Tuesday, April 5, 2011

Who needs a psychotherapist?

Ive realised since my last blog, that the very thing I have been avoiding because of the pain, may be exactly what I have to confront.

I said that it was too hard to think about "before" diagnosis. 

That it feels like torture.

And... it does.     

I find it hard to think back because our life will never ever ever be the same.  I conversely find thinking forwards just as overwhelming and painful.

Those days were carefree. Getting my baby to sleep through the night was an awesome thing.   Not filled with fear, dread, anxiety, multiple alarms to wake and test his blood sugars.    Fear of hypos.   Fear of missing a hypo.   Fear of administering too much insulin, the wrong insulin, sick days when he cant eat and we've already administered insulin.   Fear of the sound he makes when hes low.   Fear of the way he looks and the panic that grips me, the diabolical squeezing in my heart and pumping it three times faster than is normal.   Fear that I have to use glucagon for an unconscious hypo.  Fear that I will be so exhausted that I sleep through an alarm.       Fear of high blood sugars.  Fear of managing Diabetes so badly that Reuben will have complications in later life.  Fear of blindness and limb amputation and things that if I dwell on them make me hysterical with panic.

It seems appropriate to dig out some photos. 

This is Christmas day 2009.   Reuben was 3 months old.    It was to be his last Christmas diabetes free.      I feel so so sad looking at this picture.  I had a bunch of champagnes, it was simpler times.   No diabetes supplies.  Just a few nappies, wipes, spare outfit slung casually in my handbag.   A smooth unblemished tooshie, free from multiple needles breaking his skin.   No lypodystrophy, ( abnormal or degenerative conditions of the body's adipose tissue).  Heck, alot of words I know now werent even in my vocab!  Smooth little finger tips and toes that knew no pain.   A pancreas that appeared to be in working order.   No threat of ketones or gastrointestinal disasters that could land my son in hospital.    Not even one birthday party where he could rip apart a cake and just mung out. :(

It was decided that Reuben was our third and last child.  I was enjoying him, but noticed he was like Jekyll and Hyde.   Someone I loved, but couldnt explain the dichotomy of his moods.

My eldest son started his formal schooling at the beginning of 2010.   It was a busy time.   Reuben began getting random illnesses.   I was tired and strung out alot and also feeling quite isolated.   I began taking Reuben to the dr. to seek answers.   He was always hungry and thirsty and seemingly never satisfied.  When he could catch a break he was a JOY.  His sleeplessness at night was a real confusion for me.   It was like he was in pain.   Surely he wasnt teething already?

Id hazard a guess that this was March - two months before dx.  He was getting thin.   I explained this away as he was learning to crawl and cruise.

 The part that hurts is that he was suffering.   How grotty and acidic was he feeling inside?   Wailing and crying through the night, not being able to get off to sleep.  He was overloaded with sugars that he couldnt process without insulin, so he was wee-ing a bucketload.    He had tummy pains, vomitting, and was super thirsty.   I thought he had broken bones.   The GP didnt investigate my cries for help.   Im so sorry baby Reuben, I really did try to find answers for you.

If I had had even the first clue what was wrong with you, I wouldve demanded they did a blood sugar test on you.

But I had never heard of the symptoms of diabetes before.  Evidently the family GP hadnt either.    Do I blame myself?   Im really not sure anymore. I thought I didnt feel guilt.   Or denial.   Or anger.    But I really do. Im just good at lying to myself about my feelings so I can cope.
I stand up and be the PANCREAS you need.   I try to be reliable for you, be someone who loves you so much they will do whatever it takes (even at 9pm,10.30pm,11.45pm,1am, 3am and 5.30am).......


  1. This sounds so much like our story. The only difference is that Andy never was a chunky, healthy baby. Maybe just a little in the beginning of the 3rd month, but he quickly took a turn for the worse. After weeks of what we thought was colic, he started sleeping through the night, just before he got dx and WE couldn't sleep through the night anymore.

    Don't be so hard on yourself. We are trying to make a difference by spreading the word and letting others out there know that this can happen so young and parents need to be educated on the symptoms. I think more and more, the doctors are becoming aware, but we are still a long way off from getting 100% of the kids dx before DKA. You are doing a great job. Keep educating. That is your legacy to Reuben.

