Friday, June 10, 2011

Nobody puts Baby in a corner (campsite!)

First time primitive camping with an 18 month old and a six year old.  Tips? Troubles?  Mama has done the alone-in-the-woods-with-a-mechanical-pencil-and-some-rubbing-alcohol type stuff, but I've never done it with the kids.  I find myself somewhat trepidatious, even though I have decent wilderness skills.  I've never had to use them with the kids, though, and well... Accidentally Mommy would prefer not to rock the boat and end up Accidentally Needing Them.

Please... discuss in comments!  I'm sure everyone has an anecdote if nothing else, of their own.  

Thursday, June 9, 2011

To eat, or not to eat (with kids?) That is the question.

There's been a lot of banter for a long time now about when parents should take their children to restaurants, and what to do if their children become fussy, or worse- downright disruptive and rude.  There have even been movements where certain restaurants who are not necessarily inappropriate for a family to dine in are banning children, not unlike the "if you're under four feet, you may not ride" signs you see at Splash Mountain.

I have two children.  Snow white is often added in as the third, if not Blueberry Nights. I'd say I'm alone with them about 70% of the time, and we do go out to eat on a semi-regular basis.  Now, with that said, I'd like you to watch the ABC clip from the show "What would you do?" about out of control kids in "family friendly" restaurants.  Here's the linky.

I'm appalled on multiple counts.  Number one, that a parent has become so overwhelmed that they cannot effectively deal with their children when they reach that point of meltdown.  (Yes, I know those were actors, but none of us can deny that it happens every day.)  Number two, I'm shocked that so many people voted to oust the family, instead of taking initiative.  In this circumstance, I refer to the wait staff and managers.

Having worked in food service, one of the things that was always stressed to us as serve staff is diffuse, diffuse, diffuse.  Now, obviously in certain circumstances there isn't much to be done.  That said, there is always *something* to try, even if it's calling back to the kitchen for some nibblies on the house.  And don't tell me there isn't always a way to do it... forgo your OWN nibblies.  This isn't even for the childrens' sake.  Take one long look at the parent, and if you see a human being at their breaking point, reach out with a lifeline.

The other thing that really, really upset me was the reaction of other parents, or people who otherwise worked with children.* (*not including the teacher at the end.  She was awesome.)

Admittedly, there are often instances where it is inappropriate to scold or intervene in another child's circumstance.  Here, though?  Here is where you will see and have seen me do any of the following:

  • Offer distraction.  Like I said, 2-4 kids at all times, I have a large supply of somewhat melty crayons, wrinkled paper, small toys, board books, and even some individually wrapped nibblies (GOD I love the word "nibblies,") at the bottom of my purse/bag.  Talk to mom or dad first, of course, but if they give the go ahead? Dude.  Matchbox cars and crayons can be replaced for less than a dollar.  Share your distraction wealth, even if it means a quiet, impromptu story time with your "Who's nose is this?" book.

  • Quiet games!  As always, check with mom or dad first, but if Thundercats Are Go, engage not only your own children, but theirs as well.  I spy, Simon Says, hell... even Rock/Paper/Scissors are all great, especially since you're someone they don't know that wishes to pay attention to them.  Under the age of ten, that is a HUGE moment, since they are still at the stage of psychological development that attention = praise, and many kids will happily join in to attain that praise.

  • For children that are older and engaged in downright destructive behavior, I've found that a quiet scolding that is non-ego-damaging can work, and work quickly.  Most often, I go with "You know what?  You are awesome, and I know your mama/daddy raised you to show how awesome you are, instead of acting/doing this.  Could you show me why they think you're as special as you are?"  It's praise more than scold, and it reminds them that their parents ARE proud of them, and that their behavior is perhaps not living up to the best qualities they possess.  Now, that said, I live in the deep south.  I've had neighbors/friends that told me it was okay to strap their kids' asses if necessary.  Regardless of that, though - encourage good behavior with redirecting praise, and you generally won't get an objection from the overwhelmed and exhausted parent because you're NOT berating or punishing, you're acknowledging that their child has GOOD qualities, and you're able to see that through their rowdy behavior.
We're all in the same club, ya'll.  We have created and brought forth these tiny people with their own tiny personalities, egos, strengths and weaknesses.  We are all playing by ear, because none of us have a manual on how to shape our little beings into successful adults.  Therefore, shouldn't we all work together to ad lib the manual when we find a club member who is struggling?

Regardless of what anyone else will say or do, I'd like you to know that I will always, always try to lend you a hand when you need it.

Wednesday, June 8, 2011

Bug update

Today was the long awaited appointment with the genetics team.  We were referred there for suspicious hyperpigmentation concurrent with a neurological disorder called Neurofibromatosis type I.  (NF1 for short.)  Additionally, the possibility of one of the many mutations of Cystic Fibrosis has been on the table for a long time, now.

There are many things that were said during the appointment that I'm sure I'll miss in this note, but here goes.

In regards to the NF1, he has a big head and a small stature.  That, combined with the cafe au lait stains, the gross and fine motor delays, and the speech delay has led the team to conclude that he is definitely diagnosed, with a 75% surety. The blood test for the other 25% is $2k out of pocket.  We're going to take the 75%.  Now, what does this mean for him in the future?  No one knows.  He could develop nodules in his brain, on his spine, on his nerves, in his muscles, on his skin, or in his eyes.  By the same token, he could never exhibit another new symptom.  He may not speak, he may.  He may fall into the autistic spectrum, he may not.  There's a lot of may/may not's with this one.  He goes for a recheck in a year, unless new developments arise.

That out of the way, there is definite concern for his slight stature.  Height and weight fall just under the third percentile for him.  With all of the GI issues and his continued failure to thrive, having the sequencing done for Cystic Fibrosis was a definite.

