Sometimes I have this tightness in my chest, this insane urge to scream but I fear that if I do I will bring the whole house down around us and the world will stop and say, "How did she ever keep that all in?"
Frustration and anger and the overwhelming sense of unfairness. The crying and the peeing and the thirst. The constant wakings. Even the few week or months of peace we get when the medicine does the job right seems like a big joke, like someone laughing in our face because we have become complacent. Every time seems to get harder and harder to witness and try to control. And it seems that no one - no one - can ever understand.
Today we went to Pullen park and Lily was not much herself. I'm not sure if it was the overwhelming vastness of the park itself, the bright sunshine or the people that showed up - first as a trickle and then as a flood. It could've been the lingering cold and ear infection. It most definitely was in part because of the high sodium, constant thirst, and the start of a warm day.
This was supposed to be a fantastic, beautiful trip for her. Instead she stood in the middle of the sidewalk with pee flowing down her leg, into her shoe, forming a puddle on the concrete.
She had been in a cloth diaper, one of the heavier ones for this outing.
She had been in it for less than two hours.
This was 3 hours after her morning dose of ddavp.
I changed her right there with her visual therapist fluttering about asking what she could do to help and all I could mutter was, "please don't be alarmed if I cry right here and now."
I'm glad because though I did tear up at the absurdity and heartbreak of the situation I did not let it ruin our very long day. Even knowing it would come up later at her sodium check today, we trucked on, tucked it away for crying about tonight and went about our day. And it got better. (The day, not the pee/water/sodium situation...)
But night time is so friggin hard. It doesn't seem to matter when we gave the last dose of ddavp. There's no breakthrough peeing. There's no time when she's not asking for "more water" There doesn't seem to be a break in it all anymore.
It's late. And I might be being dramatic or sensitive as my husband claims I am but it just seems so tiring and sad. That word doesn't seem strong enough but it is what it is. Sad.
We've put her down tonight around 7:30. It's 10pm now and she's already been up three times. She's already peed out of a nighttime cloth diaper (hemp, bamboo, microfiber layers.) She's already had 3 cups of water (27oz.) She is due for a dose at 11, with another 2 more cups of water to satisfy her screaming cries of thirst.
Isn't sad the right word here?
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I am so sorry. I can't realte 100%, but on a level of the lack of sleep, Mason doesn't crave water, but he always wakes up in pee. We do regular diapers, but there is not one that seems to last the whole night. On top of everything we have to deal with with our little ones, sometimes I feel like the worst part is that you can't see an end, and everything feels like forever. Other moms you talk to say things like it will get better, things will get easier one day, I remember my baby waking all through the night, and welcome to motherhood, and I don't know if you feel the same way, but I just want to scream at them, because nobody quite understands just exactly what our days and nights are like, and we don't deal with typical situations, we deal with raising babies and complicated situations, and nobody quite understands how annoying their empty words of encouragement are. You said that those weeks or months that everything is going well for LB seem like a joke, I think they're not a joke, I could imagine with out those you might have lost your mind already. I really hope one day things will get better and things will get easier, but right now these things just plain suck. I'm sorry, really sorry. I think you are a beautiful and amazing mommy and LB is so lucky she chose you to be there through these long endless days and nights. Hang on tight, this is a wild ride
ReplyDeleteI'm sorry. Our stories aren't the same but I totally get the "it's unfair" aspect. Our challenges are different with our special needs kids but I totally get it. I get the wanting to cry and scream...
ReplyDeleteSending you huge ((hugs))
This made me so sad. I wish I had some encouraging words, but I do know how sleeplessness feels and how emotional I get when I'm not well rested. I hope your weekend went well.
ReplyDeleteI think you're a great mom and handle the challenges way better then most could. I know that doesn't make it any easier for you frustration-wise, but I hope you can take comfort in knowing that LB is a lucky girl to have you as her mommy :)