She’s already blind so it doesn’t really matter.

19 Feb

Last week’s episode with Oli going to the hospital was really difficult on Kekoa. More difficult than I even really realized.

We all know that she is fine.
We all know that a child’s life with seizures can be unpredictable and scary.
We know that her seizures are treatable and that she returns back to normal fairly quickly.
We know that there are interventions that can be done and medications that can be adjusted and doctors that can be called.
WE know that.

But does a child?

I mentioned in my blog last week that Kekoa was very tearful the day after the ER visit.
The following day at school for him was no better.

I picked him up after school last Monday in the car and was met with a boy who had pain and sorrow written all over his sweet face.

“Hey buddy. Are you okay?” I asked him as he climbed into the front seat.

“Yeah.” His one word response was nowhere near convincing.

“Are you sure? Do you want to talk about it?”

“No. It’s nothing.” Nope. I’m still not buying it.

I pull the car forward and ease into the street, heading away from the school. I stay quiet for a few minutes, hoping that he’ll warm up and decide to talk. When we’re almost home, I try again.

“Kekoa, the last few days have been really tough. I know it was hard for you and scary. I’m here if you want to talk about it.” I sneak a quick glance at his face to see if my words register anything with him.

They do.

I see tears pooling in his eyes as he hardens his face, trying to be strong. Trying not to cry.

It breaks my heart. I wish he would just talk to me.

Finally. FINALLY he does.

“Mom? Some kids at school weren’t very nice when I told them that Oli had to go to the hospital yesterday. I told this one girl about it and she said ‘So. Seizures are no big deal. Cancer is REALLY bad.’ Why would she say that?”

I can feel the heat creeping up the back of my neck as my face begins to burn.

He’s not done. “And then she said ‘Well she’s already blind so it doesn’t really matter that she had to go the hospital.'” A tear leaks down his cheek.

I’m too stunned and too mad to cry. I want to turn the car around and drive back to the school. I want to find out who said it and where she lives and I want to drive to her house and corner her parents…

I was SO mad.

The little irrational voice in my head urged me to do all of those things, but fortunately the rational voice in my head is usually louder. Plus, what I would say next would set an example for my son on how to deal with situations like these.

“Kekoa she just doesn’t understand. That’s why she said those things. She’s a kid and she just doesn’t have any idea what life with Oli is like.” I tried to steady my voice as we pulled into the garage. “If you’ve never had a special needs sister or seen a seizure or the paramedics race into your living room…you just don’t know.”

What else could I say to him?

As we walked into the house my mind was racing a million miles a minute trying to figure out how I could fix this unfortunate and hurtful day for my son.

He has been through so much. So much.

THIS. This very situation was the reason that when Oli was exactly 3 days old I gave my son, who was only 17 months old at the time, a bath and promptly sat on the side of the tube bawling my eyes out. I cried and I apologized to my toddler because I knew then that situations like these would happen. I knew it and I just sat there, tears streaming down my face, with my son looking up at me with confusion on his face as I just repeated “I’m sorry. I’m so sorry.” Over and over again.

Now 6 years later, the moment had come. I apologized again.

This time was different though.

This time I didn’t apologize for Oli. I didn’t feel sorry for him because he had a special needs sister that would make his life more difficult at times. Which I had done before.

Yes. I’ll admit it.

I don’t feel like that anymore. Obviously.

This time I apologized for the words of a little girl who probably had no idea how much it hurt my son or myself.

She had no idea that by stating that it was “no big deal because she was already blind” she was devaluing my daughter as a person. That she was reducing her to something less than the incredible little girl that she is.

At least in my eyes, that’s what those words meant.

She probably had no idea that she was being a bully.

I immediately sent my friend a text. She has a daughter in Oli’s class who also has seizures and she has a daughter just a year younger than Kekoa.

I rattled off what had happened and asked if Kekoa could talk to her daughter. She said yes.

