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10 Jun

Silently planning a future

I am currently listening to a webinar about planning for the future for Oli. PERSON CENTERED future planning, with an emphasis on person centered, meaning that I am supposed to include my child and her voice and her choice about what she wants to do in the future.  I am supposed to encourage and support her to figure out what she wants to do in life and empower her to fulfill her dreams.

What?

Ummmm…. I am supposed to include my child in planning for her future when this same child cannot even tell me when she needs to use the bathroom.

This may not be the webinar for me. Did I sign up for the wrong one? Did the advocate that suggested this webinar, the same woman who has known us since Oli was 2, not realize that she literally has no voice? She is fantastic and this is not a dig about her, but more about the system itself. Where is the webinar for kids like Oli? The answer is that I don’t think they exist. Not like they have them for kids who can in some capacity participate in the decisions surrounding their life. What kind of choice can I give my silent child?  A child who is no longer a child but a 14-year-old young woman who still relies on her mother for every single need.

I absolutely need to plan for her future but planning for her is so very different than when I think about the future of my other children. There is no her without me. There is no future for her that does not include me. No matter where she goes or what she does I will go, and I will do as well. As I sit here and listen to this lecture telling me that it is not my choice as her parent to make these decisions but her choice as the person with the disability, I can only laugh.  And cry a little bit too.

I started this blog 7 years ago. 7 years. Half a lifetime ago for Oli and I wish I was sitting here telling you that so much has changed. I wish I could tell you that together we were sitting here planning this fantastic future for her and I was pushing her to dream hard and dream big, that the sky was the limit for my beautiful girl.  Right now, I can only tell you that the world, her body, and her mind have placed so many limits on her that I don’t even have the faintest idea on how to navigate them.

I know that I need to plan. I will blink and she will be 18. I will need to stand before a judge and hope that he grants me guardianship. A single tear will fall, and she will be 22. I will need to find a place to fill her days because she will no longer be allowed to attend school. A rose will be thrown on a casket, and I will be gone. She will be alone. Who will take care of her then? I think that is the most unfair thing about Oli’s disability. The world moves on and I grow older, and it seems that she just never does. She remains the same.

It’s so unfair. I see glimpses of her in the way her whole face lights up when she laughs. The quiet intensity of her jaw as she listens closely to her surroundings. I see rays of sunshine glow on her skin and I think about how different our life could have been.

I use that word a lot.

Our.

We.

Us.

 I almost can’t even think about her as a singular person, she is so entwined in the very fabric of my being that I honestly don’t even know who I would be without her. When I think about planning for her future, I must also think about mine. What will we do? Where will we go?

In a few years it will only be Oli and I. Living out our lives as one. I always imagined that we would move to a beach in Florida and live out our lives like a couple of Golden Girls. Maybe we can meet another mother daughter duo and all live in a fabulous wicker filled house.

I don’t know what the future holds. I know that our life in no way, shape, or form, has turned out the way that I thought it would have 7 years ago when I started this. So much has changed. Some for the worst but mostly for the best.

Oli is happy.

I am happy.

I look forward to dreaming big dreams for my girl until the day that she can share her own dreams with me.

 Maybe she will one day.

Maybe.

A feelings box

30 Dec

I stopped writing and my world fell apart.

It sounds dramatic.

It’s really not too far from the truth.

How can the non existence of one action cause such destruction?

I’m only beginning to grasp an understanding of how this happened.

When Oli was born I taught myself to ignore my feelings. I learned to stuff them down, deep inside a box and I never looked at them. I never experienced them. I just left them there in the box to rot. They were left rotting there until their foul, putrid contents bubbled up and out and spilled all over me and everyone around me. That box was filled my pain and once escaped, it became its own living being. A pain body. It completely consumed me. It wasn’t until I recogized it for what it was and looked at the foulness that had splattered all over my world, that I began to cope and accept those ignored feelings. I took that mess and laid it all out onto paper. I didn’t heal until the pain and fear and anger and sadness were turned into words.

Now I find myself back in the same boat. I’ve stuffed four years of hurt and fear and anger and sadness into a damn box again. As I sit here it actually feels like 15 stuffed feeling boxes that are just sitting and festering.

I stopped doing all of the things that I know to do and let a relationship control me. I stopped being me and became someone else. I lost myself in the chaos that I created when that feelings monster, that pain body, erupted from it’s crypt once more.

