Something is wrong with Oli. Part 2: What was happening?

11 Feb

I got a text from Oli’s dad a few hours later around 10am saying “She’s getting the full work up- Covid and flu test, CT scan because her tummy is super swollen and hard. Blood work and even a catheter.” I continued working that day and then took a break, heading into my front yard to begin putting up my outdoor Christmas decorations. I began putting up my Christmas decorations. I can’t believe I was so oblivious. As my little girl was lying on the uncomfortable, hard surface of an ER cot, fighting for her life, I was prancing around my front yard putting together Rudolf and blowing up a 9ft gingerbread man. If I could, I’d go back and punch that girl in the throat and tell her to get her ass in the car immediately! I was an ignorant, naïve person who thought nothing bad would ever happen to me or my family.

I was wrong.

The first few calls that I got from Oli’s dad made it sound like the hospital didn’t seem too sure about what was going on, but it didn’t seem like anything was too bad. I continued to go about my day. He said they had decided that they were probably going to admit her to the medical floor there at the Midland hospital. They were worried that there was something going on with her stomach. A little while after that I got a call from him saying that they didn’t think they could treat her in Midland and would be sending her to a children’s hospital in Lubbock. About 30 min after that update I spoke to a nurse who was taking care of Oli in the ER. Her dad had told the nurse that she usually goes to Dell Children’s hospital in Austin and wondered if they could transfer her there so she’d be closer to home.

The RN got on the phone and very candidly said to me “Look, she’s really, really sick. I’m not sure she would make it all the way to Austin.”

Not make it to Austin? As in she may not survive long enough to travel to Austin?

No, no, no, no, no. That can’t be what she meant. No way.

Did I ask her that question? What do you mean “she may not make it?”

No. No I did not ask that question. Why did I not ask that question? Why did I not hold her hostage on that phone and demand that she tell me exactly what was wrong with my daughter? Clearly I was not getting the full story. I don’t think her dad understood what was going on with Oli and he definitely could not relay and kind of useful medical information to me. It was like I was stuck in a dark room fumbling around, unable to find the light switch, but unwilling to ask the person with a flashlight for help.

I’m sure deep down I knew what she meant, but clearly at this point I was so far into my denial I just said “Ok. Get her to where she needs to be NOW!”

I also tried to rationalize that statement by telling myself that the nurse was just over reacting. I thought they were probably just freaking out because she was a kid, plus she has special needs so they’re just super uncomfortable with her and wanted to get her out of there and somewhere else close, fast.”

I still had no clear idea what was wrong with my daughter. No one was giving me any ideas other than her stomach was distended and hard and she was “really, really sick”. I think it was at this point in time that I began thinking it was a bowel obstruction and sepsis. I felt my own heart rate and blood pressure raise as I text her dad “Did they mention anything about a bowel perforation?” A bowel perforation is a life threatening emergency and is where the contents of the intestine spill out into the abdominal cavity causing massive infection and requiring immediate surgery. A bowel obstruction can ultimately cause a bowel perforation if not treated. He replied “no bowel perforation”. That was good. My heart rate slowed a little and I felt relieved that at least she didn’t have that. At the time I was thinking a perforation would be the worst case scenario. I replied “Then what made them decide to transfer her out rather than just admit her there?” He responded “They didn’t feel like they had the expertise to handle her.”

Yep. I was right. They were just uncomfortable and trying to get her out of their ER. It’s not that bad. My heart rate and blood pressure immediately went back to normal and I continued stringing lights around my trees and blowing up inflatable snowmen and Santa Clauses.

And off they went. They wanted to fly her from Midland to Lubbock but there was no flight transport available. I didn’t know that until later. There are so many things that I didn’t know until later.

My very, very sick little girl then had to ride 2 hours in the back of an ambulance. By the time they got to the ER her heart rate was 200 and her blood pressure was 170/110. Her dad called me when they got to Lubbock and said that nothing was really happening, they were still waiting in a room. I kept thinking that I was missing something. How could the staff see her vital signs and not do anything? I was still so confused. I think that confusion kept me from panicking. Surely if she were that sick and if those numbers were correct the ER staff would be responding to her, not making her sit in an ER room alone with her dad. That can’t be right. What was happening? Maybe I should wrap up outside. I began lugging the rest of the boxes of Christmas decorations back into my garage and traded them for a suitcase.