In regards to just his slight stature, there may have been some malabsorption and malnutrition during the puking/diarrhea times.  In addition to the may/may not's above, his grown may/may not have been stunted, and may/may not even out later.

Overwhelmed? Yes.  But that is where we are.  Love you all, xoxo

Tuesday, June 7, 2011

The one where she talks of everything, and nothing at all.

Empty promises to return to the blogging front lines have begun to gather dust.

Have you ever been so far into the middle of the storm that you begin to wonder if you've lost your footing, perhaps stumbled into some alternate reality?

I'm there.  I've been there for a while now.  While the landscape is vaguely familiar, I have yet to acquaint myself with it.  It's populated by the people who have always occupied the cast list in my life; to the positive of that, some have been unwittingly blessed, and saved from being typecast as villains, instead taking on the roles of sound reason and closest to heart.  Of them I which I could talk more, but unfortunately there are plot devices still at large that could easily ruin the ending.

The children.  My beautiful Kinder Major and Bug. Snow white, and her excitement to see me when she comes in the door.  Blueberry Night, a character in a new role, so... lost.  The children are also left to the devices of the writers.  They are the ultimate balm for my troubled heart, but the source of the trouble is the trials they're forced to endure.

I know, I know... you're reading this and thinking "Jesus god, could she lay the rhetoric on any thicker?  Mayhap we could call Tammy Fay on over to give her a few tips on the womanly art of slathering."

I won't lie - I'm feeling a little 'mo.  I can't talk about the most important developments in my life right now, because they're intrinsically linked to the most devastating ones.  While not as "bad" as the hardships that friends and family are enduring, they have a profound effect on four small, beautiful souls.  I'm helpless, and stuck in a stalemate with the universe.  Were I in my ancestral home, you'd find me leaving fry bread and beer at the closest rock cairn.  However, I doubt that the Tuatha De have deigned to follow my family this far and this long.   No, if there is cosmic mischief about, it's coming from far newer tricksters.

There I go again, with the rhetoric.

Tonight, this morning, right this second with my fingers on the keyboard, my stomach is churning, my head is pounding, my teeth are aching, and my eyes are burning.  When I tried to sleep, I found myself doing so in tiny snippets that left me more tired than I was when I started out.

In t-5:00 hours, I take Bug to see the pediatric geneticist.  At 19 months, he is 21 lbs and 29".  It was a fight to get him where he is - olive oil in everything savory, coconut oil in everything sweet.  Balancing out proteins and fats to protect his kidneys and gallbladder.  Strictly monitoring the ingredients of everything that goes into his mouth, cutting out all dairy in any incarnation.  Powdered prescription formula derived from amino acids, re-constituted with vanilla rice milk to mask the taste.

He has only just begun walking in the past two weeks, and his verbal accomplishments are definitely behind the standard milestones.

Frightening possibilities have been thrown down on the table.  Possibilities that, should they become realities, will leave me wondering when I will have to bury my son, or possibly worse, how often I will have to sit with him in hospital as he receives painful treatments to create some semblance of a normal existence.

I sit here, typing this while I watch him sleep in his pack and play, with tears running down my cheeks whenever I think too hard about the implications of the fact that we've made it to this clinic to begin with.

As a woman, not a mother, not a fiance, not a step mother to Blueberry Nights, I've doubted my faith.

When Bug was conceived, I was unsure.  His pregnancy was fraught with difficulties, from a placental abruption in the first trimester he never should have lived through, to his rocky induction at 36w5d.  When his other biological contributor showed his dangerous and sadistic true self, I was angry.  I hated myself and I hated Bug for existing.  I hated him because he was a very prominent reminder of the danger I placed Kinder Major in, of my poor ability to judge one's character.  I hated him, because there I was again - single, alone, with no one that wanted any of us.

It's a hard thing, to go through a pregnancy, an entire pregnancy, with the only touch you receive being your OB exams and the occasional hug from family.  To be isolated, and watch the world and friends and family go by, chattering excitedly about what coloring the baby will favor, mama or papa, to watch partners look at their wives and fall in love all over again.  To know that there is no one who feels that way.

No one.

It creates bitterness.  It creates hatred.  It creates a miserable existence.

But in the end, I did love him.  I loved him the instant they placed him on my chest, smelling of the intoxicating scent that is new birth.  He looked into my eyes in that moment, as I rubbed him to stimulate him, doing his APGARS in my head and realizing he was failing them miserably.  In that moment, I knew that he was just as stubborn as me, and that I had misjudged him.

So now, here I sit, trembling at the prospect of walking in there alone, without the man who loves us retroactively, who refuses to acknowledge that he is not Bug's daddy.  He is off working for the security of our future.  He loves us.  It's odd to see it typed out that way.  He loves all of us.  Kinder Major, Blueberry Nights, and Bug, as well as me.  We love him back, fiercely, naturally.  Us as a family is remarkably organic in our mismatched minor dysfunction.  He is my best friend and my, dare I be so cliche, soul mate.  It took six years to realize it, but we did, and together as a family it seems like it will all be okay, that we'll make it some way.  The only comfort about him being there and us being here, is that it reinforces our beliefs (and slight trepidation,) that our love as a family is palpable, even 140 miles away.

Can that love make up for those 36 weeks of anger and pain, though?  Or am I to be punished through his punishment?  That, truly, is Hell on Earth.  To watch helplessly as the merry-go-round spins out of control, and traps the littlest feet in the nightmare.  To watch him struggle, to worry and wonder, and in the end be sentenced harshly.

Suddenly, I'm out of things to say.  Time to shower, to put on a pretty face, and my best, most confident foot forward, for all of us need it today.