Archive | Uncategorized RSS feed for this section

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…

HPIM1638

HPIM1638
HPIM1642

BabykoaBabyoli2

HPIM1639

HPIM1638

HPIM1645

HPIM1642

HPIM1643

HPIM1699

HPIM1697

HPIM1709

holding baby

Kekoa and Oliana in June 2007 070

HPIM1835

K & O June 14

HPIM1895

HPIM2010

IMGP0231_1

IMGP0228

HPIM1977

IMGP0558_1

HPIM2138

HPIM1972

IMG_0083_1

IMGP0557_1

IMG_0039_1

IMG_0044

K & O trailer3

IMGP0544

IMGP0540_1

IMGP0142

IMGP0498

IMGP0492

IMGP0459_1

IMGP0402_1

IMGP0510

IMGP0399

IMGP0391_1

IMGP0390_1

IMGP0351_1

IMGP0346

IMGP0598

IMGP0080

IMGP0079_1

IMGP0075_1

IMGP0072_1

IMG_0296_1

IMG_0187

IMG_0036

IMG_0033

IMG_0025

IMG_0027

That was only a fraction of their first year together.

6 years later? Not a lot has changed.

IMG_1076

IMG_1656

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.

IMG_1574

IMG_1585

IMG_1599

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.

IMG_1626

IMG_1627

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.

IMG_1636

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.

IMG_1622

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.

IMG_1656

IMG_1658

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.

THE MOTHER OF ALL MELTDOWNS- Virtual Blog Tour

7 Nov

1381903_454435804667668_154638824_n

I recently had the honor, and I do mean honor, of being selected to participate in The Mother of all Meltdowns virtual blog tour. (Click on the title to purchase the book on Amazon.) Author Crystal Ponti has joined forces with 30 other fantastic, well known bloggers to recount their most memorable mother meltdown moments. If you’re a mom, if you’re a friend of a mom, a dad, if you are the child of a mom…you NEED to read this book. I found myself so totally absorbed within the first few minutes of starting it that I was surprised when my 3 year old daughter suddenly stuck her nose in front of my Tab, looking up at me with concern on her face, and asked why there were tears in my eyes? “Are you crying mommy? Why are you laughing and crying mommy?” She was completely confused. “Just reading a good story Ginger.” “A good story” is a total understatement. It was like these women had wandered, unbeknownst to me, into the confines of my head. Like they had been sitting front and center to the stage that had held some of my meltdowns. They had been where I had been. Of course, my 3 year old wouldn’t understand all of THAT. I couldn’t tell her “Well Ginger, see you kids drive mommy crazy sometimes and sometimes all you can do is sit back and hysterically laugh to the point of tears at the fact that you are not the only one being slowly driven to insanity some days.” “A good story” was the short and sweet answer. Satisfied, she wandered away and I was left alone for 20 more minutes to read a few more chapters. In my opinion, if you can laugh and cry within the first few pages of a book? You have gotten all of your moneys worth and more. There is no such thing as the perfect mom. Some days our houses are messy, our dinners are over cooked, okay… burned…I was trying to be nice there, our clothes are pj’s, and the laundry may be rewashed 3 times before making it into the dryer. Some days…mothers have meltdowns. But no matter what, our children are always loved.

As part of the virtual blog tour some of the authors have complied a list of Q & A’s for their readers.

What color is a meltdown?

“Black…by the time I am in a full blown meltdown mode, I feel the depths of despair. I feel like I just can’t fix it.” ~ Michelle Nahom, A Dish of Daily Life

“Clear. Like the color of vodka.” ~ Danielle Herzog, Martinis and Minivans

“I would say that depends on the nature of the meltdown. If it is an angry meltdown, it would be bright red. If it is a sad meltdown, then deep blue. Sometimes, there is even a meltdown born from panic. That one would be neon green.” ~ Lisa Witherspoon, The Golden Spoons

What comes to mind when you hear the word ‘meltdown’?

“Puddles…big puddles of kids (or moms) on the floor. You have to be very careful about stepping around the meltdown or you might get caught up in it. Kinda like quicksand, I guess.” ~ Rabia Lieber, The Liebers

“Someone curled up in the fetal position hiding in a corner. Or so I’ve heard.” ~ Jennifer Barbour, Another Jennifer
“Yelling and crying and ending up in a big heap of someone that you don’t recognize as yourself.” ~ AnnMarie Gubenko, Tidbits from the Queen of Chaos

What was your story about?

“My story was about the holiday havoc that went down in history. My son was sick, but we brought him to my parents’ house to celebrate Christmas anyway. Little did we know that we were about to set off a massive family flu pandemic. I was so stressed out from taking care of everyone that I ended up fainting! (One of my friends actually thought I made my story up…but I swear on the lives of my children, it’s 100% true. Sad…but true.)” ~ Marie Bollman, Make Your Own Damn Dinner

“My story is about how an ordinary day can go off the rails and head towards a meltdown before you realize it. Starting out with locking my keys in the car, and ending with my kids not doing the thing I’ve asked them (nagged them??) to do constantly. Meltdown city!” ~ Angela Keck, Writer Mom’s Blog

“It’s what REALLY happens when you find out your pregnant. From taking four pregnancy tests at once, to then driving directly to the OBGYN’s office holding my pee sticks; it was the meltdown before the baby was even born.” ~ Danielle Herzog, Martinis and Minivans

What did you like best about working on The Mother of All Meltdowns project?

