Tag Archives: special needs

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.

Living within the isolation of myself.

14 May

We moved from Pahrump, NV to Round Rock, TX on October 1, 2009.

By the time we moved I was exhausted. Mentally exhausted.

Living in that desolate island of fear, tears, sand and mountains had completely depleted me. I felt so alone. Although my mom only lived a few minutes away and my husband was with me…I was alone.

I had submerged myself so deeply in self-pity and self-hatred, blame, guilt, remorse, and those constant day dreams of what might have been, I was beyond reach of anyone else. I was alone in a dark, sad, tear-filled cocoon of my own making.

I couldn’t wait to move. I had pushed everyone away. I would talk with my friends, listen to stories about their children, the whole time thinking to myself “You don’t understand. You just don’t understand how hard this is for me.” They didn’t understand. Because I never told anyone. Moving seemed like the best solution at that point. I thought that if I changed my outside, if I changed my zip code, that it would change the way that I felt.

I had convinced myself that it was all because Oli didn’t have enough support. That it was because I didn’t have enough support. It was. But, it wasn’t. Oli did need more help with people experienced in blindness, but I had some support. I just couldn’t see it then.

I had met and made friends with other moms who had visually impaired kids. I had become good friends and remain friends with some of them. None of them were totally blind though. I had led myself to believe that because their kids weren’t totally blind, that they didn’t really understand what it was like.

I had made it US vs. THEM.

I had isolated myself even against the people who knew what it was like. I was looking for all of the differences in our lives rather than the similarities. I think some part of me enjoyed that feeling of isolation. Some part of me liked feeling sorry for myself and enjoyed believing that I was the only one in the world who felt the way that I did. That no one could possibly understand my struggles.

It just simply wasn’t true though.

LOTS of people knew how I felt.

If I just would have stopped for a second and looked outside myself, I would have seen that. I would have seen that I had people surrounding me that wanted to help me. They wanted to understand what I was going through. If I would have made myself available to them…if I would have made myself a little vulnerable…I would have seen that.

I didn’t.

I didn’t when we lived in Nevada and I didn’t when we first got to Texas.

HAPPY 6TH BIRTHDAY OLIANA!! MAY 10TH 2013

10 May

I made a slideshow for Oli’s 6th birthday. *Warning* Content may cause viewers to burst into tears. Use extreme caution when viewing and the use of tissues and/or sleeves is advised:) I hope you guys enjoy the pictures, the story, and the music.

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Leaving a child behind

1 May

After what seemed like an hour, but was more likely only a few minutes, I dared to sneak a glance at my husband. His face was a silhouette against the window of our car. With the sun setting orange behind him I could just make out the corners of his lips turning upwards in a smile.

“Move? You really think we need to move?” He asked, sparing a glance at me and momentarily taking his eyes off the road.

“I do. I think that we really should. Oli’s vision teacher is always telling us how great Austin, TX is. I think we should look into it.” I answer.

“Okay. I’m in. She just isn’t getting the amount of services that she needs. She needs occupational therapy and speech. She needs more physical therapy and orientation and mobility. I agree. Las Vegas, NV is definitely not the best place to raise a special needs daughter. Let me talk to my company and see what they can do. Maybe I could somehow transfer.”

And that was it.

The decision to move my family was made on a hot summer day in August 2009 on the drive back from California after a trip there for my birthday.

There were no arguments and no one resisted the change. We simply decided to move.

Bittersweet tears were shed by my husband. He was happy for Oli, but sad for who he was leaving behind. Moving to Texas meant leaving his two sisters, two nephews, one niece and his mother behind in Vegas. It also meant moving much, much farther away from his daughter, my step daughter Thalia, who lived with her mother in San Diego, CA. She was 11 years old at the time.

I didn’t appreciate then what an enormous amount of strength and courage that decision took for him. What it meant to leave a child and move somewhere where he would only see her once every 6-9 months instead of every month. He made the type of decision for Oli, which I’m not sure that I could have ever made. He made a choice to help one child, who may have needed it more, with the sacrifice of not seeing the other. Their relationship would remain tightly intact via computers and nightly phone calls. Many many phone calls.

And many many tears.

Many tears of sadness and loneliness were, and still are, shed on behalf of Thalia.

Some days he gets lost without his oldest daughter.

