Tuesday, October 28, 2008

I don't like those wires

In the last week or so, little E (the 4 year old, former micropreemie) has gotten really interested in looking at his baby photo album. The one that has the pics of him from birth until age 9 months or so. He wants to carry it around the house with him, and if I dare put it back on the shelf where it belongs, he gets it back down and asks for one of us to look at it with him.

It's amazing, isn't it, how the littlest of kids can sometimes say the biggest things? The things that just pierce your heart and throw you for a loop? Well, sometimes I think my boys are the champions at doing just that. When E first took out the photo album last week, and looked at those first few pictures of him in the first days of life, he asked me "what are all those wires, Mom?" Pang-in-the-heart #1. "Well, those were wires that connected you to machines that helped to take care of you after you were born." "You remember that you were a baby in the hospital?" (that's the phrase he and A use to describe preemies) "Yeah, I remember."

"Well, that means that you were sick when you were born, and needed the doctors and nurses to take care of you for a while." "What about that one?", motioning to the nasal cannula that gave him oxygen. "That helped you to breathe, it blew air into your nose so that you could breathe better."

Then he did it, the pang-in-the-heart to top them all: "I don't like those wires on me, Mom". Guess what, buddy? Neither do I. :( Oh how I wish that your newborn pictures, your first 3 months worth of pictures, didn't have "those wires" in them.

Every day since then, as he looks at those early pics, he'll say it again: "but I don't like those wires". Our saved pics on the computer come up now as the screen saver......it scrolls through a random assortment of pics until you tell it to stop, basically. Tonight, he said it again, while sitting in K's lap at the desk. "There's me when I was a baby, but I don't like those wires, Dad."

"I know, hon, I don't like them either."


Wednesday, October 22, 2008

Did you ever wonder.....?

...about the twists and turns of life, and how seemingly random occurrences can have such a long-lasting impact? Maybe it's just me, I'm weird and I think about these kind of things.

You know the stuff I mean, the ways in which certain people pass through your life, and end up becoming big parts of it. If you'd never met them, if you'd not gone to that party or chosen a different college or driven down a different street (literally), your whole existence might be different today. Not necessarily bad or good, just different.

I think these kinds of thoughts maybe occur more often for parents like me.....parents of preemies, of special needs kids, of challenging parenting situations, etc. It's easy, sometimes, to wallow in the worries and the fears and the self-talk of "but if I'd only...." or "if I just had not done....". You can beat yourself to a bloody emotional pulp doing that, trust me. But it doesn't change the reality of daily life, doesn't make things easier to deal with along the way......in fact, it might make it worse.

Even if I start my "what ifs" with the fact that the boys WERE preemies, don't even go back beyond that.....I can see how the entire path of my life has been forever altered by that fact. Practically every single move I've made since Aug. 2001 has been somehow influenced by this--career moves, where we live, where we send the kids to school, how I spend my days and nights, etc.

All the things that I knew absolutely ZIP about before that time, I now know intimately, things like what the NICU is, what Asperger's Syndrome means, how it feels to give your child medications (and I don't mean stuff like Tylenol). If you'd asked me what acronyms like these stood for, I probably couldn't have deciphered even one, but now........

Why don't you try it? It'll be a fun game!

As, Bs and Ds

...and that's just off of the top of my head. If I'm 100% completely honest with myself, I will admit that I didn't want this, didn't choose this road and often find myself wishing I wasn't on it. I never knew squat about IEPs and 504 plans in schools, and would have been just fine thank you very much not to have ever known about them. I would have been just fine to not ever see the inside of a therapist's office, or to have one see the inside of my house.

But thanks to a great friend, who blogs here, I'm taking another look today at the bright side of my life, the side in which I recognize how truly blessed I am to have these 2 amazing sons. 15 or 20 years ago, neither would have even survived their birth, probably, or would just have lasted a few hours or days. And just as I now can't imagine life without therapy and diagnosis and disability and struggle, I also can't imagine it without A and E, the lights of my life. When they smile, when they hug me, when they say "I love you, Mom", I know that I'd rather be on this road than on no road at all. Any day, any time, put the path in front of me and I'll follow it. Therapists? Bring 'em on. Behavior plans, medications? Where do I sign up? Because if that's what it takes to make the best life possible for my two little miracles, how can I do anything less?

Lord, I pray for strength, for perseverance, for patience and creativity, and the ability to care for and nurture these boys in the ways that are best for them. Amen.

Thursday, October 16, 2008

musings on a Thursday

Ok, so I promise I'll spare you an extended political rant today. Really. I have become addicted to the website and will just summarize last night's debate with the comment written on that site at 10:31 last night......"Congratulations, President Obama". :)

So what about regular, day-to-day life in Lowcountry SC? It's ok, still WAY too hot for Oct. 16, I'll say that. Little E is having a pretty good week, we're still struggling with the regulation of his medicine. What medicine, you say? Well, let me remind you or fill you in if you missed this development......

Well, the developmental pediatrician gave him the expected ADHD diagnosis a few weeks ago (early Sept.). I knew, in my heart, that it was coming, and the more I read and hear about the H part of ADHD, the more it confirms my fears. It's so common in former preemies, especially micros like E, so I guess it was nearly unavoidable. We started on Tenex, a very small dose, and have been watching and tweaking for a month and a half now.

