Dinah’s Rose Tinted Glasses

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Today is just one of those days.

I am recuperating from my emotional response to opening a letter in the mail from our county’s Developmental Disability (DD) dept yesterday. I actually received the letter last week, but waited to open it in dread of what it may read.  Really, I just wanted to open it with a clear mind. That took a few days.

To my surprise, Dinah was deemed eligible for support services, and placed on a level 1 waiting list.

This is a huge deal because I have fought for the last 4 years to receive disability services for her. My issue with the government concerning support for people with disabilities is a whole other story.

I got up this morning remembering the letter and very excited that we are one step closer to getting her some of the large price tag equipment she needs.

Motorized wheelchair. Enclosed safety bed. Lift. Communication devices. Adaptive play equipment. Safety bath chair. Wheelchair accessible vehicle.

Just to name a few.

Then I mentally and emotionally spiraled into what all of this really means.

I started missing markers. (go to my previous post of what Missing Markers means for clarification).

I started wishing that I was pondering different plans for Dinah’s future.

Like her first dance. Prom. Buying her a starter car for graduation.

I started thinking about the conversations we may never have.

About her best friend at school. Her first crush. Her nervousness over her first spelling bee competition. Her excitement about receiving her first college acceptance letter. Her questions about life.

Yes, yes, yes of course she still may be able to do some of these things.

But, when you have a child with severe disabilities it is wise to plan for the worst while hoping for the best.

Because you absolutely do not want to be caught empty handed if worst shows up.

I am a firm believer in the power of faith. And yes, I believe that miracles happen everyday all across the world.

I believe that the fact that Dinah is even here IS a miracle.  Various things have happened in my life that are a miracle in my eyes.

But….I also have to live in the reality of now.  The reality right now is that Dinah does not walk or talk.  The reality is that I have to plan for the probability that this will never change.

This reality is depressing.

The only comforting part of any of this is that Dinah absolutely loves life.  She is such a happy child. She really only cries when I fix her hair, she is hungry or thirsty, during any type of therapy, or when her little sister snatches a beloved object from her.

It is like she wears rose tinted glasses the vast majority (90%) of the time.  You know, the type we all wore before life smacked them off of our faces.

It is comforting to think about her future and always see those rose tinted glasses nestled on her smiling face.

That I can live with.

That makes me happy.  Because most of the things we do for our kids is geared towards making them happy.  Dinah is happy on her own.

That adds a dimension to my perspective of Dinah’s future. Giving it a very subtle, yet effective, rose tint.

Oh Dinah, if only I could view the world like this all of the time.

You inspire me to challenge myself everyday to do so.

To wear your rose tinted glasses no matter what I am looking at.

-Kelley

© Kelley Daniel, http://www.missingmarkers.com, 2014

A Quick Blurb about Marci Shimoff’s book “Happy for No Reason” –by Kelley

The-Art-of-Happiness

Happiness for any reason is just another form of misery”- The Upanishads

They say that the pursuit of happiness is the underlying drive of everything we do.  When we pick up even the tiniest scent of happiness, we immediately chase wildly after it. When we find it, we relish it. We indulge in it. We feel it.

Feeling happy is a grand experience.

But, feeling happy and being happy are two different things.

I realized this one day when I noticed that if I was not around my family (who bring me happiness) or doing some fun or exhilarating activity (that generates happiness), I was utterly sad. When I was alone and just doing nothing my true inner feelings bubbled to the surface.

I was not happy inside at all.

This was the beginning of my happiness journey (my most recent one at least).

  • I prayed about happiness daily.
  • I started journal writing daily.
  • I started devouring any book on happiness and positivity I could find. I read several within a months’ time.

And then I found Happy for No Reason, 7 Steps to Being Happy from the Inside Out by Marci Shimoff.

This book absolutely changed my life. I am so grateful that I bumped into it during one of my half-sleep Amazon searches (hey, Amazon Prime is an addictive force).

According to Marci Shimoff (2008), being happy for no reason is “a neurophysiological state of peace and well-being that isn’t dependent on external circumstances.” And “when you are Happy for No Reason, you bring happiness to your outer experiences rather than trying to extract happiness from them.”

Marci’s book does an amazing job of explaining how searching for happiness is okay, but learning how to resonate happiness from within will bring you peace, joy, and harmony.