Finally at 4:53pm I got a text from him saying “Dr. Relves (a pediatric ICU doctor) is handling the business. I’ve got 15 people in here and her heart rate has dropped 50 points. We are having to intubate her to treat.”

Intubate her? Wait, what? We went from a possible virus, a swollen tummy, maybe a hospital admission and then an overreactive nurse all the way to “intubate her”. The room went fuzzy. What was happening?

After I read that last text my brain went into overdrive and I literally just started throwing my toiletries and clothing into a suitcase. I had to get there NOW.

I quickly sent him a response. “If you get to a place where I can be updated by a doctor I’d really appreciate that. I don’t have a clear clinical picture of what is happening.”

What was happening to my sweet girl?

Tags: , , , , , , , , , , ,

“Something is wrong with Oli.” Part 1: The beginning

10 Feb

It’s been such a long time since I’ve taken the time to sit down and tried to get my thoughts down on a page. So much has changed in the last nine years since I’ve focused on this blog (which, my teenager tells me “Mom, nobody blogs anymore”). And it has certainly changed drastically in the last three months. Three months ago I was living in a world where, although it was chaotic, was very comfortable and predictable. For the most part, I knew where each day would begin and where it would end. On November 22, 2023 that comfortable, predictable life changed forever.

My kids were in Midland, TX visiting their dad for Thanksgiving break. This was a Wednesday, the day before Thanksgiving, and they had been gone since the previous Friday. At 8:30am that morning I got a phone call from Oli’s dad. “Something is wrong with Oli.” were the first words out of his mouth.

I had just sat down at my computer to start working. Back in 2020 I began working for an Organ Procurement Organization called Texas Organ Sharing Alliance. I was hired as an Organ Recovery Coordinator (ORC) and took care of people and family members of people, who made the incredibly selfless decision to become organ donors. I worked with the donors from the time they were declared brain dead and their organ donation registry went into effect or when families decided to withdraw care on their loved ones and made the decision to give the gift of donation, until we finished in the operating room and the procured organs were on their way to the transplant hospitals and the recipients. Working as an ORC changed my life. The world of organ donation is such a different world and completely different from the type of nursing that I was used to doing. Although we take great care of our donors and they are our main focus as our patients’, we also have other people to think about as we make some difficult decisions on how to manage their care. We also have to think about the potentially eight other people who may receive this person’s organs. It’s also a different side of healthcare. Even though I was working as a nurse in an ICU, I was not an employee of the hospital. I was a member of the hospital’s healthcare team for this person, I was also not, because I was a third party. I got to speak extensively with the families of these patients and really got to know about their experience during this extremely tragic time. I also spoke extensively with the hospital care team and heard a lot about their interpretations of the family dynamics. I say “interpretations” because that’s really all they are. They are viewing that situation through their doctor and nurse lenses, not as a friend or family or confidant, but strictly though the eyes of a professional. I did not know how cloudy those lenses can be. Working as an ORC I got to see the vast discrepancies in these family members experiences and how they are viewed by the healthcare team. What a doctor or nurse may view as controlling, bossy and unreasonable, can really just be a family member who is just trying to manage the situation and juggle all of the healthcare balls that are up in the air of a person lying in an ICU. Trust me, I learned that there are many, many balls to juggle. (I will explain more in detail later.) Although I had all of these past experiences from working as an ORC, on that day, November 22, 2023, I still was not fully prepared to juggle them with the grace and confidence that would be required.

So on that morning I was sitting at my computer on a Teams meeting. I had transitioned out of being an organ recovery coordinator and began working remotely in the quality department about 2 years ago when my mom fell and broke her hip. The fact that I was not working onsite, in the hospital as a nurse full time, was such a blessing. Two years ago when I had to leave the ORC role, I was so disappointed and sad. I loved working as a coordinator. It was fun and so rewarding and I worked with such a great group of people. Little did I know then, this role change would save me. I believe that God puts us in the exact spot that we need to be in and when we need to be there. If I had not had a remote job, if I had not had that job for the length of time that I did, if I did not have the experience that I did, I would not have been able to do what needed to be done for the following months after that Thanksgiving morning.

