Through the Stillness

Light sensitivity is one of the many symptoms that Ocular Albinism brings. This is the thing (so far) that has caused him the most pain and difficulty. Luke has adapted well to the low visual acuity, to the point that many do not realize the he has trouble seeing…the sun he has not adapted to. The sun’s strong and persistent rays will cause him much pain in life. I cannot and should not always shield him from it. I keep thinking how powerless we are––the sun is mighty and the sun will always be here. But I/we do not have to feel powerless.

It hit me this morning…the world does not adapt to us, we have to adapt to the world. Luke should not be afraid to walk in the sun’s light. Yes he will have to take precautions but he can beat the sun. Really, life is like the sun––people are like the sun in that we all have the power to bring warmth and we have the power to bring pain. However you keep going. You grab your hat and when the sun beams are even stronger you grab your sunglasses. Then you look up to the sun and are proud that you didn’t hide in the shade.

That is my new perspective, that is what I will show Luke. I will hold his hand and walk into the light. Then when he gets older I will loosen my grip and one day (many years from now) I will let go….but I will always have my hand ready to grab onto when he needs me again.

Last night, I grudgingly went to to a women’s group from the church I recently started to go to. I was tired and lazy…my bed sounded better than braving the cold. Not to mention, being around people that I don’t know very well is not my idea of fun. I went because I want to get to know people around here. It turned out to be just what I needed…

The coffee shop we met up at had a band playing and so we ended up walking down to the Subway and ordering a drink and cookies. The last meeting was cancelled because of the lovely snow and the first meeting was at a coffee shop that closed a half hour after we got there. We joked about our trouble of finding a place to meet up and then settled in for the real stuff. We discussed contentment and I realized that I feel pretty content in my life. My life has struggles but I am happy and blessed regardless. The one thing I do struggle with and would become even more content is if I can focus on the people who are there for me, not the ones who are not. I am really sensitive in this aspect. I believe I am not alone in this battle.

I am blessed to have people who are sincerely there for me. Ones who listen, even when they disagree. When they do disagree, they aren’t dismissive about it. That is what it means to be there for people. Everyone has their own views but you have to be able to accept that. To accept others sensitivities and to know we all have different boundaries and different limits. My point of all this is, I need to let go and accept that certain people are not there for me. The reason why is not my business and I should not waste energy trying to figure it out. Instead––I need to cherish the people who love and accept me. The end.

Matt and I volunteered to host my father in law’s 60th birthday party. Luke loves parties. When he found out the party was going to be at our house, he was excited to plan it. Decorations, a cake and games were Luke’s top priority. We made a trip to the craft store for the supplies and the compromising began. It turned into a great learning experience. Luke wanted all purple decorations with soccer balls and other various little kid favors. I explained that the party was for Papa and needed to reflect what Papa would like. I know that Papa would have liked anything that Luke did but I used this time to show Luke how to do things for others and how to think of others and their likes. We decided on more grown up colors–black, white and yellow and went with a light version of the mustache fad.

Since a game was so important to Luke, we decided on a pin the bow tie on the stick man. I kept it simple with a yellow poster board and a drawn on stickman. I made some paper bow ties and that was it…Luke was happy, I was happy and proud of our compromises. Luke has a love for making things for people so he made his own card and painted a birdhouse. He took his time and made sure it was perfect. He even picked colors he thought Papa would like, blue and silver.

Yesterday was the party and I must say we really put a lot of effort into making it a nice day. It was a small gathering (my favorite). Luke was so proud of his hard work. To watch Luke smile like he did yesterday…to watch his Papa smile like he did yesterday made it all worth it.

Those who know me know that I have patience, lots of patience. I am far from easily frazzled. Yesterday though, I cried. My husband pulled me on his lap and I cried like a baby. Why?

