It gets better

Dear parent of a newly diagnosed baby,

Let me start off by welcoming you to one of the crappiest subsets of an already pretty crappy club. I'm guessing you stumbled here by googling something like "my baby has type 1 diabetes" or "babies with type 1 blogs". Those are some of the more popular search terms.

Can I just tell you that I know? I get it. I understand the emotional hell you are living in right now. The questions you have swirling around in your head; why my child? Did I cause this? How can I do this? Will my baby be okay?

I understand the pain of having to hold down your baby, who doesn't get it, to give them a shot. I know too well the worry of them not being able to tell you if they're low. The fear of putting them down for their nap and having no idea what their BG is.  And yes, I get how hard it is to check a BG of a child who is asleep in their crib.

It sucks. It's okay... yell it from the rooftops if you want to. Go on.  I know you want to.  Because I wanted to.  I wanted to scream the F-word as loud and as long as I could almost every day.

But, can I tell you something?  It gets better.  It does.

I know right now it consumes your thoughts.  Your brain is bogged down with carb ratios, correction factors, carbs, blood sugars, ketones.  Diabetes constantly is swirling in your thoughts.  Everything you do, you have to factor diabetes in.  Your diaper bag, once used for normal baby things now is weighing you down with all the tools of the diabetes trade in it.

But there will come a time that you will actually forget that your child has diabetes.  For a few moments anyway.

You will be able to watch other children freebase apple juice without a jealous rage welling up inside of you.

You will stop living and dying by every number.  You will learn to interpret the story those numbers are trying to tell you.

Leaving the house won't seem so overwhelming.  I remember being so scared that I was forgetting something vital, but pretty soon you can tell you have everything you need with a single glance. 

You will become you again.  Not the you that you were before your baby was diagnosed.  But a better you.  A stronger you.  A more compassionate you. 

And the flow of tears will ebb. You will notice the times between emotional breakdowns will grow longer, and the breakdowns themselves; shorter. There will always be sadness residing in your heart, but with the passage of time, it will take up less and less space. 

Don't get me wrong, diabetes is STILL hard, and almost 5 years later there are days when emotionally I am transported right back to the beginning. The difference is, I am better equipped to handle it.  I have learned to not live in the darkness, but embrace the light of all that is good in my daughter's life.

To answer your questions; I may not know why any of our babies were chosen to first crawl and later walk this path, but I know this: You did not cause this anymore than I caused my daughter to have type 1 by only nursing her and making her homemade baby food with organic ingredients.

You can do this. Check out the many people on my blog roll who are also doing this.

And yes... your baby will be okay. Mine is. Just look at her.

I may not know who she would have been if diabetes had never entered our lives. But I do know that she has grown to be the sweetest, wisest, most loving and caring little girl.  She is truly a mother's dream.

She is absolutely incredible.

So are you.  You can do this.

A Letter to Elise

Letter Writing Day - Tuesday

Dear Elise,

Tonight was a special night. Your first dance recital. You looked adorable. Your smile lit up the stage. And you danced... well, you danced like a 3 year old at her first dance recital.

It was tough, I'm not going to lie to you. Your BG was sky high before your tap number, but plummeted a mere 45 minutes later to 107, right before you were supposed to go on for the ballet portion. 10g and 15 minutes later, you were 84. Some smarties brought you up to 93, and I was literally checking your sugar as you and your friends were about to take the stage.

As I look back and reflect on tonight, I wonder what you'll remember. Will it be crashing blood sugars or tap shoes marching to the beat of "Animal Crackers"?

Will you think of your hovering Mom, checking your monitor every 2 minutes, or how at the end of one of your dances you came to the edge of the stage, and yelled, "Mom! Where are you?" Causing the audience to chuckle.

Will you look back fondly at the flowers you received, or the extra carbs you had to ingest?

I hope diabetes doesn't figure into these memories at all. I hope all you remember is shaking your feathered tu-tu up on stage and having fun. I hope you remember how proud we all were of you.

And I hope that you never let diabetes stop you from dancing.

You are amazing and I love you so very much.

Love always,
Your Mom

Dear Mattias

You are my second born. My son. I have loved you since the moment I found out about you. And yes, I love you just as much as I love your sister. Such a strange thing for a mother to have to say, but I feel there just might come a day when you don't believe it.

I want you to know that it breaks my heart when I hear you crying in your bassinet. And I'd love more than anything to come scoop you up; hold you close and stop those tears from flowing. But I can't. I'm busy at the moment checking a blood sugar, giving insulin and preparing food. So you must wait. And though it might seem like all my attention is focused on your sister at the moment, you are certainly on my mind and I am working as quickly as I can to get to you.

And I hate to hear you whimper when your tummy is empty and you are asking for food. But I cannot feed you at the moment. You see, your sister has low blood sugar and I have to tend to her needs first. And the testing, giving carbs and re-testing might take awhile, especially if I'm waiting until her blood sugar is in a safe range. If I am nursing you, I won't be able to help your sister. And right now, she needs me. I know that you need me too, and I feel so torn.