This was my last picture of Oli before Thanksgiving. Pictured from left to right: Ginger (Oli’s little, not so little anymore, sister), Oli, and Me.

“Something is wrong with Oli”. Although looking back at it now with the luxury of 20/20 hindsight, I want to tell you that my stomach immediately dropped and I just instinctively knew that it was something very, very wrong. That’s not what happened.

“Does she have a sore throat? Ginger and Keely just got over a virus where their throats were really sore.” was my initial response.

He said he didn’t know but he thought it might be serious. Her dad told me that she had not been eating the last two days and had been making strange movements with her mouth. She also had not slept at all the night before and had lain awake, periodically yelling in her bed. He also felt like she was breathing really fast and her heart rate and blood pressure were high. He wanted to know if I thought he should take her to the ER. The ER? I was still confused and didn’t grasp the seriousness of the situation. I still just thought we were dealing with some kind of virus and sore throat. Why would her blood pressure and heart rate be high? Was their machine broken? Alarm bells still were not going off. I think it’s probably a reaction that a lot of people would have with a 16 year old child who never had any serious health problems. However, I still feel shame when I think of that moment.

I should have known.

Oli and I have such an incredible connection. I wake up in the middle of the night sometimes, even when I can’t audibly hear her on the baby monitor, and go downstairs to find her lying awake. It’s like I just know when she needs something. This connection would serve us well in the following months, but I did not seem to be able to tap into this super power on that particular morning.

She’s breathing fast?

“Facetime me so I can look at her breathing” I told him.

We started the video and finally the alarm bells began to ring. She looked horrible. Her color was off and she looked like she was barely conscious.

“Lift up her shirt. I want to see her breathing” I demanded.

When he lifted up her shirt those alarm bells turned into blaring, deafening sirens. Her stomach was absolutely huge. It was way bigger than I’ve ever seen it. Oli does suffer from constipation so I thought maybe she was just having a bad case of constipation. Although it shouldn’t cause the color change. And why did she look so bad, like she couldn’t stay awake? Maybe she was just finally drifting off after being awake for 24hrs. The questions were spinning through my mind followed up swiftly by logical explanations. This couldn’t be serious. Oli’s so healthy. I’m sure there is an easy, non emergency explanation for what is happening here. Serious stuff doesn’t happen to my girl. She’s invincible. I was not panicking. She was going to be fine.

“Yes. I think you should go to the ER. Just to be safe.” 

He hurriedly ended the call, telling me that he would call me as soon as he had any news. He had a way more clear and serious grasp of the situation in that moment.

This is the next picture I would see of my indestructible girl.

To be continued….

Tags: , , , , , , , , , ,

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.

Tags: , , , , , , , , ,

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.

Tags: , , , , , , , , , , ,

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.

Tags: , , , , , ,

The page that I’m on

11 Dec

Some days I look at her and I can’t believe how lucky I am.

Not everyone has an Oli.

Some days I look at her and I can’t believe how lucky she is.

She’s not sick. She’s not in the hospital. She’s not hooked up to any machines. She’s alive.

And some days just the fact that those are my blessings, makes my stomach turn.

It still feels like a rollar coaster ride some days. A lot of days. But not as many as before.

I can look at her now and most of the time not compare her to her friends. To her classmates. To the kids who were supposed to be her classmates.

Every once in a while I’ll get a glimpse of the little girl who I thought she would become.

Sometimes it’s in a photograph. Sometimes it’s in a dream.

Every time it makes me lose my breath.

Like someone just punched me in the stomach and I can’t quite get enough air into my body.

I saw a picture once of Oli portrayed in a book as a ballarina. She was smiling at the camera; looking at the camera. She was beautiful in that picture. Such a perfect little seven year old girl, dressed up in a tutu, posing for a picture. I can’t look at that page in the book. That’s not my Oli and if I start imagining and pretending it is… I will grieve for the loss of that little girl all over again.

I don’t want to lose that little girl all over again.

