Life is precious. How many times have we heard this? How many times do we forget this? I want to wake up every morning and remember that life really is precious. Oh the never ending to do list in my mind, running around picking up toys, and feeling the monotonous routine of being a mom…boom just like that I forgot. What’s precious? Oh yeah, life is.
It is sad that it takes something like my grandma dying to put things back in perspective. My grandma was one of my people. One of the few that I let in my little bubble. I always felt wanted around her and I believe I made her feel the same. All we gave each other was our time. A cup of coffee and her kitchen table was all we needed to spark up four hour long conversations and the occasional card game. Anytime I had to leave she would get a sad look in her eyes and tell me to hurry back. Wow I’ll never forget that look.
I started reading this book about simplifying your life. My grandma would have agreed with every word of this book. She was a simple lady and she was truly content. I want to apply this philosophy to my family’s life. I want to do this in memory of my grandma so she can look down on me and know that I learned something from her.
My husband and his mini me, Luke, thrive when life is simple. When things get too complicated or there is too much going on they both get overstimulated and shut down. Luke, although he is only three, is learning to vocalize his needs more and more. He doesn’t like when there is too much excitement and he tells me that sometimes he just wants to be home. I know now when he says that he is overstimulated and needs a break. One more reason why it is crucial for me to simplify our household.
So I now ask myself how in this day and age do I simplify our lives? I will start with our home. The clutter, the toys that have never been played with, and the junk that we have been holding on to thinking that maybe one day it will come to use. Looking around my basement right now…uh I have a long road ahead of me!
Sometimes there are triggers that reopen the wounds of hurt. Those things in life that we can not change and are hard to accept. Yesterday I received a letter that I requested from Luke’s Ophthalmologist so he can be evaluated by the school district. You would think since I requested it, the letter shouldn’t have punched me in the stomach as hard as it did. It was the words, “low vision services certainly for when he is in school.” That is exactly what I expected it to say, but it felt like the first time I heard the words “Luke has Ocular Albinism.”
This morning as I walked through the door after dropping Luke off to preschool, the familiar tears streamed down my face. I have these moments where I just can’t hold it together. I try to stay strong for my husband and kids. Let me say, I am the glue that holds the family together. My husband is the best and I cannot imagine my life without him but lets face it––women are the glue, usually. I hate whining about my problems because I don’t want to be a bother, but I realize I need an outlet. So here I am starting a blog. I figure if you are bothered by my problems you have the choice not to read them.
I guess I should explain what Ocular albinism is. It is a genetic disease commonly called being an Albino. Luke has a form that mostly effects the eyes. Although his hair is lighter than my husband’s and mine you would never think he is an Albino. Which by the way I now hate that term. Its just hard to explain it any other way. Most people don’t realize that when there is a lack of pigment the eyes can’t develop properly. It causes nystagmus where the eyes are in constant motion. It also can cause strabismus which is a lazy eye, severe light sensitivity, difficulty with depth perception, and focusing. Luke has all of those. His visual acuity is 20:125. That means that what I can see at 125 feet, Luke can see at 20 feet. When I wear glasses my sight is corrected so I can see 20:20. Luke wears glasses to improve his sight but he will never see 20:20. As of right now we are not sure how improved his vision is. We will know more at his next appointment and when he gets older.
I have no doubt that Luke will lead a happy successful life. We just may have more struggle to get him there.