Rewind

If I could rewind that moment everything would be softer than home, crispy sheets, coffee sitting in the sunshine.  Light, fresh air, warmth, and comfort would replace the sterile smell of the hospital, erase the inexperienced nurse. I would scoop him up right away when I saw how stunned he was by being born. I would hold his warm skin next to mine and listen to his heart struggle to beat, giving it my rhythm to learn from. Then we would sleep feeling sure of our world — letting all that lay ahead of us lie flat in the palm of whatever held us at that moment.

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Conversation

down syndrome, down syndrome conversation“Mom, c’mere.”

“What Will?”  I responded, thinking, I am here, but knowing that I am not there unless I was looking right at him.

“Mom.”

“Will, I am listening.  I cannot take my eyes off the road.  Go ahead.”

“Talkies for Rich?”

“You’re going to use them with Mr. Solito?”

“No. Not.”

“Are you talking about the Walkie-talkies?”

“Ya.  With Rich?”

“What? Are you going to take them to Edmunds with you?”

“No, No, No.”

“When are you going to use them?”

“Rich …”

“Does Rich have a set of Walkie Talkies?”

“No, a radio.”

“You want a radio to go along with the Walkie Talkies?”

“Yah.”

“Does Rich have a radio?”

“No.”

“But you need one?”

“Ya.”

“So you can radio to him when you go to work?”

“No.”

Are you going to show him your Walkie Talkies today?”

“Mom,” he said signaling the end of the conversation.

I continued driving.  I wonder what he was trying to tell me.

 

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Misconceptions vs Reality

This link might be helpful for those who don’t know much about Down syndrome. It is short, to the point and straightforward. Knowing this information will eliminate some stereotypes and myths about Down syndrome.

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Rewind

William was born at 8:30 in the morning. If I could rewind that moment everything would be softer than home, crispy sheets, coffee sitting in the sunshine.  Light, fresh air, warmth, and comfort would replace the sterile smell of the hospital, erase the inexperienced nurse. I would scoop him up right away when I saw how stunned he was by being born. I would hold his warm skin next to mine and listen to his heart struggle to beat, giving it my rhythm to learn from. Then we would sleep feeling sure of our world — letting all that lay ahead of us lie flat in the palm of whatever held us at that moment.

 

View of North Pack from Plowshare Farm, Greenfield, NH, where William lives.

Photo courtesy of Kay Kinderman

 

 

 

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Choice

Years ago, a friend of mine told me that her son had found out that he was going to have a child with Down Syndrome. She wanted to talk with me, to prepare. She had already named the child. She was open and accepting. I was excited for her and her new grandson. She wanted to know what it was like. What could she do?

Then she mentioned that her son and daughter-in-law were not sure if they were going to keep the baby. They were weighing their options. They hadn’t made the choice.

I couldn’t give them William. I couldn’t share the challenges and the joys of raising him. I couldn’t share my wisdom. I couldn’t sway them one way or the other. I could only share my friend’s  joy at the prospect of having a grandson who also had an extra chromosome. It was because she knew William that she was with me at that moment.

I told her I believed in choice. Yes, there is a GIANT but in there. I didn’t know that William had Down Syndrome when he was in utero. I am grateful that I didn’t because honestly, I do not know what I would have done in my ignorance.

I did have amniocentesis with my second child. I had amniocentesis with my third child -Sam- he miscarried as a result. That was a loss that was hard to bear because I had made the wrong choice. When I was pregnant with my last child, I did not take the test.

I didn’t hear from my friend for a long time. When I ran into her at the recycling center, I already knew the answer to my question, but I asked it anyway to make it real. And when she confirmed the choice that her son and her daughter-in-law made, I didn’t begrudge them of their decision, that’s not my place. People have the right to make that choice.

It was the loss – the profound loss of something so beyond my reach that I still cannot let it go.

 

 

 

 

 

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Family

The Down Syndrome Convention

I remember going to the Down Syndrome Convention when William was probably less than a year old. We met up with our old hospital friends — Nathan and William had had open heart surgery at around the same time. It like a giant reunion. We all shared pieces of the same experience that involve raising someone unique.

Speaking the same culture

I live in Asia now, and it is rare that I see other Americans, everyone here speaks English, some wear western clothing, but it’s not the same as being in the good ole USA eating hamburgers, stepping off of even sidewalks, knowing that the cars will stop if a pedestrian steps in front of them, or simply understanding the language. Every once in a while, I long to be with my people — to speak the same culture.