I really want to tell the story of the last four years, and I will eventually, but right now I don’t even know where to start. I know it partially began when I tried to become this perfect “fine” me that I just am not. For some reason I couldn’t let my husband know that I didn’t have my shit together.

Why? Why do I pretend to be fine?

When I started to become hurt and scared in our relationship I do what I do every time I feel things I don’t want to feel. I simply stopped feeling.

I’m sure this behavior was learned way before Oli came into the world, but I know I wasn’t aware of it until then.

So now I’m back at the beginning. Well… maybe not the beginning. I believe everything that happens in life happens as it is supposed to.

How do we know that this is where we are supposed to be in life? Because this is where we are.

I don’t know what will happen with my husband or our future.

I do know that in order to find “myself” again I must unbox the last 1,840 days worth of feelings that I am just now trying to look at and trying to experience.

It’s painful. It hurts. But it’s better than feeling nothing.

In order to get through it I have to write.

I do find it slightly ironic that my very last blog entry in Aug of 2015 was about how I run to cope with my feelings.

I pretty much stopped doing that too.

I seem to learn a lot about myself through this blog.

So today, in order to start putting my world back together, I am running and I am writing.

Thanks for reading.

 

 

So I run

5 Aug

It’s been 6 months since I’ve written.

Probably even longer since I’ve written anything with 100% honesty in my heart and left it all out here on the page.

It’s been 8 months since I got divorced.

It’s been 1 hour since I decided to not let the fear of who might read what I’ve written stop me from being true to myself and writing what I need to, to cleanse my soul.

Running and writing do that for me.

I get a lot of flack from people for running and working out as much as I do. I run almost every day. Lift a couple of times a week and compete in triathlons.

“Why do you run? Why would you do triathlons? That’s so much work! You must like pain and suffering.”

Maybe I do.

I swim until the muscles in my shoulders and back ache. I ride my bike until my legs and butt burn so bad that I can’t crank the pedals one more turn. I run until the sweat drips from every inch of my skin.  I run until the pain in my heart becomes as numb as my legs.

I run because I don’t know what else to do with my feelings.

I run so that I can drown those feelings with sweat and let the unspoken words loop endlessly around in my brain until I’m too exhausted to speak them.

There are days when I feel like I’ve come so far in the past 8 years since Oli was born. I’ve come miles and miles from where I was 3 years ago.

But sometimes I just have a moment.

Or a day.

Or a week.

Or a month.

Sometimes it feels just like yesterday when I looked at the tiny baby sleeping in the cradle beside me and wondered if I could ever love her enough. If I would ever be enough for her.

I don’t have a problem looking at her now.

I don’t have an issue feeling for her. For accepting her and pushing her and dreaming for her and advocating for her and being her legs and her eyes and her voice and the interpreter between her and the rest of the world. I don’t mind teaching people about her and answering questions and embracing the differences and cherishing the moments.

I run into to trouble when I try to do all of these things while looking at me.

I run into to trouble when my mind merges with my heart and I’m left feeling less than and inadequately equipped to deal with all that comes with being a special needs mother.

So I run.

I run for her, with her, towards her.

And sometimes I run away from her.

I run away from the pain.

I run away from the fear of the future and the unknown.

I run away from the therapists and the doctors and the never-ending appointments.

I run away from the ARD meetings and IEP’s, missed goals, reports of plateaued progress, regression and missed milestones.

I run away from myself.

When I talk about her, when I talk about us, I still feel the need to justify everything. To throw my FINE’s at the world and scream from the top of my lungs WE ARE FINE! DON’T YOU KNOW HOW FINE WE ARE! NO! THOSE ARE NOT TEARS! I HAVE SOMETHING IN MY EYE!

Why do I do that?

What’s so wrong with being not fine?

I still haven’t figured that part out yet. I don’t know what’s wrong with talking about how I feel.

I still haven’t really figured out how to feel how I feel. If that makes any sense at all.

When Oli was born and the pain and despair simply became too much for me to bare, I turned all of my feelings off. It was so much easier to be numb than it was to face another day literally drowning in my fear.

Now 8 years later I’m trying to turn them back on.

It’s harder than you’d think.

So I run.

I run and I run and I run.

The tears melt into sweat and neither can be distinguished once they drip from my nose.

I’ve pounded miles and miles of trail with my little wet feelings littered behind me.

One day, I hope to be able to talk as much as I run.

