Thursday, January 19, 2012

Waiting for you to shine

I know I'm a Rachel Coleman freak and I adore her . . .but really she is awesome. One of her songs, "Shine", she wrote about her daughter Lucy who has spina bifida and cerebral palsy. It's about realizing the pain and hurt about your child's diagnosis and knowing that they will do everything in "their own time" and that eventually they will "shine".

So here I am, waiting for Seth's time to shine. While Seth always shines to me, I realize that he doesn't to others, or only to certain people whom appreciate his specialness.

Having a child with special needs is a roller coaster ride. One minute you are up on the highest hill because your child just mastered that milestone, learned how to walk, said their first word, called you "mama" for the first time . . .and then you rolling down that hill, faster and faster until you reach the lowest bottom and and that tread up the hill starts again.

There is never a period of going straight, forward, it's always a cycle of ups and downs. And while the ups are wonderful, they are fantastic, the downs are really hard. You feel like you are always waiting for your child to "shine".

With Seth and milestones it's like magic. . . we never know when it's going to happen. We could work on skills for months and months on end with no develpment and then . . . boom on day he gets it and that skill is mastered. Do you know what happens then? We move onto the next milestone, we go back to the bottom and move on up that hill, slowly and steadily, until it is time to come crashing down again.

It's amazing where Seth is now compared to how he came into this world. And it's amazing to see where we are as parents with him. But I have to admit, four years down this road and I didn't expect the downs still to be so painful. I didn't know that I would always feel like there was more to get done, more to do, more to work on. There was a point where once I felt Seth was walking then it would all be uphill from there. For a time it was, for a time it was wonderful, but then I realized, well Seth is walking but his balance sucks and he has no stamina to walk for long periods of time. So my list of stuff to work on got longer.

When Seth said his first word, I thought "great he's going to talk". Three years later and speech is a constant battle. Yes he signs wonderfully, yes he can express his wants and needs to us, but only his parents can understand his speech. At four his speech is unintelligible to others.

Life with a child with Down Syndrome is not easy, it's not all rainbows and unicorns and skittles. It's not about writing a blog about how wonderful the small things are and having millions of Etsy sponsors pay you shitloads of money to brag about their products. It's hard. I'm not going to sugarcoat things here on this blog. If you want to read about unicorns shitting out butterflies then go to her blog. Now excuse me, we have hills to move up on. Slowly and steadily. . . but we'll shine again at the top.

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.