Tag: ocular albinism

This World Needs You, Oliver.
We went to a birthday party last night. Oliver wasn’t feeling the party. We walked in the house, he looked around to the many unknown faces, and plopped right on my lap. I kissed the top of his head and he gave me his ‘I’m peopled out’ look. I whispered in his ear that it was okay. Everyone kept asking if he was okay. It made him cling to me more. I started to feel self-conscious for him. I began to worry even though my instinct told me what was really going on.

So I whispered in his ear, “Sweetie, are you okay? Do you feel okay?”

“Yes, Mommy,” he replied.

People kept staring at him, I kid you not, like there was something seriously wrong because he was not running and yelling like the rest of the kids. I almost spoke up, but sometimes it isn’t worth it. But maybe I should have. I think I will next time.

Oliver is one of the most content people I know. He is laid back. He entertains himself and never complains he is bored. When he is comfortable with you, he is the funniest kid you’d ever meet. He lightens the tone in our house like no other. He isn’t shy and is FAR from being an insecure kid. He just doesn’t need or like to be center of attention. He is an observer. He easily points things out about people that most young four year olds would never notice. He’s loud and he is quiet. He is goofy and reserved.

He is a creative old soul…just like his mother. He is a story teller who never leaves out a detail.

He would rather know people before he shows himself to them. He is selective with whom he does open up to. I bet it is because he can read people…just like his mother.

He is empathetic. Without saying a word, he feels what I feel. “Mommy, you have a sad look in your eyes. Don’t be sad, cutie-pie.” He absorbs others emotions…just like his mother.

I want to raise Oliver knowing it is okay to be the way he is. I don’t want him having to figure that out in his twenties like I did. My parents loved and accepted me and I was okay with myself…I just didn’t know what being an introvert was. Back then, people didn’t use the term. The first time I read what it was, I felt free. I always knew I wasn’t shy. Because to me, shyness stems from deep insecurities which I never really had. I just never knew how to describe myself and for a thinker and analyzer like me…it was dreadful not to know. Huge HUGE lightbulb moment. I’m an introvert, it all makes sense now!

Oliver will have an advantage I (and many others) never had as a kid. I will be able to tell him about all the great introverts of the past. The thinkers, the mercy-driven need to change and help the world doers, the inventors, the creators…those who refused to think inside the box. I don’t want him to feel he has to do what everyone else is doing all the time. I will relate to him when he feels someone in infringing on his individuality. I will be able to tell him, I know exactly how he feels. I will be able to show him what a gift and what a strength it is.

God made him this way for a reason and I am so glad he did. I feel as though I should mention I love my extroverted son, just the same. Luke teaches me to see the other side of things. I’m just as glad God made him extroverted. I am in awe in the way He designed my boys. Luke with his Ocular Albinism needs to have the boldness God gave him. He really does. Oliver, needs all of his strengths and sense of mercy. I already see how Oliver cares for Luke. He watches out for him and he accepts Luke like no one else in this world does. This world needs Oliver, Luke needs Oliver. Oliver needs Luke too. Luke pulls Oliver out of his own mind and shows him the other side of life.

They just fit together, they are the perfect brothers. I am moved to tears thinking of how God made them to be brothers. To think, I was scared to have a second child. Okay, I’m done now. The end!
Share this:
Tweet
Like Loading…
August 13, 2016

christianity, Family, God, introvert, life, ocular albinism, parenting
My One Prayer
Everyone has that one thing they pray for the most. You may never share this prayer with anyone but Him. You may believe it will never be answered or at least answered the way you want it to be. But still, you want it so badly you continue to pray and sometimes beg or try to negotiate a deal with God. Sometimes, if you are like me, you will feel guilty for continuously praying for this one thing. Because you know you are blessed and things could always be worse. But yet, you cannot help but to relentlessly pray for it.

My prayer is for my oldest son, Luke, who has Ocular Albinism. I don’t pray for God to take his Ocular Albinism away. I do pray for his future and his ability to adapt to this world. I pray people are kind to him because of his difficulties. I pray he one day falls in love and marries a girl who is strongly rooted in God. I pray for his future children.

My one prayer, though, is that one day his visual acuity will be enough for him to get a driver’s license. At the end of the day, I know the above prayers should have more priority. I just cannot help it. I want my son to be able to drive. It is my one selfish prayer. I want to one day hand him the keys to my car…or to Matt’s car and say don’t be home too late with tears streaming down my face. I want to see him roll his eyes and say, “I’ll be fine, Mom. I’m just driving down the street.” I want Matt to place his hand on my shoulder as he says, “Luke will be just fine”. That is what I want.

Today, driving home from Luke’s eye doctor appointment, I cried a little like I always do. This time, for the first time, the tears were filled with fragments of hope. Not a lot of hope, but just enough for me to exhale a sigh of relief. Every single appointment, even the first appointment where Luke was diagnosed, the doctor has mentioned that Luke will probably never be able to drive. It is something he knows bothers parents. He always says he doesn’t want to give parents false hope. I respect that about him. It can’t be easy. Today was different. Luke’s vision has improved some. He said it is quite possible Luke’s vision will improve enough where he could possibly be able to get a driver’s license.

It took me about ten minutes to process that. In the parking lot after Matt and I got the kids in the car, he pulled me in for a hug. Yes, I thought, he really did say what I thought he said. It was the first time I left that place without a knot in my stomach. I explained it to Luke when we got home and we talked a bit about his eye disorder. I had never spoken that in depth about it with him. I felt it was time and at the end I was able to give him a little hope. His reaction told me it was the right time.

Hope and possibility are worth holding tightly to, even when there is still a chance things may not end up to your liking. Sometimes all we have in this life is a little hope. A little hope has to be enough. It is enough for me. Thank you, Lord.
Share this:
Tweet
Like Loading…
August 9, 2016

christianity, faith, Family, God, hope, life, love, ocular albinism, parenting
I Watched You.
Yesterday afternoon I watched as you walked up from Golf Camp. You had a dramatic look on your face, much like the many dramatic facial expressions I too have. You were the only kid not carrying your golf bag. I’m sure because you somehow talked someone else into carrying it for you. I watched as you told the person, “Okay, you can give it to me now.” I watched as you walked up to me and sighed, “Why couldn’t they just let us take a golf cart.” One of the coaches was watching you too and he chuckled. It was in that moment I realized I don’t watch you enough.

I get caught up in parenting. I love you and you are such a blessing. But our biggest blessings carry with them responsibility, worry, work, and so much more. I worry more about you because of your Ocular Albinism. I know I sometimes worry too much. I know because when I pull (or yank) myself out of being your mom and just watch––I see that you are going to be okay.

I watched you last night during wrestling. You are so witty and sarcastic. You had everyone in the room laughing––the kids, the coach, and the parents.

I watched you after wrestling as we left. You caught up with your friend. You two talked like grown-ups and us parents watched and laughed. You like to relate to people just as I do. You are not big on small talk. Kid, I’m not either.

I watched you this morning as you dug through your golf bag looking for something. You were acting like a grumpy old man. Oh boy, you are stuck in your ways. You are a very strong-willed child. I read somewhere that the most strong-willed children usually become the most independent in life. I need to remind myself of that more often.

I will never stop being your parent. I will never stop worrying about you. I will never stop trying to point you in the right direction. I will never stop trying to encourage you to be the best person possible.

I want you to know hard work pays off. I want you to be accountable for your actions. I want you to have fun in life too. I want so much for you because you deserve it.

I will never be a perfect parent. I realize that is okay. I promise to never stop trying, though. I also promise to stop and just watch you more. You are an awesome kid and I am so very proud of you. Happy Birthday, Luke. I cannot believe you are seven years old today.
Share this:
Tweet
Like Loading…
July 12, 2016

christianity, Family, life, love, ocular albinism, parenting
It is never easy.
Luke has been asking to take piano lessons. We had a few things going on and said this spring/summer we would get him started. I decided to start looking a couple weeks ago. Oh, but wait. With his eye disorder he will require more energy than just picking up the phone and setting up a lesson. So the search began to find someone with at least a little experience with someone with special needs. Especially at first to get him acquainted with the basics.

Today, I finally found a piano instructor. I spoke with her over the phone and it took all I had not to cry happy tears. He has his first lesson next week. She had so much excitement in her voice, true excitement, so I know it is a good fit. I cannot tell you how much weight is now off my shoulders.

