Hopeful Parent-ku

I'm over at Hopeful Parents today with the following entry.  Be sure to click your way over to their site and sit down a spell!

Alright, let's get real here for a minute.  I have admittedly been a wee bit lax on regular blogging, which in turn means a laxness here at Hopeful Parents.  As I've said in my own blog, it's not that I don't have things to say, it's just that I realized that my state of mind recently is such that all my blog posts end up sounding whiny and bitchy.  I'm not a smoke and mirrors, everything-is-just peachy-when-really-it's-not kind of girl--quite the opposite--but it still doesn't feel right to me to look back on my reflections and to only read negativity.  I very briefly tried to hold myself to a weekly entry called 'thankful Sundays.'  My family does not attend church, so reflecting on what I was thankful for on a day traditionally held for church-going, I thought  was good practice.  Yep...didn't last very long.  The gripes took over way too often and made me feel false in my attempts to try and come up with something cheery.  (yes, this is all probably good information for a therapist or the zen teacher I probably need to start seeing)

So with that, I decided that today I wasn't going to bitch and whine.  No, sir, we're going to have a little fun here today, and I do hope that you'll join me!

Back when I lived on the mother ship, (that's the great state of Texas for those of you who don't know), I was a member of a lovely virtual community of mothers.  One such mother has her own fabulous blog called 'Haiku of the Day,' which I highly recommend you read.  Kari's pretty damned funny, and her haikus are, too, even though life is certainly not always a bowl of cherries for her either.  It's quite therapeutic to come up with your own haiku when things are seeming a bit shitty in your life, so I think today is a perfect time to come up with a few of my own.  They don't always have to be funny, and they don't always have to be sad; they're quick expressions of your feelings or current situation.  I find that leaving them as they are on my first take is best.  I honestly don't ever remember revising a haiku upon second reading as you might with other poetry styles.  Here's my quick take on a few haikus for today.  Share some of yours in the comments section!

Shower, elusive

My hair's still in a clip

Oh, wait, that's the dog!

Diapers at seven

Not quite what I imagined

No pee on the floor!

Little brother big

While bigger brother little

Confuses me some

 Parenting is hard

Nobody warned me of this

Where's my manual?

Winning Numbers

I tell people that B, my youngest who just turned four years old, is my lottery win. As with all things that attach themselves to a mother's sense of guilt, I do feel the need to qualify this statement by saying that this does not in any way lessen my love for M. M is his own beautiful being, but if I said that I did not have hopes that his (and my) life would go differently, I would be lying.

Now that that's out of the way, onto those winning numbers!

I don't talk about him enough here and I realize that I should. For he is my little beam of light, as frustrating as he-like many preschoolers-can certainly be.

I naturally had to 'guide' him on not chucking the sand he was digging into the wind, whereby it would then end up in his brother's and the dog's eyes.

B is smart. He has his father's quickness and my gift for gab--combined traits that both amaze and annoy me. But above all else, he is kind and thoughtful. He can seemingly Eddie Haskell you, but it's genuine--really and truly genuine. He knows just the right moment to come over and rub my back or plant a huge kiss on me and tell me, 'You're the most beautiful Mom ever,' or 'I love your heart.' (my personal favorite)

He didn't ask to be brought into a family where special needs loom over us day in and day out.  I realize that he knows no different, but I do believe it will serve him well in later years.  I'm sure most of us parents thrown into this mayhem believe this of our typical children.  

One thing that has increasingly been difficult for me to hear from my little man is his desire to have 'a three year old sister one day.'  I have heard this statement no less than five times a week for the past several months. I think he believes that a sister might talk and play with him; might not pinch and grab his arms when he tried to interact or did what little brothers are supposed to do and took away his big brother's toy.  (That's a bit more tricky when said toy is an iPad, the only 'toy' in which big brother shows ANY interest, day in and day out.)  Regardless, he tries so hard with his big brother, trying to please him by bringing him his favorite 'chewie' when he's out of sorts, or mimicking our words to try and get him to perform self-help skills or the like, when he says things like 'Use your fork, M!'  He does his very best to include a boy who seems to not want it.  And for that, I am greatly appreciative.

