Sunday, August 21, 2011

It's here!!!!!

Well I don't really know if it is today, what day it happened exactly, but I do know that one day around this time four years ago, around the 20's of August, I found out Seth had Down Syndrome.

I can recall everything that happened from the moment that I got the phone call but I couldn't tell you what I was doing before it, couldn't tell you what I did that particular day. Was I happy that day? Was I thinking about getting the call? Was I thinking about Seth in a positive manner or was I depressed that he might have DS? No clue. I can't tell you what the exact date was either, I really wish I remembered but it all flew out the window in that one moment. I'm not the sort of person to write dates down, not the one to say that my son took his first step on this date (yeah I don't know that either for Seth) or that he crawled this date. I give roundabouts. Like Seth took his first steps around 18 months . . . that's the sort of person I am. The same goes for diagnosis day.

Well this post isn't to bring you down (pun!) about all of the negative shit I was feeling that day. It's actually somewhat the opposite. Why you ask? Was the diagnosis not depressing? Let me tell you it was the worse news I had ever gotten up until that point in my life (worse news came later but that is another post entirely). It was devastating. But that episode of my life is over. It's done with. For three years after that diagnosis I was saddened around diagnosis day. I'm not there this year. This year I'm at peace, this year we hit normal. We found our stride as a family, our little family that has struggled so much has found happiness. We are happy. We are many other things . . . but mostly we are happy.

Do you know those moments in your life where you either man up or are reduced to rubble? Those moments that change the very fabric of who you are and what your life is? Diagnosis day was that moment for me. It became a declaration of the type of person I am, the type of mom I was going to be, the type of woman that I wanted to be. I'm not going to lie, I was weak, the thought of termination crossed my mind, it did. I'm not going to be saintly here and say that termination wasn't an option, it was. Deep down inside I couldn't though, because I did my research and I knew that DS wasn't a death sentence, that it came with it's downs (ha I love that pun for some reason!) but it had so many ups as well.

So I became that person, that mom, the mom that said "Yes I'm going to have you and I'm going to fight for you and I'm going to love you . . . . no matter what." Fuck the DS, fuck the doctors, fuck the ignorant family members, fuck the insensitive friends . . . welcome Seth. Welcome to our family, just the three of us. And I knew, I knew from that moment onward that while we weren't the most perfect family and while there would be obstacles, we had each other. Just the three of us.

So what type of woman was I? Scared, excited to meet Seth, worried, fearful, determined, ignorant.

What type of woman did I want to be? Strong . . . that about sums it up. I wanted to be someone who didn't crack under the pressure, who pushed the tears away and dug out the smiles, who lived life in a shell of protection.

What type of person am I today? Knowledgeable. Strength is overrated sometimes. I do know that a lot of people tell me that I'm strong because I'm Seth's mother, I don't think so. I just think I'm more informed. I do the best for him because I'm knowledgeable about it. I know all about the therapies, all about the medical issues, everything I need to know to help Seth grow and learn and develop into a wonderful man someday. If I don't know something I look it up or ask a friend or post on a message board . . . I find that answer. Knowledge is power in my world.

I was strong for a while . . . or so I pretended to be. Because let's face it . . . no one is that strong. We are all made of flesh and bone and my heart breaks just as easily as yours does. My smiles falter, the walls fall down in a rush of tears and I'm left being no stronger than the next person. So I let the tears fall when they need to and I smile real smiles when I'm happy. I let myself feel . . . that's the most important part of this whole process, learning that I can't control my feelings, but that I have to let myself feel what I need to feel.

Sadness has become fleeting nowadays because there is so much Seth has done, is doing and will be doing in the future. There is so much hope. There is so much laughter. There are so many smiles and "I love yous" and sticky kisses and squeezing hugs. I love it. I love our little family.

Happy Diagnosis Day Seth!!! Here is what Seth can do:

sign over 100 words!!!
eat with a fork and spoon with little spillage!!
drink out of an open cup!!!
blow bubbles!!!!
verbalize about 50 words!!!!
throw a ball!!!
help put his shirt on!!!!!
stack 7 blocks!!!
finish a 3 piece puzzle!!!
wash his hair and body!!
name all of his body parts!!!
help mommy vacuum the rug!!
put his toys away (sometimes)!!!!
swing on a big boy swing at the park!!!!

These are some of Seth's favorite things:

Signing Times
coloring (favorite color is purple)
Fresh Beat Band

He truly is an awesome person. He's our little buddy. We love him and we hope you love him too!


  1. This was great, loved reading it! I wish our diagnoses day wasn't Russell's birth day. I wish the two were separate. Last year on his birthday I had a rough time...I mean I was so happy and excited...But I couldn't help thinking back to what I had gone through and how I had felt just hrs after he was born. It made me feel guilty that those emotions were mingled in with his birthday.
    Reading how you feel now, how diagnoses day can come and go and doesn't have that power to make you relive those feelings anymore, it gives me hope...sigh...I hope I can get there one day...Get to where I celebrate Russells birthday without even a thought of "this is when we found out"...
    Thank you so much for sharing this. I really took a lot away from reading some of the things you wrote in here.

  2. This is the one thing I tell new moms of children with DS, it gets better. It takes time but each year, each day, each minute is a step away from sadness and a step towards a happy future. Now I don't expect that sadness to ever completely go away, and that's okay, so long as the happy outweighs it and most days it does. The beginning was hard, but anything that is worth it in life is hard.