Sunday, April 3, 2011

Accepting change

While Mum was visiting I casually mentioned to her that I felt like Reubs was permanently frozen in time for me.

Hang on.

Back it up!

Say what?

Yeah I know.

Thats what I thought.

Weirdo... few 'roos loose in the top paddock.   Few stubbies short of a sixpack.    (reaching into recesses of mind to find another good ol aussie euphamism)...   Few sandwiches short of a picnic...Elevator doesnt go all the way to the top...Few fries short of a happy meal.    Enough! I got on a roll.

Do I really feel like this?  Yeah its true *scuffing feet, looking humbly at the ground*  hes my BABY!

Yup yup.   But hes 18months old now.  

How could I feel like Reuben is permanently going to be stuck at diagnosis age to me?   I feel like hes still 8months (yes e i g h t months old.)   I look at him, and I see the tiny infant who had lost weight.   Smelling sweetly like those toxic ketones, vomitting, lifeless.    I dont think back to life before diabetes, I think that would just be torturing myself - the simpleness of those days.

Hes been growing and changing and learning wonderful things.   Hes talking, playing games, running, kicking balls, potty training, trying new foods, singing and dancing and sleeping fairly well (when we arent poking him at night and waking him to take in some sugary muck).   

I doubt that highly.  Hes social and gaining independence every day.   I dont baby him, because I have to discipline him just like the other kids.     Scissors can hurt you Reubs.  Climb down off the table, you could fall.    Dont put bags on your head.   Spit out the darts.   Dont touch, hot!  No, no more milk.  Ok, out of the bathtub (despite ensuing screams and protests, like any good mother would do).. you get the drift!

For crying out loud, next month is our 1 year dia-versary.   One year weve been doing this.   One year of pure survival.   Im talking about clawing my way emotionally from one BGL/injection/meal plan to the next, diabetically speaking.   Relief when we wake up safely each day.   Relief that we havent treated a hypo episode in 2 days.  Relief when something 'clicks' and I get new revelations about how to look after Reubs and his diabetes.    

Will I always feel this sadness and aching in my heart when I look at him?   Will my eyes always well up with tears when I think about diabetes and how unfair this is?   Will I baby him or not let him grow up like I do the others?  Will I ever see him cured, or have such good treatments that this wont be such a burden in his lifetime?  How will I handle talks with him about diabetes when my heart is this broken?    Will I always feel sad.  Will I always protect him like some freaking wild animal on acid?

My eldest asked me "Mum, if God made everything why did he make Reubens pancreas not work right?".    I had to explain that God made him just perfectly and its this world we live in thats the problem.    Its a tricky question to answer because I know Ive struggled alot with why us?  Why Reubs? 

Will this sharp stabbed with a dagger kind of pain in my heart ever reduce to a more dull bludgeoned with a baseball bat kind of pain?   (woohooo what a consolation prize that'd be.)

Mum suggested I see it this way because hes my last child - my baby longer.

I think I see it this way because to me hes so vulnerable.  Ever since his pancreas packed its bags and moved on out of functionality - I see a precious child who needs needs needs me.   He can rely on his Mum to always treat him with attention, worry and tenderness - like a mother with her newborn baby.   I dont think that will ever change, even when hes in the body of a grown man.


  1. Jules,,
    Even though I read all the time, I guess I didn't realize he was 18 mons. i pictured him older. And, 18 mons is so little. Such a baby, esp when he's the baby of the family. How can you not feel the way you do? I can see why you picture him as vulnerable. All babies are, esp. ones with diabetes. Love to him!

  2. Jules...I love you. I understand the pain. It will eventually feel like the dull knife lodged in your right atrium (a part of your heart). It takes awhile to get that place ... and it is different for each of us. You are doing such a fantastic job and might I add, I love your humor and sarcasm. You make me smile each time I come over here...even when it is a deep post...there are always some "Jule-isms". xoxo

  3. I understand and relate to your feelings of sadness day in and day out. We are almost to the year mark as well. I have no words of wisdom, but thanks for sharing so I know I am not alone in how I feel.

  4. Hi. I just want to introduce myself to you. My son, Brandan, was diagnosed when he was 12 months old. He's 4 now, almost 5. I have 2 more sons now, 2 y/o and 10 weeks old. Nice to meet you. :)

  5. Yes Julie, it will always be there. Even though Andy is not my baby, in some ways, I think he will always be more vulnerable than Katie. Whether it is the 4 months of high blood sugars that we didn't know about or the severity of the mutation we seem to be noticing in the boys in particular, or the length of time he was on insulin before discovering the miracle of glyburide, he is behind. He is not developing the way he should be. Katie is much more independent than he ever was even if she is delayed a little. I think remembering that frail little body at 4 months old that was the size of a newborn will always be burned into my brain. Seeing all of those tubes and wires attached to him will forever be the reminder that we almost lost him. I don't think about it every day anymore, but the ache is still there when I do think about it. Hugs to you from across the ocean. You are a great mum and he will always be your baby. That's OK.

  6. oh, Jules, I appreciate this post more than you know. Today I felt almost postal as we left a birthday party and I was just livid internally about juice boxes. Yes, juice boxes. I hate those damn things, yet sometimes my child needs them.
    I wonder so many things like you about this disease and my baby. I wonder if my heart won't ache when he hands me his pump once again and says, "I'm done" and I get to re-explain that he can't be done with it just yet, but someday. I am struggling so much with this lately and can't seem to get to a point where it feels "okay"...but each day I am more and more thankful for my children knowing that nothing is ever promised, not a working pancreas, or blood that clots (my nephew has hemophilia), or completely formed limbs (my niece had to have a leg amputated due to malformation) so...there is soooooo much to be thankful for, right? (says she while sobbing once again!)

  7. I know the sadness takes a back seat (when things are going well) in your day to day life; it is always there in the background. Diabetes is a daily threat, so you will always protect this child (mine currently calls me a "helicopter parent", though I really am not) as you would protect any of your children from any threat. From your daily routine, from your actions, they will learn from you how to protect themselves; and you will be so proud when they take on some responsibility themselves because they will be able to keep safe, first, when away from you for a few hours, then on their own as an adult. You will act like a wild animal to protect any of your children; that is a mother's instinct. Yes, it DOES get better; yes, there WILL be better and safer insulins or treatments, I am sure of it. And someday..... a cure. My heart goes out to you, as I think it must be especially difficult treating a baby or toddler who was diagnosed.