I am sorry that you get the leftovers of our attention. The leftovers of our energy. Diabetes is a very selfish sibling and demands so much of our time. But that is no excuse. I hope you feel that you can tell us when you are feeling ignored. Just know that the patience, perseverance, and empathy that you are learning right now will serve you well in life.

Know this above everything; you are a very special, and very loved little boy. I pray you grow up knowing and believing that. I am so blessed that you are my son.

Love,
Your Momma

Maybe if I ask nicely...

Dear Diabetes,

I wonder, do you have a pact with the universe to bring it at the most inopportune times? To kick us when we're down? Do you see us in difficult situations, call up the universe on his cell phone and tell him, "it's go time!"

Because that's what it seems like to me. Realistically, there's never really a good time to deal with you when you decide to rear your butt-ugly head. But really, some times are better than others.

Like, why do you decide to crash Elise's BG while I'm nursing and alone? Kinda hard to treat a low BG while you have a baby attached to your boob. And do you know what happens when you pull the baby off in the middle of you milk letting down? Milk shower for everyone... YAY!

Or take for example the other night... it's just me, all by my lonesome, and it's time for Elise's BG check, snack and shot. Mattias also needs to eat and is getting quite fussy. So I check her BG, make her snack, prepare her shot, then settle down to feed Mattias while she eats. For some reason, she decides to get upset about something, drop her yogurt all over the carpet and then start to scream. Which freaks out Mattias; he stops feeding and starts to cry. Then spits up all over me and the sofa. And then refuses to feed.

Meanwhile, I have no idea how much of her yogurt Elise has eaten, how much is now on my carpet, how how many carbs I need to replace. Seriously... do you find situations like these humourous?

Or how about this past Friday... date night. I use the term "date night" rather loosely since dragging 2 kids and three bags o' crap to dinner with you, is in no way a date. But it's okay, because someone else is doing the cooking.

So why, 30 minutes after dinner, is Elise's CGM telling us her BG is 48 with double arrows down? And why while we're driving? Do you know how hard it is to check a BG while in a moving car? Of course you do... that's why it happened this way. And why, after stuffing 20g of smarties and fruit snacks in her, does the CGM still read LOW with a slanting downwards arrow? And why won't Mattias stop SCREAMING?

Look, all I'm asking for is a bit of a break. I'm tired. I'm beaten down. I'm stressed and I'm sad and I'm struggling. I just need you to go sit in the corner and behave for a bit, okay? Please?

Thank you for your attention in this matter.

Sincerely,
Joanne

Shut up Eileen!

Dear Eileen,

I love you. I really, really do... but you are kind of pissing me off today. Both my babies are napping and all I want to do is sit on my nice cushy bum, and catch up on some blogs.

You know, while eating my bon-bons and watching my stories.

But for some hostile reason, you think it's okay to beep "LOW" every 10 - 15 minutes, making me get up, run upstairs and hit the "OK" button.

If Elise really WAS low, I'd be ever-so-thankful. But she's hovering right around 100; dipping below every other update or so, which in turn, sets you off. Showing me that she's 99 with a flat arrow really doesn't do much for me. Then, she hops over the 100 mark, only to dive back to 96 (again, with the flat arrow), causing you to grumble (vibrate) and shriek (beep) at me some more.

So Eileen... please to shut up. Unless you have some real news, just sit quietly on Elise's shelf like a good little CGM.

Love,

Elise's pseudo-pancreas

P.S. I guess I should offer my begrudging thanks for alerting me to Elise's nasty low during her nap yesterday. I suppose I can forgive this little transgression today.

P.P.S. You know I really do love you right? Sorry I'm such a cranky pants.

P.S. You suck

Dear Diabetes,

Could you please just leave us alone today? We're very tired after being up most of the night trying to do battle with the scary lows you kept causing for reasons we cannot figure out.

We thought that giving our daughter a grand total of 45 extra grams of carbs through the night would be enough, but we were wrong when you made her BG plummet to the 50s at 4:00 am, and then again at 8:00 am.

Not to mention that we've be fighting these stupid lows all day today, stuffing carbs into her as a glassy-eyed gambler stuffs coins into a slot machine. All the while watching her BG struggle to get over 100, just to take a nosedive about 15-30 minutes later.

You think you may be winning, but you fail to realize that our wicked diabetes-defying skills paired with our new secret weapon (aka the CGM), we are totally going to bitch-slap you back into submission.

This is not a threat, but a promise. You have been warned.

Sincerely,
Elise's Pancreas

Having my say

My letter to the editor was published, and I have the proof! How cool is that! Thanks to Shamae for sending me the hard copy. I really wanted to have it so I could show it to Elise one day.

If you missed the whole kerfuffle, here is the original letter to the editor that had all us D-Mommas up in arms:

Complaint

On Oct. 3, myself and my girlfriend were eating lunch at Burger King. A family came in and sat across the aisle from us. While the father was ordering food, we were shocked and appalled to see a boy inject himself with whatever medication, in front of God and everybody all while sitting at the table. We found this extremely offensive. That sort of business should be done in private. How about a little respect for those around you. Other than the obvious fact that it's not sanitary for those who use the table next, you have no idea how something like that can affect people. People go through a lot in their life and things like that may bring up certain feelings and memories best forgotten. I would like to thank those that day for totally ruining my meal.