Until that day…

I’ll run.

My heart is a flood of tears.

6 Feb

“Have you ever considered that he might be on the autism spectrum?”

The air left my lungs.

My heart dropped to the floor.

My world stood still, and silent, and dark.

Again.

The psychiatrist sitting in front of me looks at me with her clear, blue eyes.

Her pixie face is soft and caring.

She asks the question with compassion in her voice.

This was the polar opposite of the encounter that I had when Oli’s diagnosis was dropped into my lap.

Autism.

Kekoa?

Autism.

No.

Wait.

Maybe?

Wait.

No.

No.

Maybe?

I hadn’t even thought of it until right at that moment.

That brief moment.

It was 10 seconds of my life that might potentially change the course of my days from here on out.

My life is made up of these little moments.

I hadn’t considered it at all.

Until now.

Until I started looking at him with a different set of eyes.

Now I am seeing him.

The obsessions.

The social awkwardness.

The demeanor.

The sound sensitivity.

Maybe.

“What do you think?” There’s that quiet concerned tone again.

In my opinion, all major medical diagnosis suggestions should come from psychiatrists.

Should come from this psychiatrist.

She’s fantastic!

There’s no judgment.

There’s no doom and gloom.

There’s only presence.

“I don’t know. Do you think?”

My mind is half in the room with her and halfway through his future, playing out every possible reality.

Predicting what a diagnosis of autism would mean for him.

“We may be looking at more than depression and anxiety here.”

She says it bluntly.

She says it without complete conviction.

She is throwing out another possibility to explore.

She isn’t diagnosing. She is suggesting that I further investigate.

If I want to.

Kekoa was diagnosed with a major depressive episode and anxiety a few months ago.

After he had changed schools.

After he began being bullied at school.

After his dad had moved out of the house and to another city.

After we got divorced.

After the world as he knew it, fell apart and began to feel empty, and dark, and cold, and painful.

After he lost all of his joy and happiness.

After he began to loose hope. Hope in himself. Hope in the future, and the present. Hope in the people around him.

I watched my happy, energetic, 9 year old boy loose himself in a tumultuous sea of sadness, where he was beginning to sink because he could no longer swim.

“I may not cry on the outside, but my heart is a flood of tears.”  These were the words spoken by my son tonight at his therapy session.

Depression.

Anxiety.

And now possibly autism.

As I rode home, with my baby boy sitting next to me in the car, I began to process the information that I had just been given.

And I began to feel the exact meaning of the words just spoken by Kekoa.

I knew exactly how he felt because I too may not cry on the outside, but my heart was a flood of tears.

I was so sad.

I was so angry.

I began to question and feel everything that I felt when Oli was born.

Why? Why my child?

And in an instant I remembered the answer.

Because it’s the same answer that I found with Oli.

Why not my child?

We are not special here.

We are not invisible, indestructible, or impenetrable.

This is life.

There are no contracts, agreements, or guarantees. We get what we get and must accept what is.

Not what should be, or might be, or could be.

What is.

I know what to do with this.

I know that any diagnosis will never quantify, explain, or define my child.

He is who he is and I love who he is.

I will allow myself a few moment of sadness. A few moments of anger.

And then I will move on.

I will move on to tomorrow and do exactly what I am meant to do.

Which is to help my son.

My heart may be a flood of tears tonight, but I see the sunshine in tomorrow.

I never said it would be easy

29 Mar

I was honored to be able to present at the 2014 TAER conference again this year. This is the second time that I was able to speak.

Can you believe it?! Twice! What?! Are they crazy?! Did they hear my speech the first time? Do they remember the boxes of tissues that we passed around the room last time? Apparently I forgot about that part too because even I didn’t come prepared.

I’m a crier. I know. How can I still cry at a story that I’ve lived, written, and spoken about frequently?
Some things will never cease to be just a memory. I will relive the story of Oli’s birth and her early years every single time that I speak about it, for the rest of my life.

Yes. It has gotten easier. The pain is a little bit less with the passage of time. It’s easier now because I know that her story, my story, has a happy ending.

I know that I am able to relive those early moments, the ones that are burned in my brain, live them, feel them, talk about them, write about them, cry over them, and then go home and pick up my girl and realize how far we’ve come.

Writing about it and talking about it has actually become my therapy. My outlet for grieving and healing.

This will surprise the people who have read most of my story or seen me speak, but I used to never talk about how I felt about any of this. Never.

