Category: ocular albinism

• 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.

   

   

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  July 12, 2016

  christianity, Family, life, love, ocular albinism, parenting

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• 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.

   

   

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  May 17, 2016

  Family, life, ocular albinism, parenting

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• 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.”

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  August 5, 2015

  faith, ocular albinism

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• 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

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