#1. What do you wish you had known?

The Diapers & Diabetes community has more than quadrupled in the past year, and we are very excited to say there will be many new things happening before the year is through!  To kick-off the developments to come, there will be 10 questions answered by our own D&D families in an effort to help the newly diagnosed feel less alone.  Keep an eye out, this won’t be the last time you see these lists in print….

 

Many times you will feel alone and overwhelmed and this is HARD.  I think back to when we were first allowed to bring our first-born home from the hospital and we were both amazed we were actually “allowed” to leave and we were the ones in charge!  It was the same when our son was diagnosed – we were in disbelief that the hospital staff had faith we were ready to care for all his medical needs…it was like having a newborn all over again but without all the positive stuff, just the feeling that we had been robbed of something so innocent.  It was HARD, but it did get easier, and we did grow and learn, even with mistakes!

 

I wish that the medical team didn’t sugar coat what was going to happen over the next few months and even for the rest of her life.  It was made to seem as though the diagnosis was just a little bump in the road…I guess if someone at the time had just said that the situation sucks and it is going to be emotionally one of the hardest things you will have to do.  But then again, something like that doesn’t provide confidence in the newly diagnosed.

 

I wish I had been told they made a mistake and it was really the ugly kid in the next room who had it….people tell me all the time when I say my son has diabetes “but he’s so cute!”

 

All carbs are not created equal.

 

Go ahead and know that people will not understand even after you explain it 1 trillion times…you are going to get a bunch of unwanted ignorant advice you must ignore.  I swear if I hear about another mouse being cured of Type 1 diabetes I am going to burst.

 

Feeling overwhelmed is totally normal.

 

In time, you will be an expert on your child’s diabetes and you will know more about it than any doctor or nurse ever will.

 

Eventually you won’t have to follow the handbook every time there is a bump in the road, you will start to “know” your child’s disease and feel more confident about what to do.

 

I wish I had been told that it WOULD get easier.  I was so overwhelmed at diagnosis and thought I’d never “get it.”

 

The highs and lows aren’t your fault-you are learning too.

 

Trying to control diabetes in a little one is very hard.  There will be highs and lows and sometimes there is nothing you can do about that.  Take a deep breath, treat as needed, and move on.  I spend a lot of time worrying about numbers and feeling guilty over the lack of control.

 

You are NOT alone!  I thought this was some rare thing for a 1yr old baby and had no idea there were so many other babies and parents out there going through the same thing as me.

 

I wish I HADN’T  been told by my son’s medical team upon diagnosis that I should be grateful it wasn’t 1920 because before that it would have been a death sentence.

 

You did NOT make diabetes happen!

 

I wish I had been told about the difficult behaviors in little ones such as temper tantrums and screaming because they just can’t say how they are feeling.

 

I wish I had been told the hardest thing I will face is doctors dismissing my observations that would prove to be important.  I wish I was told to have faith in my abilities and confidence in my gut instincts.

 

I wish I had been sent to counseling.  I truly feel as though I had post-traumatic stress disorder because it was all too much watching my baby go through it all.

 

It took quite a while to realize that we just have to do the best we can and sometimes the numbers will be in range and sometimes not.

 

I wish I had been told that a high isn’t as scary as a low.  The first time I saw 480 I freaked out and actually had a panic attack because I didn’t know what to do!

 

Stay strong.

 

In the early days I didn’t think my daughter would have a good quality of life again, but now I know I was wrong.  I wish I could share that with other newly diagnosed.  Would be cool to have a support group to reach out to newly diagnosed families in the hospital when we felt like our world was turned upside down…

 

…stay tuned, we are just getting started!

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4 thoughts on “#1. What do you wish you had known?

  1. My 16 month old son was diagnosed 2 weeks and this blog describes how I am feeling perfectly! I am so overwhelmed…and so scared at the same time.

  2. I wish we had known a different answer when our little boy asked us if he’ll have diabetes forever and then started crying. B was diagnosed at 11 months; we’ve been on an animas ping pump since he was 2. He is now 4 1/2 and although most days are good, there are some rough moments like this one was.

  3. I remember when my son James was diagnosed at 13 months. I had been giving injections (pre pump days) and my husband would hold him tight so I would not cut him with the needle. The Child Life Therapist called them “insulin hugs”. Somehow, that helped.

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