Fine was absolutely my favorite word and I was FINE! Don’t you know how fine I am?

I was fine, she was fine, we were FINE, people!! I would say this as my life was literally falling apart around me.
I would say it as the tears stained my pillowcase at night…
I would say it as my heart felt like it was shattering into a million pieces every time a new diagnosis washed over my brain and flooded the banks of my emotions…

I was fine.

I would say it to everyone.

Anytime a friend or family member would meet my gaze with worry in their eyes and a soft hand on my shoulder and ask “How are you?” I would respond with an outer persona that was not me. I would speak the word “fine” and my soul would scream out at me to reveal the truth.

I. Was. Not. Fine.

But I didn’t know how to tell anyone anything else. I didn’t know how to tell people that I was struggling because I thought that it would mean that I wasn’t a good mom.

I thought that because my life and my emotions didn’t follow the people’s stories that I’d read about online, you know, the ones that are like mine now, I thought that it meant that I was a terrible, awful mom.

Let’s be honest here.

My blog and my facebook page now? Would have made me feel like total crap back then.

I would read stories like mine with a disgusted feeling in my stomach because I didn’t feel any of the things that I feel now. The old me would have been so jealous and so envious and so….blah…about the new me. I was so caught up in my negativity and my own feelings of self pity that it would have killed me to read about a mom who just accepted her life after the birth of a special needs child.

Come on. I mean I was no where near acceptance. We weren’t in the same zip code. We weren’t even on the same continent.

I did NOT accept that I had a child with a disability.

I did NOT accept that my life had taken a turn that I wasn’t expecting.

I did NOT accept that I couldn’t fix it, change it, run from it, hide from it, bury it… live with it.

I didn’t accept that this was something that I was going to have to learn to live with.

I did not want to have to accept the fact that I had to accept the fact that I had given birth to a daughter with a disability. A blind child. A child with multiple impairments.

No. That was totally unacceptable.

So I would read about moms who shared their beautiful journeys to acceptance, except I never saw their journey. I only saw their destination and that destination was acceptance. I didn’t understand that they all had a story to tell about getting there.

I wanted someone to show me the precise steps that they took to just be okay with it all.

To be more than okay with it all.

To be happy.

What did they do?! Why won’t they just show me?! Can’t they just come over to my house, take my hand and walk me through it?! Why not? Why were they doing this to me? Didn’t they know that I was dying here?!!!

Of course they did, but now I know that no one takes a specific path. There is no right way to do this deal.

They couldn’t just walk me through it. I had to find my own way. I had to create my own path.

And as much as I felt like I was doing it all wrong back then, now I know that there is no wrong way either.

I wish that I had known that while reading the stories of acceptance and hope that other parents put out there, that they were actually planting little seeds in my brain. They were planting the seeds that would eventually grow into flowers along my path and allow me to find my way home.

I think that this is the other reason that compels me to share my story today. My heart physically hurts every time that I see another mom struggling. I see them and I feel their pain just like it was my own.

I wish that I had the magic to bottle up the way that I feel today. I wish that I could just give it to those moms.

But this is part of the beauty. It really is a beautiful journey even when it’s horrible and ugly and painful and sad.

One day, all of us are able to stand at the doors of our destination, look back on our journey, and then look another struggling mother in the eyes and say “I never said it was going to be easy; I only said it would be worth it.” (Quote by Mae West)

My Special Needs Mother Hat

25 Feb

I talk a lot about my journey to obtain my special needs mother hat. I don’t know why I use this term. I guess it just gives me a good descriptive picture in my head and explains a major role I play.

To me, this hat looks different than a mother hat. My mother hat fit well the first time I put it on. It was easy to wear, simple, elegant, and light. It was beautiful from the beginning and did not tear easily. When it did, I could take it off at night and stitch up any holes it acquired during the day. My stitching was never loose, came apart or was crooked. It always came back together nicely. It rarely fell off and never seemed heavy. I was proud to wear it and frequently showed it off. I enjoyed this new hat tremendously and was very reluctant to turn it in for my special needs mother hat.

