Life for a Child

Friday, August 2, 2013

The Outsiders: What IS Normal?

We've been doing this diabetes thing now for a while.

We've got a routine down.  It works.  We roll with it.

Some days are harder than others.  Sometimes things don't work.  Sometimes we SWAG wrong.  Sometimes there's drama over a site change or something.  Sometimes D is more of a pain in the ass than others.

But any more... not much ruffles my feathers.  I'm calm.  I feel like I can handle most anything D throws at me.  I am used to this life.  It is now our new normal.

No- scratch that...  It's not our new normal.  It's just our life.

It's what we know.  It's ALL Sweets knows.

And we forget...

Our life is NOT everyone's normal.

Awesome D Mama Alexis and I were just talking about this.  How we forget...

We forget they don't know.  They don't get it.  They aren't used to what living our life looks like.  The things we have to worry about and consider just don't don't even enter their minds.

And we are glad for that.  We don't want them to know like we do.

But sometimes it hurts, too.

It's normal for us to have our kids attached to medical devices.  It's normal to have to stop an activity to test and treat.  It's normal to plan meals with extra thought.  It's normal to count out and measure everything they eat.  It's normal to wake up at night to check.  It's normal to test and see some blood many, many times a day.  It's normal to have a bag of medical supplies and insulin in our fridge.  It's normal to talk about basals and bolusing and how many fries she ate and when the best time to restart Dex would be given activity and peaking insulin.

We forget that to others, this is different.

My kid can't just eat when she's hungry.  She can't just eat out of the bag of Goldfish crackers or the bowl of popcorn with her cousins.  She can't swim for hours without getting out and testing and sometimes having a snack.  Sometimes she has to stop and eat even if she doesn't want to.  Sometimes fun times are halted because she has to change her pod or test her blood sugar.  She can't go off with her older cousins without one of us because they don't know what to do.  She can't just jump in the pool without a care.

All this stuff... it's not really that big of a deal.  In the scheme of things... it's just not.

After all, it's our life.  It's what we know.  It's just what we do.

But it becomes a big deal when no matter how hard you try, your child knows things are different for them.  And they know why.

Sweets was so little when she was diagnosed.  SHE thinks it's crazy when people do just eat out of the bag.  Or when they just eat without asking and testing first.

But she's not stupid.  She now knows it's what most people do.  She knows no one else in our family has diabetes.  No one else wears a pump.  No one else checks their blood sugar before they eat.

She knows she is the one who is different.

And, at least right now, 98% of the time it does not bother her.

She has her moments where she may huff and puff but soon she's off to the next thing and the moment has passed.  There are times when she expresses something... more.  But those are few and far between.  At least for now.

It bothers ME.

98% of the time, I just roll with it.

But sometimes it smacks you in the face.  And it stings.

All of the "it's not fair".  The "why her?"  The "if only it was me".  The "I hate this".

It rushes back.

And there you stand.

Watching your precious sweet one testing while everyone else is in the pool.  Watching her sit out and treat a low.  Watching her watch everyone else.  Wondering if it's bothering her.

And the tears come.

Once again.

Because it's NOT fair.  Because you DON'T want this for her.  Because you wish her worries could be the simple childhood worries of her friends.  Because there is nothing you can do to take this away.

Because you feel so alone.  Sometimes, even surrounded by family and friends, you feel like an outsider.  You feel scared because you are the ONLY one who knows how to care for your child,  And you feel angry.  Because it shouldn't be this way.

And then it's gone.  For me, sometimes it goes as quickly as it comes.

The air gets knocked out of me.  And in the next breath, I'm ok.

I'm back to my normal.  I'm back to my every day.  I'm back to solid ground.

The more time passes, the easier it is to get to that place of "ok".  It gets easier to pull it together and remember my life is pretty awesome.  Even with diabetes.




** Some of these truths are mine.  And some belong to Alexis.  And some belong to us both.  I've weaved our stories together.  We are "Same Same".  And I have a sneaking suspicion that we are not alone in these feelings.  That may be the best part.... we are NOT alone.  Does it matter that we are on opposite sides of the country?  Nope.  Texts go really fast.  So does facebook.  And email.  And it grounds us.  When you are feeling like this - know you are never alone.  And you can bet there is another Mama or Papa feeling the same thing.  Cling to each other until you get your footing again.  Support is what we do best!**


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21 comments:

  1. This is the first thing I read today. It's awesome. You really described it well. Thanks for the insight.

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  2. I so needed this today, we are approaching my now 5 year old daughter's 1 year "DiaversarY" and these past few weeks have been hitting me kinda hard! Thanks for showing me I'm not alone in my feelings! :)

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  3. Love it! Love the same same feeling. I'm so grateful you put me in contact with Alexis when Elyssa was diagnosed so I could have that same same feeling locally! You're awesome! :)

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  4. I needed this today too! Thanks for writing this. It reminds me I'm not alone when there are so many days I feel like no one gets it.

