Nature wasn't created just for those who can see it

I'm elated to have been invited to be a guest blogger on this inspiring blog.  My name is Jennifer, and our family and the Maqbool family have a common bond.  We both have young sons, both of whom are visually impaired due to the rare retina condition that has robbed their vision at birth.  With other LCA families that have come into our lives, there is a level of understanding where you don't find too often.  We look to our LCA families, as our second family, and for that I'm so grateful for the courage of Nomi and his family, and all they have gone through!

We have a 5 year old boy named Gavin (who was born with LCA), and a 10 year old son who was not, and is sighted.  Gavin's type of LCA (NMNAT1), has caused severe vision loss at birth.  He has never had any type of vision.  He can only detect bright sunlight, when outdoors.  He can't detect typical light indoors.  Like many LCA families, our child was the first instance in either of our families.  My son was the second person I ever met in my whole life, who was blind.

I was given the green light as far as topics, so I'm just going to share a moment that happened recently, that actually helped me gain a new perspective, and probably helped me to become a better mother to both of my children.

It may sound odd, but just this year, at the tender age of 5, has Gavin come to understand that he is 'blind'.  I use that word in single-quotes because Gavin's definition of it, is not the same as our understanding.  He does know that blind means he does things differently.  I wrote a few recent blog posts on our site about this. This year has definitely been a year of change and challenge and filled with inspiration for our family.  Most recently we have been asked and told the following by our son:

"Mom, am I blind?"
"I don't want to be blind.  I want to be alive."

Our family has learned many valuable lessons the past few years.  The one thing that stands out the most with what I have been taught as we journey through this world with both a blind son and a sighted son, is understanding and redefining my definition of the word beautiful.

I was taught a very valuable lesson one afternoon.  I was at my son's music school, where he attends with other blind children.  One of the students needed to get to the bus, so we left the indoor classroom, and walked outside, so I could help her find the gate.  As soon as I stepped out of the room, a cool breeze hit my face, I saw the bright blue sky peeking out amongst a sky full of billowy dark grey and white clouds.  It had just stopped raining, and a beautiful rainbow lingered in the distance.  In front of me were tall green trees, swaying in the wind, and a great big patch of dark green grass that looked like it went on forever.  The contrast of all these colors took my breath away.  In the same moment I took all this in, I thought to myself this is my kind of day, it's so beautiful, I wish she could see it.

I wish Gavin could see this.

Simultaneously, the young girl I was walking with said...

"Wow, isn't it gorgeous outside today!  I love this beautiful day."

She was also completely blind like my son.

I responded with a big lump in my throat, "It definitely is."

I have not shared this moment with anyone.  I felt like I didn't give her enough credit in that moment.  I began to wonder if I don't give my son enough credit with moments that I feel sad that he can't see certain things.  What is he feeling?  Is it still beautiful even though we don't see it the same?

Yes it is.

Pretty to my son, is a kind heart, a sweet soul.  Beauty to my son is listening to crickets, and cool, breezy days, and all kinds of music.  Cute to Gavin is the sound of a giggling toddler that makes him laugh.

I began to think what do people think of blindness, when they see Gavin?  Do they see a sad, lonely, isolated 5 year old when they see him walk down the street with his white cane?  Those words describe the complete opposite of who my son is.  That moment of the gorgeous, beautiful day, with my young blind friend next to me, helped me to turn the corner of a huge mountain I had been climbing the past 5 years.  The sadness at the depths of my soul, for my son, who cannot see the intangibles that our world has to offer us, still remain.  Beauty of nature gets me every time.  Those that follow our blog, know I talk often about this.  The stars that twinkle across a clear black sky.  A double rainbow that has no ending.  A sunset across a horizon sitting over a vast ocean.  Those are the things that get me as a mom.  Those along with a list of many other things, are what can sink my heart in a moment.  I wish and hope one day he can stand by me, and enjoy this beauty.  But, I have come to a place in my life, I know it will be ok if he never does. 

His life was written differently.  I have respect for that. 

I didn't before.  I just wanted to fix it.  I am his mom.

I also know I will always continue to fundraise and advocate for the opportunity for him to regain some vision one day.  I hope one day we can make a change and eye sight can be an option for my beautiful boy.  I want it to one day be an option for him, an option for everyone who has a blinding condition that wish they could see one day.  But, I feel differently about it now.  It doesn't have to happen for me to feel that my son will have a full life.  I know his life will be filled with magic, wonder, and a lasting love for all that nature and this wonderful world has to offer. He doesn't need eyesight for that to happen.  To be happy. To see beauty.

When we have people approach us and tell us about the job we are doing with trying to make a difference with research for LCA-NMNAT1, and how much of a difference we are doing to change our boys life.  I kindly respond with "No, he is changing ours."  And he has for the better.

The bigger picture this has done for my soul, is appreciating the way both my sons lives have been written.  The template for their life was made before I knew their existence.  As parents we have learned to nurture even more so their given talents, and their natural abilities and passion.  Whatever that may be.  We aren't in the drivers seat in their life.  We are simply the fuel to help them get to the destination they choose to reach!  What a momentous day that was, when I realized I was one with natures beauty, with a young girl who was blind by my side.  We are all in this together... nature was created not just for those who can see it. 

We can choose our adventure. 

And we can choose to be happy on it!

 

If you choose to follow Gavin's fun times, you can do so here.

 

Thank you to Basil for allowing me to be a part of your inspiring blog. I am grateful to be able to share this personal moment that changed me for the better, here on your website.  Your family occupies a big part of hope in my heart, because you were courageous enough to take a big step that is helping to change the lives of others who choose to go down your path. 

What a blessing you have been to us!