Thinking back on the date September 12, 2012 stirs many deep feelings inside of me. It was our D-Day… Diagnosis Day. The day my baby boy was diagnosed as being profoundly deaf. The day the life I knew ended and the day a new life, one as the parent of a child with special needs, began.
I see myself sitting in that little room alone with only my baby and the doctor who broke the news. I was scared, sad and lost. I didn’t know where to go, what to do, how to think or why. Why him. Why my baby? Why me?
Now, almost two and a half years later, and after another diagnosis of sensory integration disorder, I wish I could tap myself on the shoulder and whisper to myself a few secrets about the future. A few little secrets that would have lifted my downcast head and dried the tears upon my cheeks. Secrets that would have given pause to my fears and replaced them with little glimmers of hope and tiny inklings of wonder. If only I could have seen then what I see now, this is what I would have told myself that day:
“You may not be able to heal him, but he will heal you.”
He will heal you of your flawed definitions of “perfection” and “normal.” There’s no such thing as normal, and perfection is the love, innocence and joy he exudes. He will heal your desire to control life and remind you of the importance of faith. He will heal your selfishness and replace it with compassion and empathy.
“You will meet amazing people along the way, people you could not imagine a life without.”
The doctors, specialists and therapists you connect with will make an impact that lasts a lifetime. You will forge deep bonds with other parents who are going through similar issues, and they will be a built-in support system you come to rely on.
“You will learn about unconditional love.”
We all long to be loved and accepted no matter what we do or who we are, and your child is no different. He cannot do anything to earn your love; in fact, he will bring a lot of challenges you didn’t expect, yet you will love him more than anything. Likewise, he will see you in your most exhausted, frustrated moments, and still, he will be your biggest fan.
“You’ll be part of a miracle every day.”
After Junior gets his cochlear implants, you will see a miracle every single day. Tears — happy, happy ones — will sting your eyes when he hears you whisper, “I love you” and whispers, “uh lub oo” back. You will call to him from downstairs and he will run out of his bedroom, wondering what you want. You will ask him to hand you his plate and he will. He will try to sing along at church, he will ask you for more apple juice, he will bob his head when the radio is on. He will always be deaf, and yet he will hear you. And you will never, ever take that for granted.
“You will get the encouragement to keep going when you need it most.”
There will be days where you’re tired and sore about your circumstances, but you will also come to rely on the little breezes that give you rest and encouragement. Just when you feel ready to give up, something will happen to keep you going. You will meet another parent further down this path that can give you a glimpse of good things to come, someone will send you an encouraging article or quote, or your child will do something to remind you that it’s all OK. It’s all worth it.
“You would not change him.”
Yes, there are many parts about his deafness and sensory processing issues you will want to change. You will long for a good night’s sleep (I might leave out the part where he’s still not sleeping through the night at 2 years old.) You will be sad when people treat him different for no reason, you will get jealous of the parents who don’t seem to work as hard as you do, and you will still ask “why.” “Why” will never end. But, you will also come to a beautiful place where you accept every part of who he is and realize that all those parts make up the perfect little boy you love.
I know you can’t imagine what this path is going to hold. God created this path for you… you’ll never know why, but you’ll take great comfort in knowing it didn’t just happen. You were made for this. It will be a trek, but always remember this: the higher the mountain, the more incredible the views. And from here, the view is pretty good. You’ve come a long way. Sure, there are some other, higher mountains in the distance, but a future me will have to share those secrets later. I’m sure the view will be even better.
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