And some days… I just do.

Some months she will progress so much. She will speak a few words, take a few steps, stop stimming so much… and I will begin to believe that she will make it. That she will become the little girl that grazes my dreams every once in a while.

But then she’ll stop.

She always stops.

And then she’ll go backwards.

And then I lie awake at night and wonder what I did. What did I do? Did I not praise her enough? Did I not do enough at home? Was there some therapy that I should have looked into? What would have made the difference this time? What could I have done to propel her forward? To keep her where she was and not keep falling behind.

I think about that for a few days and then I remember.

This is Oli

This is who she is.

At some point after she was born I stopped agreeing with other parents who told me that she was going to be okay. And by “okay” they meant that she would catch up to her peers.

I think that maybe they believed it.

I probably believed it too.

Or maybe we were all just trying to make me feel better.

Now, no one tells me that she will catch up. No one tells me that she will be okay. At seven years old, no one believes it anymore I guess.

I miss how it was before.

Tonight I sit at my computer trying to figure out how I’m going to schedule ALL of her therapy sessions that she gets now.

Occupational therapy

Physical therapy

Speech therapy

Music therapy

Massage therapy

Aquatic therapy

Hippotherapy

I start to question just what it is that I’m doing?

What am I doing?

Are these helping her? Are they helping us?

What are we doing?

I fight and I fight and I fight.

I research different therapies and teaching techniques. I go to ARD’s at school and fight for more services.

I fight for her home therapy sessions.

Her home PT cut her therapy in half.

And I fought.

And I lost.

I lost that one. She doesn’t get as much home physical therapy as she used to and I’m pissed.

Don’t they KNOW how much she needs it?! Don’t they KNOW that she is almost walking independently? Don’t they KNOW?!

Yes. They probably do know. They probably know what I am reluctant to admit.

That all of these things are just not helping like they used to.

That Oli has come as far as she will come right now.

So what do I do?

Do I give up? Do I cut back?

Do I sit and hold and hug and kiss my daughter more? Do I do all of the things that normal families do with their children if they’re not in hours and hours of therapy sessions?

How is this affecting my other children?

What does Oli’s schedule do to them?

They never complain. At 9 and 4 years old, her brother and sister have not once, ever complained.

If you ask my son if he ever gets jealous of Oli’s attention, he just looks at you like you’re speaking another language.

Trust me, I’ve had this conversation with him.

“What do you mean mom? Oli needs help.”

But as their mother, at some point, I have to stop and consider us as a whole family supporting each other.

Not all of us supporting Oli.

But how can I look at this amazing little girl and not offer up the whole world for her?

How can I look at her and see just how far she really has come and not want to do more?

How can I get access to all of these wonderful therapies and say no?

What if it helps?

What if it works this time?

What if she begins to walk and talk?

What if I stop and she never does? Was it because we didn’t do everything?

I’m not sure, at this point, that I can live with the thought of not doing everything.

So…If you ask me what it feels like to be a special needs parent I will tell you this,

It feels like you are reading an amazing story with excitement and joy and suspense and so much love. You get to the last chapter because you just know that it is going to be the best ending ever….

And the entire last chapter is missing.

It’s just not there.

You have so many questions. Did she speak? Did she walk? Did she go to the prom? Did she have a best friend? Did she ever play with her brother and sister or learn to ski or go fishing or read a book or even learn the alphabet?

You don’t know.

You’ll never, ever know.

Until one day you stumble upon an old, threadbare copy of that same book sitting on the back shelf of some dusty, second hand book store.

You pay $1 for the copy and rush home to read that final chapter, only to realize…

That the ending never really mattered all that much.

It was the journey to the end that is what made the story.

So that’s how we live here.

We live the journey and not the destination.

I live my life one page at a time.

I live my life knowing that the last chapter is missing.

And I try to make the best of the page that I’m on.

Tags: , , , , , , ,

I Know.

18 Apr

I don’t know why I still feel the need to read through every new doctor report that I get about Oli. Especially when they are brain scans like MRI’s and EEG’s.

I mean, I know what they will say. I know how they will make me feel. I know that by the time that I reach the end of the report, I will feel that familiar heartache, sadness, emptiness, and hopelessness that I always walk away with.

I know that it will take me right back to all of those feelings that I felt, and ran from, in the beginning.

I don’t know why reading certain words about her makes me feel the way that it does.

I know that she is cognitively delayed. This is nothing new. I do know that there has to be changes in her brain that make her unlike other children her age.

I know that there are physiological reasons why she cannot dress herself, go the bathroom by herself, brush her teeth, talk, walk well, control her emotions…

I know all of these things, and yet I was still rocked and shocked when I read the words “static encephalopathy” on her latest EEG report.

Static encephalopathy?

Brain damage?

Huh?

My daughter doesn’t have brain damage. You, madam neurologist, are mistaken.
I googled the term “static encephalopathy”. This new, ugly label that you included in my daughter’s EEG report.
I googled it and I am totally regretting doing so. Although it didn’t really change anything. I already knew what those words meant.

Permanent brain damage.

Just seeing it written, actually written down, having been officially diagnosed, was enough for me.

Why did I have to read about it further on Google?

And why did the doctor not tell me herself that she suspected this?

Did she not know, that I didn’t know, that this is what they labeled her as?

Because I didn’t.

I didn’t know.

I just thought that she was delayed.

Just delayed.

I always think that it is a possibility that she will be able to catch up.

Maybe not completely. Maybe she would always be unique, but aren’t we all?

Did they have to go and write down, WRITE DOWN, that she has permanent brain damage?

Don’t they even care about my feelings?

Shouldn’t this new label have required an actual sit down with the doctor?

Shouldn’t an official diagnosis of “static encephalopathy” require a meeting with my family to explain what this means for my daughter? Why do they have to be such assholes and write down something like that in a report?

The only reason that I was able to read it was because I requested all of her records for this Medicaid waiver program that we’re trying to get her on. I wasn’t mailed a copy or given this piece of paper upon discharge from the hospital.

Now I sit here, with my daughter sitting beside me, tears pooling in my eyes, and whispering “I’m so sorry” once again.

I’m so sorry Oli. I’m sorry that this happened to you. I’m sorry that this is something that makes your life more difficult. I’m sorry that I had to read this ugly label and feel sad for you for a little while. I’m sorry that I had to look into your beautiful face, put my arms around you, kiss your neck, and let you feel my tears as they dripped down onto your shoulder. I’m sorry that I can’t tell you why I am crying.

I will make you the same promise that I have made to you since the day you were born.

I will NOT let this define you.

I will NOT let this hinder you or discourage you or slow you down in any way.

I will NOT let doctors or therapists or teachers read this about you and let them make decisions about your future based on what a piece of paper says.

I will make sure that they KNOW that this is NOT who you are.

I will make sure that they see everything that I see.

I will make sure that the world treats you the same as everyone else and in most cases…better.

Because you are my special little girl. You are capable of achieving any dream that your heart desires.

It doesn’t matter what a piece of paper says.

This…

I KNOW.

Tags: , , , , , , , , ,

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)

Tags: , , , , , ,

What’s wrong with her?

8 Mar

I posted on Facebook earlier tonight that we met a very nice young lady while eating dinner at Chili’s. She wanted to come over and say hi to Oli. While it was very nice of her to come up and ask questions about Oli (I’d much rather have someone ask rather than gawk) she did say something that I just can’t easily forget.

The more that I’ve thought about it tonight, the more it’s eating away at me. And while I don’t talk about things very easily, I write about them very easily so here we go…

The first words out of her mouth after “Hi. Can I ask you a question?” were “What’s wrong with her?”

Oh my god. Would you like me to serve you my heart on a plate lady? Since you know. You just ripped it out of my chest and all.

What’s wrong with her?!!

Nothing! Nothing is wrong with her! Everything is right with her!

What is wrong with your son? Why was he screaming at the top of his lungs the entire meal?

No. No. Rest assured. I did not say any of those things.

Why?

Because I’m nice. Because I don’t like to hurt people’s feelings. Because often times I let myself be hurt rather than risk hurting someone else.

I know. Who does that?