I desperately wish I could give him a more typical playmate, but if I may be honest here, I am petrified of trying to get pregnant again and have definitely closed my mind to that possibility.  I don't believe the other half thinks it would be a bad thing to attempt, but as the one who would carry the baby, I know that my current stress level would be a detriment to creating a healthy being.  And then, of course, there is that genetics thing.  See?  This is why I call B my lottery win.  And no one wins the lottery twice...

But back to my amazing boy.  Because this is my diary and I want to read it in later years and remember the wonder of him from this time--I need to do a better job of reminding myself of all those funny things he says and does.  Maybe I should create a running list on an entry I don't publish but once a year to memorialize those seemingly small phrases and gestures that he performs that tug at my heart or make me need to stifle a laugh in order to be the grown up I'm supposed to be.  For example, and I realize there are some readers who won't find this in the least bit funny, the other day (after having had an amazing birthday weekend complete with a visit from an out of town grandma and two cousins) he was feeling a bit pouty and clearly needed to try and hurt me.  So he looked at me with one eyebrow furrowed as much as he could, and a hand on his hips to say, 'I had a bad fucking birthday.'
Oh, my stars, I could not believe he said that!  I turned around for a split second to get it together and then turned back to him to appropriately reprimand him for saying such a thing.  I suppose this is one of those situations where the phrase 'Do as I say, not as I do' comes in handy?  Hopefully we won't hear anymore f-bombs come out of his beautiful little mouth until he's an adult :)

B has a great love for animals.  Until July of 2009, we had five pets:  three dogs and two cats.  A young woman in college and shortly thereafter does not consider the fact that adopting five animals in a relatively short time period means that all five will become senior citizens around the same time.  Nor does she consider that there may be any extenuating circumstances in her life that may make caring for five aging pets that much more challenging.  Nonetheless, I do hope (and believe) my love for animals has somehow rubbed off on my youngest child.  When we were close to losing the first of our five pets, our beloved Daisy dog, B would sit for what seemed a long time in the world of a then-two-year-old, petting her and loving on her and saying, 'Aww, poor girl,' as she laid quietly beside him, the cancer growing within her.  And though we'd talked very openly about Daisy's death and where we believed she went afterward, I was unable to tell him that I had made the decision last March to have one of our cats (Jade, aged 15 years) put to sleep because, despite not finding any medical reasons why, our least social pet was peeing so badly around our home that the boys could no longer sleep in their bedroom until we replaced the carpet.  He asked many times where Jade had gone--she'd had a habit of sneaking out from time to time and being gone for days on end despite being an indoor cat--and finally about six months after the fact, I *may* have told him in passing that she was in heaven.  Though I don't believe he had much of a relationship with Jade either, as recently as two weeks ago I overheard him telling an elf at a children's Christmas show (of all people!) that he had a cat once, named Jader, and she was in heaven.  Oh, this beautiful child who never forgets a single thing!  He amazes me!
And now, our oldest dog, Sydney, is very, very close to our needing to say goodbye.  At 16, she, too, has cancer that has spread to her bones.  And like with Daisy, I am open and honest with B about her.  Not because I am one of those Moms who gives her young children a little too much information, but because I know that he has that 'thing' within him to make heads or tails of it all when it comes to beloved pets.

So to my boy--the one who screamed for the first 18 months of his life and scared me into thinking that he'd be that way forever--you are my sunshine.  Really and truly.  My life is immeasurably better each and every day because of you.

It's Like This. Or not...

Do most of us have a vision or a dream of what our perfect lives should look like, but an inability to attain it? Is it idealistic or selfish to wish for a different you than the one you live with each and every day? I am struggling to live in the now...I suppose I have been stuck in that rut for some time. I have a vision and I just don't know how to get there. Let me rephrase that. I don't know if I'm supposed to get there. When you get married--and especially when you have children--you take on a new identity; a we, not just me, unit that must be considered as a whole. But the 'we' can't entirely work properly if the 'me's' inside of it aren't in tune, right?

