Sunday, January 23, 2011

Switching Focus-from CWD to PWD

Ive been thinking about this alot lately. As a D mom I speak of my experience and life raising a Type 1 child. No sleep, the crying, the lows, the highs, the 5am site changes, the uncooperative combos, the emotional stress it puts on J and I, well all of us. But one day is he going to grow up and unless a cure is found he will be an adult with type 1. He will be a Person With Diabetes not a child.

What does that mean? Well think about it. When When Justice goes low he feels awful. Like his body has been tormented and theres no end in sight. But I am here. His father is here. We run for the juice or tabs we rub his back when the nausea kicks in. What about an adult? What about the college student whos away from home and on her own? Or the single father who has to care for his kids all while his bg is steady dropping? Or the school teacher who cant grab her juice fast enough because a student is not behaving? Can you imagine? Trying to deal with the deabiliting low and manage it on your own? Shit. I can.

When Justice goes high its roid rage. Hes honestly mean, irritable and not well. He doesnt get the physical symptoms as much as the emotional . It breaks my heart. Actually 2 weeks ago at Disney on Ice he hit 380 and was out of it. Yelling, crying, balling up his fists in anger. He said "I feel like someone died and I cant stop crying". It was one of the worst days of my life. Imagine the mother whos bg is 400 while her kids are bickering and her husband isnt home. The man at work whos boss constantly tortures him but today his bgs wont come below 250, the young boy who just turned 18 and has football practice, but just wants to sleep. Coach doesnt get it. Kids dont get it. Boss doesnt get it.

I think one thing we as D rents fear the most is Death in Bed syndrome. I know I do. Thats why Dex or not I check J atleast 3 times I night. How do adults do this? How do they check at nght and manage that late night high or low? If J was high all night he will wake up slightly tired because of what his bosy has gone through but not because of lack of sleep. They must do it all. There is no one sitting up with an arm clock and meter ready to check them, or hellp them drink juice for that 2am 60, or draw up the syringe and do a site change because ketones are present. They do it themselves.

When illness comes into play with anyone it sucks! But with D we must be extra careful and stay on our A game. I check bgs, I hold Js head so he can sip soda to get his bg up, I check ketones, I draw up glucagon, I clean up his vomit and tend to all his illness and diabetes needs. A PWD must do this on their own. They cant slack because they feel like horse shit. They must keep on. Annd they do. With grace and poise. I never heard them complain or say how hard it is.

Its a very different dynamic to be sick or deal with a chronic disease of your own and watch your child suffer. A different kind of pain and frustration. And just because we may not talk about the other side of it doesnt mean it doesnt exist.

So to all my PWDs if I lived close to you, and you were having one of these days, Id gladly check your bg, grab you some juice or rub your back.

And one day when Justice is out of the house and I cant be there at that exact moment I pray someone will do the same.

*I did tell J that at any age when life or D gets hard i will always be there just like i am now. *


Michael Hoskins said...

Sometimes, it does suck. But it's a part of life and we do what we must. We set the alarm and get up. We know the signs, as we've been through them many times before. Our spouses, close college friends, become our Type 3 supporters. But it's our parents' support and teaching and guidance when we were CWD that build us into who we are. So, thank you for what you do for Justice. Know that he'll be a strong and capable Adult PWD because of it.

Joanne said...

Awesome post... I often think about Elise and how she'll be able to take care of herself. But like Michael said, it's up to the parents to equip our kiddos with the skills to do it. A great reminder of why we do what we do.

Denise said...

any PWD can correct me on this but from what I understand, it is much easier to manage D when those dang growth hormones aren't causing these bg roller coasters. Numbers will be more stable, they won't be so sensitive to changes, in insulin, carbs, activities, etc. Plus they will be more in tune with their bodies. Now with all that said, I still worry for the day that I am not there to keep an eye on my son and take care of his D. Hoping for a cure!! ;-)

Jess said...

You are a super-D-mom! J is so blessed to have you! Like Mike said, it does suck, but there are other T3's around to help us out. Trying to manage bgs is always a roller coaster, but J will do what he needs to do, and have a community of people who will love and support him, no matter how big he gets.

Renata said... will get better. He will be able to tell he is on his way up eventually and maybe can "prepare" better. Whatever that means. It does even out. Kelsey has really evened out over the last two years. She still has swings, but not as bad during hormonal times and she is able to handle the mood a bit better. I hope that helps some.

Alexis of Justices Misbehaving Pancreas said...

I wanted to say when writing this it wasnt from the viewpoint of worry for Justice, although ofcourse I do. It was more shedding light on the subject of PWD deal with we do as D rents but all while feeling the effects of the bgs at the same time. That aint easy.

Wendy said...

I feel your heart on this one, my friend.

Sometimes I read a blog post written about (or during) a low and I just want to jump inside my computer to find them and help. I can't help it...I guess it's the "mother" in me?

I do worry about what it will be like when I have to ease back on these reigns. But...I'm also incredibly grateful to all the PWD's who are willing to open the windows and let us peek inside their worlds. I feel more prepared and empowered because I have made these connections.

PS -- Love the new button! Got it :)

Reyna said...

What I love about this post is that it brings to light how amazing the PWD is at balancing so many tasks of daily living with "d" in it. They are super heros like our children for sure.

I worry a bit too for Joe and our kids Lex. The thing that provides me with comfort is that I know we are all doing the best we can to teach them, to guide them, to support them so that they can grow up to be the PWDs that we are in awe of. more thing...I think the effects of BGs on their behaviors is over looked and under spoken about and I appreciate you writing about it. I sometimes feel a bit alone in that department.


Lorraine of "This is Caleb..." said...

Where's the "like" button for Michael's comment?

Amy said...

I didn't WANT to read this post but I made myself. I just can't think about anything beyond today because it just hurts my heart too much to think Ellie will comeday carry this burden on her own two shoulders.

After reading this, however, I realize other loving T3's will step in and give Ellie balance and rest and support.

Thank, Michael, for yuor perspective on this!@!!

Donna ((Sweet Momma)) said...

FANTASTIC post, Lexi!!!!

FatCatAnna \\^^// said...

I think you are a GREAT Mum Lexi! Even tho' I'm no longer a CWD - but a PWD - I know that if you ever were with me - and you saw that face / look / whatever we PWD's get - that you'd be right there - testing my BG - getting me all juiced up - I know you'd be my Mummy (tho' in reality - I should be your Mummy - since I've got a few years on you - but heck - blowing a big bubble with my bubble gum - who is counting!!!).

Shannon said...

All good questions to ask as we raise our children. My son took over his own care about 1 year after diagnoses, at age 14. Recently, my educator told me about a college student who was found dead in his dormroom. It made me do a lot of thinking.
I don't know.....parenting is hard. Letting go of ALL my children is hard. Raising them to make good decisions and stay safe takes a lot of courage. Diabetes obviously complicates the matter. It takes faith. I have to prepare them as best as I can and then place them in God's hands. Any one of them may die in any number of ways. If I just look the beast in the eye and tell him..."Death, Where is thy sting?" , it helps.

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