Hmmm.... That's a tough one! These prompts are really stumping me!
I feel like there is room for improvement in all areas of our diabetes routine. I'd like to get better at tweaking. I'd like to say that my SWAGing is spot on at all times. I wish I could say that I had a handle on the trends and the reasons behind them. I'd like to say that I have exercise figured out. How much to give to treat various lows.
But I can't say that. I don't have it down pat. I don't. Everything changes so quickly for her. I tweak and it works for a day or so and then it changes. What works for lows for a few weeks stops working. Sometimes my SWAGing sucks.
But do you know what I'm REALLY good at?
I'm really good at pretending it doesn't bother me. I'm really good at making it all look easy.
Most people that I know and work with have no idea what my life is like.
I mean, if they read the blog or if they listened when I get on my soapbox every year during fundraising... But even if they DO listen - they don't get it. They don't know. They don't see it.
I come into work each morning dressed (usually) professionally. Sweets is with me and she is all matchy matchy and complete with coordinating hair bows - half of which I make myself. No one can tell that I've been up all night chasing lows or treating highs. They can't tell that I was counting carbs in the car and bolusing while driving.
They see a happy little girl. A healthy little girl. A little girl full of laughter and smiles.
They don't see the tears she cries when it's time to change her Dex sensor. They see me having to hold her down when she needs an arm draw for blood work. They don't see the spots on her fingertips or the bruises all over her body from needles.
They don't see the angry little girl that I see when her blood sugar is too high. They don't see the blank stare I get when she's low. The look that tells me that she's not really there.
They see a little athlete. They see a swimmer and a gymnast and tennis player.
I see a little one who might be going low but because she does not want to wear her Dexcom and answer questions about what it is... and because she can't feel her lows... They don't see that I'm not just casually observing. They don't see that I'm watching every move. Looking for her to off balance. To fall. To need me.
They see a child eating what everyone else is eating.
They don't see me counting carbs in my head. They don't see my factoring in her activity level, future activity level, past activity level, illness, stress, and excitement. They don't see me counting out individual goldfish crackers. Or grapes. Or m&m's.
They might see her pod or her Dexcom. They don't see the needles. They don't see the supply cabinet that is taller than I am. They don't see the blood. They don't see the gushers and ruined towels or clothing from sites that won't stop bleeding. They don't see the little blood drops from sloppy night time checks. They don't see the bill and just how much it all costs to keep your child alive.
They see what looks like an ordinary family.
They don't see everything that goes through the head of a D parent. All the factors to consider... the current basal rates, carb ratio, the way certain food affects the child or how combinations affect blood sugar, activity level, excitement, hormones, illness, stress, weather, when we need to order supplies, if we have enough supplies to make to the end of the month, what the trending arrows show, what happened in this situation yesterday or last week, what this number is doing to his or her body, how many carbs are needed to treat a low and what kind works best for that particular situation, is the glucagon good or has it expired, what will I do if he or she doesn't come up - or come down, are there ketones, how much, is the site good, is the cannula kinked.... I could go on!
No one sees that.
And I think I do a good job acting "normal". I think I do a good job handling it so that no one really knows what it's like.
And I think I do a good job pretending like it doesn't bother me.
I appear calm. Cool. Collected.
Apple juice and cake? Pizza and ice cream? Sure, no problem...
Handfuls of treats being eaten by other kids? Easy peasy...
Invitations to sleepovers... Great!
Watching friends go on date nights or weekends away? Oh! Good for you!
Your kid is hungry and just eats? How nice....
You get to sleep through the night? Lucky you!
Oh, your kid woke you up because of the storm?? Gee, that's too bad.
Your little one has a cold? Is throwing up? How terrible.
See? I got it down.
What they don't see is that in the back of my head, I'm sitting here writing this post!!! And that I really want to scream that
At least a stomach bug doesn't land you in the ER!
At least you don't wake up every single night to check blood sugar!
Do you know how nice it would be to count every single carb she eats??
Or how I wish I could just get a sitter? Or let her spend the night with a friend?
Do you have any idea what that food is going to do to her blood sugar???