When I got this hat it was WAY too big. It fell off all of the time. Sometimes it just blew right off my head. In the beginning I would forget that I had it and a big gust of wind would come along and POOF! Gone. I would have to go chasing it down the street. Sometimes I threw it to the floor in a moment of rage, frustration, or grief. And sometimes I just tried to leave it on the counter at home. I tried to pretend that I didn’t have it. It was extremely heavy. It had all kinds of straps, buckles, and ties attached to it that I couldn’t figure out. It had random flowers on it with names that I couldn’t pronounce. It was uncomfortable and became worn out looking. Rips and tears began to decorate the sides and no matter how hard I tried to stitch it up, my stitching never fixed the holes. They were loose, crooked and simply came apart by an unexpected tug in the wrong way. The whole hat would just fall apart. I would carry my hat in pieces back home and painstakingly try to put it all back together. At first it seemed destined to be big, ugly, uncomfortable, and prone to making me feel like an outsider. It seemed nobody had a hat that looked like mine.

After I wore it for a while, I began to notice other mothers whose hats looked like mine. They were worn and tattered, but had been repaired with beautiful hand crafted stitching and appeared loved and cherished. These mothers looked at me in my hat and smiled a knowing smile and pointed to their heads. “See. I’m proud of my hat. It may appear complicated and worn out to you, but to me it’s beautiful. Your hat will be beautiful too one day.”

Slowly I began to notice new things about this hat that I hated at first. I was learning to pronounce the names of the flowers on it and figuring out the buckles and straps. It wasn’t so big anymore and no longer blew unexpectedly off my head. It began to fit better as each day I grew a little more confident in my role. Every once in a while I still throw it to the floor, but now my reasons are different. It still gets ripped and torn, but I am learning to sew it back up and now my stitches hold it together. It doesn’t fall apart so easily and my stitches are straighter and stronger. I’ve learned to love each and every rip, tear, crease, and stain on my hat because each one has a story. A moment in time and a memory of where I have been and what I have gone through. It isn’t so uncomfortable now and it doesn’t make me feel like an outsider. Now it makes me feel like part of a group. A group of mothers with special hats and special roles that we love and feel honored to have. I no longer try to hide my hat. I walk out of my house each day with my head held up high, proud to show off my journey with my special needs mother hat.

As different as this hat was from the mother hat that I began with, it has begun to resemble the first quite unexpectedly. Yes, it still has all of those rips and tears. It still has those strange flowers on it, but the basics of the hat…are like the first.

What holds one together, holds the other. The hats are both made from the same fabric and are sewn with the same thread. What makes my special needs mother hat strong, is what made my mother hat strong to begin with.

The love I have for my children.

The two hats are not all that different.

Some days my special needs mother hat becomes too heavy or feels too broken to wear. I just can’t pick it up.
So instead? I pick up my first hat.

My mother hat.

As long as I remember that I am still a mother… I know that it’s okay. I know that I don’t have to feel guilty if I have a day or a moment that I just don’t want to wear my special needs mother hat.

When I feel overwhelmed, overtired, overworked, underappreciated,…I just remember that sometimes?

It’s okay to just be a mom first.

Instead of talking about it, let me show you.

20 Feb

Since I have been sharing so much lately about my son Kekoa and his recent sadness surrounding Oli and her seizures, I wanted to tell you about their relationship.

I could tell you about the moment when he first met her. The time that he immediately closed his eyes and started walking around the room with his hands out in front of him.

I could tell you that for some reason, my son knew that she was blind, even though he was only 17 months old and no one had told him.

I could tell you how he immediately fell in love with her and kissed her whenever given the opportunity.

I could tell you how much he loves her and protects her. How he defends her and supports her. How he believes in her and admires her.

I could tell you a lot.

Instead?

I’d like to show you…

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Kekoa and Oliana in June 2007 070

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K & O June 14

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K & O trailer3

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That was only a fraction of their first year together.

6 years later? Not a lot has changed.

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That’s why it really is a pretty big deal.

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.

It makes me really sad mom.

9 Feb

I got the call that I am always terrified to get when I’m away from Oli.

“Shannon. Something is wrong with Oli. I think I need to call an ambulance.”

My heart fell to the floor and stayed there until she was wheeled into the ER on a stretcher and I could see her.

“What do you mean? What’s wrong?” I asked as my heart raced, but my mind cleared.

“Well she’s breathing really funny. Like holding her breath and I can’t keep her awake. Here. Listen.” My mom, who had been home with her while I took my other two kids to a horse vaulting stable, put the phone up to Oli’s lips.
I hear a strange grunting sound coming from my daughter.

“She’s been doing this for a while now and it’s getting worse. When she falls asleep it’s better, but as soon as she stirs she does it again.

