Archive | 3:49 am

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.

Mostly.

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.

Advertisements
thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

Mommy Got Her Groove Back

How a new mom, and wife does parenting and daily life.

Lessons from my daughter

Although all doctors agreed she would do nothing.....

I'm fine, but my Mommy has issues!

Raising a daughter with special needs.

Living on the Spectrum: The Connor Chronicles

Our family's adventures in the world of ADHD and Autism.

Parenting And Stuff

Not a "how to be a great parent" blog

don of all trades

Master of none...

The Third Glance

A peek into my (Autistic) mind

One Stitch At A Time

Making my way back in time.

Disability Watchdog

Exposing Injustices for Vulnerable People

My thoughts on a page.

Living, Laughing, Loving, Loathing.

It is Well...with my Soul

Sure, my hands are full. So is my HEART!

Chopping Potatoes

And other metaphors for motherhood

This is the Corner We Pee In

Bulletins from the Parenting Trenches...

clotildajamcracker

The wacky stories of a crazy lady.

This is the place

visiting places where writers were born, lived, loved & are buried.

motherslittlesteps.co.uk/

Motherhood and Country-Coastal Living

My Dance in the Rain

The journey of my life, my path to redefine myself and a special little girl with Cri du Chat Syndrome and Primary Ciliary Dyskenisia who changed it all.

Prego and the Loon

Pregnant and Dealing With Domestic Violence

%d bloggers like this: