All the Small Things...

The hubby and I were putting The Toots to bed tonight (her own) and it made me think of how much of this ritual grates on me. Him too, for that matter. It consists of many small but very necessary steps that involve dosing out and mixing all of her meds (4), getting her formula prepared, diaper change and PJ's put on. Then hooking her up to heart/oxygen alarm and feeding pump. Every single night we do this. And every morning only in reverse.

It sounds simple enough. And it is. The only problem is that it is relentless. It not something that can be skipped or even done halfway. It must be done and done right. The Toots life literally depends on it. If we give her too much of her seizure medications we could stop her breathing. Too little and it could throw her into a life threatening seizure. Like the story of Goldilocks and the Three Bears, it has to be 'just right'. The mental stress of knowing that YOU are very literally in control of your child's health can be exhausting. Too bad because simply being 'too tired' is not an option.

Invariably, one of us will magically find something urgent that needs to be done in the kitchen, bedroom, laundry room or anywhere that might get us out of mixing the meds and drawing them up in a syringe or changing a diaper or getting the feeding pump ready. We hope if we stall long enough the task will be done when we come back in the room to 'help'.

Meanwhile, the person left to deal with everything alone will act all 'holier than thou' that they stuck around to save their little girl while the other one bailed. The person who bailed will come in and be oh so 'what can I do?' while knowing full well it has all been done. In fact, a guilty but very self satisfied smile can usually be seen upon their lips if you look closely enough.

Even reading this as I am writing it sounds so stupid to me. What is the big deal? And I really don't know, but I do get so sick of it.

I think part of it is the length of time we have been doing it. We have been changing diapers on the same child for seven straight years. Same with making her formula, getting her dressed. All the things that you just take for granted will end at a certain age.

And there is no end in sight. No finish line. No "Yeah, we are finally out of the diaper stage!". No "look how well she dressed herself!" No, "oh, I miss feeding my baby." It is all on us. Twenty-four hours a day, seven days a week. Forever.

Then of course there is the guilt for daring to have these feelings at all, not to mention actually admitting them out loud. I mean really, who has it tough here? Me and my hubby, who can walk and talk and not need to rely on somebody else for our every need? No. Which is why we keep doing all the small things that are so vital to The Toots. Because she is the one living it day in and day out and always, always with a smile that can light even the darkest day. Then you give yourself a mental reality check and say, "this is not a big deal".

Yes, we heavy sigh and are quite the martyrs at times (not in front of the Toodle Bug) but mostly we are a team. In it together even when we tell the other one "Your turn! I did it last!" Which by the way happens every night at about 1:30 a.m. when her feeding pump alarm goes off and one of us has to stagger out of bed, to the kitchen and into The Toots room to refill her food bag. And we are merciless. Not our turn, not our problem.

Of course, all bets are off if she cries or sets off a scary alarm. We both are on the run to her room then and to hell with turns.

But guess what? It's my turn tonight...