We had to wake up early and be out of the house at 7:30 to make it to Luke’s eye appointment. For some reason I thought his appointment was in the afternoon so when I realized I was wrong, I was not too happy. Now I know that isn’t a big deal, but anxiety levels rise a little when we go see Dr. Roarty…like I said in my post yesterday, it isn’t a fun day. Matt had to get ready for work and…well I am the mom so I had to get myself and the boys ready. Oliver was extra needy and would not stop climbing on me. I did not even have five minutes to get ready. I looked and felt like a mess. We made it out of the house on time and the drive was ok until we were pulling into the parking lot and I hear the noise of Oliver puking. Sweet. I cleaned him up enough to make it into the building and then did a better job in the bathroom. Luckily he did not throw up during Luke’s appointment and we made it home. You can read my post from yesterday for details about the actual appointment.

We get back home and Oliver was grumpy because he was sick. Luke was grumpy, I was grumpy––Matt was grumpy and had to go to work. There was too much grumpiness in the air. Oliver just kept making messes. I don’t know how he just kept getting stinkier and dirtier as the day went on. I was getting ready to put him in the bathtub as Luke handed me his glasses, his broken glasses. Sweet. The eyeglass place is by our old house, which is not close––but they have all our info and if I had to order him a new frames and blah blah––I got the boys ready and drove down (hoping and praying the entire time that Oliver would not get sick again). He did not. They had frames at the store and popped in his lenses (free of charge). We made it back home around 6pm and both boys were starving, whiny…Oliver was crying and wanting me to hold him but I had to make them dinner. I was beyond frazzled at that point. I fed them and they were happier. But then, I got a phone call from Matt saying he was running late. Any other day it would have been fine, but I was planning on starting a new tap class. I didn’t get to go. Matt felt terrible, I felt more terrible.

The day ended in tears. It was the first time I have been that frazzled as a parent. At least I can laugh about it today.

I realize I have blogged about these feelings before––but––it doesn’t seem to get any easier going to the eye doctor. I see his face and I am taken back to the moment, to the day that I first heard the words Ocular Albinism. The wise old saying that actions speak louder than words did not apply. It didn’t matter if he was nice (and he was). It didn’t matter how sincere he was when he said he was sorry (which he really was). He could have smacked me across the face and it wouldn’t have mattered. It was only the words.

Dr. Roarty doesn’t bring up the driving issue at every visit but today he did. I think he mentions it to prepare the parents. As of right now, he could not drive with the visual acuity he has. Dr. Roarty’s hope is that his eyes could improve enough to be able to drive…even if it is a restricted license…there is hope. The chance of him not being able to drive is a hard one. I try not to think about it because Luke is only four but I’ll just say that when it is discussed during the appointment, my day is shot. There is no cheering me up.

A few months ago, Luke started scrunching up his left eye…an every once in a while occurrence became more frequent. I asked him why and he said it was so he could see better. Dr. Roarty explained that around this age you can notice more things, more things they find to compensate…to help with the nystagmus (movement of the eyes). An eye patch was prescribed to wear once a day for thirty minutes. The patch is placed over his good eye in hopes it will strengthen his bad eye. If the patch doesn’t work there is the possibility of needing eye surgery to fix the muscles.

Luke’s visual acuity is 20/150 in one eye and 20/125 in the other. With his glasses on his vision is improved but not corrected. That seems to be the thing that confuses people. Yes, even with his glasses he has bad vision…low vision is what it is called. With as bad as Luke’s vision is he does an amazing job. I hear all the time that people do not see how he has trouble seeing. All I can say is that he is a strong little person to compensate the way he does and I am so proud of him because of it.

I was knee deep in boxes…my energy gone and my patience dangling by a thread. I could not wrap my head around the fact that we accumulated so much crap in the short time (three years) that we lived in this house. I was physically and mentally incapable of packing anything else, so I sat on the cold floor and just existed for a few moments. You know the feeling where your brain hurts? I was beyond that. It was as if I could feel my brain pulsating, trying to tell me it needed rest…it needed a long overdue nap. Now I know it seems like I am being overly dramatic, maybe I am, but at that moment I was done. Over it completely. I probably brought all of it on myself. I start something and feel panicked when I don’t finish. In the back of my mind I knew I had time. I should have stopped packing hours ago. I was past my limit.

