Through the Stillness

Through his eyes, he knew no difference. He was born with poor vision.

Through his eyes, he was a good soccer player and was excited to be on a team. That was until he played with other kids and realized he had a hard time seeing.

Through my eyes, I will never truly know what it is like to see through his eyes and that will always trouble me.

Through my eyes he is an amazing, smart, funny, thoughtful, and beautiful kid. I can only pray when he looks at his reflection that he sees the same.

The other day at soccer practice Luke was running and bumped heads with his friend. They were both hurt and crying. The collide must have been bad. The coach realized Luke’s glasses broke and sent him over to see me. Luke climbed on my lap and once I took his glasses off I realized the cracked frame cut his face as well.

Things can happen in sports to any kid, but this time it was because Luke couldn’t see well enough. Matt had noticed in previous practices and games that Luke had bumped into kids from not seeing well. Also, after Luke’s last game he cried after he told me he had a hard time seeing on the field. We told Luke he could take a break and he did last week. This week he said he wanted to go back. After what happened it isn’t surprising he doesn’t want to go back again.

I hope Luke doesn’t lose his eagerness to try new things now that he is older and realizes some things are harder for him. He has a natural ease when it comes to trying things. He doesn’t cling to me in fear––he just goes for it. I admire that in him. I believe with an attitude like his he can do amazing things in life. I will never stop encouraging him, but when things happen it is heartbreaking.

The most important thing I can show him from this is that sometimes it is ok to quit. Whoa, what a hard thing to think of these days. It is ok to quit sometimes. It takes a strong person to honor their limits. It doesn’t make him weak. There are countless other things he can do well.

I can tell him everyone has things in life that they have a hard time with. All that matters is that he tried. It doesn’t make him a failure. It just means soccer isn’t his thing. Karate on the other hand…he is a rockstar in karate. He loves it even when it is hard. It is funny because I am thinking of things in my life where I need to take my own advice. Yet another thing I love about parenting––learning and reminding myself of important lessons as I guide my kids to the same.

I wish time would slow down. I wish Luke was still my little guy and I could carry him in my arms for longer than two minutes. I remember carrying him around the house, his eyes would dart from thing to thing––the microwave, ceiling fan, mirror, light switch––I would say the name of the object as his eyes asked what it was. He always loved knowing what things were and how they worked. As soon as he learned the word “why” it stuck with him. He still has not and probably will never grow out of the why phase. I love that about him and I was always very careful not to say the famous “because I told you so” response. I don’t think there is anything wrong with those words, but I just knew from the first time he asked “why” that his curiosity was a big part of him. The way he would study things, even as an infant, showed me that.

Luke had his first day in kindergarten yesterday and I am still trying to catch up to how I feel…

“I am going to set my alarm an hour earlier than yours so I can help you get ready for your first day,” I said to Luke as I tucked him in bed.

“No. I want my alarm set before yours,” Luke said.

“How about if we wake up at the same time?” I asked.

“Ok, Mommy,” Luke said.

After I tucked him in and gave him a kiss goodnight I went in my own bed. I chuckled as I set my alarm an hour earlier although I told Luke we were going to wake up at the same time. I knew I would be calmer and more collected if I had time to wake up before the rest of the house did––especially on a big day.

I cannot say I slept much. I popped out of bed as soon as my alarm went off. I made my coffee and settled in the couch to prepare myself for the day. I reminisced of Luke’s younger days as I finished my coffee and waited for his alarm to sound. I heard the beeping and by the third beep the alarm was shut off and I heard Luke open his door. I rushed down the hall to meet him. His smile was huge and at that moment I knew his first day was going to be great. Everyone got ready and we headed out to wait for the bus.

Our neighborhood is not on flat land so it was neat to watch the yellow slowly appear as it drove into the sub and up the street. Luke’s eyes got big and he looked a little nervous but when the bus stopped and the doors opened his nervousness turned into determination and he walked up the steps and didn’t look back. It was harder for me than it was for him. I got on my tip toes and tried to see him. I could only see the top of his head and then the doors shut and we watched as the bus drove off. Just like that my Luke was off to his new adventures in school.
I was glad my husband took the day off. We actually had a great day and Oliver soaked up all the attention. He was happy and giggly the entire day.

We went outside a little early to let Oliver play while we waited for Luke’s bus at the end of the day. We were sitting in chairs watching Oliver play on his firetruck. We heard a sound that sounded like the bus. Matt and I both jumped up to realize it was not the bus…it was a truck. We laughed at ourselves but we never sat back down. We paced around our yard until it was time to go to the corner and wait for the arrival.

The bus finally arrived and Luke got off with a smile on his face. His first day was great! Here are a few things he said about it:

When asked what was his favorite part about school: “Everything!”