Sometimes I wonder if he regrets leaving.

I wonder if he thinks it was worth it.

I’m sure most days he thinks that it was. And then. . .I’m sure there are others where the pain and the sadness are too much. Days where he longs to feel the touch of her sweet embrace and see the warmth of her beautiful smile.

I do know that every day he misses her. Every. Single. Day.

We both do.

This card pisses me off!

3 Apr
This little boy is in a wheelchair, but the bottom part of the picture got cut off.

This little boy is in a wheelchair, but the bottom part of the picture got cut off.

This post has been brewing for a while. I had to write a little something about this card, or cartoon, or blasphemy, whatever you want to call it. Let me just tell you, this picture PISSES ME OFF!

Aaahhhh! (Imagine me yelling at my computer screen) <—This is my frustration with this gem every time I see it float past my news feed on Facebook. And I have seen several versions of this one. I can't take it anymore! I can't keep my mouth closed any longer or I will start banging my head against the computer screen, rendering myself completely incapable of complaining about random things that are annoying me.

Really?

Your ONLY special need is to be loved?

Ummmm… no.

NO!!

No it’s not!

I’ll tell you why it makes me so mad.

It completely and totally minimizes all that MY special needs child has to go through to live in this world. My blind daughter who has to navigate around in the dark in a sighted world. My non-verbal child who has to try to be understood silently in a world full of language, subtle communication, and written words. My daughter has to survive and thrive in a world that doesn’t always understand or like people who are different. People who don’t have time for, or an understanding of, or compassion, or empathy, or a sense of humor, or many more things that are needed to understand, love, and appreciate a person with autism and other SPECIAL NEEDS.

It completely and totally minimizes all that WE have to go through as special needs parents. Her only special need is NOT just to be loved. It’s a whole hell of a lot more. All children need love. That one’s easy as a parent. I always love my kids. I may not like them very much sometimes (that’s a whole different post), but I ALWAYS love them.

She has specific special needs.

That’s why we call them special needs kids. Otherwise we would call them regular needs kids right? Or normal? No. Not normal. That’s a setting on the dryer. Vanilla? Plain? Average? Non special needs? Neuro typical? What? Kids. I have my kids. 3 of them. Or 3 children and one of them has special needs.

She has many more special needs other than just to be loved.

She has seizures, she takes a bunch of medicine, she doesn’t walk very well, she needs a walker at school, a walking wand, my hand. She’s not potty trained yet, she doesn’t talk, she can’t see, she has epic meltdowns, she doesn’t sleep well, she has stomach issues, she has to eat special food, she needs special therapies, special equipment, special people in her life who appreciate all that she CAN do and all that she is CAPABLE of doing in the future. She has enough doctors, teachers, specialists, therapists…ect., to populate a small country. Sometimes I feel like I am running my own country. I am a dictator here in Oliland.

This minimizes all of the people in her life who work so hard for her. If we just said “Oh. Her only special need is to be loved? Great. Job accomplished. Pass me an award. We did that in our first 5 minutes with her.”

It’s so much more than that!

It’s okay to acknowledge that our kids are different. That they need different ways to help them learn and live and love and grow to be amazing people.

And it REALLY pisses me off that they use the word only in front of the word special needs. Don’t even get me started on that one.

Only? Only!!

NO. Wrong.

You are NEVER allowed to use the word only and special need in the same sentence.

Never.
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Why I Feel The Luck Of The Irish Today

17 Mar

In the spirit of St. Patrick’s day, Irishmen, luck, and all that, I thought I’d write a few reasons why I think I’m so lucky to be a special needs parent. Now, before you throw up a little from my extreme sappiness and begin thinking that I am THAT mom (you know, the one who tells you everything in life is great, chocolate and strawberry milkshakes, cotton candy, and unicorns). Just know that I didn’t always feel this way. If you’ve read most of my blog you already know this about me. (And if you haven’t read it, please do. If you want to. I’m saying that in my mom tone.) And also know that I don’t feel lucky every single day. Some days are really rough, but who doesn’t have those days? Special needs child or not. My rough days might just involve more Q-Tips, poop, and dinners gone wrong. I just try to remember to be grateful every day because if I forget that…it’s a very dangerous place for me to be in (Eventually I’ll get to that part in my story. Stay tuned. It’s a good story!)