I also didn’t say any of those things because this woman really did have honest, pure intentions. She didn’t mean to hurt my feelings. Or my husband’s feelings. Or my children’s feelings.

Or more importantly…

Oli’s feelings.

She said that she had a cousin who was autistic and thought that Oli probably was too. She was a very sweet, nice woman and even though she asked that awful question, I’m still glad that she said hi. I’m still glad that she wanted to say hi to Oli and touch her.

I’m really not trying to throw this woman under the bus here. Even though it seems like she’s sitting under the tires as we speak.

I’m just trying to make a point about the words she used.

Even though words can’t be seen, they can be felt the most. They can cut the deepest and leave scars on the heart.

This was not the first time, nor will it be the last time, that I hear painful words.

Given the choice between someone staring at her or asking what’s wrong with her… I’m not sure which is worse. Or which is better.

For Oli, the stares are better because she can’t see it anyway so it doesn’t matter.

Hearing someone ask what’s wrong with you has to be devastating. Especially since it’s not like she can turn to me and say “Well mommy. What IS wrong with me?” She can’t express to anyone how those words make her feel.

And then there’s my other children.

I can’t even begin to tell you what it is like to have to sit across the table from your sister and hear someone ask what’s wrong with her, like you’re not even sitting there. Like you don’t have to deal with this kind of stuff every single day.

Are the stares better for my other children? I can’t answer that. I have no idea.

I like it when people approach me. I like to talk about Oli. I’m not sure what the right phrasing would be in circumstances like this.

Perhaps just saying hi. Saying something like “Hi. Did you have a nice dinner? I just wanted to introduce myself and tell you that I have an autistic cousin. His name is ____.”

That way I then have the opportunity to say “Hi! You know my daughter here has autism too. She’s also blind.”

Or maybe I should just start being more proactive and if someone comes up and says “Hi. Can I ask you a question?” I’ll just interject with SHE’S BLIND AND HAS AUTISM. SHE ALSO HAS A GENE DELETION AND IS NON VERBAL, HAS SEIZURES, IS DEVELOPMENTALLY DELAYED, HAD SURGERY WHEN SHE WAS 7 MONTHS OLD BECAUSE OF SEVERE REFLUX. SHE’S HAD A FEW OTHER SURGERIES TOO. HERE LET ME START AT THE BEGINING. PULL UP A CHAIR. SHE WAS BORN WITH MICROPHTHALMIA! Excuse me a second, WAITER! WAITER! Hi. Can you give me piece of paper and a pen? I need this lady to take notes. I fear I’m losing her here.”

Ok well. You see where I can go. Ya know. Issues and all. I tend to talk too much and give too much information so that might not be the best solution. (I wouldn’t ever say any of those things in front of Oli of course, but you get the point. Had to put that in there for the serious Sally’s who might feel the need to comment about it.)

I think the first option is probably the best. People may or may not even have a relatable topic to approach me with. You can always just say “Hi. What is your daughter’s name?” Then inevitably I WILL tell you about her.

Come on guys.

I’m like a leaky faucet when it comes to talking about Oli. You know this about me.

I’m an over-sharer. Can’t help it. It’s in my genes. I come from a long line of over-sharers.

I just don’t want Oli or Kekoa or Ginger or Thalia or myself to have to hear the words what’s wrong with her again. Especially not from someone who has a kind heart and good intentions because then I just feel REALLY bad.

If it came out of some jerks mouth, well then… that’s easy.

I just want people to think about the things that they say, when they don’t stop to think about who might be listening.

There could be little brothers and sisters listening.

The child that you’re talking about could be listening.

Even a child who you might think can’t understand you? Can probably understand you.

My Oli can understand you.

Until I meet a doctor that can tell me with 100% certainty that Oli absolutely, positively CANNOT understand any kind of language…

I will always believe that she can. Even though she cannot speak.

Because that’s my job. That is MY job as her mom. I am supposed to advocate for her and protect her and ensure that she knows that she is entitled to the exact same rights as every other human being on this planet.

She deserves not to have people speak about her like she isn’t even there.

We don’t do that to people.

My daughter is people.

And there is NOTHING wrong with her.

Tags: , , , , , , , , ,

← Older Entries