Life for a Child

Wednesday, February 19, 2014

At Least It's Not...

**This post was originally written about a year ago.  I was just talking about this issue with some local D Mamas and thought... I still feel this way.  Maybe you do, too...**

A few weeks ago we took Sweets to the doctor to check in after her "episode" with the blood draw.  We were concerned about her reaction and the fact that she displayed seizure-like actions.  (You can read more about that here.)

We were sitting in the waiting room when a new mom came in with her baby and approached the check in window.  This was obviously one of her first appointments.  She stood at the check in window and talked to the receptionist. I couldn't help but overhear.

She was telling the receptionist about how tired she was and how glad she was that she had some reinforcements coming soon so she could get some rest.  You could tell by the way she said it that she wasn't THAT upset.  You know... it was kind of a right of passage thing.  You could see and hear her excitement about having a new baby!

I remember that feeling.  It made me laugh, though.  Because I was thinking, "Lady.... You don't know tired!"

I posted that little thought on facebook later and it got quite a lot of comments from other D Mamas about the whole issue of sleep and lack thereof.  But one of the comments was from a girl I went to high school with.  She posted something to the effect that she can't imagine what it's like to raise a child with diabetes but that we should all be so glad that it's not something worse like cancer and that we should quit whining and be grateful because there are other mothers out there that could say the same about us.



I didn't respond at the time because, frankly, I was just too tired to get into it and I did not want to turn it into a debate.  This girl does not know me now nor has she ever met Sweets.  She just doesn't get it.

But...  I'm responding now.

First of all, I wasn't being disrespectful to this new mom.  Truly, I wasn't.  You could tell she was excited to have a new baby and be part of that "club".  My response to her was a lot like the way people who have already had children respond when you discuss your birth plan for your first child.  Or when you, before kids, talk to an experienced Mom about how your kid will NEVER do/act/say something like THAT.  It's that smile and nod while saying in your head, "HA!  Just you wait....!"

Funny story on this...  Sweets was really a great baby.  In the hospital she slept A LOT.  She never cried.  The first night home, I was talking to a friend and when we hung up she said, "Good Luck.  Call if you need me."  I thought that was odd.... why would I need luck?!?  Jason wanted to set the alarm so we wouldn't miss her feedings.  See?  You're laughing aren't you?!?  We were so naive.  She screamed all night long.

So - I've been there.  I know what it's like to have a newborn and be up throughout the night doing feedings.  I know what it's like to worry about SIDS and every other crazy thing new parents freak out about.  And let me just say, it doesn't even compare to life with diabetes.  The exhaustion and lack of sleep is so much worse.  We are going on FOUR YEARS.  And there is not really an end in sight.  (Other than college?!?)  And the fear of losing her in the middle of the night....  it's always there.  It never ends either.

The other thing that really bugs me about statements like that is this...

I want to say...

Do you think that I do not give thanks every. single. day. that I have a healthy child?  I know our children are not guaranteed good health.  Don't think for a minute that I'm not grateful that I have a child that can run and play and laugh.  A child who can read and go to school and make friends.  A child who can hide her disease if she so chooses.  Trust me.  I don't take it for granted.

It makes me think of this quote...



Truth.

Just because someone has it worse does not mean we are not allowed to feel sad.

And there's a lot outsiders don't know about this disease.

Before you make a statement like that...  Go spend a day in our shoes.

Count all the carbohydrates your child consumes in a day.  Prick their fingers 10 or more times a day.  Calculate how much insulin they need for food and don't forget to take into account the activity they will do later.  Or have done before.  Don't forget to mix their food between fat and protein and carbs.  Just the right amount.  But don't be surprised if today's reaction is totally different from yesterday.  Go with your child on playdates.  Know you can't leave them alone because they can't take 100% control of this disease and the other parent doesn't know what to do.  Know the other people who know how to take care of your child... well, you could count them on less than one hand.  Don't forget to review numbers to see if basal rates need changed.  Are they growing?  That could be messing things up.  Or getting sick?  Or nervous?  Maybe it's hormones.  Or if they are running low.... hope it's not the stomach flu.  You know a simple illness or tummy bug can send you to the ER, right?   Don't forget to order supplies.  And fight with insurance to give you what you need.  And find a place for it all - because you'll need a BIG space.  Your little medicine cabinet isn't going to cut it.  Hope you have good insurance.  It's expensive.  Make sure you keep up to date on the latest research and products.  And don't forget your visit to the hospital every three months.  And get the blood work done.  And don't forget about the other diseases your child is more likely to develop.  Make sure you comfort your child when he feels different from all his friends.  Or when she's crying because someone made fun of her for her pump.  Or when he's begging you not to give him a shot or change his site and pleading you to stop hurting him.  Make sure you communicate with the school nurse.  IF you have one.  YOU may have to go to school every day to give insulin.  And Lord help you with birthday treats.  And parties.  And sleepovers.  And sports.  You know it's more difficult, right?  Make sure the kit is full and you always have juice on hand.  Remember to bolus before they eat... but not too early.  And then make sure they eat it all.  Otherwise they will be low.  Keep working to achieve a steady blood sugar.  You don't want spikes.  Or a too high number.  Or too low.  Make sure you have the glucagon and know how to use it. You don't want your child to have a seizure and you not be ready.  And make sure she isn't too high for too long.  You better check ketones.  If she's in DKA you have to go to the ER.  Push the fluid.  Try not to worry about what blood sugar is doing to her body.  Don't think about it destroying her blood vessels.  Wreaking havoc on every single organ in her body.  Try not to worry about it affecting the blood vessels in her eyes or that it could rob her of her vision.  And don't forget to go to the eye doctor every year.  Don't think about how it can cause never damage and end in amputations.  Oh - and don't get upset when someone tells you that you shouldn't have fed your child so much sugar.  Or that you can cure the disease with cinnamon.  Or a special diet.  Don't forget to set your alarm to check at night.  I mean, if your child went low and died and you would never forgive yourself.  It can happen.  Try not to let that fear rule your life.  Make sure you stay up if he's low to test again in 15 minutes.  Make sure you wake up to retest if he's high and you give insulin.  Oh - and make sure you can make decisions in the middle of the night.  Try not to freak out if things aren't going as planned.  And remember that YOU are the one responsible for informing her teacher of what she needs to know about diabetes.  Make sure you have plans in place at school.  You're gonna need to be in charge of that, too.  Oh- and one more thing... don't forget to make sure your child feels as normal as possible.

