Friday, April 17, 2015

Orientation and Mobility

My little Charlie is amazing. He plays and runs and acts just like a normal little boy. Because he is just a normal little boy. Most of the time I actually forget that he has Albinism. It catches me off-guard when we go out and people stare at him, or comment on his hair. To me, he is just Charlie. My sweet little rhinoceros.

Sometimes, though, it becomes painfully apparent that he has a vision impairment. Especially when he is in an unfamiliar environment. The biggest problem with his vision is his lack of depth perception. The first time he came to our new home, for example, he would get on his hands and knees when transitioning from the carpet to the tile, because he couldn't tell if there was a drop or not. All he could see was that there was a change. Another problem is when we are outside. He loves being outside and he runs and plays right alongside Caroline. He has, however, fallen off of the curb a few times. He has difficulty seeing the differentiation between the raised sidewalk and the lower part of the cement.

Last week we were playing outdoors and as Caroline and I walked on ahead, I turned and watched him on the sidewalk. He slowly approached the curb, got down on his hands and knees, and crawled down onto the cement beneath. Then he faced the change from the cement to the pavement. My heart burst into pieces as I watched him put his hands back down on the cement and hesitantly felt around with his foot of the pavement. He finally got to the point where he was confident that he could step there, and then he stood up and walked to join his sister and me.

A few days later we were outside building a snowman. I set both the kids out in the snow and then I joined them. Caroline soon started moving around and helping me pack the snow. But Charlie didn't budge. He just stood there quietly, both feet deep in the snow, and watched. After about 10 minutes he started to cry, so I picked him up and walked around a little bit, wondering why he wasn't joining us in building the snowman. And then I realized that he couldn't tell where the ground was. So I set him back down and I held both of his hands and I walked alongside him as he took his first few unsure steps. He was very hesitant at first, but soon he started enjoying himself and I was eventually able to hold only one of his hands while he walked circles in the snow.

It hurts to think that he has to do that. I tear up just thinking of the challenges he faces now and will continue to face throughout his life. But I am equally amazed by him. That he does it. That he doesn't just stay inside because it's easier. That he doesn't just stay where he knows he is safe. He is a fighter and a champion and I couldn't be more proud. I know he will do great things, regardless of his condition.

Next month Charlie is going to be meeting with a new specialist. Her official title is "Orientation and Mobility Specialist," but people refer to her as the "white cane lady." She is going to teach Charlie how to use a white cane when he is outside, so he can feel when the ground changes from up to down. I have mixed emotions about him using a white cane. For the most part, I am anxious for him to learn anything that will help him maneuver and that will help prevent falls. Partly, though, I am hesitant for him to have something that will make him even more different. We will see, when he gets older, whether he chooses to use the cane or not; but for now I am trying to focus on all of the good that can come from it.

Wish us luck!

To Be Like Her


A few years ago I was sitting at a table with some friends, listening to their sometimes funny and other times terrifying stories of things their "crazy" moms had done. Most of them had less than perfect relationships with their mothers. As I sat their listening, I began to smile thinking of my own mom. When asked what she was like, all I could say was that she is perfect. Amazing. Hilarious. Supportive. Heaven-sent.

If I can be half the mother that my mom is, I will count my life a huge success. I learn so much about how to raise my children from her. So often I find myself frustrated with not knowing how to teach one of my children something, and then I watch my mom and she answers my frustrations with perfect teaching and discipline. She is beautiful, elegant and graceful. Intelligent, loving and kind. And, like I said before, she is absolutely hilarious. I mean I have found myself rolling on the ground in fits of laughter from the things she says and does more times than I can remember.

One of my favorite memories of my mom is from when I was an early teen. My parents always made an effort to gather our family together in the evenings for family prayer. We had a routine that the person who had prayed the night before would get to pick a number, and whoever guessed closest to that number would say the prayer that night. My dad, who without fail picked the number 17 every single time, was notorious for saying exceptionally long prayers. So long that our knees would ache from kneeling by the time he finished. On this particular night, my mom had been the one who got to pick the number since she had prayed the previous night. She started with a "pick a number between 1 and 50." We all stated our chosen numbers out loud, and my dad predictably stated that his number was 17. Apparently my mom had momentarily forgotten his tendency, and she reluctantly admitted that he was closest to her chosen number, so he would get to pray that night. We all groaned and gave my dad a hard time, begging for a short prayer so we could all go to bed. Of course that only made it worse. The prayer went on, and on, and on. After what felt like a solid 15 minutes, my mom couldn't take it anymore. She suddenly interrupted my dad in the middle of his prayer with a muttered "I should have lied." We were all so taken off guard, including my dad, that we burst into laughter that lasted a long, long time. In fact, I don't think the prayer was ever finished.

My mom taught me how to be silly. How to laugh at myself. She taught me how to clean. She taught me how to work. She taught me to love the Lord. How to serve. How to be good and how to do good. When I think of goodness and righteousness, I think of my mom. And I also think of how blessed I am to have been raised by her.

I love that we have Mother's Day to honor all of the amazing women in our lives. I love my mom and I want her to know that. Somehow, though, I find that I am never able to adequately express my love and gratitude for her. Flowers, gifts, and cards are never enough to do the job. Maybe that's why Mother's Day comes around every year, though. As a reminder. So incredible women every where, including my mom, will never forget the powerful influence for good that they've had on all of those around them.

I feel so blessed to have an amazing mother, a wonderful mother-in-law, two incredible grandmothers (both of whom are watching over me from above), all of my awesome sisters and sister-in-law, and so many other sweet friends as women and mothers who have taught me so much. I learn from you all each and every day. Sometimes when I feel down, discouraged and overwhelmed, I look to your examples and it gives me strength to keep on keepin' on. So please know that you are loved and appreciated beyond measure. Especially you, mom. I love you.

This Mother's Day I'm also overwhelmed with gratitude that I am so blessed with my 3 beautiful angels. Let's be honest, sometimes I want to rip my hair out and throw a little tantrum myself. Having 3 kids under 2 is no joke. But 3 years ago when we were on the middle of our battle with infertility, I could never have imagined how full of love, laughter and craziness my life would be. Being a mother is the hardest fun I've ever had. And for that I am grateful.

And so once again, to women everywhere, Happy Mother's Day.