Light Sensitivity

I think, for me, the light sensitivity issues my girls have, is one of the hardest aspects of this journey with them.  My other children love to be outdoors and they just don't.  It hurts their eyes to the point that they just leave them closed.  I once heard it described like this. 

Imagine that initial reaction your eyes have when you're coming out of a dark movie theatre on a sunny day.  That's what my girls see all the time.  With no reprieve.  There eyes are on constant overload from too much light.  The picture below doesn't do that description justice, but I this picture when we first learned of our oldest's diagnosis.  It helped me understand just how difficult things can be for them.

I can't imagine wanting to spend time outside if this is what I saw either.   We try very hard to have them spend some time outdoors after dusk, when it is much easier for them to see, but sometimes I feel like we live indoors. The older Baby Sunshine gets the more she'll get used to it. That's how it was with Princess Cuddles. Now, with a little coaxing, she'll go outside during the day.  Yes, sunglasses and a hat help, but only if you can get your one year old to wear them!

Perspective

It's amazing how a few years can totally change how you see things.  I have been doing a lot of reflecting lately, on a lot of levels.  But much of it has been about my youngest, who is now the second child we have, that was born with low vision.  It didn't seem quite as devastating the second time around, but most of all, now that I'm not "new" to this, I'm not wrought with feelings about what she will or won't be able to see, etc.  The most recent was when I found an old pair of glasses that used to belong to Princess Cuddles. They were definately too big for Princess Sunshine, but I wanted to see if they would help her, so I put them on.  I was astounded at her reaction.  It was like she was opening her eyes for the first time.  They were big with wonder, almost like she was really seeing each of us for the first time.  At that point hubby & I both realized she'd probably be in glasses sooner rather than later.  But I was equally shocked at my reaction. I was happy! This was a complete 180 from 7 years ago when Princess Cuddles got them.  Back then, I wanted her to be able to see without them, not to mention, I was afraid people would tease her. This time, the joy was because I KNEW how much they could help her. 

This whole ordeal got me thinking, and I started comparing how I see things now, to how I looked at them 5 years ago, 10 years ago, etc.  It's your perspective on things.  So, I decided to look it up.  This is the definition I was looking for.

Perspective - the state of one's ideas, the facts know to one, etc.

 

It's the facts that I now know that have changes my perspective.  I know how much help they can be, and I know I want her to have the best chance of seeing that she can.  What other people think just doesn't matter anymore. Long story short(er), we took her and they did give her a prescription for glasses. She's a little on the younge side, and they probably would have waited another 6 months or so, if it hadn't been for the reaction she had to the other ones.  Now all we need is for her to like them!

Anyone have any ideas on how to get a one year old to leave them on??? My other daughter just did. Never touched them. Princess Sunshine will only leave them on when she's outside. She's super light sensitive so the tinting makes her realize they help.

On a side note, I haven't been very active with this blog lately.  That's another thing I've been pondering.  I almost closed it down, but I really felt God led me to start it, so I'll work on keeping better tabs on it :P  I've been feeling like I'm supposed to do some blogging about raising children with low vision, so bear with me if you can't relate. Those won't be my only posts.

My Conversation With God

God has given me words of encouragement and spoken to me through different people, or scriptures, over the years.  There are even times I just know He has spoken to me even though I didn't hear His voice.  I can only count on one hand the number of times where I actually heard His audible voice like He was right there next to me.  I haven't shared this story with many people, but it has been weighing on my heart that someone may need to hear it.

In March of 2003 I gave birth to my 3rd child.  She was called a "toehead" more times than I can count.  But by the time she was 4 months old we started to realize it was something more.  Soon after she was diagnosed with albinism, which is a genetic condition where you have little or no pigment in your eyes, skin, or hair. 

My disclaimer - While most people know the term "albino" I have a hard time with this word.  This is my own personal opinion but, I feel, 'albinism' refers to the condition, whereas 'albino' refers to the person.  She's my daughter first, not an albino.  Ok, back to my story.....

Within that first year, I had a dream that God healed her.  I know, without a doubt, that someday He will.  Until then I pray, and wait.  I'm learning as I go, but on one specific occasion God left me speachless.  To this day I'm still speachless when I think of the conversation I had with Him.

I don't remember exactly how old my daughter was, but I think she was about 1 1/2 (so this was about 6 years ago).  I remember sitting at my kitchen table praying, crying out to God to heal her.  I wanted her to be able to see the deer in our backyard, or the butterflies, or any number of other things she can't see.  Part of the conversation left me awestruck, and I still remember the words exactly. 

This is what I told God.....

"You don't understand!  A mother just wants to make things better for their children!"

To which God responded.....

"She's mine too, and I know what I'm doing."

My jaw about fell to the ground. My heart started to race.  I didn't have any response.  I was speachless.  My heart still races when I think of that short, but direct conversation.  My heart still breaks, and I could still cry, over the things she can't see.  But I now have a peace about it that I didn't have that first year.  I don't know why I never thought of her as HIS daughter too.  Never dawned on me that He had a plan in all this.  That He might actually use her/this as a testimony.  So I wait.  And I still pray.  But I believe God's plan is so much greater than I can even fathom.