Through the Stillness

I’m Like a Bird…
I used to fly. No, not in an airplane. My actual body would float through the air. I would jump from the ground and land in trees. At night when everyone else was sleeping, I would fly up and down the stairs. Then I would wake up. Flying was what I dreamed about every single night. I was obsessed with flying and convinced that if I tried hard enough I could.

One afternoon when my brothers were playing cops and robbers or some boyish game, I set out on my mission. I found the two largest leaves from some plant in our yard, climbed on our picnic table, spread my wings (arms), took off, and BAMMMM, landed on my butt. That just made me more determined…

I was four and fearless, the youngest of three and a prissy tomboy bent on keeping up with my two brothers. I also had an insanely wild imagination, obviously. Maybe one day I’ll share more of my flying adventures, but for now this Mommy has a hungry Ollie to feed.
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February 7, 2013
Bad Santa
Yesterday I met a friend at a museum so we could take the kids to see Santa. Luke was so excited. He absolutely loves the museum and I do too. We arrived and immediately got in line. As a parent to young kids anytime I see a line, I cringe. Expecting any young child to wait patiently is unrealistic. I always expect and prepare for those moments of restlessness. This line was the best line I have ever seen. There was a guy with a guitar singing Christmas songs…it was almost magical. Luke and his friend danced with huge smiles, giggling and just had fun. The guitar man took turns and sang individually with each group and Luke even helped him play guitar. Once we got to Santa things changed fast. Luke hid behind something and I held his hand and gently brought him to Santa. Santa was not to thrilled to have to slow down and deal with a timid boy. Not one smile came from Santa. He simply directed me to sit on the arm of the chair with Luke on my lap. Luke sat there and stared at Santa. Santa did not look at Luke and the most importantly did not ask him what he wanted for Christmas. Instead Santa looked at me and told me Luke was a handful and he was going to get me Aspirin for Christmas. Santa proceeded to direct the helpers to snap the picture and asked how long the line was outside. When we went to leave he again said something about Luke being a handful. I would have been more understanding if Luke was kicking and screaming. Luke was quiet or I should say he was silent because nothing came out of his mouth. How exactly is timidity equate to being a handful?

The rest of the day Luke was sad and there was a major meltdown that I don’t even want to replay. Once we were home Luke took a much needed nap. I talked to my husband on the phone and we decided how we would handle it. When Luke woke up we talked. He said something about Santa not being nice and he was scared. I explained that the real Santa lives in the North Pole and he has helper Santas…unfortunately that one wasn’t the best. His response was, “Oh, I like the real Santa. Not the one at the museum.”

The Santa experience was a reminder of hard parenting is. You can’t always shelter them from the not so nice people. Magical moments turn ugly fast and that’s life and we can’t dwell on it. The most important thing is being there to help your kid get through it.
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December 12, 2012
Thanksgiving 2012
I truly am thankful for so many things in my life. Mostly, I am thankful for my little family. My husband and two little guys, Luke and Oliver, are all I need to feel complete. Yes I have others who I hold close to my heart, but my three guys are my world. I am so blessed! 🙂

I am also thankful that there were too many nurses so I don’t have to work today!
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November 22, 2012
Life Really is Precious
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!
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November 21, 2012

Family
Reopening the Wound
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.
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October 4, 2012

ocular albinism, parenting