Monday, July 26, 2010

Why I Still Cry . . .

Last week we (The Houston Five + Poppa DeJulius) attended the JDRF Walk to Cure Diabetes Kick Off Dinner. I promised myself - no crying!  Dang!  As soon as the Nick Jonas video started playing - I was CRYING! [Click HERE to see video]

And then again when all of these young children were on stage . . .
Lots of Cute T1 Peeps you may know in this picture.

 We have Elise from Death of a Pancreas , Liam from Sticking it to Diabetes , and Miss J and Miss G from 2 Green Eyed Girls (& their daddy too)

Look at these cuties. . .
Liam, Elise and Nate

Why do I still cry and get so emotional when discussing diabetes? Why?
I have friends and family members that have had T1 for years and are totally fine.  I read blogs written by men and women that have had T1 for as long as they can remember and they are living happy, healthy, and successful lives.  So, WHY do I CRY?

Well, sit down just a spell and let me tell you why -

Because diabetes SUCKS.  That's right I said it - it sucks.

Sometimes I wonder if I cry more for me or for Nate?  Well, some days I think I do cry for me and some days I cry for Nate.

On September 17th of 2009 - everything changed in my life.  Everything.

My life is hard.  Yep - I said it.  It's hard.  Not easy  --- not a lot of easy over here at the Houston house.
Sometimes I just get sad.  Sometimes I get mad.  Pretty damn mad!  Sometimes I just think - you know what?  This is bullshit!  Yep - I said bullshit.

It's BS that I have to use a lancet to cut my son's finger 12 times a day, make him bleed, so that I can test his blood glucose.  Yes, that is BS.  Nate doesn't even flinch - he's so strong and so tough and he is ONLY 2 years old.  That is BS.  If you are reading this and your 2-year old does NOT have diabetes - what do you think your child would do if you cut his finger and made him bleed even 1 time?

It's BS that a drug that smells like a big band-aid is infused into my son's body all day long and that stinky drug called insulin keeps him alive.  It's BS that if I make just 1 tiny mistake with that insulin pumping through his body - he could DIE.  See what I mean -  total BS!

It's BS that I NEVER sleep.  Seriously - Never!  Anyone that knows me well knows that is not a good thing.  It is my job to keep my son alive and it is a 24/7 job.

It's BS when people ask me - - - 'Why are you still checking him at night?' or 'When will you be able to stop checking him all night?'.  I want to ask them when they would stop?!?!  Would that be rude?  If your child had a disease that could potentially kill them - when would you stop checking?

It's BS when people tell me --- Oh, my cousin's brother's son was diagnosed with T1 a couple of years ago.  They're fine.  Everything is fine.  They have it totally under control.  OK - calling BS on that.  First of all if you tell me 'they have it under control' then you have no idea what the heck you are talking about.  A person with diabetes can have good control but there is NO such thing as total control. Everything is a roller coaster with T1 especially with children.  Another big fat BS when you tell me that 'they are fine'.  Really? You know that for a fact?  Or do you just assume because everything looks ok from the outside that everything is fine?  I can pretty much GUARANTEE that everything is not fine on the inside --- I don't care how long it's been since the diagnosis there are still good days and bad days.  I can GUARANTEE that every mom of a T1 still cries every now and then ---- if she doesn't then there is something wrong!!

It's BS that I am begging people for money to support the JDRF because MY son has diabetes.  It's BS because I am asking (begging) my friends and my family to walk with us, support us and donate but I feel like I'm asking strangers. It's BS because I never see my friends anymore and when I do I'm sure they are sick and tired of me and my tired ass begging them to support MY cause.  But what is NOT BS is that my son needs a cure and that is why I will keep begging anyone and everyone to help.

It's BS that I miss my normal, boring life.  I miss my friends.  I miss girls night out.  I miss hanging out and chatting with other moms.  Even when I try to do these things my brain is such mush from all of the numbers swirling around and the lack of sleep I feel like I'm not really there.

It's BS that I have to weigh, measure and count every little thing that goes into Nate's mouth.  Seriously - it is SO much harder than it sounds.

It's BS that I cannot get insurance for my children.  Yes, I know there are options out there but the options are BS.

It's BS that my 6 year old asked me the following question "Mom, if Nate has diabetes and Sophie has Crohn's --- what am I going to get?".  That is BS.

Here's why I still cry - - - because when I look at my son he looks so healthy and beautiful but I know that his BG jumping all over the place. I know that that 325 that I saw on the meter this morning is BAD!   It's really bad.  I know that his life expectancy is shorter than you son's life expectancy --- what mom doesn't cry about that?  A child's mortality is something a parent should NEVER have to think about and yet I think about it every day.

I cry because I want a cure so bad that I can almost taste it and yet somehow I won't allow myself to think about it.

