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Showing posts from February, 2017

Perfection

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When you have a child, that child is perfect. Not in the literal, Merriam Webster sense of the word, but in the foggy lens of parenthood sense of the word. You look at your child, and everything about them is just as it should be.

When I look at both of my kids, they are perfect to me. When I bring Eli to the doctor for his check ups, his pediatrician tells me how wonderful he looks. She tells me he talks well, and he's growing well, and she will see him in a few months for his next regular check up.
When I bring Henry to the doctor, it is much different.
The specialist that we are seeing will ask me how Henry is doing. I will tell him or her that Henry is doing well. They will run some tests, or pull out some lab work, or take a look at him. And then explain to me that, in fact, there is a problem.
No matter how many times this happens, my heart still breaks a little.
I look at his eyes, and they are perfect. They have big, long lashes and they are starting to turn hazel, j…

How Should I Talk To A New Parent of a Child With Down Syndrome?

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Maybe you know someone who has just received a prenatal Down syndrome diagnosis, or know someone who has just welcomed a child with this diagnosis. It can feel like you don't know where to start or what to say. How do you know what the right thing to say is?

We heard many wonderful things when our son was born, and we heard many not-so-great things. I think almost everyone had good intentions, but some things were a little hard to hear. I shared a few examples with the hope that you will be able to know the better thing to say, too.
1. What They Said: I'm so sorry
    What I Wish They Said: Congratulations
Often parents of kids with disabilities don't hear any congratulatory remarks when their child is born. Or, at least not at first. Please congratulate your friend or loved one about their child just as you would any other child. All babies deserve to be celebrated, and hearing some initial positivity will mean the world to the parents. Do NOT say "I'm sorry"…

How The [bleep] Did This Happen?

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I don't know that I have ever put the full story down in writing of how we got here. This will be a lengthy post, but will explain all about our pregnancy, delivery and the shock that came quickly after. I also understand how unbelievable our story is so I want to lay it all out there.

At our 12 week scan, Henry's nuchal measurement, a measurement of the fluid behind his neck, measured at 3.5. With a measurement of 3.5 or higher, you are referred to a geneticist because of an increased chance of a chromosomal  defect. The geneticist took us right away, and told us based on our history and the ultrasound, we had a 20% chance of having a child with a chromosomal abnormality. The geneticist offered us two options -- a blood test, called the MaterniT21, or an amniocentesis, which has a 1/400 risk of miscarriage. She pressured us to get the amniocentesis, and assured us she could get us in right away. She gave us a packet of papers explaining the most common types of chromosomal …

How I Knew Down Syndrome Wasnt That Scary

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When we received our birth diagnosis of Down syndrome for Henry, I am reluctant to admit I was pretty sad. I thought I was going to have this "perfect" baby, and now my head was filled with all of the things he wouldn't be able to do. While I accepted the diagnosis relatively quickly and loved our son unconditionally, I still felt very concerned about the future.  What did this diagnosis mean for him? What did it mean for our marriage? What did it mean for our family?


However, I started to notice something very quickly.

I read several books and scoured the internet for support groups those first few weeks. I soon noticed a common theme. When asked if they would change their child and take away Down syndrome if it were possible, every parent I read about said no. Not one or two parents. Dozens of families. All saying that even if it were possible to take away the Down syndrome, they wouldn't.

This really struck me. I started to realize Down syndrome must really not…

The Day When A Stranger Recognizes My Son's Down Syndrome

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There will come a day very soon that I am still torn over. I think of this day often, even though I have no idea when it will come. It could be tomorrow. It could be next month. It could be next year. It's the day when someone looks at my son and says "My [insert family member here] has Down syndrome, too!"
It's the day when he is no longer the cute baby in the stroller at the mall, but he is the cute baby with Down syndrome in the stroller at the mall.
I think the day is coming soon. The double-take has started. When I am carrying my son down the hall at his big brother's school, and the moms give us the double take. When people give me the sympathetic smile after they take a good, long look at Henry. I wonder, "Do they know?" And more importantly, "Why do I care?" There is nothing wrong with someone mentioning to me that they know someone with Down syndrome. After all, this is the coolest, most inclusive club I've ever had the awesom…