We went from 1/2 mg in the morning to 1 mg, because he was still exhibiting a lot of the aggressive and impulsive symptoms that the medicine is supposed to address. 1 mg was WAY too much, and made him very, very lethargic--all he wanted to do was lay on the bed at home, and at school he was falling asleep in his lunch. :( We went back to 3/4 mg, and it worked for a while but the effectiveness faded and we STILl saw the impulsive behaviors. (Disclaimer--all kids can be impulsive, and he is only 4, but it's not ok to hit/bite/kick teachers and friends, or to blurt things out loudly and over and over in class)

So, pedi said to try going back up to 1 mg, that maybe his body was ready for that now since he was used to 3/4 mg already. She said to give it at least a week for the side effects to settle down and to really see the effectiveness (or lack?). Yesterday was 1 week, and Tuesday was really the first day we didn't see the sleepiness. I hate seeing him like that, it kills me. He's got such a sparkly and sweet personality (I know, you're thinking ? considering I just said that he hits and kicks people.....it's complicated) He's typically so curious, creative, sweet, funny, energetic, and when the meds are too much we just lose that, we lose HIM along with those undesired behaviors. :( :( :( Maybe, just maybe, we've found the dose that now can strike the balance.....keeping what makes him "him", but muting those behaviors that aren't socially acceptable and aren't going to be ok in elementary school and beyond. Wish us luck, and keep us in your prayers too.

Postscript: There's just so much about being a parent that I never knew, never even thought I'd have to experience. I can truly say that parenting is the toughest and most rewarding job of my life, AND that every part of it up to this point has been unexpected and different than what I imagined. For the bad, as well as for the good.

Tuesday, October 14, 2008

this crap is getting scary!

Of course, I mean the election/campaign process. I had a student last week tell me, unprovoked, that "if Obama wins, I'm moving to France". My response: "Are you packing your bags yet?" (yeah, I know, I probably shouldn't have but couldn't help it) And then, last Friday, another student saw my Obama bumper sticker, asked me if I support him, then went off on a rant about "the only thing he's going to do for you guys is....." . That's when I stopped listening, and interjected "what do you mean YOU guys? Wouldn't he be the president of everyone, don't we all live in the same country?" :(

And the news reports about the angry people at Republican events yelling "kill him" "terrorist" "traitor" "off with his head" "bomb Obama" etc. I'm sorry, but this is scary and ridiculous. I do not want John McCain to win, but would never shout things like that about him at any time in any situation. I absolutely cannot stand (read: HATE) President W, but would not say "kill him" or "terrorist" or anything like that, no matter how tempting it is.

We've lived the last 8 years with basically half of the country very unhappy, very disenchanted with the administration and way the country is being run. We feel that the election of 2000 was settled incorrectly, and that Bush should never have become president to start with. We feel that our country was taken to war when it shouldn't have been, and thousands of our brave soldiers died and were injured in that war when their lives and their efforts could have been put to much more use serving our country as whole, living people, not martyrs to a cause we don't agree with. But despite all this, despite the anger and frustration and disillusionment and sadness.....I do not say "Kill him" about President Bush, nor will I.

Shame on you, those that have shouted these epithets at the Republican events. You claim to be Americans, claim ownership of "family values" and being "pro-life".....how's that working out for you? Somehow the "kill him" doesn't quite jive with the pro-life agenda, at least not in my way of thinking.

Wednesday, October 1, 2008

so very unfair

I tell you, if this is what getting older is like, you can have it because I don't want any.

In the last month, I've had a long time friend diagnosed with breast cancer and subsequently have a mastectomy, another long time friend die suddenly of a heart attack at age 45, and today I learned that a wonderful friend and fellow preeclampsia survivor has lost her second baby, who was stillborn after suffering multiple heart defects.

It just seems like everywhere I look these days I see examples of how hard, unfair and even brutal life can be. It's not like this just occurred, and the world suddenly became a difficult place full of struggling, pain and loss. I know it's always been that way, and always will be, but I guess it's just hitting close to home right now.

I have wonderful networks of friends online, in both the autism and preeclampsia communities, and we all carry burdens each day. We like to share the weight of them by leaning on others, telling our stories, complaining, venting etc, but sometimes it seems like there's just so much weight to carry that even when we share we can't lift it. Moms of precious kids on the spectrum who hurt themselves and others, don't speak, are still in diapers, and the valiant families behind them who work hard every day to give them good lives and happiness. Ladies who can't conceive, or who did so but have lost a baby due to miscarriage or through stillbirth. Moms of preemies, who delivered babies far before their time and suffer through weeks or months of hospitalization and lifelong delays or disabilities. And on top of that, illnesses and deaths in my own circle of local friends.......sometimes I think this is just too hard.

Now I know what people mean when they talk about feeling like a hamster on that stupid wheel that they like to play on. You just keep running, keep trying, but never really get anywhere. You get up in the morning, get on the wheel, and valiantly begin. Work hard all day, only to feel like you're in the exact same place by nighttime (maybe even a bit further behind, if you're tired). Sleep a bit, get up and start it all over again. Is that why they call it a rat race?

I don't want it to be that way. I don't want to have my eyes fixed on the wheel and only the wheel........I want to notice what's around me, and allow myself to enjoy the little things that DO remind you that it's worth it, this thing called life. The way little E laughs, A's hugs and how he tells me he loves me so much that he can't even carry all of his love, smiles on the faces of students when they perform well and succeed. But those things are crowded out lately, by the losses and the pain and the struggle. I'm not so sure about that saying "that which does not kill us makes us stronger." That's looking like a pile of BS right now.