I cry because I want to take this stupid disease away from my son --- I just want to grab it and take it away.

I cry because type 1 diabetes is so misunderstood and I want to tell the world all about it but when I try to discuss it all I can do is CRY.

That is all.
Tomorrow I will be back to sunshine and rainbows.


Joanne said...

You're absolutely right... it is BS, and it SUCKS, and I hate that ANY of us have to live this life.

There's not really much else I can say but I am so thankful to have you as a friend.

Guess what I'm doing? Yup. Crying.
Know why? Cuz you are SO RIGHT my friend. All of it. It is total horseshit.
I am so right there with you. I am ANGRY, too. Some days are better than others but it's there. I can't help it. I spent an entire rare night out with my hubby last night bitching about being angry. And I couldnt stop because I'M JUST THAT PISSED OFF. I know it's not the politcally correct way to feel. I know people expect sundshine and rainbows. I, too, want to punch people that tell me that so and so has T1 and is "fine". You are right. BS to that. I also want to punch people that ask why I still check at night. I'm mad, too. And when I'm mad, I cry. When I'm sad, I cry. When I'm frustrated, I cry. I cry a lot.
You are not alone. Go ahead and cry. Go ahead and be totally pissed off. Feel what you feel. I think we'd just explode if we tried to just push it down and not recognize those feelings. I'm with you sister. It's total f-ing bullshit. That's all I got. :)

Wendy said...

Beautiful pictures. I love seeing those cuties up there together!!!!!

It's BS to keep asking if my child "can have that". Like I'm just going to give her something that could kill her or whatever. I'm her mom. If I'm saying she can have something, keep your trap shut. I'm in charge here. If you're genuinely interested in getting educated, try asking an empathetic question instead of making an accusatory inquiry with a tone of shock and awe.

Speaking of being in charge....unless you honestly know what you're talking about, stop with the sideline management. I know when she needs a sugar check. I realize that frosting contains sugar. I'll decide if I'm comfortable enough to leave her somewhere. Oh, and if you ask me what her numbers have been doing lately, I'll tell you. But don't bother asking if you don't have any idea what I'm talking about.

BTW, if I didn't feel my child needed to be checked at night, I'd be much happier to sleep through it instead.

I feel much better now.

Thanks :)

Lora said...

That is the best response to the 'Why are you still checking him at night?' question that I have ever heard. I will be packing that into the back of my brain for future use and I could care less if its rude!!!

I agree... total BS. ALL.OF.IT!!
I wish I could tell you that crying goes way with time, but I do not have the proof to back it up yet. Even after 21 months. 21 LONG months.

Sarah said...

I wish I could say that those people whom say that "so and so" is fine with their diabetes is right, but really here I have an amazing husband who can sometimes be a total ass because of his BG, he can be totally crushed because of an off A1C, he can have a horrible night of sleep because he has to get up routinely and check/ it's just crap saying it's not a big deal. such crap!
I appreciate this post. I had a run in this weekend with a person asking/stating that Isaac's diabetes must be the "bad" kind as he's using an insulin pump. Then today I had another friend tell me that the Paleo diet will cure Isaac and she'll send me some books on it. I don't curse but a few f-bombs wanted to fly out.
I think often about how awful the poking is. I think of how it hurts me and here my babe hands me his little chubby fingers and allows me to do it so often without any complaint. I hate that he tried to hide his hiney from me the other night so that I couldn't do a site change. I hate that I feel selfish for thinking about how my life is now gone and I will have no career and no free time for a loonnngggg time.
But...I am just thankful for life. I think how quickly it can go sour (we lost my father-in-law to pancreatic cancer last spring after 8 month battle) and I know that amongst the crap there is still life.
so despite that nasty band-aid smellin' insulin I'm still hoping for a cure and forever grateful that you're still hounding your friends to help fund it!

Penny said...

Sending you love to get through all of the BS.

Heather said...

You are right. It is BS. (yes, I am crying by the way.) A LOT of it. You are not alone sister. I feel the same way. Love your post. Cryi8ng right along with you. sending a BIG ((hug)) your way.

phonelady said...

Yes you are right it is BS and it seems funny to me that our government can find money to build bombs but yet cant find it to find a cure for diabetes . Thanks for such a powerful post .


THis is an incredible post, so raw and honest. If I spend too much time thinking about where all that money for a cure is going, I worry that, like many have wondered, the cure will be kept from us because this country makes so much money from us! I spent $240 on two bottles of novolog to keep myself alive for the next month.

Keep speaking! We need your tenacity and passion.


Anonymous said...

What got me is Emma's question. That is just not something that she should have to contemplate.

I have been there. We have been there. This sucks. I really thought the first year was absolutely the hardest. Not that something magical happened on his one year diaversary, but things started to ease a bit. Then the two year mark - a little more ease.

