Amazing Grace, I once was lost but now am found, was blind but now I see

Looking just as horrible as every other new mom!

"For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God—not by works, so that no one can boast. For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do" (Ephesians 2:8-10). 

I will be the first to admit that I have led a fairly charmed life.  We all know there were a few crap years scattered in, some extremely life changing events, but honestly, years 1-29 were pretty much some seriously awesome real life perspective for the writers of “Leave it to Beaver” and “The Brady Bunch”.  I cannot tell you how many times Alice the maid (really it was my mom, but Carol Brady did not do a damn thing…it was all Alice) was helping me win a teeter-totter-a-thon or make all the goodies for a lemonade stand.  We are talking Pork Chops and Applesauce here folks.

When my first child was born I simply assumed my good fortune would continue (I think we can insert some sort of foreboding music here), and honestly it did….for a time anyway.

 

When she was seven weeks old I started to notice that she seemed listless a lot of time and NEVER slept (I clocked it, a grand total of 7 hours in a 24 hour period with 90 minutes being the maximum consecutive asleep time).  I was miserably exhausted, but at least she was not fussy as long as I held her and rocked her.  Finally I decided to make an appointment with the pediatrician, it was the final appointment of the day and all of the staff had gone home.  He did an extremely thorough examination and I kept waiting to hear the “new mom/idiot” speech but he was oohing and aahing and flashing the otoscope light in her eyes A LOT.  At one point he said, “Well it’s not cataracts”, I’m all WTF???  So with no further ado he said to give her Benadryl and come back in the morning.

Clearly I went home and drank wine, it was a pump and dump kind of night…I vaguely remember it well.

The next morning I went back to the pediatrician, I had skimmed over the events of the previous days’ appointment with my husband and mother but did not let on my true level of concern over:

a.   What I had been seeing with Grace; and

b.      The pediatrician’s response to it.



So again he looked at her, looked at her eyes and said he wanted her to see an ophthalmologist, I was finally done playing games.  I looked at him square in the eye and said, “I need you to tell me right now what you think is wrong.  That is what I deserve, this is my child.”  His response, “I think this child is without sight and I have never said that to a parent before.”  Now that’s a conversation stopper. 

I partially recover, my eyes start welling up and he puts his hand on my shoulder and says, “It’ll be OK mom”.

This was a Friday morning so I left with a referral for a Monday morning ophthalmology appointment.  I called my husband and left the calmest message on his voicemail and then I called my mother and completely LOST MY SHIT.  So I am driving home from just hearing I had a blind child, talking on the phone, and having my very first panic attack ever, awesome.  I am screaming at my mom that the baby is blind and I can’t breathe and she’s all, “where are you?”  I shriek back that I am driving and she points out that perhaps pulling over might be the wise choice.  Moms are so stinking smart.

I finally get home and start harassing my child by playing eye tracking game after eye tracking game…btw, I totally won since she was blind and all.

Luckily I called my neighbor and told her what was going on and she told me to sit tight as she called her friend (an excellent ophthalmologist) who said we should come right away. 



My neighbor came with Grace and me to the appointment and I met, perhaps, the smartest and kindest woman that will ever have the privilege of knowing; Dr. Kinga Tibold.  She spent almost an hour with Grace and was in complete agreement that this beautiful baby girl could not see, but she also reassured me that she did not see a retinal-blastoma and that the anatomy of the eye looked perfect.  It could be delayed visual maturation, or a host of other problems but at least I had an answer, something to go on. Plus, no obvious cancer. All good news.

Such a ham...can you believe she did not get her first 
pair of glasses until 7th grade?

Dr. Tibold was amazing, I think I had met her once or twice at a party but she did not know me at all.  I think as a mother of three girls herself she simply wanted to help and quite frankly, at that moment she was the only person I knew who could.  To top it all off her office did not accept my insurance so I was prepped and ready to write a check and she just waved it off. 

I cannot speak for everyone, but these days there are not a lot of people with that level of compassion.  It was like she knew I was experiencing the worst day of my life thus far and she just wanted to make it easier in any way that she possibly could.  From that day forward I have always looked to her as one of the finest physicians I have had the opportunity to work with and will forever trust her judgment, professionally and personally.