“Mom. Listen. Lift up her shirt. Can you see her ribs or her sternum as she breathes? Does it look like she’s sucking in?”

My mom quickly checks. “No. No I don’t see that.”

“Okay good. What about her lips? Are they pink or do they look blue?”

“They’re really pale. I just don’t feel right about this. I feel like something is really wrong with her. She just keeps falling asleep.”

“Mom. Do you feel like you should call an ambulance?” I ask calmly. Going into more nurse mode at this point than mother mode.

“I’m not sure. Maybe. Something is wrong with her breathing.” She answers. I can hear the fear in her voice.

“Okay. If there is even a question that maybe you should, I need you to call. I am at least an hour away and by the time I get there to check her, things could have gone dramatically downhill. My phone is almost dead. I only have about 10% battery left. I’m going to call Seth and tell him to go home right now. I’ll have him call you on the way. He should be there in 10 minutes. Hang up and call 911.”

“Okay.”

I hang up and quickly call my husband.

No answer.

I call again.

No answer.

Oh my god. My phone is going dead.

I shoot him a quick text.

‘Call me NOW.’

He calls back immediately.

“Seth. I need to you to go home right now. Oli is not breathing right.”

“I’m on my way.” He replies in a calm voice.

I start to tell him that I’m leaving the stable now and that I’ll be about an hour…but he’s gone. I’m talking to dead air.

That morning Oli woke up happy. My mom and I had plans to take all three kids down to a stable in south Austin where their horse vaulting team has a Barn Buddies day once a month to raise money. The kids get to come down, learn some tricks on the barrels, and then get up on the horse to practice them with an experienced horse vaulter.

After Oli got up on Saturday morning she fell back asleep right after breakfast. I sent my mom a text and told her that maybe Oli shouldn’t go. I thought maybe she wasn’t feeling very well. My mom decided that she would just stay home with her and that I would take the other two kids and our dog. Shaka had service dog training right after the kids were done riding.

When I left, Oli was playing happily with her toys.

Kekoa and Ginger had an awesome time on the horses. It was really great because they always watch Oli ride at hippotherapy, but never get to ride themselves.

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That morning of fun quickly turned into a nightmare.

This was not Oli’s first ambulance ride.

Not even her second.

Her first executive ride to the hospital was one of the absolute worst days of my life.

October 4, 2011 is a day I will never, ever forget. Never.

That morning I woke up next to Oli violently convulsing and gasping for breath. She ended up being intubated with a machine breathing for her for two days.

The next ride was August 26, 2012.

And the last was on Saturday February 7, 2014.

I’d like to say that this will be her last, but I know that it might not be.

Her seizures, any person’s seizures, are no joke. I know that lots of kids have them. Some have hundreds a day. Some are lucky like Oli and only have them once in a while.

It’s really all about perspective. I don’t know anything but what I know about Oli. Her journey is no more or less than anyone else’s. We only know the life we live so it’s important not to minimize or over exaggerate something that we have no experience in.

I get really uncomfortable when I meet someone and they say “I just don’t know how you do it?! I could never do what you do!”

Yes you could. Yes you would.

I find myself thinking those same things though when talking with my friend who has a daughter who literally can have 100 seizures per day.

How does she get through it? How would I?

But I don’t have to worry about that because that’s not our life. I can talk with her about it. I can tell her how extremely terrified I was to get that call. I can tell her how Oli wasn’t breathing well and how awful it was because I’m sure she had more than one seizure yesterday. Like maybe 3 or 4 or 5. (I don’t know because they were seizures that we couldn’t see.)

And you know what she says? Not “Well that’s NOTHING! You should be grateful it was only a couple. My daughter…” Blah blah blah.

Nope. She doesn’t say any of those things.

She says “Wow! How scary! Do you need anything? Do you want to talk about it? How can I help you get through this?”

She validates my reality.

She doesn’t compare it.

That is powerful.
So incredible powerful.

I hear people compare themselves and their struggles to other families all the time.
Why?
Why are we judging when we should be supporting?

I’m so lucky to have so many incredible families in my life who do just that.
They support Oli. They support me. They support my kids and my husband.

We desperately need support because scenarios like the one we had on Saturday, do not leave a family unscathed.

The words I spoke to my children in the van as we left the stable, will not soon be forgotten.

Especially by my 8 year old son.