“The bus was fun. It was a long ride…but it was also a short ride…it was medium.”

“I liked going to school but I really don’t know why you packed me two water bottles.” (Oops, I don’t know why I did either.)

My nerves are a little on edge today but I am relieved everything went well. I believe it will get easier everyday to let go. I hope.

I remember the days of summer as a kid filled with fun and feeling magical. Summer camps, dance recitals, being out in our boat, playing with friends, and of course family vacations. Now as an adult, it is my turn to mold memories for Luke and Oliver.

Luke is at the prime age to start discovering his likes so here is what I am thinking. Karate is a given, he loves it and will be continuing through the summer. He is signed up for Vacation Bible School, which is also a given. Swimming lessons are a must, he still is not comfortable in the water. I am also looking into horse riding lessons (maybe for both Luke and me). I am extremely excited for this, as is Luke.

We will be taking our family vacation in August, the destination is not yet set. We usually do a few weekend trips as well.

Then there are the days in between (my favorite). Exploring our new area by going to new restaurants and farmers markets, finding parks and ice cream shops, hanging out in our yard, and spontaneous trips to the zoo or museum. I cannot express how excited I am.

There is something about taking a trip that cleanses your mind. It brings you back to yourself. I guess that is why many people who are soul searching choose to travel.

I feel revived.

Maybe it was the timing and how everything aligned. Maybe it was the chance to bond with Luke. Maybe it was watching Luke and Camden. Maybe it was spending time with my friend who I don’t see often enough. Maybe it was the charm of California.

I feel inspired to do things.

I want to play in the rain with my kids, splashing and stomping around in puddles. I want to drink champagne and dance with my husband. I want to catch lightning bugs with my kids. I want to read more books. I want to show my kids the beauty in a blade of grass. I want to drink hot tea and enjoy every ounce of warmth that flows through me. I want to decorate my house. I want to go to more museums. I want to sit outside and listen to the birds. I want to do all of these plus so much more.

Mostly though––I want write even more than I already do––to get lost in my own world and enjoy the release it gives me.

Yes I know I am corny.

Oliver wants to be older. He thinks he is ready for big boy things long before he is actually ready…or at least before I think he is ready. It all started with his birth when he decided to come early. Ever since he has been determined to be a grown up. I love his determination but I wish he would slow down!

Today I put him down for his nap, a nap he didn’t think he needed. I started out by rocking him. He is quickly outgrowing that as well so I put him down and walked out. I am a rocker. The lull of my child’s movement and noise pulls me into the present. After a long day of chasing kids or even in the middle of the day I look forward to the slow down. So now what? I don’t know if I am ready to say goodbye to the rocking chair just yet.

Maybe it isn’t the rocking chair that I am not ready to say goodbye to. I am not ready to say goodbye to the baby in Oliver. The thought of him being the last baby is bothersome. I love kids. I just don’t think I can have another. I still have so much guilt over Luke and his Ocular Albinism. The relief I felt when I found out Oliver didn’t have OA has been the main reason I am scared to have another kid. I have already wrote about how amazing Luke is but knowing some of the difficulties he will face kind of stomps on my heart. What if we had another kid that had Ocular Albinism and it was worse than Luke’s?

Oh but then I think of being pregnant. I am one of those weirdos that genuinely loves being pregnant. To feel a baby grow inside me, watching my belly grow, feeling the baby move…let’s not forget hearing the baby’s heartbeat. Oh my, I love it all. I had c-sections with both and I never got to hold them right away. Instead I gave them a kiss on the cheek. To never be able to give that first kiss again makes me sad. The finality of it. Ugh.

I believe many women can relate to this mourning I am describing. We all have our different reasons. Some cannot financially support another, some due to illness, some cannot conceive, or whatever other reason we decide not to expand our family––it is just hard. To think this part of my life is over makes me want to cry. I know I will get over it and I know I am blessed to have two little guys, but it doesn’t make me feel any better right now.

My grandma once said, “If you have a mind then you should never be bored.” I am pretty certain it flew out of her mouth because she was tired of hearing her grandkids complain about being bored––but it stuck with me––from the moment it came out of her mouth. I was a stubborn little girl and I knew I had a mind, so I set out to never be bored again. Of course when I was a teen the word bored was spoken around friends. Mostly though, I would not allow myself to be bored. I would sit in bed and think up crazy stories, I would transport myself to different worlds, and I would daydream. On nice warm days, I would go outside and allow my imagination to run wild. With two young kids, I do not get to do this as often, but sometimes if I have a spare minute…I get lost in my own mind.

Without her knowing, she sparked my imagination and my imagination sparked my love for writing. I will pass these wise words down to my children and I pray they get as much out of them as I did.

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.