It is never easy when you have a kid with special needs. I am not writing this looking for sympathy. I just don’t think people are aware of how hard it is. Constant worry and researching. Making sure his IEP is being followed through. Building his confidence. Loving him but trying not to baby him too much. I know in many ways we have babied him too much and now we are trying to reverse that a bit. It is so hard. I just want the best for him. I just want him to have a good life. Deep down I know he will. He is a strong person with a sometimes too strong personality.

My Luke has a limitless way of thinking and living. He wants to try it all. I want him to try it all. I don’t want any of his struggles to slow him down. But, not everyone is able to accommodate him. It doesn’t seem fair. But then, it isn’t fair to expect others to step up and make extra effort for one kid. But, I so want them to. But, not everyone is equipped for that.

It always takes more effort, which of course I am willing to give. I have to worry about showing my youngest attention as well. We do a lot more for Luke and I don’t ever want Oliver to feel left out. From what I have heard it is inevitable. He will feel we do more for Luke because we will always have to do more for Luke. It is a sad reality we as a family have to deal with and make the best of.

I know there are people who have children with greater needs than Luke. I know I am blessed in many ways. Still, it is never easy.
Share this:
Tweet
Like Loading…
May 17, 2016

Family, life, ocular albinism, parenting
His strength
I am stronger because of his strength. My son’s strength, that is. When I started back blogging a few years ago, it was because I needed an outlet for my grief. It was the deepest grief I have ever felt in my life. My grief was my own, it was my son’s future grief, and it was having to see my husband’s grief. I imagined never feeling comfortable having another child…I imagined the struggles that Luke’s life would bring…I imagined my husband looking at me the as though it was my fault for the struggles. I found it hard to even blog about it because when I looked at Luke and his beautiful blue eyes, I just couldn’t handle it. I had to focus on the day to day stuff and I mostly blogged about other things. Blogging still helped though. It helped me to focus and it brought back my passion of writing.

For a long time, I would watch for struggles. I was hyper-focused on developmental stuff because I was afraid he would fall behind. He never did. Yes there were little things like fine motor skills he was a bit behind on…but nothing major. He was walking at nine months…he was making eye contact and his speech was fine. Every thing I was told to look out for, for kids with visual impairment, never occurred. Still, I had the early on program evaluate him because I didn’t want to miss anything. He never even qualified for service because he was doing so well. It gave me hope and I am not gonna lie, I thought maybe his vision wasn’t as bad as the doctor said. I was in a bit of denial back then. When Luke got old enough to do a more accurate eye exam my heart broke all over again. I remember the words Luke’s eye doctor said, “He may not be able to get a drivers license. I like to warn my parents ahead of time so when the time comes they are more prepared. It won’t be so shocking.” There was no denial after that. Every eye exam since has confirmed he really does have low vision. I went through the grieving process all over. I prayed, I cried, I prayed…the Lord answered my prayers in His perfect way.

No, the Lord did not heal Luke. The Lord gave him strength. Strength that sometimes drives me bonkers. He is so stinking stubborn…but in the end someone like Luke needs that kind of strength and he needs that kind of stubbornness. His strength is what has helped me come to terms with all of it. Luke has never allowed his vision to slow him down. He has learned how to compensate and he keeps up with other kids. I sometimes want to shout “hurray” when I see him do something that obviously must be harder for him than others, but I don’t. I just thank God for the perfect way he made Luke. Yes, I said perfect.

My guilt of passing on gene that caused his ocular Albinism has faded. I no longer deny his vision problems because of my trust in his doctor’s expertise. From time to time someone else will say to me, “I don’t think Luke’s vision is that bad.” I have learned not to argue the statement because it makes the person feel better saying it. I just respond in my mind. I say, “No his vision really is that bad, but God gave him the strength to overcome it.”
Share this:
Tweet
Like Loading…
August 5, 2015

faith, ocular albinism
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.
Share this:
Tweet
Like Loading…
October 4, 2012

ocular albinism, parenting

Tag: ocular albinism

This World Needs You, Oliver.

Share this:

My One Prayer

Share this:

I Watched You.

Share this:

It is never easy.

Share this:

His strength

Share this:

Reopening the Wound

Share this: