Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, November 29, 2011

Sometimes, *Sometimes*, Seeing Is Believing

Now let's not get carried away with my title of this post .... of course, seeing is not believing.  We believe in God, yet we don't necessarily "see" Him... we know He is there, though.  We believe in the Holy Spirit, the Saints and Angels are around, protecting us, guiding us, and being our intercessors for our prayers to God.. but we don't "see" them.  We believe our faith is good, worthy, and true... but we cannot "see" our faith. We believe people are generally good, but don't often get to witness "proof" of this. And in this case specifically, we believe Meagan's brain  is regaining some of the abilities that 'normal' babies have from the day they were born.  We cannot see these abilities in her brain growth, but we believe they are there.  However, *sometimes*, seeing is believing.  Sometimes, we get a little glimpse of a visible sign that what we believe is 'working,' or is actually real.

Meagan has been 'staring' for quite some time now.  That is really the best way to describe how she 'looked' at things.  She simply stared off into space.  Nothing would change her focus - not a toy, my face, a black and white toy, lights, etc.  I was starting to get frustrated.. not at Meagan, but, at the whole situation.  I remembered my other children at 10 weeks old.  They looked around at actual things... they responded to people's faces, especially mine, being around them all the time .... they looked to light, toys, and reacted to noise.  I was frustrated for Meagan that none of this seemed to be happening.  I understood she would need more time for even the simplest milestones, but, I was feeling disappointment that I could not look at my baby and have her recognize me, let alone make her smile. I also began to worry because her vision doctor had said Meagan's optic nerves were short... she may have vision issues and we needed to watch it.  Then, in the last few weeks, she started doing something new.

One night, when I was up with Meagan changing her diaper, I walked over to our bathroom and flipped on the light.  Meagan was laying on my bed, on her back, and her head had been straight up - eyes staring at the ceiling.  As soon as the light illuminated our pitch black room, I saw her eyes slowly find their way toward the direction of the light and then stop. She stared... at the light.  I was excited! But afraid it was a coincidence... so I turned the light off.  Meagans eyes wandered.  I turned it on again, and her eyes found the light and stared. I knew she was seeing. 

This continued over the last few weeks, but I still wasn't getting any response when I would lay close to her.  Sometimes I would lay right in front of her face and her eyes would wander all over.  It almost looked like she was trying not to look at me - that's how much her eyes were rolling.  They would also cross a lot and could not focus.  I knew she could see stark contrasts, like the bathroom light in my dark room, but, she was not yet focusing on much up close. 

My parents were visiting over Thanksgiving, and picked up a few black and white toys for Meagan, which was a great idea so we could keep the contrasts to a minimum and try to get her to focus.  I held the toys in front of her, moved them at different angles, and made noises to get her attention. No change.  I thought, ok, with time it will come... but was a little disappointed she did not seem to focus on any of the toys.  I tried laying with her - and her eyes were in my direction, but certainly not looking at me.  They were looking to one side, then to the other.. then it was almost as if she'd stare right through me... there was no focus, and she was just in her own little world. I was sad.  I just wanted my little girl to look at me. Just once.

Of course, all of this was during Meagan's "fussy time" ... when her shunt had been slowed, and she really started to deteriorate in personality and behavior.  She was more drowsy and lethargic.. had less awake times... wasn't nursing well and when she did, would cry or wimper ... and she also would break out in sharp, high pitched cries in the middle of sleep, like she had a sudden stabbing pain.  Once we started to notice her head swelling, and her fluid pockets puckering out from between her sutures,  I was pretty sure the shunt setting was our problem.  As I described in the last blog entry, we had it reprogrammed late Saturday night, and she seemed to be a lot better by Sunday.

Meagan was having so many more 'awake' times on Sunday... this trend continued into Monday.  By Monday evening, she was happy, had eaten well, and was extremely alert.  It got me thinking ... I wonder if she would focus on a toy now that her head is feeling better.  I got out the Panda my parents had picked up -- I held it near her head, just slightly to the side of her line of vision. No reaction. Played the music and the sounds on the Panda. No reaction.  Hmmm.. so I tried holding it directly in front of her... and suddenly, I noticed her eyes cross... but.. then they uncrossed! She had the funniest look on her face, and pursed her mouth into a little pucker, almost as if she was saying "Oh!"  She was looking at the Panda!! I took the Panda away... she stared into space.. then I put it in front of her face again - and same reaction! Yippee.  We had about 1-3 seconds of focusing each time.

Now came the 'real' test.  I laid down next to Meagan.. right in front of her face.  At first, nothing.  Then, I noticed her eyes crossing again - she was trying to focus! I moved back just a little bit... and then, she looked right at me.  She stayed focused for a good 3 seconds, and then had wandering eyes .. but.. then she looked BACK at me. Her mouth went in that pucker, and her eyebrows raised up as if she recognized me.   I could see in her eyes the "studying" that was going on - she was not looking through me...for the first time in 10 weeks, my baby was finally looking AT me.  "I'm your Mommy, Meagan.. nice to meet you finally" I said to her.  Then it hit me.

Of course she knew I was her Mommy.  I was the one who carried her inside for almost 9 months.  I was the one who kept her there when others thought her life was worthless.  I was the one who first kissed her head as she was whisked away to be Baptized, Confirmed, and then transferred.  I was the one who pushed myself through the pain to get out of the hospital in 2 days after a c-section to race to Children's and hold her for the first time for only10 minutes as she went to her brain surgery. I was the one who painstakingly sat in the NICU for 4 weeks, everyday, 8 hours a day, just to hold her.  I was the one who didn't give up on her eating.  I was the one who listened to her signals and knew she was ready to start nursing. I was the one who snuggled her all night when she didn't sleep.

As exhilerating as it was to have Meagan look at me for the first time last night, I learned a greater lesson from her.  Meagan was telling me she didn't need to see me for 10 weeks to know I was her Mommy. Whether she literally saw me or not didn't ever matter.  What mattered was my love for her.. because that is something she would know always.   I realized this morning, that Meagan didn't 'see' me for the first time last night.. she recognized me. She had always believed I was her Mommy ... and now her blind faith had paid off. 

Thank you Meagan, for always reminding me of what is important.  While watching you conquer a milestone last night was wonderful, I was so worried about you seeing, that I missed seeing your faith in me.  God always says for us to have the faith of a little child ... and now I know why.


  1. That was really beautiful. Brought tears to my eyes and I'm at work! Keep on being an inspiration to us all Meagan :) Love to you all!

  2. Precious reason to Praise God! I love that picture! Way to go Meagan, your Mama is SO proud of you and so am I! HUGS!

  3. love, love, love this. beautifully written:)

  4. That moment when your child first looks at you... we take it so for granted with neurotypical children. Shiny didn't open her eyes for 3 weeks, and when she finally did, and looked at things, and enjoyed looking at things... Such a miracle.

    One of the most magical things for her has been lights of all sorts, her first comprehension of cause and effect came when she would make a noise and we would turn on a light, and then turn it off again until she made the noise again. "Light" was one of her first signs, and one of her first and clearest words. And nothing gets her excited like Christmas lights. Even at 6 years old.

    Blessed to know that she knows you.

  5. Wow, Molly!! How beautiful. I have tears from reading this. Love that picture of you and her looking at each other. So precious!!