Sunday, May 29, 2016

My Visitor

I used to think I'd never make it to 21
And in some ways I haven't

I tried to slit my wrists that night
When you told me I wasn't right

I left things behind that night
And moved on to what I felt was right

Now I find myself lost in a maze of medicine
Desperate to find relief and peace

My nightly visitor who wakes me from my precious sleep won't let go
She breaks me open into a fractured version of myself
Unable to fend for the love I so desire

Brain on fire, emotions on high
My visitor calls, whispering sweet and deadly pain in my ear
"I'll distract you" she says
"I'll give you more fires to put out" she professes
Once again I fall for the pain she promises

I'm broken
I've been broken for years
Now my brain is being torn apart
By my invisible visitor

This invisible visitor that I give myself over to
I try to escape her
Downing pills to get through the day

It only masks her tortuous rampages
Beating me senseless
Another pill, another shot
To get rid of something I have already forgot

I know not what will become of me
Save me, rescue me
But alas it's up to me

And here I lay stuck.

Sunday, May 22, 2016

Non-Rhythmical Poetry

I remember when I first met you
Through the computer screen
I thought you were the best thing I'd ever seen

You moved across the country to be with me
We thought we were lovers from a past life
We promised this time we would make it last
That we wouldn't lose each other to the arrows of this world

But then we made her
I gave myself to her because her survival was tantamount
And you retreated to the corner of your mind that exists in the void

Like robots now
We do what must be done
Passing each other like ships in the night
Working towards the same goal
But not working together

Now this beast festers in my brain
Clawing its way through everything left that's worth anything

I am desperate to find relief that will not come
Waking at the witching hour to the bang of her nails ripping my brain to shreds

The emotional pain has taken its toll on you as well
We spend our days talking about how many pills we took to get through the day

Its been almost a decade strong now
Living in a place of survival
Rushing her from doctor appointment to doctor appointment
Traveling the country desperate to find someone to save her life

I'd gladly give my life for hers
I know you would too

We lost each other in the aftermath
We aren't lovers anymore
Shadows of the promises we made
Friends still
Yet unable to confide in one another

Find me
Rescue us
Whisper to me again
The way you used to

Speak to me
Force me to speak to you
Set me free

Remember why


Wednesday, May 18, 2016

I Forgot To Ask For Refills

I forgot the refill scripts.

Because the doc kept talking about how Alex is "overweight". Um kay.

Now I have no refills. Because I went into panic mode and Alex is saying to me while I am talking to the doctor "Mom can we go to PetsMart? I want a Beta fish, I want a male beta! He has huge fins!!"

All the Mom's out there get me because as soon as I heard her speak my body immediately turned and payed attention to her.

The doc was so preoccupied with typing into the computer for the EMR that she never even went over the meds with me.

I'm not blaming it on the doc - It's partially my fault for being distracted - but you see us every 6 months for a kid with a bad liver. Sometimes I get confused as to what the job of the doc is and what mine is....

I need a vacation. But that costs money and I have to save every penny so that Alex and I will have money to eat and pay for essentials while we are in Chicago.

I royally screwed up today. I cannot believe I forgot the meds!

Thursday, May 12, 2016

Saying Goodbye and Expressing Gratitude - Class of 2016

Today I took the last 2 final exams of my college education at Chandler-Gilbert Community College.

It's bittersweet.

I am excited to begin the new journey at ASU Polytechnic but also comfortable in the present.

But I know to reach your dreams, you have to go outside your comfort zone.

I want to thank and let me say HUGELY thank the wonderful professors of the teacher education program at CGCC. This is an amazing group of individuals who are devoted to training up the new generation of teachers.

They are amazing. And so giving. And so understanding. I want to be like them someday. They know. They live. They TEACH.

To Professor McManaway who I gave such a hard time to over Common Core Math - Wow. You showed me. You helped me understand. I always liked geometry, but you helped me love it. And UNDERSTAND it. I got so mad cause you wouldn't give me the answer! You wouldn't direct me. But in that not directing me - you were directing me. You're amazing. I hope I force my students to really think and critically think about math like you do. I am forever now a supporter of Common Core thanks to you!

To Professor Boepple - You inspired me to want to teach math. You helped me see what I really wanted - what would really challenge me - Teach 8th graders math. Wow. I thought for sure I am an English teacher - but you sent me into the direction of what would challenge me, what would continue to interest me. Math. You gave me a love of Math. I am so grateful.

To Dr Burris - You always ensure me I'm doing the right thing. You always tell me "you'll be just fine". You introduced me to the world of education. You showed me your love for the art of teaching and passed it on. I am forever grateful for your help - for your guidance. I hope that one day I have Doctor in front of my name like you do. You inspire me. You are wonderful.

To Professor Peterson - I cried in your class. We had a moment there didn't we? :) Thank you for showing me the ins and outs of Special Education. You have helped me continue to advocate for my daughter with a much better knowledge of the way special education works. You were not afraid to tell us your life's journey and you showed us not to be afraid of ours either. I am grateful for your spunk, your ability to command a classroom (seriously you really do), and your intense love of special education. You are what every special education teacher should look like. You change lives. You are amazing.

It's been a great ride. I'm sad to say goodbye because we have all grown together and it's like letting go of all the learning. I won't be at school every Tuesday and Thursday chugging my Red Bull.

We go confidently in the path of our dreams. 

Thank you professors of the teacher education program of CGCC for leading me on this path. Thank you for giving me the knowledge and the strength to know that despite everything on my plate - I can still accomplish my dream of being a teacher.

Today I shed some tears for what has passed and for the excitement of the future.

I always knew I loved school. Thank you professors for continuing to direct my sail in its course.

I owe my future to you.

Danielle Michelle Edges
Associate of Arts in Elementary Education
Graduating class of Chandler Gilbert Community College of 2016.

Monday, May 9, 2016

A Letter to My Future Self

A Letter to My Future Self
Dear Danielle,
                First of all, it’s going to be okay. You’re not as stupid as you look and your actually smarter than the average bear, so it’s going to be okay. The children will love you. They will think every word that falls from your lips is law and will use that knowledge to create a better world for all. But just in case it doesn’t turn out the way you want it to, here’s some advice…….

                Chillax. Children learn at different speeds. Not every child is going to jump up and solve a complex math word problem involving probability with no issue. Some of them are going to have to think really hard, and others are going to not want to think at all. It’s your job to bring them together, and I know you can bring them together.

                Appreciate their differences. Appreciate and be fascinated by the different ways they think. They won’t all think like you do. Listen to them. Figure out what they are saying. Psychoanalyze them if you have to, but figure it out. They will remember you as that teacher who ‘listened’.

                If some kid comes up with a mathematical explanation you don’t get, don’t sweat it. Make them explain it to you. Figure out how it works. The differences in our capacity for thinking is what makes us humans. It’s what makes the world go round. I know you appreciate the varying ideas of this world, this is just another one of those.

                Thankfully, since you’re going to do elementary education with a STEM endorsement, you will still have tons of math thrown in your face, so I don’t worry about your continued ability to critically think when it comes to mathematics. Compute on sista. You got this.

                You have no fear of teaching math. This I am proud of you for. Challenge yourself. It’s what makes you who you are. Pushing boundaries is what gets you going. Push the kids’ boundaries. Blow their minds. Create future innovators. Create doctors, create engineers. Create the person who can save your daughter’s life. I think God knew what He was doing when he gave you Alexandra and you always wanted to be a teacher. You are special. The children you will teach will be special. You will show them their individuality and how they can embrace it. You will help them learn to collaborate and create a better world. It’s what you were made for.

                Mostly, I want you to remember I believe in you. I know you have a lot on your plate and sometimes you just wanna crawl in a hole. But you have got this sista. You have an amazing level of tenacity and down-right hard headed, no bullshit, let’s do this-ness. So do it. Be you. Do you.

                Go forward and don’t look back. The future is bright. Keep putting one foot in front of the other. It’s the journey that matters, not the destination. Enjoy the ride, help others to learn to enjoy the ride.

                And above all – LOVE. Love wholeheartedly. Regardless of the outcome. Live fully. I know you’ve got it in you.

I BELIEVE IN YOU.
Yours Truly,

Your annoying inner voice that you sometimes love but pisses you off 

Thursday, May 5, 2016

Mother's Day

When you are graced with the chance to give birth or raise a child who is medically complex you get to become something you never planned to be (unless you were already one) - a doctor. A clinician.

A saver of lives.

Or in this case - saver of just one life - your child's.

Somewhere along the line - probably about the time Dr Lindblade told me what was wrong with Alexandra at her first fetal echo - I decided I would tear myself apart to save her.

I put my own survival along with hers - because I meant nothing without her.

I had to become medical researcher, doctor, nurse - rarely was I playing the true Mom role. All Mother's are charged with keeping their children alive - but more than anything they were to raise their child to survive in the world - I just focused on keeping her alive for now.

And maybe that's all you really have when you live this life - the now.

Maybe that's what all life is.

I went back to college because honestly we needed the extra grant income to survive - I couldn't work full time and be able to take care of Alexandra and daycare was out because of her condition - let alone the astronomical amount of money it costs.

I've never really been her Mother. I've been her doctor, her nurse, changing her GTube dressings, ensuring she eats enough, drinks enough, ensuring she gets to all her doctor appointments - that she gets the therapies she needs - advocating for her.

I never once advocated for myself. I never once attempted to do something Motherly - because no matter what I would do with her - I always had to have all this preparation. Prepare the meds, get the formula all situated, make sure you've got extra GTube pads and tape, make sure you've got bolus syringes of Gatorade cause you'll be busy at some fun event and she won't drink and eventually she will get so dehydrated she will start to turn bluer than she usually is and now it's become a problem.

I haven't been her Mother.

I became the person who would save her life because in that saving of her life I would save my own.

Here I am - a week away from graduating with my Associates degree and I am waking up to what's around me -

The dust on my blinds is an inch thick, the laundry pile is filling up the hallway, she peed the bed two days ago and she's been without sheets on her bed for the last two days, there's crayons and papers strewn all over her room, toothpaste all over the sinks and vanities, I haven't actually "grocery shopped" in about 3 weeks.

There was a scorpion in her backpack at school.

What I am trying to say is - the moment I heard of this scorpion incident I immediately blamed myself. My house is dirty. They are attracted to the dirt. (Not true but I'm trying to give you a sense of what goes on in my head)

I haven't heard from Chicago yet and I feel like it's our last option of something that can save her life and I keep calling but they don't call me back.

Boston never did that. But they aren't the only doctor in North America who does this innovative procedure for Abernethy Malformation - and we don't even know if he can do anything yet.

My house is a mess. I've either been at school or at work for the last 9 months.

It shows on my face, in my home and on my children.

I am for the first time going to say this in a total this is the real truth real talk - I am depressed.

I have depression. I have PTSD. And that scorpion in her backpack today became a trigger. And I crawled into that hole inside myself that cowers at the thought of her dying.

Because I've invested all myself in her. I saved nothing for me.

And all Mom's do this. And those of us who have medically complex or chronically ill children do it more than you can imagine. We pull ourselves apart. We rip our outsides and insides to shreds over this.

After all - they are our babies.

I don't know what's going to happen. I see the light of the break that this summer will give me and I'm falling apart. I'm falling apart from having to hold it together for the past 9 months.

I worry I will never achieve my dream of being a teacher.

I mean I'm sitting here at the table typing this sitting between grocery bags full of groceries that I have no strength to put away.

I can't go on leave from work, we have bills to pay. Again, I don't have time to take care of myself.

I am depressed. I set the alarm for 5am every night making plans to get up and shave my legs and put my makeup on and look all put together - to push the snooze button for 2 hours. Then to have to literally push myself up out of the bed.

I know we can survive this.

I can survive this.

We can do hard things.

But right now hard things include just standing up.

Happy Mother's Day.