Monday, November 3, 2008

So You Think You Can Dance?

Warning: this is a tad long. I write it mostly because I've been hearing from a lot of people that they think diabetes is just giving Elise a shot once in awhile. I'm not writing it for myself, but so others will know what parents of kids with diabetes go through on a daily basis.

Being a mother of an infant/baby/toddler is exhausting. Being a mother of a toddler with diabetes is exhausting. Times ten. Million. Aside from all the injections, carb counting, blood sugar and ketone testing I do; my mind is constantly spinning from all the thinking and planning that taking care of Elise entails. Each step of my day is a carefully choreographed dance. I have memorized most of the moves through repetition, but sometimes I have to improvise depending on the situation. Click here to see Fred's flow chart - it's almost like a "Choose your Own Adventure Book"!

For example, my morning routine looks something like this: Get her up, change her diaper, save said diaper in case I need to test for ketones. Don't forget to put cotton balls in the diaper in case I have to test for ketones later! Test her blood sugar. It's low - get some juice in her asap. It's high - test for ketones and perhaps call the doctor. It's normal - breathe a prayer of relief. After all that business is taken care of, it's time to nurse her. It's one of the few times I get to sit down, relax and turn my brain off. A lot of people think I'm weird because I'm still nursing her. Are you kidding me? It's the only "me time" I get during the day.

Nursing is done, time to start preparing her meal so I can give her insulin. She needs to eat about 5-10 minutes after her injection, so I need to have breakfast all ready to go before I can give her the shot. Her meal must consist of at least 15 grams of carbs; so I have a scale to weigh the food, a scrap piece of paper and a calculator to figure it all out. Gone are the days of just putting some food on a plate. While I'm preparing the meal, my monologue is punctuated with, "Elise, stop that. Elise, hands off. Elise get off of there, put that back, come here, take that out of your mouth, don't open that..." Well, you get the idea. After her meal is all ready to go, I prep the insulin, give her the shot, put her in her high chair and it's time to eat.

After I'm done feeding her, it's usually about 10:00, and I'm feeling woozy because I haven't eaten yet. Sometimes I'm not done with breakfast and clean-up until 11:00, and then it's almost time for lunch. Sigh, the dance begins again.

Diabetes is a disease that keeps you on your toes. Throughout the day I'm constantly wondering, "Is she high? Is she low? Should I feed her a snack? What if she goes low during her nap? What will I give her for lunch? How many carbs are in 40 cheerios anyway?" In case you care, it's about 4 grams.

If you think leaving the house with a baby is hard, add diabetes to the mix. In addition to the diaper bag I also have to make sure I have a whole other bag o' goodies; apple juice in case she goes low, the emergency kit in case she passes out, the BG testing kit, sippy cup with water, extra supplies for the testing kit. If we're going to be out during a meal time I need to pack the insulin with ice in a cooler bag, bring needles, alcohol pads, her carefully planned out meal, and some "free foods" (foods with no carbs that she can eat in case she finishes her meal and is still hungry). It's a lot of crap to haul around and it's no wonder my back hurts!

I keep a watchful eye out for things that could harm her. A mother at story-time offering her a snack without checking with me. Elise picking up another child's sippy cup with juice in it and trying to drink from it. My heart breaks when I am eating a snack and Elise holds her hands out for some. These days I try not to eat in front of her (or only eat when she does).

We keep a daily log of all her BG tests (usually 7+ per day), her carb intake (3 meals + snacks), and her insulin (3 shots per day, sometimes 4). We email them weekly to the endocrinologist so they can make changes. If there are changes to her bedtime insulin, we have to test her at 2 a.m. to make sure she doesn't go too low. If she is low, we have to wake her up and give her some juice to get her BG back up, and re-test in an hour. There's something darkly comical about forcing a sippy cup on your child as she sits bleary-eyed in her crib at 2:30 in the morning. Luckily, my wonderful husband takes care of most of those incidents, although I do get up for the force-feeding fun. Thanks for the extra sleep time, Freddie!

We do get off a bit easy... If Elise is high during the night, we don't give her insulin to correct her. Parents of older kids have to do this, and then check in one and two hours to make sure the child doesn't go low. If they over-correct, they have to wake their child up and give them fast-acting carbs. It really is like walking a tight-rope.

I've left out a lot of stuff, mostly because this is getting obscenely long. My point is this; the dance of diabetes is a difficult, tiring one; full of dips and twirls that will make you dizzy if you let them. A lot of the time the steps are tricky, and cause you to fall. And it would be so easy to just lay on the ground and cry from the hurt of it all. But in the end, you always get up. Because your child's life depends on it.

Not only do I have to dance the dance everyday, one day I will need to teach Elise the steps as well. If you know a mother (or father!) of a child with diabetes, let them know that they are an amazing dancer; more graceful and dedicated than any of those people on that stupid show I stole the title from.

7 comments:

fred said...

What is scary is that your post doesn't even do justice... :^(

Joanne said...

I tried, but it was going to be a novel by the time I was done!

Amber S. said...

I gotta agree with Fred - you could have really let lose. As a (former) Pediatric nurse, I have worked the diabetes dance for a 12 hour shift... and then gotten to go home! Plus it was not ever *my baby*... plus I was getting paid... plus the child was in the hospital...

But anyway, I couldn't imagine factoring those points in - trying to live a normal life WHILE doing that awkward dance.

My hat truly goes off to both of you for doing such an awesome job. I hope you know that!

Blessings to all four of you (gotta count in poor ol' Seven!),

-Amber

HeyJade said...

OHMYGOSH I NEED A NAP JUST FROM READING THAT! I don't know how you guys do it, I pray you have the strength to just get up in the morning and start all over each day! Love you guys!

Kim said...

Thanks for sharing, Joanne. It helps us know how to pray for you that much more. You are completely right. So few are even familiar with this process. The only diabetes I know is the older people kind.

It breaks my heart to think that Elise will deal with this for the rest of her life, and that you have to deal with this now. Whenever Josiah is sick, I feel so helpless.

I will pray that the Lord who never leaves our side, will show you His presence every day as you do this dance which will eventually become mundane routine. And that as Elise grows, you will be able to share with her the little daily miracles and how you learned to dance by God's grace...just for her. :-)

Love you, friend.

~Kim

Bev said...

I think it's awesome you are still nursing. I nursed Josh until he was 13 months old and Gabby till she was 11 months old.
It is a great time for mother and baby.
You always were and still are a rock star. So glad god chose you and Fred to send Elise to. Someone else might not have cared enough.
Much love from 'sippi!

Leah J. said...

Joanne-
I found your blog randomly through Facebook then through Fred's website. First of all, way to go for still nursing! I'd probably be doing the same thing if Casen hadn't weened himself ... that was a sad day! Secondly, my heart aches for you. I'm sure you are beyond exhausted at the end of each day! We are dealing with therapy with C ... he has low muscle tone and is not yet crawling, standing, etc. It's tough to watch him cry through therapy and to have to work with him - as he is crying each day. I realize this is different - not to compare, but there is nothing like the pain a mom feels when something isn't "perfect" with her little one. I just wanted you to know that I am thinking of and praying for you all as you go through this daily "struggle". YOU are the perfect mommy for Elise. The Lord knew that when he sent her your way. I blog too, but it's set on private. Email me your email address at leah@nine17.com if you would like an invite!
Leah