I went to bed early, actually I crashed. I woke up the next morning around six am, brewed my coffee, and sat on the couch. Warm coffee in hand and deep in thought, I realized I was going about our move all wrong, obviously. Far from an epiphany but the light bulb definitely clicked on, I need to relax and enjoy this process. Since we found our new house––I can not stress enough––everything has fallen into place…way too easily. It is absurd how easy it has been. We put in an offer and they accepted it without a counter offer. We, at the last minute decided to try to sell the house we were living in. It went up and the next day there was an offer, above asking price. We accepted the offer, the inspection and appraisal came back good. Then the closing date was scheduled for the day after we would be in our new home. Really? Why was I being such a brat? I truly should have embraced my inner creep and whistled while I packed.

When my husband woke up, I attacked him. “Matt, we have been going about this all wrong. Look how easy this has been for us. We are way too blessed. Why are we so stressed out? Lets enjoy this time.” He pulled me in for a hug and agreed. The remainder of the move went well. There were a few times after that one of us got stressed, but we simply reminded each other to relax. We are now mostly settled in and I love our new house.

I unzipped the case to my great grandma’s bible––something I don’t do often enough. Out fell old programs from her church, printouts of bible verses, a booklet, and even an unused tissue. I cannot help but wonder if the tissue was from the last church service she attended. I can see it in her old but strong hand, listening to the church sermon. I imagine she always had a tissue when she sat in the wooden pew of her church––for those moments that she was moved to tears. My great grandma was undoubtably a godly women.

Today, the reason I pulled out the bible was for guidance. I felt a nagging in me and so I prayed. Praying wasn’t enough, I needed more. I walked upstairs hoping that the bible was not packed away just yet. There it sat on my shelf. I grabbed the bible, hugged it as close to my heart as I could, and walked down the stairs and sat on my couch. Like I mentioned, out fell her spiritual belongings and I put them aside. I opened to the pages she had bookmarked and searched. I found nothing and the nagging only got stronger. I sat deep in thought. You see, I am always wanting to be a better mom and our house is chaotic with this move…and I am tired, mentally tired. When I get like this, I get down on myself. I never want to stop trying to be a better parent. I never want to feel complacent. I never want to give up on my kids. I without thinking––picked up my great grandma’s things and starting looking through them. There was a booklet named Queen of Hearts: The role of Today’s Mom…copyright 1993. Not exactly current, eh? I decided to read it anyway. It was based on Proverbs 31. If you don’t know Proverbs 31––it is about being a virtuous women. The booklet describes how to realistically apply it into your life. The author explained that there is no perfect mom. She gave great examples to follow, even when you get discouraged. Needless to say, the nagging left as I read the words. I found what I needed.

Now, I know that I have had a sort of tunnel vision lately…this focus on religion may be more than slightly irritating to some reading my blog. I may seem naive and just plain dumb to those who oppose my beliefs. Here are my thoughts on all of this…

What if I am wrong?
What if there is no God?
No heaven?
No hell?
All this time I have “wasted” on believing something that doesn’t have the science to back it up…
What if the day I die, I am just gone?

But then––what if I am right?
What if God is real?
My faith, my belief beyond all the doubt thrown at me was not in vain.
The day I die…I go to heaven.
On jugement day, I know my sins have been forgiven.

You see, if I am wrong––I’ll just die and I’ll never know that I was wrong.
I will take my chances and continue to believe in God.
I will continue to gather strength in praying and going to church.
I will continue to have faith and let go of control, knowing that God will handle things.

Believing in God, makes me happier.
It makes me want to be a better person.
It gives me the strength to get through the hard times.
It gives me more to be thankful for.

Simply put, the benefits of believing––outweigh the risk of not.

Today is the day. We finally get the keys to our new house. We closed in December but the previous owners needed extra time to close and get into their new place. It has been pure torture to know that the place is ours––but not really––because someone else still lives there. Every day we remain in our old house, the walls close in a little more. I guess the crazy snow does not help with this madness building up in all of us. I swear to gosh my kids have never been so stir crazy.