I felt soooo sorry for myself for such a looooong time.

Why did this happen to me? I didn’t ask for this. I didn’t expect to have to have this kind of responsibility in my life. I didn’t want to drag my child to hundreds of doctor appointments, therapy appointments, put her through surgeries, conformer appointments, evaluations, and watch people as they judge her, make fun of her, or feel sorry for her. I also didn’t want people to judge me, question the decisions I made for her, or feel sorry for me.I didn’t want to have to watch my child struggle. I didn’t want to constantly wonder what she was thinking. Wonder if she was really happy. Wonder what she wanted and what her dreams were. I never wanted to feel like no matter what I did, that it wasn’t enough because I just couldn’t fix it for her. I couldn’t make people understand her or love her or treat her with compassion. I couldn’t stop the stares or the questions. And I couldn’t really know how much of it she understood.

I didn’t ask for any of it.

But, you know what?

Neither did Oli.

Neither did she.

So, eventually I got my head out of my ass and stopped being the person that I hated. The one who felt sorry for her and felt sorry for me.

Which now brings me to the reasons that I feel lucky to be her mom. After that very long winded introduction.

1. First off, I feel lucky to be anybodies mom. Seriously. To be in charge of little people who are so interesting and funny, strange and bizarre, naughty and annoying, but who are ALWAYS loving and amazing. It’s so crazy and I cannot believe that it is possible to love anyone as much as I love my children.

2. The people that I have met because of Oli are some of the most influential people in my life. Other moms who share their journey with me and continue to awe and inspire me every single day. They are some of the most courageous, generous, selfless, positive people that I have ever met. Therapists, doctors, outreach coordinators, teachers, parent support coordinators, ocularists….the list goes on. I’m so lucky to have these people in my life. Without any of them, I couldn’t do any of what I do. I need support and sometimes I just need someone to listen. Because of Oli I have all of that.

3. I feel lucky that because of Oli I have something to write about. Bad reason, I know. But, it’s true. Because of her I get to tell our story. I get to reach out and maybe let someone else, whose been where I’ve been, know that it’s okay. They’re not alone. It’s really crappy at first. And it’s hard and it’s sad, but it gets better. It gets so much better. Even if it gets harder because our kids get older, it still gets better.

4. On that note, I feel lucky that I get to share my story with so many people who don’t have a special needs child. Because maybe they’ll read my story and gain a little bit of understanding and perspective. Maybe they’ll read my story and the next time they see a child in public who looks a little different or who is having a meltdown, flapping, shaking, humming or yelling, they’ll think of my Oli. And then they’ll remember what I have said about my journey. How hard it really is sometimes and that all we want is a little bit of compassion. Maybe they will try not to look at the parents with pity or not judge them because they can’t control their kids. Maybe I’ve reached someone out there and it will make a difference in someone else’s life.

5. Most of all I feel lucky to be her mom because…well, because she is just my Oli. If you’ve met her you know what I mean. She feels everything with a fierce emotion that is so rare. I’m glad to be a part of that. I get to see her face challenges head on and never back down. Rarely does she show fear. She trusts me so much that sometimes it scares me. She loves me so much that sometimes it takes my breath away. And she is so brave, strong, funny, curious, and stubborn that sometimes I just look at her in amazement. How can such a big, sweet, phenomenal personality fit into such a tiny little girl. She reminds me every single day what my purpose is in life and allows me to share this bumpy road with her. She forgives me when I mess up, she forgives me when I have to do something unpleasant to her, she forgives me when I allow doctors to do things that are unpleasant, she ALWAYS forgives me. She always just continues to love me. She might be mad for a little while, but then she will wrap her little arms around my neck, pat me on the back, and whisper “Mom-Mom” in my ear. It’s like she’s saying, “I know it’s not your fault Mommy. I know you didn’t ask for this either. I know that you are just trying to do what’s right and are doing what you think is best for me. I love you and I love that you walk BESIDE me and not IN FRONT of me. And I’m really glad that you don’t feel sorry for us anymore.”

And those are the reasons that I’m so lucky to be Oli’s mom.

One Mother’s Expectations

14 Mar

“I thought that one day I would just wake up and have all of the answers. What I have found is that the answers I get, rarely have anything to do with the questions I ask.”