“Hands down, my favorite part was getting to know all of the other collaborators and feeling less alone in my insanity!” ~ Rabia Lieber, The Liebers

“I loved being part of a group of terrific authors, bloggers and mothers! We come from all over the country and have different kinds of blog, yet we all have so much in common with each other, including our meltdowns.” ~ Ginny Marie, Lemon Drop Pie

“I loved putting together my story and realizing that it was just one part of a much bigger project. The most fun part of the project was when I got that first draft and read through all the stories and really got a sense of how it was all coming together.” ~ Karen B., Baking In A Tornado

What advice do you have for other mothers who melt from time-to-time?

“The next time you’re in a long check-out line, look at the person in front of you and know they’ve had a meltdown. Look at the person behind you and know they’ve had a meltdown. Go home and reread The Mother of All Meltdowns. You are not alone.” ~ Karen B., Baking In A Tornado

“Don’t pretend you can handle it all. If you’re stressed, talk about it. Motherhood is the toughest job there is. We can only get through it with the support of others who are going through it too. It’s okay not to be perfect, it’s okay to lose your cool, it’s okay to talk about it. We’re all in this together.” ~ Marie Bollman, Make Your Own Damn Dinner

“Meltdowns happen. I remember my mom (and dad) having meltdowns, and I do the same thing they did after blowing up at their kids. After we calm down, I take my kids in my arms and we cuddle, read a story, say we’re sorry and that we love each other.” ~ Ginny Marie, Lemon Drop Pie

What is your favorite story in the book? Why?

“Oh, there’s no way I could pick a favorite. I’d probably pick a different one depending on my mood throughout the day. That’s the beauty of the book. There are so many perspectives. At least one story will speak to you at any given time!” ~ Jennifer Barbour, Another Jennifer

“Do I really have to pick just one? I truly found myself nodding along with each one. Even if it was an occasion, like a teenager getting her driver’s, that I haven’t experienced yet, I still could understand the emotions. If I had to narrow it down, though, my two favorites were probably “A Dresser Full” by Ginny Marie (because I have TOTALLY been there with my daughter, too) and “The great Powdered Sugar Fight of 2007” by Marcia Kester Doyle (because it is a more joyful meltdown that actually sounded kind of fun!).” ~ Lisa Witherspoon, The Golden Spoons

“Let’s Pretend This Never Happened by Jennifer Barbour of Another Jennifer is one of my favorites because I can relate to trying to stay calm in public but then unleashing the frustration the minute you’re alone. Plus, I love a mom that admits she dropped the f-bomb since I’ve uttered that very word in a meltdown or two.” ~ AnnMarie Gubenko, Tidbits from the Queen of Chaos

Why should people buy the book?

“It’s freeing in a way. It makes you realize you aren’t alone. When you lose it, you feel like you’re the only one. But the reality is, we all have our moments. When we have a meltdown, it’s not just one thing that sets it off…it’s usually a series of events.” ~ Michelle Nahom, A Dish of Daily Life

“These stories could be shared by your best girlfriends sitting around a coffee shop and that’s exactly how it reads. It feels like you are sharing your worst moments with a group of women who totally get it. We could all use a little community in our lives and the feeling that we’re not on our own.” ~ Melissa Galileo, Completely Eclipsed

“To read talented writing! And just as importantly, I think if you are a parent, or you’re going to be a parent, or you had a parent, (so that makes everyone) you will be able to relate to these stories. Each one is unique and there are obviously many incidents that set us off into the land of meltdowns. It’s nice to get perspective because the 30 writers of our book tell very different stories, and each one is powerful in its own right.” ~ Tamara Bowman, Tamara (Like) Camera Blog

If you could associate any one song with the word meltdown, what would it be and why?

“I would choose “I’m Sexy And I Know It” – I have to keep telling myself that when I have a Goldfish stuck on my ass and spit up in my hair.” ~ Danielle Herzog, Martinis and Minivans

“I never thought about a song for meltdowns, first one that comes to mind is Hysteria by Def Leppard because a meltdown is definitely becoming hysterical! (And you’re welcome because I’m sure the song is now stuck in your head…)” ~ Angela Keck, Writer Mom’s Blog

“I can’t help thinking about “End of the World” by R.E.M. Just when he starts going off and singing all of those lyrics very fast and even if you Google the lyrics, you can’t quite repeat what he’s saying? That’s totally it for me.” ~ Tamara Bowman, Tamara (Like) Camera Blog

What made you want to contribute to The Mother of All Meltdowns?

