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

Table for 4… (dealing with anxiety)

Me: “Table for 4 please. But, can you please remove 1 chair?

I have yet to encounter a restaurant that understands this request.

They usually say “oh do you need a high chair?”

Even though Dinah is sitting right beside us.  In her wheelchair.

I would assume that it would be common sense to remove a chair so that the wheelchair can fit at the table.

But, my assumptions are probably jaded.

Family outings in any closed environment can be quite a production for us.  On one side of the table 2 ½ yr old Kay is dropping crayons on the floor, requesting fallen crayons be immediately rescued, playing in her food, opening sugar packets, and talking nonstop. On the other side of the table Dinah is very excited, loudly squealing her excitement (she loves food), banging the table with her non-spastic hand, and yelling when we do not feed her quick enough.

We are used to this.  It is our normal.

But, it is not normal for most people.

Usually we get several different responses in one sitting.

The elderly couple that keeps giving us a knowing sympathetic look.  Sometimes if they are in earshot they will say things like

“Well aren’t they just darling?”

“You all have your hands full!”

Then there are the younger people who occasionally look at us with pure undisguised irritation. It’s worst if they are there on a date. (Which hey, I can understand…kid noises do nothing for a romantic ambiance).

Then there are the outright rude people who just constantly stare.  Kind of with disgust. Kind of with intrigue. This is my least favorite response.

I usually give back uneasy apologetic smiles when I can. To everyone.

Meanwhile, I am trying to co-manage the unorganized chaos, make sure the kids both get most of their food in their belly, keep myself from having a negative moment, and still have pieces of conversation with my husband.

The worst thing that can happen is Dinah needing to have her diaper changed. That can be a HUGE dilemma if we are not close to home. Public bathroom diaper tables just are not designed to accommodate a 7 year old.

These are things that just are.

Kaylin will get older. She will stop requesting crayons at some point. She will be able to sit quietly.  This is just the toddler phase. That is uplifting.

Unfortunately, I find myself grasping at straws when I try to have this same type of uplifting glance of the future concerning Dinah.

I start to sweat thinking of her being heavier and taller. Harder to lift. More awkward to transfer to and from her wheelchair.

Eventually we will need a wheelchair-accessible van.  Which is a tough pill to swallow considering that I don’t even like minivans.

But ya know…this is that living in the moment stuff I talk about so often.

Last year I started having some serious anxiety issues after Dinah became too heavy for me to comfortably lift. I started having a horrible dread of the future.  I started to wallow in self-pity.

I spiraled down to having panic attacks on a weekly basis and ending up in the emergency department (which is very embarrassing when you are also an emergency dept RN).

This form of anxiety was completely new to me. It was by far the ABSOLUTE WORST feeling I had ever encountered.

It took lots of prayer, changes in my diet, and most importantly, CHANGES IN THE WAY I COPE AND THINK to overcome the A monster.

I finally realized that this is my life. No matter what the circumstances, it is my life. And I had to learn how to cope with it.

Eventually I overcame the pride that was holding me back and started going to a trauma therapist (I still do not know why there is such a stigma with seeking therapy when you clearly need it!).

She saw very quickly that I had a truckload of anxiety due to my dysfunctional coping skills.

The first thing she taught me was to live in the moment.  To be present here. Right now. And just breathe.

I could write a book about my experience with panic and anxiety. But, at this moment I want to encourage anyone dealing with those issues to see their medical provider right away and also look into therapy.

Anxiety almost always has a root cause.  It could be physical (like electrolyte imbalances or even serious issues like a pulmonary embolism) or emotional (like bottled up stress or a history of trauma).  But, it is not ever normal and you should not have to live with it.

Anxiety and chronic stress go hand and hand. And more and more research is indicating that chronic stress is a precursor to every disease ever known to man.

You can overcome anxiety as I did.  I still have my moments occasionally, but they are not anything compared to the panic attacks I was having before.

Do not put it off. Get help today.

Life is so much sweeter when you are not living in fear.

-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 .