It was a warm day in June 2009 and I was sitting on our cream colored leather couch in the living room. I’m sure there was a cartoon on the TV that I had forgotten to turn off when my kids laid down for a nap. I was alone, which for some reason, I usually am when I get bad news. My husband was at work.

The phone rang and I glanced down at the caller ID.

Unknown.

I normally don’t answer calls labeled unknown and let them go to voicemail, but on that particular afternoon I answered it.

Unknown.

That is where I was sitting in the moments before I took that call. I didn’t know what Oli “had”. I didn’t know why. I didn’t have any answers. Why had her eyes not developed in utero? What was wrong with her? Why was she so different from other children her age? Why was she 2 years old and not walking or talking yet?

At that point in her life, I needed to know why.

I thought that if I knew why, I could help her better. I thought that if I knew why, then I wouldn’t be so angry with the world. If I finally got an explanation as to what had happened, then I could come to terms with the whole mess that had become my emotional prison.

I found out why, on a warm day in June when my phone rang and I answered a call from the Albert Einstein Medical Center. They were calling to tell me the results of Oli’s genetic testing.

I found out why it happened, but I did not find out why it happened to her. Which is really what I wanted to know all along.

Why did it happen to my family? Why us? Why did fate choose my sweet, innocent, beautiful little girl to bestow such a big obstacle on. A big difference. A hardship.

Why?

You see, for a long time I thought that this was some kind of punishment. I couldn’t understand why this happened to me. To my baby. I was a good person. I never hurt anyone intentionally. I had a good life. A happy life. I grew up with a great family. I had friends, went to college, had a job. I was grateful for my life and was just going along trying to be the best person that I could be.

And then…the ground fell out from beneath my feet.

I thought it was all happening to me and my family. It was my son and my husband who were affected by this.


I
took on ALL of the responsibility of the health and happiness of my little family because I was the wife. I was the mother. I was supposed to protect them, keep them safe and ensure their happiness.

And then Oli was born.

She was born and I wasn’t sure that I could do any of it anymore.

If I could not stop, prevent, change, or fix what had happened to this little person that I had brought into the world, then I could not stop, prevent, change, or fix what happened to any of them. That realization hit me like a 2 ton steel truck, right smack dab in the middle of my forehead.

When I realized that…I began to react and operate by my fear.

Fear of this big, scary world that had walked into my hospital room on another warm day in May, 2 years previously. That unknown world walked right in, handed me a big pile of crap called unmet expectations and promptly walked right back out of that room.

Oli wasn’t what I had expected. She didn’t fit into my box. The box that was supposed to hold my perfect little life. No matter how hard I tried to cram that square peg into that round hole, she would. not. fit.

When I answered that unknown phone call, I still had expectations. I expected to hear that she had SOX2. Something that lots of other kids had. This particular gene deletion is responsible for the majority of microphthalmia and anophthalmia.

You know what I heard instead?

I heard that she did NOT have SOX2. I heard that she had something else. Something that was not very well known or very common.

She had OTX2.

A gene called OTX2 was deleted from her 14th chromosome and caused her eyes not to develop.

They didn’t know a whole lot about OTX2. When they diagnosed Oli she was one of only 15 kids in the world known to have this deletion.

I expected to finally have an answer, a plan. I expected to find out her diagnosis and then hear, “She will do this at this time. Talk at this age. Walk at this age. Have this ailment, but never suffer from this one. She will go to college. She will get married. She will wear a pink dress to the prom.”

These are the things I wanted to hear when I got that phone call. I thought that I would finally have answers. Real answers. A plan. When I got the diagnosis, I expected a map for the rest of her life to be laid out during that phone call.

What I got instead was….we don’t know?

We don’t know what her future will look like. We don’t know when she will walk or talk. Or if she will at all. We don’t know if she will go to college, ever have a boyfriend or get married. We don’t know if she will ever even be able to live on her own. We just don’t know.

My expectations, the ones that I had been relying on this whole time, were shattered like a mirror when I got that diagnosis. Her future, reflected in that piece of glass that I had been focusing on for 2 years, came crashing down around my feet.

Now I had a diagnosis, but I was no closer to any answers. No one could tell me how to fix it for her or what I needed to do as her mother, to make her fit into this life. Because no one knew what this life would look like for Oli.

