hard; we all have our fair share of those moments. No one is belittling anyone’s pain, but there is so much positivity and light to go around, we can’t be blind to it.
One thing I promise myself is that even if my baby is blind to the world, he’ll never be blind to Hashem’s kindness, because yes, even a blind person can see it.
So how do I cope, you ask? How do I manage these feelings of utter and total helplessness?
I believe so strongly, my heart tightens as I contemplate it. I believe there is a reason I was given this child to take care of. No matter how hard it is, I believe that this too is good.
Before He gives someone a challenge, He gives him the tools to handle it. Did you hear that?! I said before. No, not during, and not after the challenge is there. You have it in you before it’s even upon you.
So back to that dear yellow marker. I push myself up from the couch, find the lid, and cover it so it doesn’t dry out. Like that yellow marker on the floor, begging, pleading, asking to be allowed to hold out a little longer, I’ll hold out too, using whatever I have inside to help me push through.
I can do this.
I know there’s sunlight at the end of the tunnel, even if I can’t see it at the moment, and my baby might never see it. It’s there, I just need to soak in the warmth during these cold times and trust Him.
Those palm tree days are almost here.
(Originally featured in Family First, Issue 763)
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