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.
Bathtime. I can’t say I dread or despise it. It is more of a “going through the motions” time for me. There are always things I’d rather be doing or things that I feel are more productive. My oldest is pretty independent in the bath. My three year old, of course, is not. I am forced to stop what I am doing to sit in there with him. I should look forward to the downtime but I do not. Maybe it is because I’d rather spend my downtime reading with him––instead of washing his dirty feet. Don’t get me wrong, his dirty feet are adorable, but you know…who looks forward to washing feet?
As I was thinking this it struck me that when it comes to my kids I (sometimes) lose my servant heart. I could rationalize this by saying it is just washing feet. But when I think of the significance of Jesus washing his disciples’ feet and the purpose of him doing so, it puts things into perspective. Mostly, I put all I have when it comes to serving in my church, even with the little things. When I worked I did the same. But when it comes to certain things with my kids, I simply do not.
I know I cannot joyfully do everything in life. I cannot be perfect in parenthood. I need to show myself grace. I know I am a good mom. At the same time though, I need to point out things I can improve on. That is all a part of growing and striving to always become a better person…a better mom. So, next time I wash his dirty little feet, I will think of all the steps and jumps they have made through the day. All those step and jumps are a part of his journey. I will think of what a gift it is to have dirty little feet to wash. I will thank God for giving me the responsibility of taking care of dirty feet and everything else I take for granted as a parent.
God gave me and my husband two amazing boys to raise up to be men of God. We need to show them, even through the little things, how important it is to serve others.
When he had finished washing their feet, he put on his clothes and returned to his place. “Do you understand what I have done for you?” he asked them. “You call me ‘Teacher’ and ‘Lord,’ and rightly so, for that is what I am. Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet. I have set you an example that you should do as I have done for you.
I noticed Luke’s glasses were not on his face as he crossed the street. He stopped in front of me and raised his hand where his broken glasses lay. I felt the pain as I looked in his eyes and he told me, “My friend broke them on the bus.” I looked up as the bus pulled away. I tried to motion for the bus to stop but it was too late.
I was a bit perturbed that the driver did not take the time to tell me of the incident and I knew getting a story out of an upset Luke would not be easy. For someone with such low vision like Luke, his glasses are truly a part of his body. So to have someone break them is the equivalent of getting a black eye from someone. He was sad and mad at the situation. Long story short, I kind of got the story of what happened and have also spoken to the school. I am not happy about it and I am not happy about how kids behave on the bus. They were rough housing and his friend took it too far.
What I am happy about is how Luke has handled it since. Luke decided after the incident that he no longer wants to sit with this kid. I so admire him for making this decision on his own. I know how hard it can be to make a decision such as this. Luke told me he doesn’t like how they play mean and doesn’t want to be friends with him. The more I think about it, the more proud I become. In life, you must choose your friends wisely. Sometimes it isn’t just about how a friend treats you. It is also about how you feel and how you act around a person.
I had to look away. I fought the tears as much as I could, took a deep breath, and continued to eat my dinner. I looked across the table again. Oliver’s sweet face and his deep laughter…the thought of his perfect, untainted life made me turn my head once again. Every time I looked at him all I could see was another little blond haired boy who lives in our area. A boy who was recently put on hospice.
I have never laid eyes on this family. Still, I am a wreck every time I think of him and what this family is going through. There’s a Facebook page for the community. Yesterday they posted a picture of him making Christmas cookies. It was their Christmas Eve. This morning a video was posted of him waking up asking to open his presents-because it is their Christmas. What else can I say? I can’t stop crying over it.
I know my mind will be on this boy and his family as I prepare for our Christmas season. All we take for granted in life and all we complain about will tighten a knot in my stomach. The thought of this little boy dying breaks my heart. But then thought of the strong faith that this family has held onto strengthens my own faith. I don’t know them…but what I have seen and heard makes me know they are a beautiful family. A beautiful family in need of prayers.
Pray for them.
I had to speak with my five year old about forgiveness. He is upset with two of his friends or now former friends in his class. Both reasons why he is upset with them would produce hurt feelings in anyone. I know though, I would have no one in my life if I didn’t learn to forgive. I want to teach my children early on no one is perfect and people hurt each other sometimes.
My Luke is a black and white thinker, so when I speak to him it works best if I am gentle, of course, but blunt. He is a get to the point and move on kind of person. Our conversation went like this:
Me: Luke, I really want you to think about forgiving A & B. You don’t have to be friends with anyone you don’t want to be but you should try to forgive them.
Luke: I don’t want to. They made me mad.
Me: I understand that, but haven’t I made you mad before? You still love me.
Me: I’m not perfect, am I?
Me: No. I am far from perfect and I know I have hurt your feelings before. No one is perfect.
Luke: Jesus is perfect. God is perfect.
Me: (very proud) Yes! You are absolutely right. We will never be perfect like Him, but we need to try to forgive people just as He forgives us for not being perfect.
Luke: I’ll think about it Mommy.
I know forgiveness is easier said than done but it has to start with trying. From personal experience, I know how freeing it is to forgive others. You cannot grow in life holding grudges. Encouraging my children to forgive others will hopefully give them more peace when life and relationships really get complicated.
I planted the seed…it is now up to Luke.
Being a parent is not always easy and it doesn’t always feel like the blessing it is. I don’t like when my kids suffer. I don’t handle those moments well sometimes. Even knowing life isn’t meant to be perfect, I wish I could take their pain, tears, and the bad moments away from them. I would take and endure all their hardships for them if I could––but I cannot. All I can do is pray and help equip them for all of life––the laughter and the tears.
We recently bought them a playscape for the backyard. As you can see from the pictures they love it. I am sure the newness will wear off and it will become less magical. For now though, it has given them joy. Joy that helps them forget about any troubles they may have. Joy. When their eyes connect with mine and those smiles pull me into their very soul I am reminded of the beauty of parenting.
Those smiles are a gift from God I never want to take for granted.
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.