14 articles Articles posted in Down Syndrome

The R Word

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I haven’t talked too much about Down Syndrome since Cop was born. I don’t want to be boring, there is more to our lives than this diagnosis, but I don’t want to ignore it either. It doesn’t define us, but it certainly influences us and the way we live in the world.

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I would imagine if you are already reading my blog you aren’t my target audience with this one, but here goes.

Josh and I are lucky, I think.  The R word was not a word we had to remove from our vocabulary because it never had a place there to begin with.  But believe me when I say, I understand that’s not true for everyone. Where I work, in this part of the country, this word is a colloquialism for things that are absurd, unacceptable, undesirable or  just plain no good.

Think of the last time you heard someone say “That’s so retarded.”

I bet they weren’t talking about something that was growing or developing slowly. They were talking about something they thought was stupid. Something they thought was wrong.

People will say “I didn’t mean it” or “Don’t be so sensitive” or “It’s just a word, you know what I mean”

I’ll be honest, this was a term I found offensive before we had a developmentally disabled child, but I never spoke up about it. I’d gloss over it, move on, I didn’t want to put up a fight.

Now when I hear it, it’s hard to explain, the word alone feels like a slap in the face, a punch in the gut. I can feel it.  I wince, I cringe, I recoil.

It’s marginalizing in the worst way. It carries a negative connotation and years of unpleasant history and it strips people with mental delays of their individuality, instead pigeonholing them in this one box.

The hardest thing for me about having a child with Trisomy 21 isn’t the delays, it isn’t the therapies and the doctors visits, it isn’t the health issues. We can work hard and muscle through all of those things. The hardest part is the unkindness of others. Knowing that one day, I won’t be there to speak up for my child, that some ignorant piece of shit is going to be rude and hurtful and there isn’t going to be a damn thing I can do to protect my son from that.

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But today is not that day, I can speak up now.  I can show both my sons that the ignorant, rude and hurtful are the ones who deserve our pity, not the other way around. I can show them (even if I want to yell and scream and rage) that this is a teaching moment. This is another way Cop has made me a better, braver person.

And it does take bravery. Because even now, with the sting of the word on my cheek it’s hard to muster up the courage and think of the best way to ask someone:

“Please don’t use that word”

It’s just a word to you, if that’s true, then please find another one. Because it’s more than just a word to us.

Why Us? Why Not Us?

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We got our diagnosis a couple of months ago now, and you know; sadness, denial, anger, and acceptance. We did it. Josh was the first one of us to get to acceptance, but then he sort of lost track and got focused on all the negatives.

Health issues, money issues, possible developmental delays. I noticed that we stopped talking about baby names. I didn’t push him because we process things very differently.

The hardest day for him was when our neighbor’s daughter came over with her 9 year old who has down syndrome, to talk to us about local services. For me it was a great day, she felt a little like a kindred spirit, didn’t sugar coat things, and clued us in a bit on how awesome our town is when it comes to getting kids with special needs the therapies and help they need.  She told me about her son’s soccer team made up entirely of people with special needs, kids and adults together, that made me smile. For Josh it was a bit tougher. While I was talking with this awesome mom, Josh was playing with the kids. Their 9 year old and our 2 year old were at the same stage developmentally on a several fronts.

I think this reality hit Josh pretty hard. He was a in a funk the rest of the day, while I was riding high. Finally at bedtime we talked about it. Fear, doubt, and grief for the perfect life we have right now. I got pulled under. I lay in bed that night asking “Why? Why us?”

Night can be hard. During the day we are so busy, so happy. Life is clipping along. At night everything slows down and your thoughts have the room they need to spread and wind and travel where they need to go.

A few nights ago, after a particularly fun evening with Hen, we are again in bed and Josh says “I kind of forgot that this baby is a baby. He’s going to be a baby like Hen and then he’ll be a toddler like Hen. He’s going to make us laugh and make us mad and make our hearts swell, and I kind of got bogged down in the differences, but really, they’ll be the same”

YES! Yes they will. And he had this excited tone in his voice. I’m so glad. It’s been a while since I heard it.

And just like he pulled me under, Josh came and pulled me back out.

Now I am not asking why us? There is no answer to that question, never will be.

Or, if there is an answer it’s, why not us? Why not?

The World Anew

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When I shared “Welcome to Holland” with Josh his first response was “that doesn’t apply to us, we aren’t moving to Holland, we’ll just be visiting for a couple of years, then everything will be back to normal.”