I hung up the phone and gazed out of the window towards the mountains in the distance. Tears freely rolled down my cheeks and I made no attempt to wipe them away.

Now I knew what had happened, but I realized right at that moment, that I would never know why.

Is She Afraid?

4 Mar

I can only imagine that preparing a typical child for surgery is difficult for any mother. Trying to explain something about hospitals, doctors, sleepy medicine, discomfort, and recovery time to a 5 year old must be like trying to explain Japanese to someone who has never heard of Japan.

I have never had to do it. Oli is the only one of my children, so far, (I have a sneaky suspicion that Ginger will one day break something doing her karate, dance, acrobats off the furniture) that has spent any significant amount of time in the hospital.

This last October, Kekoa fell off of his bike and required a few stitches. However minor it seemed to everyone else, it was traumatic for him. He was really scared on the drive there. He wanted to know exactly what they would do, exactly how much it would hurt, and exactly who would be fixing him. He wanted to know what would happen if they couldn’t fix his cut? What would happen if it hurt too bad? (Worst case scenarios. I wonder where he gets this?) He needed all of the information and was not so thrilled about trusting someone he didn’t know to make him better. Up to that point, I had always done that.

“Why can’t you just fix it mommy?” He asked me that multiple times on the drive there. I told him that the cut was just a little too deep for mommy to fix. I talked to him about the nurses and the hospital room where it would happen. I told him that they would put some numbing medicine on it and that it probably wouldn’t hurt too badly. I told him that I would be right there with him the whole time.

Despite all of these conversations and words of comfort, he was really scared and nervous. Until we met a boy a little bit older than him in the ER waiting room that had gotten stitches a few months before. He told Kekoa all about it and assured him that it was no big deal and that it didn’t hurt. He immediately looked at me with relief in his eyes and said “See mom. It’s no big deal. I’ll be fine.”

I could only smile and thank that little boy for providing the comfort for my child that I just couldn’t seem to give him.

As I walked Oli into that same hospital on Friday morning I wished that someone could provide Oli with that. Despite talking to her in the waiting room, telling her we were there to see a doctor, and explaining what we were doing step by step, I still wondered if she felt afraid. It’s hard to explain a concept like surgery to Oli. I don’t know any other way besides just talking about it like I talked about stitches to Kekoa. When the nurse took her temperature, her blood pressure, listened to her heart and then had her change into a hospital gown, I just talked her through it.

But does she understand what is happening? Does she think we are at her pediatrician’s office, her neurologist, or another specialist? Does she notice that a hospital smells different than a physician’s office? Does she think that someone is going to hurt her eyes? The last time she had surgery she had an implant put in her eye. This was a painful surgery. Does she think that I am doing this to her? She’s always pretty mad afterwards. What does she think when I hand her off to a stranger and don’t go with her? Is she scared? Does she think that I’m not there for her?

I don’t know. It worries me more and more as she gets older. I think that she understands a lot and I talk to her like she does. The nurse did give her a sedative before they took her back. I’m sure it helps because I assume that she is scared just like any other child would be.

A child life specialist came into her room before the procedure and asked what would help her not to be afraid. I just said “Talk to her. Talk. Talk. Talk. Tell her everything. Tell her your name. Tell her before you touch her and tell her exactly what you are doing before she goes to sleep.” I told this to everyone who walked into her room that morning. Both the doctors, 4 different nurses, the audiologist, the student audiologist, and the child life specialist.

When it was time to take her back to the operating room she was fairly sedated and had a glazed look on her face. I gave her a kiss, told her that I loved her and that I would be there when she woke up. I handed my precious girl to the OR nurse who carried her away and prayed that God would go with her. I prayed that she understood what was happening and that she wasn’t scared. I prayed that they would quickly get her off to sleep so that if she was scared, she wasn’t for very long.

This not knowing…not knowing what she is feeling…is the absolute hardest part of being Oli’s mom. It’s so hard not knowing just what she understands.

The Night Was My Enemy

1 Mar

“Sometimes the hardest part isn’t letting go but rather learning to start over.”

― Nicole Sobon, Program 13

I called Oli’s doctor and told her our decision to try Melatonin. She suggested that we start at 3mg and see if it helps. The first night I gave it to her I was so hopeful that she would begin a normal sleep pattern. I crushed up the pill and mixed it in some applesauce at bedtime. As Oli closed her eyes I whispered a little made up song in her ear.

