Thursday, May 19, 2011

no rainbows...but wait there is lollipops

Well I sure wish I could make this blog all unicorns, rainbows and lollipops. But in all honesty I dont think that would help anyone, much less ME, who needs to be honest and open about my struggles managing my toddlers diabetes. Reuben has had Type 1 for a year. He is 4 months away from turning 2 years old. The math is easy, hes had diabetes more than half his little life, being dx at 8months.

We have had so many insulin regimes my head spins. We were on Novorapid/Levemir, Then Protophane/Novorapid/Levemir, Then Lantus/Novorapid, Then back to Novorapid/Levemir, Then back to Protophane/Novorapid/Levemir. 5 changes in a year thats like only 8 weeks on each regime... ergh.. I just want some stablity!

We are going through some toddler issues, and they relate to his diabetes, I dont see how you can compartmentalise it and say it just comes down to needles and doses and carb counting.

For us its complicated.

He wont sit still for starters. He delights in saying NO! He knows what you are asking him and he deliberately does the opposite. He climbs up on dangerously high things. He like ridiculously sharp pointy things and manages to find them. Reuben doesnt eat consistently with ANY regularity or pattern. One day he will eat something and the next he just flat out refuses.  He refuses spoon feeding.

Going out then becomes difficult because you have to carry the hypokit with supplies he will take. So it turns into a bag FULL of chocolate, biscuits, crackers, lollipops, gel, different juices, a lucozade incase we cant get him to take the volume required to treat a hypo. Its not fun or easy taking him anywhere with me. He delights in playing with his food. He loves to feed it to the dog. He likes to jam small things into draws and jars and holes. He loves the drama of swiping his full bowl onto the floor and exclaiming "OH NO!" "UH OH!" He loves to draw and paint on walls... with food stuffs.

We go to the endo on Tuesday. For another HbA1c. Im spending a portion of each day crying over diabetes. I hope I flick a switch at some point and become 'undepressed'. I had to take an injury break from the gym, which didnt help, and I gained back some weight Im really keen to lose. I dont see how I can be positive and giving to my husband and kids when Im feeling crappy on the inside myself. I wish the reality of where Im at was better.

I wish I had help.

 Truly I was in denial for a good while. I wish I was back there in denial-land sometimes. I wish I was back there pre-diabetes and appreciated each and everyday with passion. Anyone NOT living with chronic illness in their lives has nooo idea.


  1. I wish I were there to give you a big HUG! I know some of those issues you're talking about, but I think I had it easier with a girl. But I remember the refusing to eat, diaper bags filled to the brim with D stuff... ugh.

    For us, it has become a lot better as Elise has gotten older. I hope you find some normalcy soon. It will come. It has to.

  2. My heart goes out to you, Jules! I have a hard enough time keeping up with my almost 3 year old, the one that doesn't have T1. From reading other blogs out there, I do know it gets better with the little ones, but that may not be a big help right now! Hopefully the endo can give you some pointers at your appointment.
    I'm currently taking Lexapro to help with my depression/anxiety issues that have been plaguing me for longer than I care to admit. It's a small dose, but it's taking the edge off and that is a much welcomed thing! Might be worth a talk with your dr about looking into meds. Not everyone wants to 'go there' and start taking something, but it's at least worth a conversation! :)
    You are in my thoughts and prayers!!

  3. OK, I can totally relate to all of this post. I am on a break too from my excessive exercise habit. I have a bum foot. So, I am feeling a little less "great" about myself. I am trying "starvation" in order to keep myself from blowing up like a blimp.

    On the "D" front, although Joe was three when diagnoses...many of these issues pertained to me. He wasn't an "easy" three. What I can tell that...It does/will get better. As Reubs ages his numbers will stabilize out a bit...his activity and food choices will become easier to predict and dose for. It is hard to see all that when you are in the thick of it Jules...and right now you are in the thick of it. You are doing what you need to do to get through each day. You will get back to the land of the "living". It takes time, love, patience...and sadly more time...which, living through the "time" to get to a better place...can be painful. I love you. Chin up. Keep swimming. We are all here for you.

  4. Off to the endo again. Why so soon? I hope it goes more smoothly this time. Maybe take a change of clothes for Reuben:P

  5. I'm sending you a cyber hug...hang in there. I know how you feel and wish everyday that it could be me instead of Kennedy. I look at pre-diagnosis pics and they really do make me sad. Hang in there can do it:)

  6. Oh, Jules, I feel for you. It will get easier. As Reuben gets older, he will be more accepting and more understanding of what his D management must entail. You'll be able to reason with him. I know that right now, those days must seem like a long way in the distant future, but they'll arrive. I promise.

    Sending you hugs and understanding! Wish I could be there to help you.

    If it helps, please vent more to us. We get it and we care.

  7. I just want to let you know that, while there are some people who prefer not to publicly address the emotional toll this disease brings to our life, not everyone is that way.

    I'm one of those who appreciates the affirmation that I'm not alone, even in dark moments.

    My daughter was dx at 24 months.

    The experience of managing a toddler is unlike any other stage of this game. Know you are validated.

    Know you aren't alone.

  8. Hello everyone,
    My 2.5 year old daughter has just been diagnosed with type 1 diabetes. Devastating to think she will have to endure this the rest of her life. We have 3 children ages 1,2 & 4.
    I empathize for your situation too. I'm looking for advice, support and would love to meet the much older generation who has dealt with this disease for a long lifetime. We are sooo afraid of her future and don't know what the life expectancy is of a child diagnosed so soon. Her admission BS was *700* with some hyponatremia but no ketoacidocis thank God! If you want to email us privately, you are welcome too. Thanks so much! Also... anyone have a very young toddler on an insulin pump?? How about a continuous glucose monitor??
    Thank you for your responses in advance!

    angie & mike k.
    and our 2 year old daughter Ava Rain.