Friday, December 19, 2008
This much I know
I've been maintaining radio silence for the past few days as I've gathered my wits about me and begun the process of wrapping my mind around the news we're pondering this holiday season. I can't say that the news is especially bad, nor can I say that it's good. It's just news ... the newest happening in the journey that we call life here.
A little more than nine years ago, I sat sobbing in the driver's seat of my gold Volvo 240 wagon, casting my eyes in the back seat at Jo, who was happily thumbing her way through an already dog-eared copy of Where the Wild Things Are. She was as cute as could be that hot summer day in her little red swing top with the oversized buttons and the denim shorts I'd bought on sale at Old Navy. She kicked her feet up and down as her eyes wandered over the pages of the book, and cocked her head ever so slightly to the left while pinching her right eye shut.
And this was why I was sobbing in the parking lot of a pediatric opthamologist. I had taken Jo in for what should have been a routine screen for a kid whose parents both wear glasses, and come out with a stack of literature, a stunned heart and a referral for a world-class specialist at the major children's center an hour and a half away.
My baby girl didn't just need glasses. The cute way she clenched one eye shut and turned her head was not an affect God had placed in her just so that I could coo and crow over it. It was a sign of something bigger. Something not so routine. Something wrong.
To this day, I can parrot back the diagnosis verbatim, but to the world at large it means nothing. The long and short of it is that Jo's vision, overall, was terrible, and her right eye was markedly weaker than her left. The right eye was beginning the slow journey inward ("crossed eyes") but that was only half of the problem. Her right eye was so weak that her brain had decided not to power it any longer. To turn it off. To render her blind.
Which would mean a lifetime of vision through one eye--one eye that was in no way capable of perfect vision, even when corrected.
My heart stopped that day, and it took many years for it to truly begin beating again. Exams, patches, therapy, countless screens, glasses, you name it. We waited, we worried, and we prayed. When Atticus reached two years old, I carted him to Jo's specialist and demanded the full nine yards. "Give him the screening you give kids who show symptoms," I told her, and she complied. I did the same thing with Logan. What, my heart begged, if those recessive genes had come together in just the right way again? They hadn't. Jo was the only one of our biological children to endure the intensive interventions.
The only one anointed with oil in my family room, in the glow of our fireplace, with the hands of our pastors and elders crowning her little round head.
The only one healed, at age 9.
The only one our doctor took notes on to send to her fellowship board.
The only one I can point at in the middle of a conversation with a stranger whose beautiful baby is sporting a pair of thick glasses and a patch and say, "Our God is still very much in the business of healing. Let me tell you about my daughter ...."
So what does this have to do with my news? My pondering?
I have once again found myself thrust into faith territory, the place where what you are told is your new normal looks nothing like the scenery you thought you'd find. I'm once again looking at a precious child and asking God to make me the parent I need to be in this season. This time, of course, I don't just know in my heart that He will provide. I know from experience. And that makes the road I'm looking at seem so much less rocky.
Oliver, age 2, is being evaluated for profound hearing loss. This is not the type of hearing loss that results from fluid in the ears or damage to the actual physiology of the ear. This is the type of deafness that rests in the brain and its complex processing of sound.
In all likelihood, Oliver has some residual hearing capabilities but will be considered functionally deaf.
And so we put our feet to yet another path where there are but one set of footprints. Thankfully, they are God's. And they are carrying us all.
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16 comments:
Why am I just left with the word "wow" in cases like this? It's so inadequate. And overused. And yet conveys what I felt the entire length of your post. From one end of the "wow" spectrum to the other.
I suppose it's better than all the other trite things that come to mind to say. I think I'll leave it at "wow." And prayers. Which is probably where it should have started, anyway.
You know my eyes were like Jo's right? Years of patching, eye therapy. Mine were healed when I got pregnant with my first child at age 23. I've gone without corrective lenses ever since. I'm still technically blind in my left eye but it has improved. In fact the longer I've gone without correcting it, the better it has gotten. It's amazing.
Jacob's favorite teacher is deaf, has a CI and speaks and teaches ASL and is just a cool guy. I don't know his history - ie when he was 2- but I would be glad to ask him to drop you a line if you'd like.
I am praying for Oliver right now. His life has been full of miracles so far--the biggest one, perhaps, being his placement in your home. I know God will give you what you need to navigate this.
God does still heal today and it is stories like Jo's that I love to hear. I am also glad that God does not always heal. Our now 20 year old son with severe mental retardation is a huge blessing to us. When i was a brand new Christian and he was 6 years old, I fervently prayed for his healing and then went to bed. I lay awake with eyes wide open for awhile before I ran back to his bedside to ask that God leave him exactly as he was, my son and exactly the way I loved him.
I will pray for Oliver and your family as you enter this new area of learning.
Oh Mary -
Words just aren't adequate in situations like this are they? I will be praying for the Holy Spirit to put words to my prayers for you all and for God to fulfill the GRACE promise again for you personally as you walk this out in real life...
Abrazos...
I don't know what to say, so I'm leaving you a comment to let you know I'm thinking of you all.
:[
I've been following your blog for some time now and it never fails to touch me. Especially today though. I'm currently going through all the vision testing and emotional roller coasters with my 3 year old. Today of all day I needed to hear it and today you posted. Praise God!
becky
batty7878@hotmail.com
I'm so glad that Oliver is in a home with parents who are equipped to love and guide him through this.
Lord, I lift up Oliver and his family up to You. I ask that You heal him for Your glory, and if not, may You provide peace, patience and grace that turns into reason to rejoice in the blessing. Amen.
Mary Grace, I love reading your blog. It is such a source of encouragement and a kick in the bum to keep walking closer to Christ.
~Luke
Isn't it wonderful He still sits on the same throne He sat on 9 years ago. No matter what His will is.
Praying for your little one.
Yet again, I'm touched by your writing, your news and how you move forth. (((MG)))
We've been down the same road, with our son! He is healed also! It was a rough time, and glad to be on the other side of it...but we are better for going through it!
Love your blog and added you to me Reader!
I'm praying for him and for you all. That little man is just so sweet. It must be so hard as his mom to wonder about his future or about how hard things might be along the road for him...
But as you have reminded me so often in my path with Finny in particular, God knows exactly what this little guy is going to grow up and do. And though it's hard as the mom to watch them suffer or struggle, only He knows what lies ahead down the road, and He knows that everything that Oliver will go through now is preparing him for what is to come.
It's so encouraging to see such hope and faith in you guys. Isn't it so good to feel safe, protected and cared for by God when you are facing questions like these?
Benny
Hey!
It's not the end of the world!!! :) HE will be able to turn off his kids when they are making too much noise with their toys! ;)
Sweetie, he will be ok... you caught him early... it's not too late. Email me: jeencb@gmail.com and I'll put you in touch with my Mom. She is a strong advocate and will give you loads of information that is unbiased.
I can talk on the phone... I had to decrease my cell phone minutes because I couldn't afford it! :) Then... my Mom put me on her plan... :)
Music is my passion - I love worship music - it doesn't change me.
I'm praying for you.
Hang in there!
Joy
I am glad Oliver is in a home that will deal with this. I have fostered several profoundly deaf kids over the years, and they were not as fortunate to have that. Welcome to another 'lamp unto my feet' portion of life. Of course I will pray.
Great blog! I hope you'll consider adding it to the aggregator at Deaf Village (www.deafvillage.com) -- we'd love to have you as part of our community!
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