Feb 3, 2011

... and it breaks my heart

Life got very busy around here the past few days (yes, more than normal) and I'm just beginning to resurface into the "regular" madness/chaos of my life.  But I must update you on something that happened Monday (January 31).

So the geneticist wanted us to see a Neuro Ophthalmologist.  Many kids with leukodystrophy have eye conditions and deteriorating eyesight.  But if you catch it early enough, there's stuff that can be done.  Secondly, there is a way to see through the eye into the brain.  (Pretty cool, huh?)  

Monday was our visit.  Manny was amazing.  He followed the light, looked at the tech, played along with all her games, etc.  She noted just how visually aware he is.  (I agree, more on that in a second.)  She noticed the head tilt (which is often a sign of mismatched eye strength).  But I told her in his case it was more likely due to the first 8 months where he wasn't moved or held much so he was "stuck" in that position.

From birth until just over 10 months of age, he laid on his back.  Unable to move anything but his eyes.  No hands, no arms, no neck movement ... nothing.  He also could barely feel anything if someone touched him.  So the only way information and stimulation came into his world was through his eyes.  No wonder he is exceptionally visually aware.  Like a blind person who often becomes more alert in his hearing.

He passed the first test with flying colors!

Next came the drops.  The first set of drops went in with just a few tears.  (Numbing drops).  Then came the second set of drops (to dilate so they can see in the eyes).  He was less happy but still bounced right back from it.

Unfortunately, his eyes didn't want to dilate.   (Jacob goes to this same doctor and they often have to do the numbing drops 1 time and the dilation drops 2 times.)

Poor Manny had to have 3 sets of numbing drops and 4 sets of dilation drops before they even started to budge!  He was NOT NOT happy.

I comforted him.  We sang.  We played in the very dark room.  He would be fine when they left the room but he started to SCREAM when the door would open.

And it broke my heart.

Meanwhile, in the room next door, there was a boy.  Probably 10 years old.  He had some kind of obvious delays (Perhaps Prader-Willi or something similar).  We'd met him in the lobby.  Now he was through the wall from us.  I noticed how they tried nicely to work with him to do the exam.  But by the middle, he was flailing himself in the middle of the floor about to hurt himself and they had to restrain him.  He is a VERY large child so it was difficult.  The mother says, "Keep going.  He does this often."  (And this is NOT judgment, I believe a she was a good mother who knew when to push and when to let something slide.  Just like all of us make our kids take bad tasting meds so they will get better ... we just push through it.)

But it broke my heart.

Meanwhile, the person who would come into our room just got a loud cry and eyes that were hard to pry open.  Manny couldn't even fight her back.  She commented how it must not be that bad since he wasn't fighting her.   I told her flatly, "He can't".

And that broke my heart. I wish my little guy could push back and resist sometimes to let people know just how much he dislikes something.  (sigh)

As I sat there, I realized we were headed to do another genetic blood test for him right after that.  And I know he is a very "difficult stick" meaning they often have to poke around a lot with the needle, often having to stick him many many times.

The whole time *I* get to be the one to hold him down, to restrain him.  And honestly, it doesn't take much.  (Like at the blood test, I just held his other hand like we were holding hands.)

Eventually, the Doctor comes in.  Now he has the pleasure of getting to see Manny at his most distressed.  But the whole reason we are there is to see how his eyes are.  He literally looked in each eye for about 20 seconds total.   And declared some great news.  "He doesn't need glasses.  His optic nerve is normal.  This exam is completely normal."  I was relieved.  This is amazing news!  We set an appointment for 1 year from now.

But I honestly found it hard to rejoice at that moment.  Afterall, I subjected him to some pretty intense torture against his will.  And I was headed to some more.

Sure enough, the tech had a very hard time with the blood draw.  The baby looked at me like, "Why do you let these people do this to me?!?!"

And it broke my heart.

As I drove away, my heart was so heavy.  Yes the news was good (and that's all I posted about on Facebook).  But what am I doing to my baby?  Am I teaching him to mistrust me?  That I don't protect him from pain?  That I don't protect him from strangers?  Worst of all, I sit there and do NOTHING as I let them do this to him.  And then what about the mixed signal of me picking him up after and comforting him.  I just wonder what is going on in his little brain, psyche and soul.

I'm his mother and it's my job to protect him.  Yet I don't on a regular basis.

And yes, I tell myself it's for his own good, that he needs these things done, blah blah blah.  I'm just saying, I want to be his protector.  And due to the nature of my job ... Sometimes I don't.

And that breaks my heart.


  1. I so feel you on all of that. Aydyn had a terrible day of mommy enforced tests yesterday, 3 different floors of the children's hospital, not including check in and check out. My heart breaks too, I feel helpless even though I too know it is for his best. You are a good mommy, a loving mommy and my heart is with you!

  2. <<>>

    I wonder if this breaks God's heart, as well. And in, He allows hard and bad things to happen to His beloved children. Who hasn't had pain? Who hasn't wondered if God was near? Who hasn't questioned WHY, when He could prevent it, did He let this thing happen to us??

    Truth is that hard things happen to us and like you, with Manny, He is RIGHT THERE as they happen. Holding, comforting, heart breaking, as we struggle and cry and question.

    You are a wonderful Mom, Bethie. And God is a wonderful God. Your ways are mysterious to Manny. God's ways mystify us. But, as our faith and experience grows though trials and sorrow, we believe God's goodness, because He can be trusted. I believe Manny knows you can be trusted. He certainly knows you are always there. What a gift you are to one another. <3

  3. I agree, Beth. It's the worst thing to be part of our children's suffering. But maybe this will make you feel better. Last night, Delilah was talking about getting her shots at the doctor. (she actually needs more, but keep putting it off). She went through the whole story or what happened that day and then she said, "and then you picked me up and made me feel better". She didn't talk about me holding her down. She didn't "feel" as if I had betrayed her. She just knew I was there with her and in the end I made her feel better. I hope you feel better. :)

  4. Beth - I'm sorry. I get it. How to be the protective mom and yet find out what needs to be known? Such a hard, thin tightrope to walk. The Lord knows too and I fully believe Manny does. HUGS!

  5. I totally understand. All the things that I've had to make Sarah submit to have just broken my heart over and over. I'd rather do without this part of parenting and Sarah doesn't have the complex medical needs that Manny does.