On her website (http://www.happyfornoreason.com/Products/HappyBook),  she states that

      “Studies show that each of us has a “happiness set-point” — a fixed range of happiness we tend to return to throughout our life — that’s approximately 50 percent genetic and 50 percent learned. In the same way you’d crank up the thermostat to get comfortable on a chilly day, you can actually raise your happiness set-point! The holistic 7-step program at the heart of Happy for No Reason encompasses Happiness Habits for all areas of life: personal power, mind, heart, body, soul, purpose, and relationships.”

Here is a video that she posted that is very very helpful in understanding the happy for no reason concept:

I hope you are able to derive as much meaning and happiness from this book as I have. I recommend it to anyone who has ever felt like something is just missing.

For anyone who has already read this book, please comment with your thoughts. I’d love to hear your story.

-Kelley

 © Kelley Daniel, http://www.missingmarkers.com, 2014

What does “missing markers” mean anyway?

You have always wanted to be an artist and it is finally happening for you! You just laid out your best construction paper. You have a picture in mind. You are inspired. You pull out your brand new box of colored markers. You are ready to begin.

Imagine your surprise when you find that your box of markers is missing the two colors that you use the most. Colors that most people would say are essential. Dig deeper into your imagination and imagine a world where you only get ONE box of markers. There are no exchanges. Actually, you are so attached to this box of markers that you would never ever think of trying to return it anyway.  You will have to work with what you have.  This box of markers may not be perfect, but it is YOUR box.

This is how it felt the first time I realized my daughter, Dinah, had missed a developmental milestone.  She was one years old and had not ever rolled or crawled. Actually 1 years old was around the time she first started to hold her head up on her own.  She hit two years old and not only had she never walked, but she also could not talk. We were missing some major markers.

Let me cue you in on the back story. Dinah was born when I was 24 weeks pregnant.   This was completely unexpected.  I woke up that morning with severe abdominal pain. I kept trying to rationalize that maybe it was Braxton hicks or just normal growing pains.  Not even an hour later, the pain became unbearable. I felt like someone was squeezing my pelvic region with thousands of pounds of pressure.  I was taken by ambulance to the emergency department of Botsford Hospital in Farmington Hills, Michigan.  I felt like I was in a complete daze. Several things were done to try to stop the progression of my labor.  However, Dinah’s tiny foot found hanging out of my cervix meant that an emergency C-section had to be done.  Preemie Dinah was 1 lb and 14 oz.  A ventilator breathed for her.  Lines going into her tiny fragile veins supported her immature system. The neonatologists at the University of Michigan NICU gave us no hope. We signed DNR (do not resuscitate) papers meaning that if Dinah started to die the doctors would not attempt to bring her back.  We came in the next day and retracted them.  After all, she was OUR child.

Dinah is now 7 years old and the apple of our eye. Doctors told us she would not make it past 2 weeks old.  She does not walk or talk, but we have learned by trial and error to live in gratitude and happiness despite her disabilities.  We have learned (……and are still learning) to use the markers she does have to create stunning pictures.

Van Gogh's Almond Blossom

Van Gogh’s Almond Blossom

This blog will present our raw experiences and feelings. The behind the scene editor cuts of our life. And it is not always pretty, but our aim is to focus on all that is positive and life-giving.  This attracts more positive and life-giving experiences into our lives.  Our life is not defined by the markers we are missing (in fact, most days we forget we are even missing them). Our lives are defined but what we do with the markers we do have.

THIS BLOG IS FOR EVERYONE. Missing markers can apply to a vast variety of situations.  Depression. Anxiety. Loneliness. Heartache. Despair. Poverty. Limited thinking. Guilt. Feelings of powerlessness. Feeling “stuck”. Feeling like there is just something missing.  Make missing markers personal to you.

This blog will also explore the life of parenting a child with special needs.  Yeah, parenting is hard in any situation.   Having a full box of markers does not mean that creating beautiful pictures will be easier.  It does not ensure perfect pictures either.

Parenting a child with special needs can add many layers to the complexity and difficulty of parenting (rather it be financially, emotionally, mentally, etc). It means mixing the colors of the markers you do have to create the best pictures possible everyday.

Grab a cup of coffee or tea (my personal favorite) and enjoy.  Maybe we can share the tricks of mixing markers?

-Kelley

© Kelley Daniel, http://www.missingmarkers.wordpress.com, 2014 .