This is where I let it out. This is where I vent.
The rest of the world doesn't know.
Because I put on the mask and say it's ok.
Because maybe if I say it enough times I'll start believing it myself.
Because I owe it to my daughter to give her the best, more unrestricted, most normal life possible.
And I'll do whatever it takes to achieve that for her.
I am reading your post and thinking "It really does take someone else doing it, to get it"! I get it. I hate that my little guy can't do what everyone else does without Shannon or I planning out every step of it. I am amazed at how I do because I was horrible at math. Now I can count carbs on the side while using complex equations related to dividing physical activity by carb intake! I get it, and your post was awesome!
ReplyDeleteGreat post- same/same! My sister just the other day said "How do you do that?" when I told my daughter how many carbs to put in her pump. People don't see all the work "behind the scenes" that d mamas do.
DeleteIt sucks...
ReplyDeleteWhere you really shine, to me, at least, is in putting it in to words where I can't sometimes. You are so good at being honest about it, but in an up kind of way. I love that when I am frustrated and ready to cry or pull my hair out, I can read your words and nod along, because you get it.
ReplyDeleteYou rock! BUT...did you mean that you "usually show up to work - dressed"?? or that you "usually are dressed - professionally"? ;)~
ReplyDeleteFake it till you make it baby! My lifetime motto! Love ya!
ReplyDeleteyes, just yes. i think both parents of CWD and PWD master this skill. we have to, in order to survive. to function in the world.
ReplyDeleteit's important to deal with the emotional baggage of diabetes. but sometimes, acting like it's no big deal is the only way to cope.
Maybe one day..... I just hope your little one will have better options ten years from now, when she starts to take over D management on her own. I think there will be one or two breakthroughs by then. Until then you are doing a great job filling in as her pancreas. I can see you are exhausted. Know that you are not alone; try to schedule time for naps during the afternoon or evenings. Guard your strength and make up sleep as much as you possibly can.
ReplyDeleteYou excel in being an awesome superhero mom, Hallie!! Sweets is so lucky to have you both. Yes, it's a weird balance in this D-world of ours... where people don't see it and get it and our acting "normal." Sometimes, it's not easy. But you're right in that it paint the picture of normalcy for Sweet and let her know that she can do anything that anyone else can, within the limits of her health (just like anyone, really). You rule, and are certainly doing awesome-ly! Keep it up! Pump bump to Sweets, too!
ReplyDeleteI agree, you shine putting this life into words! I always feel like you are writing these posts from my own brain that fails to find the words! You are awesome Hallie! ((HUGS))
ReplyDeleteAmen. My wife and I were just discussing how no one else, even aunts and uncles, understand what our child goes through or what we do all day, every day to allow him to be healthy, safe, and live as normal a life as any other kid. Thank god for the pump and counting carbs. When I was a kid with diabetes, everything was an even bigger balancing act than now. I took a shot in the morning and had to eat enough to not let my sugar go low and not too much that my levels went up. Thank God I had a type A mother that too care of me and so that I could grow up to become an adult with his own family. I think I hate watching my son go through it more than he does because I know what he is dealing with. Thank you for sharing your thoughts and reminding us that we are not alone. Thank you for being the mother that you are and allowing your child to be a child and grow up happy and healthy.
ReplyDeleteI introduced my sister to you & your site. As I read your posts, I hear here talking to me saying the EXACT SAME THINGS. It's truely amazing the things you D moms go thru for your children. This post was perfect. I am only the aunt, but I have experienced almost everything you just named. GOD Bless you for sharing all of this with everyone...you have NO CLUE how much your words impact my family - not saying there is anyting positive about DM, but it is a little helpful knowing others are dealing with the exact same situation at times...and you are not alone. Your words have gotten us through a lot and look forward to growing with you.
ReplyDeleteYou do amaze me as to how your family manages this disease with grace. Experiencing this does make you realize how precious life is and how we can take so much for granted. I pray for Hallie and I hope that in her lifetime that there are great advances to help manage this disease easier and better. Hugs to all of you :)
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