Here's my vision (or at least an aerial view of it):

1. A happy, harmonious family unit. Yes, there will still be the normal bickering, but a little less of the tension we have looming over us now would be nice.

2. Music all around us: I always envisioned having a little pick up band that would come to my home once a week or so and play music and drink wine. M's often quite deeply plugged into music-especially when it is live--and I have always thought having a sort of hippie, extended, musical family would benefit him greatly. Last time that happened was on our front porch in Austin, 2007. That's over three years ago for those of you who have killed enough brain cells (like me) to not be able to do basic math :) In other words: too damned long ago. Oh, you should have seen M at that party! He stood an arm's length from the electric guitar player; mesmerized and calm. It was beautiful.

3. A home that we love and want to live in for the rest of our lives (or at least feel like we'd want to). We move around. A lot. Our last home (same one that had that magically musical front porch!) was pretty close to perfect. We had four, fully-fenced acres to safely play on with the most beautiful trees I have ever seen on a residential plot in Central Texas. The deer had babies in our yard each Spring, and from my office window I welcomed back the monogamous pair of woodpeckers as they returned year after year to the same oak tree to kick out the wintering house wrens and have their babies. We watched our creek ebb and flow with the rains, saved a snake once from some garden twine, and took tractor rides down the block to feed the neighborhood goats. I miss having that space!

4. More quiet moments to reflect and write. I have fleeting moments of profound thoughts running through my head. Those are few and far between these days, and other less appreciated moments zap them from my thoughts almost as soon as they've appeared. I know I have a voice to share. I know I have things to put to paper (or blog as it were) that could very well help me process this life and get one step closer to my own version of nirvana, but it's all happening so fiercely and so quickly that I have no time to let it simmer and soak.
Like now, for instance...I've gotten up no less than five times to attend to everyone else's needs. This is life as a parent, I realize. And M is now about four feet from me with his ipad blaring another Disney movie, so I've gotten up a sixth time to turn down the volume. The flow of thoughts that were in my head before I started this post have withered and I am left once again feeling like I didn't quite express what I wanted to, and I certainly have no idea how to conclude it.

I am not living the life I know I am capable of living. This much I know is true. And so the days keep coming and going, no more fulfilled than the last. And my children suffer for it. And I suffer for it. And I must figure out a way to find that music and make it a part of our daily lives.

Have You Seen This?

Truly amazing and beautiful...

Is There A Doctor In The House?

I posted the following at Hopeful Parents. Be sure to stop by their site for the Pampered Chef giveaway!

M has pink eye. How we had managed to go for over seven years unscathed by this lovely bacteria, I am not sure. Actually, I think we might be fairly average in this regard, (I've never had it in my 37), but my pediatrician's shock over it made me wonder if it was that unusual to have not experienced such joy as of yet. His chuckle-y reaction got me thinking about how we are perceived by the doctors we visit who aren't traditionally the ones who see kids on the spectrum or with other special needs very often. Do they assume that with all the other craziness we seem to embody that our kids are likely to get every ailment under the sun compounded with their unfortunate tempting of the odds to have their chosen disability in the first place?

We live in a smallish town that requires one to drive over a small mountain (or a large hill--whichever optimistic/pessimistic approach you'd like to apply to this road that winds up and then down) if you want to go to any of the big box stores. And if you want to go to really good doctors...well, the word on the streets is that you should drive over the hill for that, too.

We do drive over the hill for most of our doctors, and even for a developmental pediatrician that also assists us with our biomedical intervention. However, I also wanted an in-network pediatrician nearby for those times when my kids are sick and none of us has the desire to sit in a car 30-minutes each way; not to mention a doctor who only charges us a standard co-pay rather than the full amount of a visit up front that we must then wait to get a meager reimbursement for...oh, the expenses we hopeful parents must endure!