“Kekoa if you want you can talk to Chloe. She completely understands. Her sister has really bad seizures and has to go to the hospital a lot.”

“Maybe later mom.” He just looked defeated.

After dinner I typed an email to his teacher, who was not at school that day, but in a conference.

She responded immediately, apologizing for what had happened, and offered to speak to the guidance counselor. She also suggested that maybe the guidance counselor could speak to the whole class.

I told her how much I appreciated her help and also said that I’d be more than happy to come and speak about different disabilities and siblings.

It’s been a week now.

Kekoa is mostly back to normal.


I’m trying really hard to support him and help him however I can.

I’ve enrolled him in a workshop for siblings of special needs children that will be in May.

Oli’s occupational therapist at hippotherapy has offered to give him therapeutic riding lessons for relaxation and stress reduction. He starts on Thursday and is beyond excited.

He’s always had his own individual sports and time alone with me or Seth.

I can just see it all building up though.

I can see the pressure and the weight that being part of Oli’s life can bring. We just came off of a particularly bad stretch with her. Our days were filled with her screaming, biting and scratching herself, banging her head, and being completely inconsolable for weeks. Then the seizures…

I feel it and I see it and I know it’s there weighing him down…

but I’m powerless to either fix it or take it away.

Right now I’m just trying to do what feels right and praying that we are going to go down the right path with him.

I really believe that siblings of special needs kids can be greatly affected by it all. The good and the bad.

I know that he is an amazingly supportive, kind, compassionate, loving, generous little boy who is always looking to help the next person in need.

And I know that he is this way because of Oli.

But his soft heart can be broken so very easily.

Especially by a few words spoken without any thought by someone who just simply doesn’t know.

My husband mentioned to Kekoa that maybe that little girl knew someone who had died from cancer so to her, cancer IS really bad.

Cancer IS really bad. Especially when it happens to someone you love.

So are seizures. Especially when they are happening to someone you love.

It was a very good point.

Kekoa considered it and it seemed to sit well with him.

It’s all relative. We only know what we know.

I just hope that in the end I can give him enough opportunities to support him and validate that no matter what, his feelings are his own. No one can argue them or make him feel like they are any less than what they are.

Stating how you really feel is one of the ultimate truths in this life.

I want him to know that no one can take that away.

7 Responses to “She’s already blind so it doesn’t really matter.”

  1. Laura February 19, 2014 at 4:33 am #

    You and your family are so beautiful and inspiring. This made me cry, but your strength (& Kekoa’s) is amazing!

  2. ksbeth February 19, 2014 at 10:37 am #

    what a challenging and painful situation this is. another reason why people compare things and try to make yours seem somehow not as bad is, fear. such as the little girl who made the cancer comparison. she may have a lot of fear about not understanding what is happening with o either, and says things like this as a defense mechanism, for fear that something could happen to her. she may have heard or felt this somewhere, for had an experience with cancer, from someone in her life who is older, as it seems something unusual for a child to bring up as a comparison. and the blind comment too. she may have a fear of some sort that some of these challenges could happen to her and brushing them off as nothing, somehow makes them less bad or likely to happen to her.

    as a teacher of young children, i see that a lot of bullying or being mean comes from fear of something different or that it could happen to them, or a lack of understanding of what is going on. some of this begins with their parents, the people they look up to for answers. i think that everything you are doing with your son is so great, and i know it is so hard on all of you. you have nothing to apologize to him for, he has a sister he adores, and so many people never have that. i know it must be hard to see him suffer and know that he only does because he feels such love for her. i also think that educating the kids in the class a bit about differences or what is going on with regard to people having challenges and how they feel is a good thing. most of these children have no idea of what it must be like. best, beth

  3. Anonymous February 19, 2014 at 11:43 am #

    Thank you for sharing. I have a sibling of a special needs child in my two year old room. You gave me a whole new perspective. You are a very special Mom.

