Archive for July, 2009

A couple of things…

July 28, 2009 | Updates

This post was written sometime aroung the end of May…just now getting around to putting it online. 

Yesterday Samuel woke up at about 7:30 am.  When I went to take him to school at 8:30, he had fallen back to sleep.  That’s not entirely unusual, so I took him anyway thinking he would wake up soon.  When I picked him up at noon, the teacher said that despite all her efforts, he had slept through the entire day.  I brought him home.  I cleaned out his ears (something I’d been dying to do for weeks). We did ABR.  And he slept through everything until about 6 pm.  And then he was up.  And fine.  Weird.

The only thing I can figure is he must have had a huge seizure while I was in the shower or something.  He’s been having more of them lately.  We’ve been slowly raising his Keppra from 1.7 ml’s twice a day to 2 ml’s twice a day and now to 2.2 ml’s twice a day to offset the weight that he’s been gaining lately.  Did I tell you?  He’s up to 36.5 lbs!  So we’re hoping the increase in the dose will keep the seizures in check.  I think it will.  (Update notice here - Samuel is now more around 37.5 lbs.  Way to go, Samuel!)

The other thing I wanted to write was that Samuel has appeared to be more aware and understanding things lately.  He seems to pay attention more when I talk to him and I often get the feeling that he knows what I’m saying.  The other day I took him for a walk and he was good for quite some time.  But then he started to fuss.  I was talking to him and asking him what was wrong and in the conversation said, “Do you want to go back and watch a movie?”  He was wiggling from side to side and not paying attention to me until I said that and then his eyes came right in contact with mine and he held still and smiled.  It was so cute!

A few nights later,  I heard him fussing in his bed.  He was supposed to be going to sleep so I left him alone for awhile hoping he would give up.  But he didn’t so I went to check him.  It was dark in his room and I could see something all over the top of his face.  I thought, “Oh, crap!  He’s spit up and it’s all around his eyes.  He’s probably been calling me for that!”  But as I flipped on the light, I realized it was all tears.  His little face was covered with real little tears…sad tears.  I picked him up and held him and we talked for awhile.  He just seemed sad and for a minute I wondered if he was sad because of how he is.  So we talked about fun things…the field trip the next day, his fun friends at school, etc.  He slowly calmed down and let me put him back in his bed after awhile.  It broke my heart though.

People often ask me if I think Samuel will get any better.  I think that we all improve and progress over time.  I don’t think Samuel is any different.  His improvements will just come at a much slower pace.  I sure do love that kid, though.  He’s definitely got a big spot in my heart!

Teresa

My 2-year-old…

July 13, 2009 | Updates

and the cute things he says.  (Written in May of 2009 and just now getting posted.)

Nathan:  Ooouuuuch!

Mom:  Did you hurt yourself?

Nathan:  Ya…I nee kisses.

Mom:  Ok.  (Smooch.)

Nathan:  Tanks, mom.

Mom:  Yoooouuuu’rrrre wellll-come.

Nathan:  (Pause…funny look on face…then said sternly….)  I not dumb!

Mom:  (Giggling)  Noooooo!  I said you’re welcome!

Nathan:  (Smiling) Oh, you say you welcome?

Mom: Ya, goofy!

Quick mention here that this is a kid who requires kisses A LOT.  On the up side, however, kisses fix EVERYTHING for him - literally.  So it saves a lot of hassle when he bonks his head or stubs his toe.  One quick kiss and he’s on his way.  At the same time, he needs kisses for the tiniest of owies and that can take a lot of time out of a person’s day.  More than that, though, is the need to bend down a billion times a day to kiss a toe or a finger or a belly or a head because you have to kiss the place that hurts with this kid and, well, I’m not 20 anymore, so the bending gets a little old pretty quick.

Enter my personal plan to fix this problem and we have a fabulous solution.  I just started touching the place that was hurting while making a nice, big “smack” sound with my mouth and ensuring Nathan wasn’t looking right at me so he wouldn’t know the difference.  It meant I could only bend down halfway to his toe and just touch it with my hand and it was good enough for him.  Well, he must have caught the fact out of the corner of his eye that I was really using my hand to touch the owie and he must have been ok with that because as of today, I can either kiss with my lips or my “hand” and he’s totally satisfied.  Hallelujah!  I mean he has some dang cute feet, but kissing dirty toes - even cute ones - isn’t always at the top of my list of things I love to do :).

On with the story…

A little while earlier, when he fell completely off the bar stool in the kitchen and landed flat on his back on the tile floor - knocking his head against the tile, this is the conversation we had…

Mom:  Oh, no!  Did you fall off the chair?

Nathan:  (Sobbing)  Yaaaaaaaaa!

Mom:  I’m sorry.

Nathan:  (Sobbing even harder)  It’s ooooo’taaaaaayyyyy…sniffle, sniffle.

Mom:  (Giggling - man it’s hard not to giggle when they are so dang cute - even if they’re hurt.)  Boy, the kid’s got manners even when he’s dying!

And one more from today.  Nathan found his first potato bug, rolley polley, whatever your trademark for them is.  He proudly brought it to me and said,

Nathan:  Mom, what’s dat?

Mom:  It’s a bug.

Nathan:  Ooooh, it’s a bug?

Mom:  Yup, it’s a bug.

Nathan:  No, mom…dat’s MY bug!