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  5. Thank you for this. Some days I need the reminder that we aren't alone in this.

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  6. As a mother of a special needs child( LOTS of special needs) AND a type 1 myself.......I so get this! So true....moment by moment!!

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  7. I have to disagree with one part, respectfully, because you KNOW I love you...

    You said "All this stuff... it's not really that big of a deal.In the scheme of things... it's just not"

    I think it is a big deal, maybe not to outsiders, but to THEM, the ones sitting on the sidelines, the ones gettng out of the pool to test ect...it is... IT IS HUGE!

    Maybe I feel that way because Justin is older and I can see the frustration and saddness that he pushes down deep inside. I know he doesn't complain, but the way he carries his body as the rest of the world move on without him SCREAMS 1000 silent words.

    Mentally. Emotionally. It is a big deal.

    Great post Hallie, as usual.

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    1. This is a great post. I would just like to say, mainly in response to Lora's comment above - it's only as big a deal as you make it. To me, and to my T1 husband (particularly to him, actually), and to Isabel, it's not a big deal. We refuse to make it so! Maybe I'm weird, but personally I don't get those moments where it knocks the breath out of me - I don't cry over diabetes, I don't hate it. I have those moments about other things (miscarriages, bereavements, some serious stuff that's gone on in the last 2-3 years in our lives here). In the scheme of things, OUR things, diabetes isn't a huge feature. But I know that to others, it is - it is COLOSSAL. That's why this post is so apposite - it helps those who do feel like this recognise that their feelings are valid and they are not alone.

      I do find it sad that Lora uses the phrase "the rest of the world moves on without him" - that speaks volumes about the way she feels about her son's diabetes and the world, and I hope that at some point she can realise that he doesn't have to watch the rest of the world move on without him, he can participate, be involved and be valued by society regardless of the condition.

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    2. Agreeing with Lora, my T1 kiddo (age 6) feels like the world keeps moving on around him at times when he has to wait for a BG to come up, or just to get checked. He has verbalized it to me on occasion, all without me making him feel anything! That is how he feels! And I don't push that on him! Diabetes sucks. It just does. It is not all glitter and rainbows!

      I would go out on a limb to say that the majority of parents of kids with D have "those moments" where we cry or hold our breath. Most of my baby's life has been lived with D and that just sucks.

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    3. Lora, I love you back and I think you're right. It's not a big deal to me. But it is to her. I even said that in the next line of the post! "But it becomes a big deal..."

      I don't make it a big deal to her. It just is. In fact, I'm trying to make it less of a big deal. To hurry things along. To distract her. Whatever. But like I said, she's not stupid. She knows why she's the only one sitting out. If it's a big deal to her, that's not because I made it a big deal. It's just how she feels. And I want her to be true to her feelings. Always. No matter what.

      Kerry, I know Lora personally. Not just online but in real life. She's one of my best and closest friends. Just last week we hung out together. Our kids played at the beach and in the pool and had a great time. Lora is a great mom. Both our kids dealt with lows from their crazy insane activity. It was unspoken, but you could see the camaraderie between the two of them. "You low? Me too." Neither of us made some big deal out of it. It just was. The kids had to stop and eat. They didn't want to, of course. But their reaction and grumbling about having to stop playing had nothing to do with the way either of us handled it. Lora has a very healthy attitude about diabetes. In fact, if you didn't KNOW Justin had D, you wouldn't pick it up from her. She's vigilant but laid back. The perfect combination, in my mind. And Justin is awesome. Just ask Sweets.

      It can be so easy to pass judgement on people you don't know and only interact with behind the safety of a computer screen. I know you are trying to help - but I think it's important to keep in mind - for all of us - when we are reading blogs and comments that we are only getting a part of the story.