I've had those moments when I think I just cannot take one more moment of this Sh*T! Not. One. More. I don't have them quite so much anymore.

Hugs, hugs and more hugs my friend. I wish I had a pixie dust that could make it all go away.

Virtue said...

GAH! I hate the "my cousin's husband's sister's boyfriend's cousin has diabetes, therefore I know exactly what you're talking about and exactly what you need" comment.People need to check their comments before they come out of their mouths.

Can't make the BS go away, but hope hugs make it a bit more tolerable...


<3 V.

Shannon said...

OH I LOVED THIS POST!! IT has been a crappy week and this was perfect!!

Some day, I hope, little ones and their parents won't have to go through this. I'm new to your blog, but it looks like you're moving through this with incredible grace.

Just found your blog via Twitter -- and I'm so glad I did.

An amazing post, Laura-- you cut right to the devastating pain of that first year after diagnosis, while providing an honest, much-needed calling out of so much of the BS surrounding this disease.

Thank you.

- Sandra

I am sitting at my desk crying. Because it was like reading my thoughts.

My son is 7 years old type 1 for 2 years. Everything you said I can relate to. Friends, and family disappearing on you, NO insurance, exhaustion, constant worry.

The one that really spoke to me was people asking you when youre going to stop checking him at night. I have been getting that forever. I will NOT stop checking him during his sleep, because its our job to protect them, and keep them safe.

Sounds to me like youre doing a wonderful job, but we know being a D mom is not easy by any means. Being a mom is hard, this is gazillion times harder.

I know we dont know each other, but just know there are other parents out there going through it too, and we are always here for you to vent to.

Denise said...

Just came across you blog and you said everything I feel! I wish people could understand that our "healthy-looking" children are because we work are a$$ off keeping them that way. My brain feels like mush because of all the D-numbers floating around in there and the lack of sleep on top of that. Helps knowing that we aren't alone...we, and our kids, will make it through this (hopefully with a cure soon!!) Go ahead and cry then get back to kicking Ds butt.

alix said...

My day yesterday to a T.
Finally friends who abandoned us for so long are asking how they can help....
I spent hours last night wondering what that help would look like....
What do I need?

Cdejulius said...

My Sweet Girl . . .last night your post made me cry . . .today these beautiful comments made me cry . . .You handle everything with grace, even the stupid comments and questions from friends and strangers . . .The comment by Emma was so hard to read about . . .she is far too young to have these questions . . .but then Nate and Sophie are too young too to face what they face every day. Your Pop and I continue to be your strongest supporters, the loudest in the cheering section and the two who will always be right here helping in any way we can . . . You are my sunshine and yu don't even have to provide sunshine or rainbows . . .I love you just the way you are and when you hurt, my heart hurts with you . . .We will keep punching diabetes and someday there will be a cure!

Unknown said...

This whole Diabetes thing is BIG BS . . . I won't say bullshit, because Gran may read this! I love your Nate Houston and I love you immensely.

Meri said...

Amen sistah! Amen!

Truest, bestest post ever!


AjsMommy82 said...

Couldn't of said it better myself! It really helps me to know that I'm not the only one who still cries over this BS!!!

Unknown said...

OK, I apparently missed this one yesterday. I couldn't have said any of it better myself. I had the exact same feelings...especially when Joe was in his 3s, 4s...and into his 5s. And I still (like you said) cry once in awhile. It is a HARD life...It SUCKS...It is indescribable for those who don't live it.

You, my friend, are an amazing mother, woman, pancreas. Keep up the good work and know we are all in this together. While you are doing this in TX I am doing this in VT. I LOVE YOU!!!

Cindy said...

Laura, I've been diabetic myself for more than 20 years. I have never cried over having it myself. But we're coming up on the 1-year anniversary of my daughter being diagnosed with it (she's 3 now) and I cry for her. It does suck. It's BS that D-moms never get to sleep and that any sleep we do get is plagued with worry. But God wouldn't give us such wonderful, amazing, d-children if he didn't think we could handle it or if we didn't deserve the extra sweetness that comes with those children! Hang in there! The anniversaries are the hardest, I think. Once it's past, the emotional side should get a little better, I think!

Heidi =) said...

Great post my friend! You said so well everything that is welling up in my heart. Each day that passes makes my heart scream "This is total BS" even louder! I'm crying with you...

Much love and hugs to one awesome momma in TX from the NW corner of the country!

Wow, what an amazing post!!! Right on, Laura! T1D, and all that it entails, IS BS!

jpnairn said...

I've had it for 37 years, and I've still got what my friends and I call the "cryabetes." I can have a good laugh about it sometimes, but it's harder to see the humor when children are in danger and in pain.
God bless all of the D-parents out there, including my own.

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Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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