  4. Dean B February 19, 2014 at 11:50 am #

    Kekoa is a sweet boy. Kids can be really mean, especially when they don’t really know what’s happening. My heart goes out to him. Seizures are not “just” seizures and you’re right, when it’s happening right in front of you to someone you love and is family, it is still a scary experience no matter what age you are. My younger brother started having seizures when he was in high school. It just started without any warning. The doctors didn’t know what was happening (still have no answer up to now). I’m way older than him. I was home visiting my family when it first happened. When the call came, my mom sent me, not knowing they were seizures and I won’t ever forget seeing my brother, surrounded by paramedics seizing and people kept asking “Is he epileptic”. No. That was the scariest day in my life and I was already in my 20s. The seizures thankfully, just stopped. He’s 30 now and hasn’t any episodes. So no, seizures are definitely not “just” seizures.

  5. the crumb diaries February 19, 2014 at 12:35 pm #

    You and your family are trailblazers. Think about what all of the people in history who have dared to blaze a trail. You are opening eyes and opening doors. You are raising awareness and changing minds. You are giving people a glimpse into your amazing, but sometimes difficult daughters world.

    We don’t know what others go through and I believe every experience they live through gives them the tools to deal with situations they encounter. So many people are never given the proper tools and we should pity them and their ignorance. Someone has not taught that little girl the basics in human compassion – something your kids have received double helpings of.

    It does suck having your sweet, soft hearted Kekoa feel this pain, but as he matures he will develop a thicker skin and a quicker tongue. He will be the eye and heart opener of the generation around him. He will be the one who changes minds, simply by loving and being proud of his Oli. Kids will recognize the love and respect he has and change how they see these special kids.

    Being the older sibling is hard. I won’t lie and say its a cake walk. It can weigh on them and probably always will. Abby is guardian should anything happen to us – that’s a huge deal. But these kids, these siblings – are beyond special themselves. They are wise beyond their years. They are sometimes burdened, but more often lucky that they get to experience such a pure sense of love. Not all kids get to feel that. I bet that little girl hasn’t….

  6. Linda Souther February 19, 2014 at 4:37 pm #

    Kekoa obviously loves and worries about Oli so very much, it hurts him to the core when people say mean things about Oli, but he is a young boy and seems to hold his thoughts and feelings in as well as not saying something to this girl who said these things that upset him. I am not sure that the girl was being mean or just hasn’t been taught about diversity and children with special needs. Some children come from homes where the parents are rude and unaccepting of those with special needs and the chain is bound to continue because these kids learn from their parents. I do think that the schools should offer kids from a young age some type of knowledge about all the different kind of kids and people in this world and be made aware that nothing is wrong with these kids, they may be different in their needs and some of those should be explained too, but the kids need to know these special kids are human and have feelings like everyone else. They need to know that they have family and friends who love them.Your boy will get to the point as he ages a bit where he will say things to anyone seeming to bully Oli and may even fight someone because of other kids who may say mean things as well. This is great that siblings of special needs kids pretty much all would do the same thing as well as friends of a special needs kid. Fighting is really not the answer, though it may be the first thing to come to mind in anger, The schools have changed so much since I was in school. From a young age the kids here have health classes that teach all about drugs, alcohol and sex. These classes usually start in sixth grade, Kekoa is younger. I think the school should offer some classes and information about diversity when the kids are younger even younger than Kekoa and still pretty innocent. Siblings of children with special needs are willing to take the back seat because they know their sibling needs more time and care at times. They grow up more compassionate, helpful and understanding than children without a sibling with special needs. I think you handled this situation great by enrolling
    your boy in a class for kids with special siblings as well as enrolling him in riding therapy which is very calming in all kind of situations. You are a great family full of love.

  7. Carol Jozefowicz February 19, 2014 at 5:05 pm #

    Oh Shannon….I wish I had some words to offer you, but the other replies have been much more eloquent than I ever could be. Just sending hugs for all of you.

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