Monday, January 9, 2012

Let him eat cake . . .

Today I gave my son a piece of chocolate cake. The forbidden chocolate cake, the one that causes acid reflux, the one that gives him the sugar high from hell, the one that ruins his appetite for the rest of the day . . . yes I gave him the double chocolate cake with extra thick icing and chocolate chips.

So why? Because he deserved it. And I'm probably the last person in the world to condone food as rewards for children. Food is for nutrition, food is for life, food is not for doing a good job.

But today I realized something. Seth had a test . . . a Barium Enema test to be exact. It wasn't the first time Seth had a test like this, it was his first time for THIS particular test. He knew the deal, register, sit and wait, go in the room and be held into uncomfortable positions for possibly long periods of times and have shit stuck in your penis and/or anus and shit or piss whatever radioactive material they put inside of him out.

Yes I know that's nasty. . . how I phrased it . . . but that's the absolute truth. My child had been put through all of these tests and he has done it without yelling at me, without being resentful, without tears and without blame. He has gone to specialist after specialist, sat in ER waiting rooms to late in the night or early in the morning, he's gone to his pediatrician on Saturday when he should have been playing, had surgery at 2 1/2 years old, two sleep studies, oxygen on at night, medicines throughout our days, basically he's been put through the ringer medically.

So why shouldn't he have cake? Hasn't he earned that cake? For once I threw the fuckin' rules out the window, the fact that this cake will, in fact, cause him to have some minor reflux, and watched him enjoy that piece of cake. I watched him devour it. I savored that, that moment where my child was just a normal child. Which he is, very much, but I forget all the limitations that I put on him, the fact that he has never had an orange or orange juice, that he doesn't know the word for chocolate, that he knows the sign for "doctor" and understands and is okay with going to the doctors office.

The fact that he lay there motionless today broke my heart a bit. That he was completely passive, completely trusting in me and I feel like I don't deserve that, that I've done too much to him to deserve that. And he smiled at me and we sang and I could feel myself cringing inwardly, feel my smile breaking as my heart did.

And I thought about things that people had said, that life for a person with Down Syndrome would be miserable. It's not the complete truth, Seth's life is wonderful, but there are these moments, the moments where I say to myself "was I right in bringing him into this world to have this stuff done to him?" And I think I was, I want to believe that I was, I want to believe that by bringing him to these doctors appointments and getting these tests that I'm doing the very best for him and his needs, but these moments break me and fill me with doubt.

So there it is, the truth, that I do wonder, that I do question myself . . .daily. And most days I say "yes Shanna, you did the right thing, you are a good mom" and others . . . well not so much.

A little note on why I haven't written in very long:

I've been going through a lot lately, a personal crisis of sorts. I'm currently in therapy and feeling much better. No meds for me, just talking, lots of it, because apparently it's what I really need. I've had a life before Down Syndrome and Seth, a life that left a lot of scars, and while Down Syndrome isn't the root of my reasons for therapy, it does come up and it is something that I still struggle with. It's not something you get over. I'm not over my child having Down Syndrome. I'm dealing with the fact that he does and that, while I love him for who he is, it's still a hard thing to accept and it's a daily struggle.

Wow I just reread that . . . "I'm not over my child having Down Syndrome" Those word weigh a lot. They mean a lot and it means even more for me to write them because honestly it's not something I would say out loud. It's not something I want to admit. I want people to think that I 100% accept Seth having Down Syndrome because I want to appear perfect in my love for him. And you know what? My love for him is not in question here, I LOVE MY SON. What is in question is me hating what Down Syndrome means for him and our family. It means hating moments like today, standing in that cold room with Seth on a metal table. It means a lot of tears and guilt. I hate that part of it.


  1. Stumbled upon your blog and have enjoyed reading it. Love your honesty and your way with words. I don't have a child with down syndrome, but my sister (Heather, 30) was born with a severe case of cerebral palsy (no walking, talking, in diapers, tube-fed), so I am familiar with special needs and what the realities meant to our family. Take care. Your son is beautiful- love his eyes. ;)