I love his attitude, his optimism, his sense of humor and his grace.

Turns out we are moving to Holland after all. Our test results came in and our son has Down Syndrome.

I’m feeling…wow, I’m feeling everything.

I want to say first that we are OK. We aren’t even as sad or as shocked as I thought we’d be. We are crying and reading and laughing and it turns out life goes on. In the face of big news your 2 year old is still bored and still wants to play trains. The world doesn’t stop, who knew?

For some reason we never really entertained this as a possibility. It’s a lot to adjust to. I’ve cried. Then I felt guilty for crying. We have lots to learn. Right now we are pretty overwhelmed.

We are grieving again. The life we planned is gone.  The world has completely tilted on its axis. But there is a new world and we will learn to live in it.

I feel like a fool for ever worrying about treating his clubfoot. This is so much bigger. How could I have ever been worried about how our lives would change? Now all I can think about is his life, will it be hard? Will he be healthy? Will people be kind? Will he know love? I hope so, I believe he will.

I know it’ll be fine. It’ll just be a different life than we were expecting.

The Rest of the Story

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When I was pregnant with Henry we did second trimester screening test called the quad screen. It’s not a diagnostic test, but it can indicate an increased risk for Chromosomal abnormalities and birth defects like Down Syndrome and Spina Bifida. I didn’t think much about it, just agreed to it because my doctor recommended it and was very surprised when it came back with a high positive result indicating a risk for Down Syndrome.

I didn’t talk about it much with friends or family at the time and I never even mentioned it on the blog. I was scared and confused and sad. And scared, did I mention scared? When we did our 20 week ultrasound, the anatomy scan they found something called a choroid plexus cyst, a mostly likely nothing bright spot seen on the ultrasound that they consider a “soft marker” for down syndrome. We declined the amnio because of the risks (low, but still too high for our comfort level) and decided to wait and see. It was hard and worrisome to wait, and when Hen was born the first thing I said to Josh was “How is he?” and he was perfect. He would have been perfect if he’d had DS too, but he doesn’t.

This time around, wary of the very high false positive rates of the genetic screenings we decided to skip them and have a worry free pregnancy. You know what they say about the best laid plans right?

At our anatomy scan last week they found 2 soft markers for DS (echogenic focus on the heart and kidney dilation) and discovered that baby has a club foot. So despite our plans not to worry, we worry.

This week we had a very long meeting with the MFM and the genetic counselor, as well as a more in depth ultrasound. Good news is the baby does not have spina bifida, this was the big concern and I admit over the last week I worked myself into a right state over it, but we went over every centimeter of his spine and it’s closed, so that is awesome. Bad news is baby does have a club foot and that will require treatment after he is born. It’s fine. I think I’d probably be taking it harder if we hadn’t been so worried about spina bifida.

It’s like the lesser of the two birth defects and for that I’m grateful. That sounds glib, but I’m feeling a little glib about it. As for the DS, we still don’t know so we did the MaterniT21 test and we’ll hear back in 2 weeks and the kidneys are a concern as one is about 2x the size of the other, so we’ll be seeing the MFM for the rest of the pregnancy and if they don’t resolve we’ll be meeting with a… something I can’t remember the name of but it amounts to pediatric kidney doctor before and after the delivery. But as my MFM said “you can live with half a kidney! So just one is not so bad!” He’s a little glib too, we like him.

To be perfectly honest, I’m dealing with some sad feelings about the club foot. I’m grateful that its treatable and he will be healthy and live a totally normal life when he is old enough to remember. It could be worse and I’m so glad we live in a part of the world where this is just going to be a phase and not a life threatening disability. But it’ll be hard. But I’m a little sad about the way our lives will be different for a while. Some of the things I loved with Hen won’t be a part of our life and I’ll have to learn how to wear all over again and we’ll spend a lot of time at the doctors instead of blissing out and enjoying our babymoon. But I’ll get there. I’m just not there yet.

We are really fine. It’s not like being sad will change anything so I’m just going to feel my feelings and move forward. He’ll never even remember this so it’s really only going to be hard on Josh and me. Can’t ask for better than that. We are happy, really, it could be so much worse. But I’m sad too, a little bit, and I’ve been getting kind of mad regardless of whether people say “I’m sorry” or “that’s great” nothing is really the right answer you know? It’ll be fine. I’m selfishly the most upset about how things will be hard for me and what I’ll miss. Which is selfish, and I’m mad at myself for feeling this way.

So there is the update. It’s a lot. It’s a lot to process for us too.