Tomorrow our painter starts his work. I pretty much have the colors picked out. I am a bit anxious of this part because you never truly know what the colors will look like until the paint on the walls. We are having the ducts cleaned and a radar mitigation system put in. After that we can move in. I love the house and cannot wait to make it our own. I will have to post some before and after pictures.

Luke starts his new school tomorrow and I pray all goes well with that. He has been sad all week over the snow days, he cannot wait to start his new school. He did do a trial run there and it went great. The teacher said it was as if he had been part of the classroom all along. So I think it was a wise choice to go with another montessori. The classroom and curriculum is is almost identical to his old school. The actual school day is a couple hours longer than what he is used to, that will be his biggest adjustment.

It really is an exciting time in our lives. There will be a lot of changes but I have no problem with change. I am actually excited for all the new things to come. Luke is a creature of habit, as most four year olds are––but I have been slowly introducing and getting him ready. I try not to talk (about all the change) too much so he doesn’t get overwhelmed. We shall see how it all plays out. Oliver is like me and I believe (hope) he adapts well. He is not in school yet though, he has less to adapt to––plus he’s younger.

Well that about sums up what is going on in our lives. I know this is a boring post to read but you’ll get over it, maybe.

I strive to keep light not darkness in my blog. In my life (as well) choosing to see positive keeps me going. That is the only part of my last blog post that I wish to share and so I erased the rest. I am not perfect––nor do I want to portray that I am. When I look back through my blog which portrays my life to an extent, I want to remember what really mattered. I do not want to recall a moment or moments of negative, although that is a part of me, I choose to move on from my rants. I choose to vent and then see the good. It is not that my last post was not how I feel. The thoughts released still ring true. The problem is that there are things about others that are and will always be on them…not me. If something irks me, all I can do is choose not to do it myself. I can complain all I want about how unfair or wrong it is but it isn’t my issue. So why dwell? I see no point.

This year has strengthened me more than any other year. I am content. Truly content. I am confident with just being me. There will always be people who misunderstand me and I am finally ok with that. I am sarcastic, goofy, sometimes too kind, sometimes not kind enough, calm but energetic, introverted but not shy (meaning not insecure), stubborn, creative, and so much more. I love every part of me. I pray that I continue to nurture all parts of me and continue to grow into a better me.

My spiritual and my religious side has overtaken my life and I could not be happier. It is something that was always in my heart but was, I don’t want to say dead because it never really was gone, dormant maybe. Better yet, it was weakened by my hard headedness. Yes, that is it. I know many are touchy and I try not to push my views on people, but anymore, this is who I am and I will no longer hide it or be ashamed.

My kids will not stop growing. The days go entirely way too fast. Everyday they learn new things. They are in many ways polar opposites, which goes to show how everyone is made to be different. I want to continue to not conform into some cookie cutting parenting style. We, as a family, will make our own way––hopefully skipping, not trudging, through most of it. We will have our own traditions and try to have fun along the way. I want to cherish, nurture, and guide Luke and Oliver to think for themselves and love who they are as unique individuals.

I wish you a Happy New Year and pray for peace and fulfillment in 2014.

The other day, Luke looked out the window and said, “Mommy, it’s my favorite kind of day. The clouds are covering the sun so my eyes won’t hurt.” I smiled and told him that I too loved the clouds covering the sun. I love sunshine, the brighter the better for me, but I also love whatever makes him more comfortable. His comment, so simple, got me thinking about heaven. Think about this for a minute. Heaven will be and feel like everything that brings comfort, happiness, and all else good. For Luke it will be like light that doesn’t hurt his eyes. For me it will be like warmth, to never feel cold again. It will feel like the peace of holding one of my boys, the joy of hearing my boys giggle, the feeling I get when my eyes meet my husband’s during an inside joke, the magic of getting lost in a good book, and the relief of a lazy Sunday. All of these (plus so much more) all at once, all the time––for all of eternity. All I can say is wow, I truly can not fathom.