Friday, September 5, 2008

The dark side

Yesterday I took a quick visit to the dark side. I didn't mean to, but I was sitting here reading a thread on about pointy teeth...and that's what started it. Yes, someone was asking a simple question about their baby with Down syndrome and how his teeth appear to be coming in in a peculiar order as well as especially pointy. Someone else responded with a helpful link that goes on to explain how babies with Down syndrome sometimes have differences with their teeth - sometimes they come in pointy and sometimes not at all. I start feeling that familiar icky feeling in my stomach. A few tears fall. I click on a different thread. This one was an article about Sarah Palin. It was actually a good article, nothing to be sad about there, but then my eyes wandered down to the comments section at the bottom. I start reading one that is labeled "offensive". Why did I keep reading it then? Who knows. It talked about the worthlessness of people with Down syndrome in our society. Nice eh?

So, I feel myself slipping into the dark side. I start thinking... Ugh. I don't want to have a baby with really pointy teeth. Or with an especially small mouth and missing teeth for that matter. And the snowball starts...I do not want to deal with filling out MassHealth disability forms. Nor do I particularly feel like calling my insurance company every day asking them to explain what in the world this newest bill means. Haven't we met our deductible yet? Who knows. I am already getting tired of my dogs barking and then escaping out of the house every single time someone from Early Intervention comes over...which is often. I do not want to stress out about muscle tone and trunk strength; about crossed eyes and failed hearing tests. I do not want to listen to people say words like retard, normal and special.

At this point Dylan starts stirring in his swing. I look over and see that he's trying to wake up. I walk over to him and lift him up out of the swing. His eyes open and he looks at me. I kiss him on the cheek, hug him tight and fresh tears start. These are the good tears though. The happy ones. If having Dylan in my life means dealing with pointy teeth and ugly medical bills, then that's what it means. It is all worth it. Every single thing is worth it.


Kimberly said...

Like I said it is going to be a struggle dealing with the what ifs... people not understanding, hard obsticles to overcome. But you will overcome them!
I can imagine that you have so much to do, think about, question and ponder, the last thing you want to do is deal with negitive things, such as rude comments and rediculous insurance companies. (I can certianly help with your insurance I do that every day).
When you were feeling down, what you prove to me time and time again that you will get through this and be the most amazing mother to the most beautiful little boy and girl, is that when you look at Dylan you don't think thoes 'dark' things, you think how much you look forward to him pushing through thoes teeth, whether they are small, pointy, square, or maybe buck like mine :) You feel pure love and happiness, and that is all you need. I love you Laur, you are doing so great and you are in my thoughts everyday :)

Cleo said...

Hi Laurie, You are a great mother and you are doing everything the best way you can. He is your Dylan, he is your perfect baby, perfect just the way he is. Dylan is a warrior, he is OK and he will be OK. Try to live one day at a time. It’s only natural that you are going through all these emotions, it’s OK, It will get better you will see. My niece is a beautiful and perfect baby girl. She was born with one extra chromosome (Trisomy 21), she is five months old and had open heart surgery a month ago, she is doing GREAT!!!. Michelle is a gift, a blessing, a happy, sweet, strong, VERY SMART and loving angel. This is what really counts, who cares what others think or say about her, they don’t know her. I do. I love her TOO MUCH and know that ALL she REALLY needs is our unconditional love, acceptance and respect. She might face some extra health and cognitive challenges that not all typical children face, but we have faith in her and know that she will overcome them all and that’s what we are here for to stand by her ALWAYS, to help her in any way we can, to support her and CELEBRATE her life, one step at the time. :D

Lis said...

What a beautiful post. Love you sweetie

Lisa said...

Laurie, I so understand what you mean, and you've put it into words so beautifully. The what-if's are frightening. I honestly think that's one of the reasons I've stayed away from support groups so far, and haven't gotten too involved with online support even. Being faced with what's out there, what other parents are facing with their DS kids, and what therefore is a possibility for Finn, is just too much for me right now. Right now Finn is just my sweet little baby, just as Dylan is your sweet little baby. I think we have to work very very hard not to think too far ahead.

Anonymous said...

just wanted to let you know that I've been to the dark side many times since becoming a mom and I don't have to deal with half the difficult things that you have. You are doing awesome and your kids are so cute! I really hope I get to meet them sometime.
Anyway, I love reading your blog and think of you guys often.