Recently, I have been feeling pretty terribly about the way I reacted when I first found out that Dylan may have Down syndrome. I realize this was over 6 months ago, but for some reason I keep playing that scene back in my head. I wonder if my reaction was typical. Looking back now, it sure doesn't feel like it should have been a typical way to react. It makes me feel like a pretty shallow person, really. Knowing what I know now...it could have, would have, and should have been different.
When the doctor told me after Dylan was born, I did not speak. I mean, not one word. Hearing her say "Down syndrome"...I don't even know how to explain what that felt like. I mean honestly, those were the last two words I ever expected to hear about my own child. All I could think of was 'this is bad...Down syndrome is bad'. She kept talking, but I wasn't listening anymore. I no longer cared. About anything. In my mind, my "perfect" little life was no longer perfect.
I remember a couple of hours later telling my sister how I wish so badly that I could go home and pretend that none of this ever happened. I mean, the pregnancy, birth, everything. She said, "Oh Laurie. No you don't." But you know what? The sad thing is, at that moment, I really did.
Now when I look at Dylan, I can't help but feel like I have somehow betrayed him. I feel so badly that we started off the way that we did. I can not believe how scared I was. What was I so afraid of, I wonder? I can not believe there was ever a time that I wished he was not here. I can not believe that I ever questioned my love for him. Even typing that hurts my stomach. I look at Dylan now and my eyes well up. I know that is terribly cheesy, but it's true! I feel so connected to this little boy now. He is my love, my hero. I hope that he will always know that.
Yesterday in the mail we received a very large and rather heavy envelope. Inside it contained 34 pages of explanation of benefits from Dylan's heart surgery. Yes I suppose 34 pages seems like alot, but what is slightly nuts is that this is just one envelope of many that we receive almost daily. What was particularly shocking to me and my husband this time, was that on ONE of the pages, 1 of the 34 pages of charges, was a list of "hospital services" (whatever those might be?) totalling
$164, 907.43. Uhm...yeah. Let me just say that we are so fortunate to have health insurance as well as an incredibly supportive network of family and friends.
So, thank you so much to everyone who has helped us, both emotionally and financially, these past 6 months. We love you!!
The other thing...
Cassidy, our 2 year old, has not taken a nap for the past 2 days. I mean, we put her up there and everything, but she won't sleep - and this is the child who typically asks for naptime. Does this mean she is done with naps forever then? If so, it's bound to be a looong winter!!!
On a positive note, she has taken an interest in her Dora potty recently. As a matter of fact, 2 days ago she even managed to...well you know...go in the potty.
Ah, the exciting life of a 2 year old.