  2. dont be too hard on yourself hun (though thats hard for me to say as I'm just as bad, if not worse, about this very thing. lol). I was the same as you... for a long time, lying to myself to try to cope. In fact, I did that for probably a year and a half after Lenny was diagnosed. Don't get me wrong, i did my fair share of crying, screaming, shouting and cursing about and at diabetes... but truth be told, I dont think I ever really allowed myself the full blown "mourning" period everyone needs. Us mama's tend to go into robot mode when confronted with an obstical concerning our kids. We just kinda jump into action and do whats needed done to make our kids as healthy as we can, and as happy as we can, and push our emotions deep down until we see a glimmer of opportunity to express them without our kids seeing them. Atleast thats the way it is for me. I tried for a LONG time not to ever let Lenny see me cry. I still try like hell, but honestly, its becoming a more difficult battle to push those tears back. I'm beginning to get the mentality that, well, its ok to allow our kids to see us cry over a disease they are going to have for the rest of their lives, atleast on occation. If nothing else, it shows them that we are still human, it shows them that we dont like diabetes or what they have to go through anymore than they do, and it shows them that it's ok to share your feelings with others.

    Like you, I had NO clue what the symptoms were pre-dx either. Honestly, to this day it still ticks me off that this disease in the general public's eye, is "oh its just diabetes?" mentality, yet, not a single person I have met that hasnt been affected by type 1 in some way, knows the symptoms. In fact, theres even some who have cousins, aunts, uncles, etc with type one that still dont know the symptoms!

    A few months ago, I caught a glimpse of a commercial on TV about allergies. It actually infuriated me! Why? Because they included the symptoms to look for for allergies.... ALLERGIES! And yet, do any commercials include the symptoms to watch for for diabetes??? NOPE! grr.

    We just gotta keep advocating and educating and HOPING our words get across to those we talk to, and STICK with those we talk to. Keep up the good work mama!

  3. Oh Jules...I think those pre-dx pix are the hardest to look at. They transport us to a different time in our lives. I will never be the same person I was pre-dx. A part of me has changed...but...I think it is healing a bit. It take awhile. A GOOD.LONG.WHILE.

  4. ((hugs)) The guilt can destroy me if I let myself go there. You are an awesome mom! Reuben is lucky to have you! He is such a doll too! I'm sorry his babyhood was swept away by this awful disease! It may be a morbid way to look at things but the way I cope with all of the ugly feelings is to be thankful that my daughter is still here and I get to care for her. There is still a lot to work through and come to terms with in my world and some days those things take over my mind as well. Keep on keeping on, you are doing a great job caring for your boy!

  5. Hi Jules.
    Thanks for your comment!

    I wasn't diagnosed until I was 13, so I remember all the feelings...and I had many of the same ones you have.
    I remember thinking the way I felt before my official diagnosis was normal! I just thought that I was weird with my constant thirst, urination, moodiness. After I was diagnosed, I had a hard time thinking about the past...I thought I would never be able to have fun again. I thought I would never be able to eat normal food, never be able to swim. Slowly but surely I came to accept my diabetes and now live a happy and normal life. It's become so autopilot that I often even forget I have it! It sounds like you're doing an excellent job with Reuben and I'm sure that, because of you, he will one day be able to manage this disease himself with ease!

  6. Jules, I hope you don't ever feel guilty about not recognizing the diabetes. No one expects it in babies! I've always wondered if we hadn't caught it by accident (doc was testing her urine for bacteria when she found the sugar), would I have noticed? How sick would Elise gotten? I knew something was wrong, but she wasn't showing symptoms like thirst or wetting through diapers.

    They even did a repeat urine test on Elise because they thought the test was wrong. You're doing a wonderful job. It isnt easy, but it has gotten easier as Elise has gotten older.

    P.S. Elise as only 3 months at Christmas too and I often think about that when that time of year rolls around; she only got to experience 1 Christmas diabetes-free. I don't know why that bothers me so much, but it does.

  7. I'm sorry. I don't know what else to say except I am sorry for you and your little one. What a precious little boy. Give yourself the permission to grieve, but throw away the guilt. It is a thief.....one you can do without. Diabetes has already stolen so much from you.
    Keep your head up.

  8. Oh Jules...wow. Even though a Diabetes DX sucks, I cannot imagine it happening to my infant. How incredibly scary. While Adam was 4 at diagnosis, he was at least able to communicate things to me.

    This diabetes thing is a tough road. I'm glad we have the DOC to help get us through!

  9. The pre-diabetes photos make me sad too (I have 9 years of them). Especially the ones taken 3 months before E was diagnosed. I was so proud that due to us getting him to exercise more he had lost weight and was now decidedly 'normal' rather than tending to a be a little overweight as he had been the previous year or so. Wish I could have my healthy fat kid back!