What's Going One With Little One

I may have mentioned the cold Little One picked up the day after Her fever went away.
It was joined by a nasty stomach bug, both of which have politely stayed with us to welcome the respiratory infection that is our most recent visitor.  We aren't laughing any more.  For the most part, Little One is an amazing trooper and in good spirits, wanting to play.  Unfortunately I really can't bring Her around other people, especially kids.  Because believe me, She has shared some of the love with me, and no one wants what She's got.  Any of it.
The weather is frigid and nasty. Though we've worked up the courage and swathed Her in layers a couple times to play in the snow, for the most part we've been stuck indoors.  Multiple layers are not the best option for tummy troubles, and now that the cold air brings on fits of hacking coughs, we've given up.
We've barely left the house all week.
I've turned into kind of a whiner over here I think....but I have to admit that it takes a little bit of a toll to spend long days in the house, aching for my baby who I just can't get better.  Right now I'm just hoping that She gets well in time to get out at least a little bit before it's time for Her to be sick again.
By which I mean the Fever.
Little One has several teams of doctors working on what's going on with Her, and they vary a bit on the specific type of problem they are voting for in the office mystery-diagnosis pool.  But at this point they all agree on the main idea, on the overarching problem.  It seems that Little One has a sort of odd glitch in Her immune system, which causes it to ramp up and go a bit haywire for no particular reason.  Apparently this happens to people.  Not a lot.  But enough to have a name and some studies and tests to accessorize with.  It's a severe inflammatory response to nothing external, but it is related to time.
It occurs in cycles, about once per month. Which means that to within a week or so, we can expect Little One to spike high fevers about every 4-5 weeks.  Good to know, because I won't have to keep dragging her to be tortured in Emergency Rooms every month thinking She has some infection. But rough because it also means that even if She never gets another cold, or stomach bug, or infection, or allergic reaction (which is obviously not possible), She will still spend about a week a month miserable and in bed.
It's a group of 'syndromes' all related to the same gene, but they come in different flavors. We're waiting on tests and more tests and time to figure out which one we'll be having. Some are worse than others, with complications later on, some just the fevers, but most are outgrown by adolescence or adulthood. So it's lucky.
Lucky that her problem will be inconvenient, uncomfortable, un-fun, but in all likelihood not life-threatening or dangerous. Lucky that once a month is not all the time, and that in between She will be ok, and keep growing and learning and dancing around the living room.
Still.  It's been a long few weeks, and I've been reminded sometimes of Tu Nidito.  
In college J and I both volunteered for at Tu Nidito, a fantastic organization. Really, fantastic. One thing I did there was help lead support groups for kids with serious illnesses and their siblings. 
I'm reminded of how weary the parents would be sometimes.  Of little things they said, about how hard it was not to able to participate in life, with regular routines and relationships.  How the emotional toll of worrying for and hurting for the suffering of their children was like a constant weight crushing them, one that had to be fought every day.  I remember talks about how impossible it seemed to hold out against the pity and the exhaustion and maintain the structure of a normal existence for their children; when it was so much easier on their patience, their tiredness, their desire to alleviate pain and sadness in their babies to allow rules to slide, concessions to be made, treats to be showered, whining and demanding to be tolerated.  How hard it was not to allow healthy siblings to be shunted aside and made to sacrifice.  These small tastes we've had of chronic illness, like grease flying in tiny droplets from a sputtering pan, sting.
They make me guiltily thankful that Little One is not a child with a horrible, debilitating, constant illness.  They make me revere those parents in my memories even more than I did before. Which was a lot. 
To tell the truth, they make me wonder if I would be able to withstand something like that. And even wonder a little bit if I have the fortitude as a mother, the resourcefulness, to find a way to cope with this small thing 1/4 of the time for years and years to come.  In a way that keeps our little home life here from derailing every time, so that so much time is transitioning between our "sick" patterns and "normal" patterns that we start to wonder which way is up.
Admittedly, everything is magnified by the fatigue and hormonal swings of pregnancy. Admittedly, I'm on the emotional side already, a born worrier. But still, I'm surprised by how tired I've become in the last few weeks.  Not sleepy tired, muscle tired, but heavy tired. Heart tired.  I'm kind of disappointed that I haven't figured out a way to handle this better yet, and part of it is being daunted by the stretch of time yawning ahead of us, in which I might expect to repeat this cycle many dozens of times.  I know it will get easier. We'll get "used to" it.  I will figure out ways to manage things better for all of us, as we go. 
But it's turning out to be more of a challenge than I would have expected.
I remind myself that She won't have regular sickness on the heels of every fever, that this was just a bad spell.  I remind myself of all those Luckys up there, of the families at Tu Nidito and I am thankful with everything I have that She's going to be OK.
But at the same time, with Her allergies I can't help but feel a tiny bit like She's been struck by lightning twice. Hadn't we filled some cosmic quota? I worry about little things like missing that much school, like having the consistency that I think is so crucial for little ones, like the expense that will come with having to get my hair dyed when all the gray hairs start cropping up from watching Her sweat and whimper. Little molehills that go clamoring over one anothers' backs and piling up until, magnified by the mommy lens, they start to look like a mountain.  Well.  A hill, anyways.
So, that's what's going on with Little One. As far as we know. So far.  We have some more appointments and blood to be drawn this week.  And so...I guess we'll just wait and see, and do what everyone does with hills, and keep climbing.