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    4. The thing I love about reading D blogs is that most of the time I read them and think...SAME SAME! But I also love that there are times when I read something and I think, wow I never looked at it that way or hmmm doesn't really work like that here in my family. BUT ONE THING I NEVER DO IS JUDGE SOMEONE FOR THE WAY THEY HANDLE D OR THE WAY THEY LOOK AT THINGS!! I look at blogging - writing and reading - as a kind of therapy, a way of making myself (and in this case our lives with D) better. Uninformed, judgmental and hurtful comments don't facilitate that in any way.

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    5. THanks for this one and for that lovely picture of "why" you share. I feel so unexplainably thankful for the DOC just because of the "same same" part. We just found out this past week that Isaac has celiac disease. For some reason this knocked my socks off more than the diabetes diagnosis. I think because we knew all along that there was this slight possibility and I see my husband living an incredible life with t1d it was already our "normal" before Isaac was dx (the dx did stink, but wasn't a shock kwim?) Anyhow this whole CD has left me feeling in the dumps and just being able to reach out to others with children with t1d and CD has once again helped me see the light and know that although it's overwhelming right now eventually we'll get to the point that it's our normal and he'll have times where he isn't thrilled about all he needs to do to stay healthy but at least we know. Anyhow, thanks for this.

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  8. Kerry,
    Do not Assume you have any clue about how I feel about my son's diabetes. My son, Justin is his name BTW, IS involved. He plays sports, he rides bikes with his friends and he even volunteers along side me multiple times per month. That's right, at 12 years old, he gives his time to volunteer on weekends. I would say that makes him a pretty valued part of society. BUT what do I know - other than how big his heart is.

    JUST so YOU know... I do not bring attention to the look on his face when he has to stop what he is doing to test or treat. I do not make reference to the time he looses every time he has a seizure due to epilepsy. NOR do I bring to HIS attention any of the other side effects that come along with the multiple medical challenges he faces.

    Do not judge me when you have no clue what we live with everyday.

    I actually feel sorry for YOU, Kerry, for your lack of compassion and empathy for others feelings. Many of your responses to people "speaks volumes" to that fact. People need support, Kerry, not criticism.

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    1. Point taken - apologies! I wasn't judging or criticising, or anyway I didn't mean to - just found it sad. Yes, I don't know the whole story, but you didn't tell it, so I couldn't have. What you did say, I found sad, and I wanted to say that I hope you find some way around those feelings. That was all, but I shouldn't have said it. I guess the language/cultural barrier prevented my meaning from coming across effectively. I'm British and sometimes we Brits say things and see things differently. So, I'm very sorry and won't be commenting like that again. In fact, I think I will steer clear of all such emotive blogs again - clearly my point of view isn't appreciated! I don't have a problem with that - I'll get on with doing things my way and fingers crossed we all muddle through in the end :)

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    2. One more clarification as to why I didn't use your son's name (and why I'm not doing so now); it's another example of a cultural difference. You took it as rude that I didn't use his name, but to me, it would have been rude (over-familiar) to do so. Just wanted to clear that up :)

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  9. Hallie, loved this post. I also feel a little calmer in how I handle the day to day things. I think its more confidence in myself that I can handle it - whatever "it" is today.

    What does worry me is that even though we are not acknowledging it...Ally knows that she is different. I don't need to do anything to make her aware of it. We do not act like its a big deal to stop and test or stop and treat, even though everyone else goes on with the activity. Where I get stuck is whether or not I should act like its nothing? (CUZ ITS NOT!) I often wonder if she just internalizes those feelings. And I have to think that long term that's not good either. I'm searching for a balance...acknowledging that her differences are an inconvenience and at times painful, but also encouraging her that she can do anything even with these differences.

    As always, Hallie, I love reading your posts. They always get my brain circling...thanks a lot!! :) Just kidding.

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  10. This x 1000000, thankful for you, and all my other girls ^^^ who get it. It can be lonely and regardless to how normal we want our kids to feel and live there are moments it's not possible. PERIOD.

    Thank you for sharing my thoughts beside yours, it was such a relief to have that sense of same same, especially this week when the "other world" has been hitting me in the face. It's stinging. Bad.

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  11. I understand perfectly the thought that you shared, as I'm feeling exactly the same with my 9-year-old daughter who's also T1.

    I found your blog inadvertently today, however, I really liked it.

    I also write my own blog, in French though as we are in Quebec.
    Please find it here: http://type1auquotidien.wordpress.com/

    I decided to open a Facebook page as well and will probably share some English stuff as well...

    Have a good day,

    Célyne

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  12. YES. Most of the time I'm good, life is normal, etc... but once in a while WHAM it smacks me in the face. Glad to know I'm not the only one.

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