“Sleep sweet Oli. Sleep tonight. Sleep sweet Oli until it’s light.”

It worked!! For the first time in months she slept through the night. I would like to credit my little song and the mystical powers of my voice, but there was a reason I was whispering it to her and not singing it.

Melatonin was now my best friend.

It was wonderful seeing what regular sleep did for her. She had more energy, ate better, and put on some weight. She finally weighed 20lbs at 20 months old.

It helped me tremendously too.

Before we tried Melatonin I would occasionally have anxiety attacks when darkness fell. I worried every night about how many hours of sleep I would get. Was I going to be able to function at work the next day? If I was staying at home the following day I worried that my temper would be short and that I would be too exhausted to do anything productive with the kids.

The night was my enemy. It held all of my fears, inadequacies, demons, unfulfilled dreams and unanswered questions. It made me feel weak and useless. I would hold my playful baby in my arms at 2am and silently cry so she couldn’t hear my anguish. I would turn my head so my tears wouldn’t fall on her face. And I would pray in the dark. I prayed and prayed for peace. I prayed for comfort and then I would wrap her up in her blanket and hold her tightly to my heart. Oli’s link to my heart and the complete love I felt for her was the only tether I had binding me to this life. This place and my role as a mother. I held onto her and gave this tiny person the power to hold me down and keep me from floating away.

Once she started sleeping it lifted some of those anxieties from my shoulders and allowed me to take a much needed deep breath. I actually took deep breath.

I hadn’t done that in a very long time.

Fasten Your Seatbelt, This Road May Get Bumpy

19 Feb

funny-mom-quotes-brain-cells-for-kids

It was sometime around this point in Oli’s life that I decided I would learn braille. I mean, why not, right? My daughter was still in diapers, had about 4 teeth, could say one word and had just learned to sit up. Why wouldn’t I want to learn braille so I could start teaching her immediately something that blind kids don’t really learn until they are about 5 years old(give or take-I’m not completely sure because Oli hasn’t even started it yet. So glad I ran that gauntlet 5 YEARS AGO!!).

That picture of the crazy mom at the top of my blog, that is cartoon me. She has blond hair because what suburban house wife/stay at home mom doesn’t picture herself as a smoking hot blond bombshell. Or is that just me? Maybe I watch too much reality TV.

I love how chic it is to say “housewife” now. Much better I say that, than tell people I don’t have a job or tell them I take care of my 3 children…all day…everyday…and I never get out of the house…or put real clothes on. . .or have any friends…

See how she’s holding her head. That’s me totally flabbergasted by this whole crazy, loopy, bumpy path that is the road of a mom with a child with disabilities.

Before I had kids my road looked like this:

road 1

It was smooth, newly paved, no potholes and was 100% safe. I didn’t even need a seat belt.

When I decided to have kids it looked like this:

road 2

Highs and lows, a few tiny pot holes, but I could still see where I was going. There were beautiful flowers by the side of the road and sunsets and rainbows in the distance. (I’ll bet you didn’t know that I am also an artist. I will now add that to my resume of blog writer, magic Q-tip eye ball manipulator, Binky locating expert, and projectile vomit catcher.)

After Oli was born my road started looking like this:

road 3

Most of the time I can’t even see where the hell I am going and have no clue where to turn next. I just bump along, twisting, crashing through potholes the size of Connecticut, and try to avoid the boulders falling on my head. A 5 point restraint race car driver seat belt is required for this road. It gives me a terrible headache. That’s also why I’m holding my head.

And I’m holding it because I get crazy ideas like learning braille when my baby is 8 months old and I run with them full force, balls to the wall. It makes my head spin so I’m trying to hold it on so it doesn’t fly off while my mind is traveling at 500 million miles a minute.

imagesCA5W00WF

I might have a few issues, but I did learn un-contracted braille that year:)

I probably get my neurosis from my mother. She learned un-contracted and contracted braille that same year. Along with the numbers, math, and maybe music? Basically the whole shebang of braille. She was ready to open up her own little braille school and teach all the little blind babies of the greater Las Vegas valley.

Never underestimate the love that my mom has for her grandchildren.

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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.

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