Mom:  Oh, ok.  You can have it.

Nathan:  Ooooh, tanks, mom.

Mom:  You’re welcome.

Am I just the most generous mom ever or what?

Teresa

P.S.  Mom, this post was for you.  I said I would post you a good and happy post after making you cry over the last one.  Hope this one fits the bill :)!

The R-Word Campaign…

July 8, 2009 | Updates

I’m sure you’ve heard of it by now - the R-Word Campaign. Everyone seems to have their own take on it. Some think it’s ridiculous to request that everyone stop using a word that they claim is only meant as a joke. Others feel a deep prick to their hearts every time they hear it. Honestly, I don’t think it’s just about a word. I think it’s about something much, much bigger. I think it’s about how we, as a people, view those in our nation who are disabled. I think it’s about RESPECT for the incredible souls that live inside “imperfect” bodies.

I’m writing this post in response to an article recently written by Erik Sean Nelson in response to Governor Sarah Palin’s resignation speech where she tried to express her feelings for her disabled son, Trig, and the hurt that it causes her family when he is used by others (adults, mind you) as the butt of their jokes. Mr. Nelson’s response to her words, I am sure, will appall you:

“In Sarah Palin’s resignation announcement she complained about the treatment of her son Trig who always teaches her life lessons. She said that the “world needs more Trigs, not fewer.” That’s a presidential campaign promise we can all get behind. She will be the first politician to actually try to increase the population of retarded people. To me, it’s kinda like saying the world needs more cancer patients because they teach us such personal lessons.

Her first act as President: To introduce a Pre-K lunch buffet that includes lead paint chips. Sort of a Large HEAD-START Program.

She will then encourage women to hold off on pregnancies until their 40’s just to mix up some chromosomes.

Her policies will increase jobs because Wal-Mart is building new stores each day and someone has to be the greeter.”

Mr. Nelson has since retracted his post and apologized saying that it was meant to be ironic and he didn’t realize it was offensive until “loved ones of the retarded” emailed him stating so. Mr. Nelson, I have to say, that although your post does not sound ironic to me, your apology does. You still don’t seem to understand that “the retarded” you are addressing are actually people – with feelings, might I add.

Sadly enough, Mr. Nelson is not alone in his views. There was a similar post at the Paliban Daily that included these words:

“That’s right. Palin is about to embark on a career of causing babies to be born retarded. Down Syndrome, Fetal Alcohol Syndrome, crack addiction, or a good old-fashioned kick to the pregnant tummy, it doesn’t matter to Palin. She wants the world to have more Trigs.

Other than fueling a greater need for social services, think how this could benefit Palin politically. She already tests well with the Retarded demographic, and also the Retarded Sympathizer demographic.

Imagine the world Palin is trying to create, in which instead of a superior race, Palin breeds a stupider race. 20 years from now, she’ll only be in her late 60s. She’ll be able to run for President on the Retard ticket . . . no doubt with full support of Retardeds, Retarded Sympathizers, and the Politically-Correct.

Next time around, when Palin is told “Your platform is completely retarded”, she will be able to say, “You betcha! That’s just what my constituents want!”

In addition, there was a post at Wordsmoker that charged: “”To be honest, it’s hard to decipher what she’s on about, or on, so the most pressing question is this — did Trig Palin write this speech for her?”

Now, I could really work myself up over this and I could go on and on about how I feel when people see my son for who he is and how I feel when they don’t. I could also try to tell you why I agree with Sarah Palin and how deeply I love my son. But, truly, nothing I have ever read has stated the way I feel better than the speech given by Soeren Palumbo, a high school senior, in 2007. You can read the whole text or view the video here. But I think he sums up the way I feel as he talks of his disabled sister in the following segments:

“I’m doing this so that each and every one of you, student or teacher, thinks before the next time you use the word “retard”, before the next time you shrug off someone else’s use of the word “retard”. Think of the people you hurt, both the mentally handicapped and those who love them.

If you have to, think of my sister. Think about how she can find more happiness in the blowing of a bubble and watching it float away than most of us will in our entire lives. Think about how she will always love everyone unconditionally. Think about how she will never hate. Then think about which one of you is “retarded.”

I want to leave you with one last thought. I didn’t ask to have a mentally handicapped sister. She didn’t choose to be mentally handicapped. But I wouldn’t trade it for anything. I have learned infinitely more from her simple words and love than I have from any classroom of “higher education”. I only hope that, one-day, each of you will open your hearts enough to experience true unconditional love, because that is all any of them want to give. I hope that, someday, someone will love you as much as Olivia loves me. I hope that, someday, you will love somebody as much as I love her. I love you, Olivia.”

Maybe Sarah Palin needed to state her opinion in a simpler way. Maybe it would have been clearer if she had said that what this world needs is LESS Erik Sean Nelsons who care so little for the feelings of those who cannot defend themselves and who could obviously use a few personal lessons of his own.  And what we need MORE of is people who love unconditionally, judge less and endure all – despite the circumstances they have been dealt.

It is from THOSE people that we learn the depth and breadth of the human spirit. And it is those people who deserve our RESPECT. Respect enough to stop degrading them – in any way. It seems like the least we could do.  And maybe the best place to start IS with one little word.  Is it really so much to ask?

To join the R-Word Campaign, click here.

Love,

Teresa and her greatest hero, Samuel