And my response (4th draft with expletives and yo-mama jokes removed). It's the one entitled "Injection":

Here is the text in case you are unable to read it:

I do not live in your area, but read the letter from the man who was so disturbed by a child giving himself a shot at a restaurant (October 25 edition) with total dismay. My two year old daughter is a Type 1 Diabetic, and we often have to inject her with insulin when we eat out in public.

The fact that there are people out there who have nothing better to do than complain about something so minor is very disheartening. Does he not understand that the very thing that disgusts him, we have to do in order to keep our children alive?

This person is in desperate need of a lesson in compassion. Diabetes is already a horrible thing to have to live with, and according to the letter writer, we should make our kids feel further isolated and ashamed by giving them their medication in hiding. Where would he prefer we do it, in the bathroom? And he complains that giving a shot in public is unsanitary.

This letter really illustrates the lack of understanding people have about Type 1 Diabetes. I, for one, applaud this young man for bravely taking care of himself, whenever and wherever he is.

I'm glad I was able to toss my two cents in!

Wanna get mad?

Then read this letter I borrowed from Shamae's blog. It very wonderfully illustrates that stupidity is alive and well. It is a letter written to the editor of her local paper:

On Oct. 3, myself and my girlfriend were eating lunch at Burger King. A family came in and sat across the aisle from us. While the father was ordering food, we were shocked and appalled to see a boy inject himself with whatever medication, in front of God and everybody all while sitting at the table. We found this extremely offensive. That sort of business should be done in private. How about a little respect for those around you. Other than the obvious fact that it's not sanitary for those who use the table next, you have no idea how something like that can affect people. People go through a lot in their life and things like that may bring up certain feelings and memories best forgotten. I would like to thank those that day for totally ruining my meal.

I know... wow, right? Here's my letter to the editor that I sent to the paper in response.

I do not live in your area, but read the letter from the man who was so disturbed by a child giving himself a shot at a restaurant (October 25 edition) with total dismay. My two year old daughter is a Type 1 Diabetic, and we often have to inject her with insulin when we eat out in public. The fact that there are people out there who have nothing better to do than complain about something so minor is very disheartening. Does he not understand that the very thing that disgusts him, we have to do in order to keep our children alive?
This person is in desperate need of a lesson in compassion. Diabetes is already a horrible thing to have to live with, and according to the letter writer, we should make our kids feel further isolated and ashamed by giving them their medication in hiding. Where would he prefer we do it, in the bathroom? And he complains that giving a shot in public is unsanitary.
This letter really illustrates the lack of understanding people have about Type 1 Diabetes. I, for one, applaud this young man for bravely taking care of himself, whenever and wherever he is.

Whew, I feel better now that I've gotten that off my chest. I encourage you to also write a letter to the editor and express how you feel about such ignorance.

Two years ago, at this very moment...

Dear Elise,

I am going to start out this letter with the very cliche, "wasn't I just giving birth to you yesterday?" Yes, yes, I know it has been said a thousand times over, but there is no better description for how time has just rocketed by in the last two years.

And what a crazy two years it has been; full of so many ups and downs that I'm feeling nauseous. But I think I can chalk that up to the vast quantity of chocolate I have just ingested. But enough, this post is supposed to be about YOU.

Sweet Elise Rian, I don't think I have the adequate vocabulary to describe the amount of love I have for you. Nor can I put into words how you amaze and astound me everyday. All that you have been through in your life and you still face every day with a smile.

God knew exactly what He was doing when He entrusted me with your life. I say that not because I think I'm doing such a bang-up job as your mother, but because I have learned so many lessons from you.

I have learned that yes, life can suck, but then you keep on living it as best as you can. Every day is a new day, full of promise. I shouldn't fear what the future brings, I should look forward to it with eager anticipation.

I've learned the art of patience. Having a toddler with no concept of time, and a mind of her own will do that to you. I've also found out the old adage, "if you can't beat 'em, join 'em" can be fun, especially when it entails hiding in the clothes racks at Target.

You taught me that music is to be enjoyed while spinning and jumping around and dancing with stuffed animals. And songs should be sung at the top of our lungs while driving in the car; complete with wild hand gestures. Who cares if the people in the next car are staring. They're just jealous that they're not having as much fun as we are.

I've learned to stop and enjoy the world around me. That you can sit and check out that strange-looking bug on the driveway for 20 minutes, because there is always another story time happening somewhere.

I always knew that I married a wonderful man, but I now know that I married an amazing father too. Seriously Elise, you are so blessed to have Poppa as your Poppa. One day, you'll get it. Judging by your reaction when he comes home from work, I think that you're already starting to.

You have taught me that I am a lot tougher than I thought I was. You have given me a lot of confidence in areas I never thought I'd be any good at. I'm still a work in progress, but I think we make a phenominal team.

I've learned that painting is always better when done naked (well naked plus a diaper). This rule only applies to you, not me.

I'm so proud of you, little girl, and so glad to call you my daughter. Happy Birthday.

Love,

Your Momma