Two and a half years ago I was the smug Mum of a child that slept really well. I distinctly recall chatting to a friend around the time of this photo and she was telling me how often her two year old woke up in the night.I suggested a sippy cup of water as that seemed to help Frank sleep through. I felt happy my child drank water and thought he was just like me as I always have a glass of water by my bed.
One sippy cup became three all lined up in his bed and he needed them topping up at 1am, 4am and then woke for water early in the morning.
His nappies were flooded.
His cute sleeping bags soaking wet.
In Dorset, visiting my sister, in the May before diagnosis in the October, one of the requirements of the holiday cottage was a washer dryer as we always had so many PJs and so much bedding to wash.
Hindsight is a wonderful thing, eh?
It's all so clear, all the signs when I look at it now.
But with no history of diabetes in the family and no real idea that it was even a possibility for tiny children, we staggered on washing and drying more than any family I know.
Scroll forward to now, or rather last night to be specific.
Frank is in our room on a camp bed and we are all happy with this.
He came in at Christmas and is staying there for a while.
Last night his BG was good before midnight. But the habit of drinking water in the night is now, it seems, so ingrained in him that he needs it all the time. Last night saw me changing his nappy four times and his PJs as many too. His sheets were wet and I put him on a towel as I had no energy to strip the bed too.
I hate this aspect of the D for us. I can't bring myself to deny him water.
It's water.
He seems to really need it.
He now has a safe sippy as I got concerned about him having drinks from plastic for so many hours of each day. He has a Klean Kanteen for daytime and he drinks a lot. Even when the numbers are good he likes to drink water.
But I am tired.
I am so gentle with him. Always. I will never complain to him about needing water or peeing a lot or having to change his bedding three times a night and his PJs four times and his nappy five times.
I can't imagine the time when he is dry at night and as he gets bigger and his bladder capacity even greater I may have to fashion some kind of super nappy by sewing loads of them together.
I fear we are alone with this one.
It is just what Frank is like and we have to deal with it day in day out and night in night out.
I see no end to these nights of BG testing, nappy changing, PJ changing and washing and drying each day.
I have no conversation left. Jen's post the other day about going to a New Year's party and not blurting out that Addison has diabetes as a conversational opener for the first time has really struck a chord with me.
I admit I cried when I read it.
I want this day to come.
I am not there yet.
I am lost in the eye of the storm of this disease.
I have nowhere else to be and nowhere I'd rather be. But there are long days and longer nights when I realise I have lost all sense of myself.
I am avoiding socialising sometimes because all I can think about is diabetes.
If I stay home with my boy and we dig the garden and go to the library and bake biscuits then I can almost forget the D because it is so automatic and we are not weird to each other!
So we bake and cycle and walk and dig and I knit and we paint and we watch Toy Story for the billionth time and I blog about knitting and sewing because it's all I do that isn't D.
And what sustains me is seeing my boy grow and develop.
What sustains me is reading other D-parents' blogs and knowing their hearts like I know my own.
And boy, that feels good...
Wow. We're dealing with some very difficult nights here, ourselves (not that kind of difficult)--I'm functioning on about 3 hours of sleep and my poor baby is wailing much of the night. So I can sympathize, a bit, with the being-up and constant night parenting. But all the changes and the laundry and no end in sight, on top of your constant worry! I am so sorry.
ReplyDeleteI really have no idea what it's like, so forgive me if my suggestion sounds trite, but if you're up in the night that often anyway, could you put him on the potty each time in the hope of catching some of it? Lucy was wetting through onto our bed, so for a while I put her on the potty at one of her wake-to-nurse times and it helped.
Hugs and sympathy, Lise
Wonderful post my dear friend. I feel some of the same things and I understand. It's so hard - it's like someone put our lives into a snowglobe and shook it up. Then they pick it up every now and then and shake it some more. You are an amazing mom to Frank and he is a lucky, lucky boy.
ReplyDeleteI heart you BIG TIME! On the "nappy" thing...know you are NOT alone. We are still having these same issues with JOe and he is seven. I lay him on a chux at night...we take him to the bathroom at midnight and some mornings he is dry and others he is not. He sleeps like the dead and if he is in the low 200s or higher...he is thirsty. It is hard. I hear you. Every word of this post struck a chord with me dear friend.
ReplyDeleteYou are not alone. You are in the eye of the storm. We have all been there. Some days I get swept back in...but you are never alone.
ReplyDeleteLast October L still wasn't dry through the night. I would have to wash his bed at least three times a week, and that was with a nighttime diaper. Then he turned seven in November and said, "I'm seven now, no more diapers for me!" And MIRACLE! He hasn't had but a couple accidents! I NEVER thought it would happen.
The hard times don't last forever...that is what I've learned from all of this so far. ((HUGS))
Glad you shared this subject. I just asked the endo a few months ago if by letting Ellie still wear a pull up at night (of which she basically fills every night) was a bad idea. That I didn't feel she could make it all night when she was high and denying a diabetic child with any increase in BG numbers seemed cruel. He told me not to even think about it. That she will start school and the socialization and peer pressure will get her thinking about it and she will in good time change the pattern. So I just put the big giant pull up on her at night and am thankful that it's there to keep ME DRY at night! HAhahaha! But I will say that I do limit her to 2 cups of liquid before bed and then make her go to the bathroom for sure before she falls asleep...but she still fills that pull up to the brim every night! ((hugs))
ReplyDeleteJules - (((HUGS))) Addison is still in diapers at night and sometimes they are dry in the am but most of the time not. In fact..he has decided that using the toilet isn't fun anymore and has reverted back to diapers during the day..but that is another story..I try an believe that it will all sort itself out..maybe later than some other kids..but it will sort itself out eventually (definitely before college friend :) ) You are not alone!
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