“What’s wrong mom? Why aren’t we going to take Shaka to training?”

“Your sister is having trouble breathing and is on her way to the hospital. We need to go there now.”

He immediately becomes quiet.

My three year old, Ginger, does the exact opposite. She has a million questions.

“What do you mean? What is she doing? I’m hungry. Can we stop for lunch? Can I have a snack? Do you have any juice? Are we going to see Grandma now? Are we going to Shaka’s training? Where’s Oli? Where is she going? Where are we going again?”

Oh. My. God. Ginger.

Ginger is either the best person to have with you in a crisis or the absolute worst.

I’m leaning towards the worst. 🙂

It was good because she was distracting me with her 5 billion questions and it was frustrating because I was trying to figure out where I was going, who was going to take the dog, which hospital they were taking her to? Did my husband get home? Are they on their way? When was Ginger going to STOP TALKING!

I got a hold of my friend, Cat, who just happened to be at the stable with me.

“Cat. I need you to come get the dog. Oli is being taken to the hospital by ambulance. They’re taking her to Dell Children’s.” I speak rapidly into the phone.

“I’m on my way.”

Man I have some good friends and family.

I had so many people texting and messaging me, offering kind words, support, and offers to watch my other two kids. It was very very humbling to realize how many people were willing to drop what they were doing and help.

Once we got to the hospital Kekoa was even quieter and Ginger even more inquisitive.

Fortunately Cat got there as soon as I did and took the two kids before Oli was wheeled into the room.

We didn’t know what to expect, but I knew I didn’t want my kids to see her surrounded by hospital staff, talking, asking questions, and working on Oli.

My son has already seen too much in his short 8 years.

Once Oli got there she was breathing better. She was doing some breath holding off and on, but didn’t seem to be in distress. She definitely wasn’t herself. She was constantly falling asleep and wasn’t really moving at all.
If you know Oli, this is completely out of character. She is always going.

After we had been there a little while Cat asked if we could bring the kids in. Just so they could see that she was okay.

Unfortunately as soon as they got there a team came in to start her IV. My poor Kekoa was so flustered that when Cat escorted him back out of the room he grabbed my purse and tried to walk off with it.

After that, they didn’t come back in.

I can’t even begin to imagine what he must have been going through. I know what I was going through and it was awful. And I knew what was going on! He only knows that one of the times his sister took an ambulance ride, she almost didn’t make it back home.

Oli stayed at the hospital for about 9 hours. They ran a bunch of tests and then did an EEG.

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By the time they did it she was mostly back to herself. She was worn out and acting sick, she had been running a fever too, but she was aware of what was going on and awake. Once the EEG came back normal at 11 pm they said that, if we were comfortable, we could take her home.

We opted to go home.

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Oli was more than happy to be sprung from the hospital.

The verdict was seizure activity brought on by… we don’t know. A little virus maybe.

Seth had taken the kids to another friends house in the afternoon and then my mom went and picked them up so they could stay with her for the night.

Shaka stayed with Cat and his girlfriend Dubi.

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Yeah. He didn’t miss us at all. He is in love.

This morning my mom said that Kekoa was very tearful at her house.

We finally got him to talk about it when he came home.

“It makes me really sad mom.” He admits in a quiet voice.

He also said that he was really scared for Oli. Really scared.

Me too buddy. Me too.

It’s important that I never ever minimize his feelings.

I need to never compare, judge, or make him feel like he has to feel any other way, than the way he does.

As important as it is to me to have my friends and family validate how I feel…it is more important to me

that I validate my son’s.

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Where was my key?

9 Jan

I used to read blogs and find links on the internet after Oli was born about children with special needs. More specifically I looked for those words describing BLIND children with special needs. Blind. They had to be totally and completely blind or I couldn’t relate. They couldn’t be JUST blind either. They had to have other disabilities. Other delays, or I couldn’t relate. The children couldn’t be too much older, they couldn’t live in another country, they couldn’t be able to walk or crawl… or I couldn’t relate.
Looking back on it now, I just couldn’t relate to anyone.
I would find the differences in the people, circumstances, and situations so that I was left standing utterly alone, unable to find comfort in any of the sentences that I read on the screen.
Reading those words and seeing the hope and the progress as the parents of these children reveled in their accomplishments, left me yearning to find the key that opened the door to their secret world.
The world, in which people who believed in their special children and accepted them, lived.

Where was my key?