They don't get it, do they?

They can't KNOW.  Not unless they live it.  And we'd never wish it on anyone.

Are we glad it's not cancer?  Are we glad it's not "something worse"?  Of course we are.

We stare death in the face every day.  We know we are not promised another day.  We don't ever take it for granted. We know better than most how lucky we are to have our children healthy and happy.  It takes a lot of work to make sure that they ARE healthy and happy.  Don't treat us like this disease is no big deal.

We have every right to feel sad.  Or mad.  Or overwhelmed.  Or grief stricken.  Or happy.  Or TIRED!

We are allowed to feel however we feel.

And if we don't let ourselves FEEL... feel the bad with the good.  The sad with the happy.  The overwhelmed with grateful.  The grief with the joy...  The dark will overtake our light.

There's a saying that you can't know joy until you experience pain.  You need both.  Your joy is not as joyful if you've never experienced the sting of pain.

It's like that.

There's a lot of darkness in the disease.

I think we have to acknowledge that darkness in order to live in the light.

Acknowledging that darkness doesn't mean we think we have it so much worse than anyone else in the world.

Acknowledging that darkness makes us MORE grateful.  More thankful.  More happy.  More joyful.
More able to focus on living in the Light.  The Happy.  The joy.  The LOVE.

Because that's what it's all about.

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8 comments:

  1. Amen to all that you've written. Your post makes me think of one of my daughter's friends who is now cancer-free after 2 years of chemo for leukemia. Guess what one of the side effects of her treatments was? Yep, Type 1 diabetes. Her case is incredibly rare and complicated, and who's to say she wouldn't have become diabetic without the leukemia. Her mom mentions all the time how much harder and scarier diabetes is than cancer. I dare anyone else to make this statement. This mom knows. Both are diseases that no parents wants his/her child to experience.

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  2. I've stopped trying to politely educate the "outsiders" who think they know but really know nothing about diabetes. Congrats on not verbally ripping that ignorant woman's throat out. Sending lots of love.

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  3. What a great article. My granddaughter was diagnosed at age 6 and has been in control of her diabetes since day one. She is now 11 and knows more about diabetes than most family physicians. She can tell when she is high or low, does her own site changes (from day 7) and administers her own insulin, now thankfully through her pump. She has taken control and she will never let diabetes rule her life.
    just one note....schools are required to have a school nurse with diabetes training on school grounds during school hours. This is a law. So if you don't have one at your school it is time to fight.

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  4. My son was diagnosed at 15 and he is now 20 and just got out of the hospital for dka. So scary. I am glad you wrote this. Whenever people hear diabetes they think type 2. God Bless you and your child.

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  5. My Mommy is staying with us right now. I'm 45 & have had T1 for 23 years this June. Mommy is here because my younger brother (41) has T Cell Non-Hodgkins Lymphoma. Mommy has been here since the end of May & it looks like bubba might finally be ready for a bone marrow transplant on March 5th. Ironically, the day after he turns 42.

    Mommy was picking up my insulin a couple months ago & a stranger said "Well at least your child doesn't have cancer". My pharmacist says my Mommy just stared at the women for a good 3 minutes before she had enough control to say, "Actually my other child DOES have cancer. And if I could have one wish it would be that NEITHER of my children were ill. The truth is that in a few months my son has a very good chance of being cancer-free & will live for another 40 or 50 years while my daughter will still struggle with a disease that has not cure & will probably kill her in the next 20 years." The woman tried to stammer an apology but my Mommy interrupted her. "At least with cancer there is something to be mad at & to fight. Plus people don't make ignorant comments about your kid having cancer." My Mommy rocks & so do you!!! :)

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  6. This was very well written. Thank you for sharing. One of my dearest friends deals with the same sort of naivety, and often blatant ignorance regularly. Everyone's trials and challenges are different. Instead of comparing ones to another we as a people need to learn to just care, love, and show compassion for whatever someone may be dealing with.

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  7. Hi. I love your blog, it gives me a lot of insight into the feelings of my four year old. She has autism as well as diabetes and is not able to communicate her feelings in the same way that typical kids do. I read this post the otherday and although I can relate I usually am not to perturbed by other people's ignorance. But today is another matter altogether. Some ignorant but well meaning person excluded my child because they believed that a cupcake wasn't good for her. I am so so mad and angry. The woman told me that sugar is poison for my daughter and that she couldn't have it. Ahhhhhhhhbhhh! It was a school birthday. My daughter is 4. She has NO idea why she can't have a cupcake and the truth is she can and should participate with the class. I am so mad!!! Thanks for your post. I don't feel quite as alone now.

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  8. SO glad to find your blog! I read your story about your daughters dx and so much of it was just like ours..... I'm sorry. I'm sorry that we have this in common now since my 4 year old was just diagnosed last week with type 1. They say that there is soooo much information out there to help us now to learn about diabetes type 1, and there is, but it's almost to much. I just need a mom who has gone through this and not have to read every diabetic magazine and the 1000's of books they gave us. Thank you for sharing your jounrey. will be a follower

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