“I think in some ways, it allowed me to look back on that time with fresh eyes and see what I learned from it. I think getting away from the stress would have been helpful for me. It’s not as if I didn’t have the support. My in laws live next door, and they were a tremendous help. But I was in a tunnel…my stress level was over the top at that point. Going through this also gave me a new respect for how precious life really is.” ~ Michelle Nahom, A Dish of Daily Life

“Honestly, I was a little intimidated at first because I wasn’t sure if I wanted to share my worst moment! What would people think? Then, I realized that I would love to read other mothers’ real stories of the challenges of motherhood and how it overwhelmed them sometimes. The great part is that we also share how we overcame the meltdowns. Being a part of such a talented group of writers was also a no brainer!” ~ Jennifer Barbour, Another Jennifer

“Several things made me want to contribute. For one thing, when I saw the list of others who would be contributing, I knew I was in excellent company and felt honored to be included on the project with them. I also liked the idea of the project – sharing our worst moments; laughing at ourselves a little, and, hopefully, offering some comfort to other mothers. Finally, I won’t lie – the knowledge that something I wrote was actually going to be published for the whole world to read was incredibly exciting (and it still is!).” ~ Lisa Witherspoon, The Golden Spoon

What’s next for you?

“I’ve been working on a couple of articles for Queen Latifah’s website, and one has been published already. Another story of mine will be in the book Chicken Soup for the Soul: The Dating Game, coming out in December. And of course, I’ll be writing on my blog, LemonDropPie.com. If Crystal has a follow-up project for The Mother of All Meltdowns, I’m in! It has been such a pleasure to be a part of this book.” ~ Ginny Marie, Lemon Drop Pie

“I’m writing a memoir about the letters my grandmother and I wrote to each other for over a decade. It’s the story of my life weaved through our correspondence. It’s her words of advice and wisdom she shared with me during my clueless thirty-something years of life.” ~ Danielle Herzog, Martinis and Minivans

“I’ll just keep muddling my way through motherhood and blogging about all my misadventures at Make Your Own Damn Dinner.” ~ Marie Bollman, Make Your Own Damn Dinner

Eme’s Army: Fight for Sight

30 Sep

Oli was recently given an amazing opportunity to work with another special needs child on a campaign by a company called Paper Clouds Apparel.

Paper Clouds sells t-shirts, hats, sweatshirts, hoodies, and totes featuring the artwork of special needs children. Oli has her handprint heart on two different t-shirts and a tote that is now available for purchase. She is featured alongside another child named Logan and together they have some incredible things to choose from.

Paper Clouds Apparel employs special needs adults AND they donate 50% of the proceeds to a charity that we choose. We chose http://www.emesarmy.org. Emerie is a little girl who needs our help to get her eye sight back. Please visit http://www.papercloudsapparel.com and check it out!!

“The Cause (Sep 30 – Oct 13):

Eme’s Army
Eme is 6 years old and she is being robbed of her sight by CRB1-LCA, a very rare genetic disease. Eme’s Army, made up of supporters and volunteers like you, raise awareness of childhood blindness and fight for those like Eme. CRB1-LCA has no treatment. A gene therapy clinical trial is being conducted for RPE65-LCA right now that is working and is giving blind kids like Eme their sight back. By replacing the mutated/broken gene with a good copy of the gene, blind kids can see again. It is a fight against time. If too many of their retinal cells die, the cure in clinical trials will not work. So please join Eme’s Army and help them FIGHT for SIGHT! All money raised by Eme’s Army funds research through the Curing Retinal Blindness Foundation (CRBF). An all volunteer organization, CRBF was co-founded by Emerie & her family to stop CRB1-LCA.” -Quote from http://www.papercloudsapparel.com

I can’t even begin to describe what this means for Emerie and her family. Imagine having a child go blind and then find out that there may be a way to treat it…it’s beyond incredible.

I would do ANYTHING if there was a way for Oli to see.

Anything.

I may not be able to help Oli get her vision back, but I can help Emerie in a small way.

What an opportunity. What a privilege it is.

It’s a privilege not only to work with Eme’s Army, but also to work with a company like Paper Clouds Apparel.

What they are doing for the special needs community is remarkable. They are making a difference in the world. They are making it better and more accepting and more “normal” for kiddos like Oli.

That’s something that I am extremely proud to be a part of.

If you can, please visit their website or their facebook page.

Share this campaign with your friends. Let them know that they can help too! I never ask you guys to share anything, but this is important. The more money we raise the better chance Eme has of seeing her family again.
You don’t have to share it from here. Share it from Paper Clouds Apparel. It doesn’t matter how, just tell people about it.

Thank you!

Here are a few of the shirts to choose from:

emes5

emes6 (1)

emes7

emes8

emes10

emes9

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.

The Formerly Hot Housewife

weight loss, healing, and new self discoveries

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.

Mom Rants and Comfy Pants

Ramblings From a Veteran Mom Who Hates Skinny Jeans. Ever Feel Like You're Swimming Upstream?

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.com/

Motherhood and Coastal Living

%d bloggers like this: