Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Wednesday, November 08, 2006

My Reality Shift

I have come to the realization that in the past thirty days, my life and life circumstances have changed so much that I have actually experienced a reality shift.

A reality shift, for me, tends to be defined by the things that happen in my life, and a lot of times, they really tend to be health related. I'd say my first reality shift, where how I viewed the world and my surroundings changed dramatically, was after my sexual assault at age 13. My second reality shift, coming soon after the first, was my diagnosis with diabetes. Reality shifts after that would include things like: getting clean off of methamphetamines at age 18, going to college and failing MISERABLY at age 20-21, having my son at age 22, recovering completely from a burst appendix at age 22, having my daughter at age 24, graduating from drug treatment for fentanyl abuse at age 25........These are the major things in my life that have changed, at the core of my being, how I view, interpret, understand, and experience the world around me.

I believe that I can safely say that within the last month, I have experienced a set of new reality shifts. I have gone from having a set of wild and active, healthy young children to being a single mom of two (TWO!!!) special needs children. Two cihldren that qualify as having childhood disabilities and are protected from discrimination because of these disabilities. Two children that are going to intensely need an advocate, are going to intensely need a parent who is not just a parent, but a life support. Wow. It is just a lot to take in.

A couple of months ago, Sandis starting school didn't consist of whether or not the school lunch system can support a Gluten Free/Casein Free diet. A couple of months ago school was an exciting new adventure, rather than a LIST of highly inconvenient (although needed) doctors/psychologist/psychiatrist/therapist appointments. In September, I had no IDEA what an IEP is. Now I'm gritting my teeth trying not to be too overwhelming and abrasive as I am trying to ensure that my son gets all the tools he needs in school to succeed. It is so different than what I ever imagined, expected, or ever could have anticipated. So different....

Until this past week, things like training day care staff in the treatment and management of diabetes was not something that even crossed my mind. Until this past week, asking a diabetes educator if I can switch the injection site for my daughter's Lantus injection from her buttocks to her thigh until her skin heals would have been entirely out of context and my experience. Until this week, giving my daughter a shot, holding her down and physically restraining her to do so, never would have occurred to me. It just wasn't a part of my life or set of experiences. All the sudden, honeymoon is referring to something other than that marriage I've been fantasizing about for the past year (hint hint Bob!).

Things are just totally different. I feel fairly overwhelmed around 85% of the time. The times I don't feel overwhelmed, I am sleeping, or peeing (Who can think while they pee?).

I have been migrating to autism/asperger/pdd/parents of diabetic children blogs so much my mind is spinning. I read about children who are diabetic, who are past that whole honeymoon thing, and I really am not looking forward to more intensive insulin management for Gracie. I feel pinned to my job. What job wants to hire someone who has as many outside commitments I can't beg out of? Sure they can't discriminate, but even if I wanted to move to the cities and find work there, I wouldn't be able to shirk these responsibilities. I'd have to go a year without FMLA protection and I'd have a whole new school district to work with. Plus, I'd have to pay COBRA for myself and two young children. Now not one of us can AFFORD that lapse of benefits. I'm feeling pinned to Saint Cloud. I'm feeling pulled to the cities. After all, all the decent care for the conditions my children have is located where? In Minneapolis/St Paul.

There is a lot going on, and suddenly, I'm not caring too much about running anymore. I haven't been counting my calories for over a week, screw it, I have other things to worry about. My passions in my life seemed to have switched from running and islet transplantation and managing unforeseeable and unpredictable lows to diabetes advocacy, autism advocacy, getting the most out of your IEP, sensory integration, blah blah blah blah blah. Everything is changing, has changed.

And you know what? I realized today that not only have things been different lately, and not only has everything changed, it will never be the same again. I can never go back. I have had a complete reality shift. I am not certain I have had a reality shift as complete and as thorough as this since I first gave birth. This is that big. (If you are a parent, you understand just how big that is!)

So what now?

I learn how to change. It's funny how life changes and suddenly, something that was vitally important yesterday just isn't all that important anymore. Something came up. Lately, I have had autism and type 1 diabetes come up. I've decided that I am going to become a member of the Autism Society of Minnesota (and I'm even gonna pay the dues). I am also going to join the JDRF (and I'm not sure if I have to pay dues for that, anyone know?).

Just on a quick exit note, I'd love to share with you a note about Gracie. Her blood sugars are doing fabulously on just a 1/2u of lantus, staying perfectly between 85-115. I know it won't be like this forever but I'm crossing my fingers. Also, she has officially received a Type 1 Diabetes diagnosis. Tonight was her third night with a lantus shot. The first two nights I had to physically restrain her and she struggled so much and cried and screamed. It was pretty terrible. Tonight she laid down on my lap for me and cried a little, but did okay. She said: "Just a little poke mommy and then it is all over." I said: "Yep, Just a little poke and then it is all over." Until tomorrow, right?

8 comments:

julia said...

This was a fantastic post. Sad as hell, but very well-written.

On another note, have you asked for an injectease for the Lantus? O used one for a couple of years and said it helped a lot. I may even still have hers, if you want to try it (I was going to say "give it a shot," oy.) There's also something called a Shot Blocker that a lot of kids swear by. You might want to look into that.

Anyway. If you want the inject-ease, drop me an email at book _ ish at yahoo dot com

You can also go to the Children With Diabetes website and get a Welcome Kit for your daughter. There's a lot of goodies in it that she might like. The JDRF also does a Bag of Hope that has some cool stuff in it, including (usually) a Ruby or Rufus doll. Just give your local chapter a call to see if they do them.

Megan said...

I'm so glad to hear that Gracie is going well. It sounds like she's adjusting.

I always thought that diagnostic criteria were two blood sugars over 126?

Kim said...

It has taken me way too long to respond to your lovely heartfelt comments over at my site. I am so pleased my words connected with you - I mean after the self-indulgent nature of it all, isn't that what this whole blogging thing is about? Connecting with each other? Sharing stories and ensuring we all realise that the breath-taking isolation we can all feel in our lives is not necessary. That we are not alone.

This post is stunning in its rawness, honesty, brutality and love.

Lyrehca said...

Great post. I imagine down the road, you will look back at it and see how much honestly and strength is in it.

Gracie and Sandis are lucky to have such a great, loving, strong advocate for a Mom. They will thrive because of it.

Tekakwitha said...

Sarah,

Very touching post. So many people I've 'met' on the OC are so very strong and amazing. You are one of them.

tek

Kerri said...

Thinking of you and wishing you continued strength.

Vivian said...

Sarah, I will have to comment when I find the words. Until then, I am sorry you and your babies have to go through all of this.
Viv

Scott said...

I've never really thought of the reality shift concept.

I can certainly see how going through what you are dealing with would shift reality!!

For whatever it's worth - I think you are handling everything remarkably well.

I still find myself marveling at you and your burst appendix experience. If that is any indication of the strength you have within, you will pass these "tests" with flying colors!