The following Tuesday we took Grace to the Wilmer Eye Institute at Johns Hopkins and they agreed completely with Dr. Tibold’s assessment of the situation.  We were many tests away from finding the reason for the blindness but we knew it was not cancer and that was good enough for us.

Not quite to peek-a-boo but still super cute!

As the months and weeks followed we learned that Grace had Ocular Motor Apraxia and a Dandy Walker Variant.  We were given no hope that she would ever see but we were provided with wonderful vision therapists through Maryland School for the Blind and the incredible therapists from the St. Mary’s County School system who worked with Grace from birth through 7th grade when they had both moved. So much of her progress can be attributed to the Liz's.  It felt like every week we had an MRI or another specialist appointment but we wanted to do everything possible to achieve the best outcome for our sweet girl.  We even took her to see a vestibular eye movement specialist…who knew?

Through all of the testing, poking and prodding, they never actually DID anything to her, no procedures, nothing.  It was discovered that she had a Dandy Walker Variant in her brain that basically had caused the portion of her cerebellum responsible for sight to not develop but everything else was fine.  We even went and saw world famous pediatric neurosurgeon, Dr. Ben Carson at Hopkins many times over the next ten years but he kept shying away from actual surgery.  This was a blessing as we later discovered that surgery would have killed her since her cyst was connected at the fourth ventricle and would have caused her to have a massive brain bleed.

In the midst of all of this I got pregnant with our second daughter and we were ecstatic. When I has pregnant with Grace I imagined nothing less than the perfect child with absolutely no health issues (she really is perfect, LOVE HER) but with the our second daughter all I cared about was a having a child who could see. During my third trimester we drove up to Hopkins to get a special ultrasound because of all of the Malformations that Grace had in her brain. This was the day my life was forever changed because my very perfect baby girl, Sarah, had no heartbeat. We went home and after 50 hours of labor, with almost every conceivable complication, I delivered a very perfect, very much forever asleep, baby girl.

With sadness and grief, each day came and went. I worked with Grace and helped her learn to navigate her world.  My husband and I were enveloped in such sadness but also an odd sense of hope.  She was clearly a determined child and was just so lovable.  She was at the point that she knew when we were nearby and would giggle and smile. 



One day my sweet girl started playing peek-a-boo with me, at first it honestly did not register.  This was clearly a game we did not play, after 15 months of no vision, playing “now you don’t see me, now you still don’t see me, oh look wait, hey, you still don’t see me….peek-a-boo” was not at the top of our list of therapeutic family fun games.  Suddenly I realized what was happening...Insert light bulb flashing over my head here!!!!  OH MY GOD!!!!

This child had been prayed about around the world.  Could it seriously be like the song…”I once was lost but now am found; was blind but now I see.”  Oh my sweet Amazing Grace.  I of course got so excited that I made the poor child cry, but she could see!

Not perfectly at first, she could not even focus for more than a few seconds, but it was something.  Finally, a little hope. She was about 18 months old before she had any meaningful vision or eye gaze, but we were on our way and so incredibly blessed.  Apparently brain cells are multi-plastic until about age 12 and since she was short a few vision cells, other cells took over and allowed her to see. 

Even in this chaotic world, there are still miracles. Through faith and prayer we can even see them occur, most are not this obvious and clear but they are there. God is very good to our family and we continue to see His work in our lives as we put our Faith in Him in all things. Once you see His work in your life in such a profound way you realize that God's Grace is the biggest gift you can be given, but one you never deserve.

She is now getting ready to graduate high school and the money we had saved for long term care is now being applied towards college tuition. She graduates from high school today and started her first college class yesterday. Her goal is to become a special education teacher and then go on to earn her master's degree in vision therapy. Our girl has a servants heart and a love of mission work that makes my heart so happy. Grace loves Jesus and even enjoys sharing His word with her friends and family. Grace and her Grandma Karnei have a very close and special relationship and the two of them are like frick and frack, in their joyful approach to life and faith in God. Our Gracie Hacie has reminded us that miracles do happen…so often we think of them as a phenomenon of long ago…a Biblical story or a Guideposts moment.  I am here to tell you that they happen every single day, sometimes to people you know.

Grace was quite the rider,
this is her favorite pony, Jerri.

Today Grace loves all animals, Sugar Gliders
are kind of her new favorite...Kinga...