How do you learn about all of the differences in your child, how do you sit through evaluation after evaluation of disappointing prospects and yet still find the key to acceptance?
How do you get to that place?
I sought out those stories of the milestones these children met, delayed yes, but nonetheless met, and wondered if my girl would ever do any of those things.
I wasn’t sure that she would.
I tried to compare her to similar children (when I found them which was rare) and felt defeat after defeat as they surpassed her by miles.
They learned to crawl and walk and talk and when my daughter reached that same age? She just didn’t.
The remorse and regret and guilt of all the possible things that I could have done different or better or faster… It just crushed me.
When she didn’t do the things that I thought she should do, I felt like such a failure as a mother.
I had failed her.
I hated that feeling, but I just couldn’t make it disappear.
I met lots of doctors who, when asked questions of what she would do, responded with shadows of “might not”‘s.
I also met lots of therapists who replied to the same questions with cheerful “might”‘s.
I tended to drift and focus more on the might nots.
When I would try to discuss my fears of the future with people, and I did so rarely, they responded as people do.
They told me to believe that she would grow up normally. They told me that my fears were silly and that I shouldn’t think such things.
They told me to look on the bright side.
Easy to do when it’s not happening to your child.
In truth, they were well meaning people with good hearts who wanted to help me but were completely
clueless.
Sometimes it’s hard to talk to people like me.
People who, when in such a place of darkness, find fault with every well meant comment or upbeat possibility.

Where was that key?

As time passed I just stopped talking about it. I didn’t want to be the downer of the conversation wallowing in all of the shame I felt. The self pity, that I didn’t see as self pity, but most definitely was.
I couldn’t talk about the guilt.
Who do you tell when you have feelings like that?
God?
Ummmmm…. No.
God and I were definitely NOT on speaking terms after Oli was born.
How could HE let this happen to a child? To MY child more importantly.
My husband?
No.
I felt like it was all my fault and I couldn’t admit that to him.
I guess I felt that it was his fault too.
Like this was something that we had done to her. Something that shouldn’t have happened.
I couldn’t tell him that.
My friends.
No. We already talked about that up there^^.
My mom?
Nope. Not her either. Too much guilt. Too much shame.
What had I done to her very first granddaughter?
Sooooo… that left?
No one.
Except it didn’t really.
It turns out there were a few people that I would meet along the way that would help me to find my key.
People who had been in and out of my house since this whole thing happened.
People who saw mothers like me and children like Oli every single day.

They were the therapists who worked with my daughter.

Not all of them were warm and cuddly.
Not all of them were inviting.
Not all of them I could open up to.
But some of them… I could.
Some of them had a compassion and a keen sense of understanding for a situation that they had never lived.
Some of them didn’t even have children of their own!
But it didn’t matter.
For some reason they had the right tone of voice, they said the right words, they were silent when I needed them to be, and the outer shell that I had created began to dissolve.
It turns out that I met a succession of these therapists in the exact right time in my life where I was able to hear them.
I was able to be honest about my fears and my wounds and as I listened they began to heal me.

In the beginning I guess they couldn’t help me because I was so engrossed in putting on a good front. I was so focused on pretending to be strong that I never let my fear seep through the words of strength that I wove together.
I didn’t feel like I could tell anyone let alone a stranger!
I ended up learning that sometimes a stranger is a heck of a lot easier to talk with.
Especially a stranger that isn’t really stranger because they come into my house every week and watch me fold laundry (including my underwear that likes to fall out of the basket at the most I inopportune times!)
They watch my children bicker and me burn the dinner.
They watch my 3 year old run out of the bathroom naked from the waist down and listen as she recounts less than savory tales of our household.
Basically they just see us…as us.
They see me…as me.
Eventually it becomes very difficult not to open up to someone who sees you as you are.
It might have started with a simple question.
“So how are you doing with all of this?”
Followed by a quiet stare as I repeated my all too well known response to that question.
“Fine.”
It might might have started with that stare that bore through my soul.
That stare that unequivocally meant
“No really. I know you can’t be fine so how are you?”
I don’t really remember, but I know it started with them.
It started with them showing kindness and empathy and it started with a trust that developed between us.
As I allowed the door of communication to be opened, as I began to finally relate with people who understood me, they began to lead me down a path towards finding my key.
My key to peace.
My key to happiness.

My key to acceptance.

…to be continued.
First part of an upcoming speech on communication between team members.

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