Friday, October 4, 2013

It's never OK and that is just Fine

When we were expecting our Abigail almost 4 years ago we pictured a perfect little baby with all her senses working in harmony. After her two big diagnosis that cause her blindness and growth issues it felt as if something was stolen. I didn't feel like something was stolen from me but rather from her. She would never see her own beautiful face, the many colors of our world, flowers, animals,  people and her family.

It was a couple months after she was diagnosed with Optic Nerve Hypoplasia and Septo Optic Dysplasia that the tears stopped and acceptance began. But I wasn't prepared for moments like a family outing to the aquarium. I had mixed feelings as I watched my, now 3, children react to the wonders of the ocean.

Bronco ran up to each exhibit in awe, pointing and gasping. Shelby pressed her face to the glass as her daddy held her up high. Abby sat in her stroller as we pushed her along. I tried describing what the rest of us were seeing but she was in her own world. My tears came without warning, the knot in my chest turned and turned until we left.

Our little girl was missing out and I was facing the fear I had years before. The fear of her missing out on  wonderful moments like our walk with the sea creatures. In reality we are the ones missing out not her.

She is "seeing" the world in an entirely different way. To Abigail everything is music. Whether it's a chair, patting her legs, the walls around our home, she's always on beat. She can't tell us what exactly she's drumming along with. But I imagine she's hearing our conversations, laughter, tapping of feet all in song.

We stepped outside to wait for the bus and were greeted by a bitter chilly wind. As I impatiently waited to get out of the cold, Abigail  lifted her head and let out loud giggles as it passed through her hair. I closed my eyes and after a minute I started to feel a gentle tickle along the tops of my ears and through my bangs. I  was so busy complaining about the wind and the chill that I didn't realize it was nature trying to play.

Having only been in school for 2 weeks now, our Abby bug is starting to use different letter  sounds and walked half way to the bus. And as I held her tight, gave her kisses and told her to have fun at school with her teacher Ms Linda her eyes lit up and she said "Linda, Liin-da!" and boarded the bus.

I had to fill out a form marking the number 1 for everything she does do and zero for what she doesn't do. As I was placing 1's in the majority of boxes for children of age 1 and watched the zeros pile up as I got closer to her age, I expected to be heartbroken once again. But all I could think was she WILL do those things. She will start talking, she will start walking on her own for longer periods of time, she will say her siblings names, play on the playground, read books with mom and enjoy feeding herself.

My fears of her missing out are valid concerns of any parent  with children with a disability. But holding onto those fears, harboring them in my heart will be what holds her back.

When Bronco was about 18 months old we were worried and scared. I'd call out his name and he wouldn't respond. He'd be rocking in chairs, in bed, in the car and went to his own world. There was a fear that our other baby would also have struggles in life that weren't apart of "the plan".  Disabled or not, I now know, that having struggles in life happen to every child. And those struggles only grow larger as they get older.

Our fears of Bronco being on the spectrum proved  to be just fears. It's  hard to be a parent of a child with special needs and be 100% honest. We say we are OK with it and we love our child/children just the way they are. The love part is true. Without a doubt in our hearts we love our Abigail. But we'll never be 100% OK with the struggles she's facing because of her disabilities. If we were truly 100% fine with our children's diagnosis, then parents of special needs children wouldn't have FEARS of their other babies having a disability.

And you know what??? THAT IS OK. It's OK to NOT be fine. I have no doubts my daughter and my other children will struggle and I hate the very idea. But because they have people who care, their father and me they will get through those trials.

Since Abigail we've had 2 (now 3) children. There is always the question of "Will this baby be born special?" We may have not been prepared if Bronco or Shelby had a disability, we may have even been heartbroken that another child would be sadly "different". However, we were ready to love. We were ready to accept our precious  babies in whatever manner Heavenly Father saw fit to deliver them to us.

Abigail's smile, contagious laughter, and her determination to learn and grow, let me know she won't be held down. I see great things in ALL of my children. And if our little boy is born like his sister, she is proof he'll do great things.

I just have to thank God for trusting us with his children. And giving us the opportunity to guard and protect one of his most precious angels. She has made us better parents and people. Mostly, she's given us a kind of happiness that only blossoms from a painful trial. Her disabilities are our storm  but Abigail is our rainbow.

Mrs Lee


  1. What a beautifully written post. You are amazing, LeAndra. Thank you for posting this link on Facebook so I could find your blog! I'm excited to get to know you better & learn from your example.

    1. Thanks Holly! I am just excited to get to know you and others. It was really intimidating moving to a new state and not knowing anyone. Thanks for including me!