This was the doctor we saw yesterday. He truly is a lovely man; a youngish doctor who is genuinely trying to set up an old-school, small town practice where he gets to know his patients a bit better than in the bigger towns. There are plenty of kids in our town with disabilities, but I get a strong sense he doesn't see many of them on a regular basis; and the ones he does see, I suspect are a bit easier going about doctor visits than poor M is. Whenever we go to see him (which is rarely, thank goodness) he sort of looks at me like 'how do you want me to go about doing this?' In fact, for the required school health check last year, he literally did say to me, 'What of these required items do you think I can check?' I suppose I always respect a person who is willing to admit when they don't know something, but I am so frazzled by the time we are five minutes into most appointments that I haven't even got an idea of why we are there or what my name is.

We got out relatively unscathed yesterday. I only had to wrestle M's very, very strong 62 pounds during an under-the-arm temperature scan and when the doctor was checking his ears and nose. But the times when we have had to do strep test swabs...fuggedaboutit. On those occasions I leave sweat-colored and exasperated; unnecessarily apologetic and embarrassed. I know that the doctor likely takes pity on me more than he does M. He practically said so yesterday with his comment that he felt bad for me because he knew this was going to get even more difficult as M gets bigger and stronger. It left me with a sort of unease because I am in a transitional phase with this hopeful parenting thing; a phase where I am trying my hardest to stop feeling sorry for myself and projecting that sorrow onto other people. I realize that until I can allow that transition to fully happen people-doctors included-are going to continue to put their focus on me and not necessarily as much on M.

As M's Mom and main caregiver and advocate, I have to continue to seek out the best doctors to treat and understand my son. But above and beyond that, I have to find doctors that care about him and want to get to know him. These are the gems we have to seek out to become members of our children's very important teams.

Grab A Tissue

This is a little corny, but damn if it doesn't sum this journey up really well.  Sigh...

Where's Waldo? I Mean, Deb

Man, I look at my site meter and see that people are still stopping by here to check in despite nearly a month of silence.  Thanks for a.) caring, b.) wondering what this wack job is up to now, and/or c.) being loyal readers of this chaos.

As my friend, J, said to me yesterday, 'I know you've had plenty to blog about this past month!'  Yes, indeed, I could certainly fill more pages with blah, blah, blah...general suckitude...blah, blah, blah; but as I've said before, I hate that there are long stretches where this blog becomes nothing more than a bitch fest.

I will say this:  not having in-home ABA therapy for the last seven weeks has been awful.  Really and truly awful.  M is unhappy.  I am unhappy.  Everyone is unhappy.  There are sleep issues with both boys that are compounding the unhappiness.  Negative behaviors have returned to M's world, (and then some), and my mental state just doesn't seem to be fully in check to deal with it.  I'm working on that part, but I sometimes feel like I'm walking around like a bleary-eyed drunk, which is ironic since I've actually been drinking a lot less the past couple of months.

When I was a child--starting around age six and lasting probably until I was 13--I had a recurring dream whenever I had a high fever.  In the dream, I was in a white room with no dimensions to it.  I was standing there alone and all of a sudden tires began being thrown at me.  At first the tires were quite small and thrown gently to me, (I had to catch each one), but they would gradually get larger and thrown at a faster pace.  Inevitably, when I got to the point where there was no way I was going to catch the tire, the dream would switch to a playground.  I was on one of those animals atop a large spring coil.  A boy was sitting on one next to me staring.  Never blinking.  He was going back and forth very fast and then got slower...and slower...and slower...and then I would wake up.  I know, I know.  Totally messed up, right?  Probably should have seen a therapist about that one way back when.  But the reason I bring this past dream up is because I'm feeling like I'm in that room with all those tires right now and I'm about to drop them...and then what?  What really happens when I can no longer catch all those damned tires?

I know that there are a lot of people in this world that have lives far more stressful than mine.  I know how fortunate I am in so many ways.  But when tires are being thrown at you from all directions, sometimes it's really hard to appreciate the goodness.  I suppose that's a New Year's resolution in the works.  Wouldn't it be nice if there were no need for resolutions?