A cool and comfortable secret

Going to the Down Syndrome Convention, meant entering our separate culture for a day. A culture where no one did a double-take when William spoke, walked, flapped his hands or simply was. It was a culture where we were not unique because we had a son with Down syndrome. We all just shared this incredibly cool and comfortable secret about living  life.

What is heterogeneity anyway?

I am probably breaking all the rules here by advocating that we be homogeneous every once in a while, but let’s be honest. There are times when it is just nice to settle in with your own kind. It’s like coming home to your family.  What is heterogeneity anyway? Who defines it? Can a culture be homogeneous if the sameness is that we are all human?

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Rights, Instinct and Murk

Calculus

I was not a parent who fought for William’s right to take advanced calculus with all of the honors students. In fact, when my daughter moaned that she had to take advanced calculus, I asked her who told her that she had to take it. After a discussion, she realized that she didn’t have to take it, so she didn’t. I do not advocate for people to take classes that they have no business or desire to be in. Certainly, people have the right to take any class that they want, but at some point, you need to decide if you are fighting to make a point or for what is truly necessary.

What about the other 20%

In a lot of ways, William had a better public education than his sisters, who were invisible in public school. He had an individualized education plan; he had one person working with him every day to help him meet his goals; he had his own ride to school, and he was popular. Sure, he had to do stupid things like taking the New Hampshire Standardized test (no joke) and prove to the state every three years that, yes, he still had Down syndrome. Once teacher wanted to put a goal in his IEP that he would independently cross the street 80% of the time (I did die on that hill to get rid of that one).

The point is that he had it pretty good.

I surprise myself with that statement. I would not have said that 20 years ago when I was in the midst of the struggle to get the best for him.

Murk

William is my first child. From the time of his birth, either a doctor (William was born with a complete AV canal defect and a coarctation of his aorta), a social worker or an educator was involved in navigating William’s life. I ran myself ragged doing everything they told me to do. I bought all of the toys the early interventionist told me to buy, and I took them to Children’s Hospital to dangle over his crib. I nursed him around the clock even though he didn’t have the strength to do that (and neither did I).  When he entered the school system, I assumed that teachers would guide me. Things got murky when I realized that I knew a lot more than they did about raising William.

Rubber gloves

I survived IEP meetings when people were determined to make him “normal.” It may have been the “aid” who wore rubber gloves when she was with William who unleashed that niggling pain in my heart to make me realize that something was terribly wrong.

I seemed to have put more faith in the system than I did in my own instincts.

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Is this ironic?


When I Googled my website
, I was found this article from the New York Times. When I read the first paragraph, I almost immediately renamed my site. It is hard to share anything with an article that starts that way, but it sparked to thoughts (and one other that I might save for another blog about choice).

The first thing that hops out at me is the word suffer. The definition of suffering is to experience or be subjected to something bad or unpleasant.  When William and I lived in the hospital for his complete AV canal defect and aorta repairs, I would agree that we were both subjected to something bad and unpleasant.  I just can’t wrap my head around the comment that someone suffers more than another because of the type of child they have. William and I know many friends who would take offense at the concept of the Down syndrome Effect, which suggests that the well-being of  families who have members in them with Down syndrome are better off than those who have, say autism.  How do scientists come up with that stuff?

It does bring to mind a funny story, though.  Once a friend of mine was talking to me about how intense it was for our mutual friend to raise her son. Boy did I agree, and I went on about how hard it must be, how challenging to not have a diagnosis, how challenging some of his mannerisms were. Wow! what an incredible woman she is to face the challenges of motherhood the way she does. It was when I said I could never do what she did, that I realized that my friend was staring at me with her mouth agape. Here I was the mother of William, spouting of praises to someone who, in her eyes was doing just what I was doing, maybe more, maybe less.

I forgot. I sometimes forget that William has Down syndrome. I am no heroine; I am just your average mom. Having William does not make me a superstar.

The truth in the New York Times article is miles away from my truth, but it reminds me why people’s impressions of others are often askew. I would never have found that article if I hadn’t named my blog The Truth Down Syndrome. The only reason why the domain name isn’t The Truth About William is because I thought putting Down syndrome in the title would bring more traffic to my site.

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Following Footsteps


Reminder

I would love to think that this blog is not necessary. That having a son with Down syndrome is not a big deal anymore. No struggle. It’s just like having any other child. I would like to believe that, but just yesterday, I was reminded by a co-worker that people haven’t changed much.

william-and-dad-st-johnWhy do they need to know?

At this stage in my life, people don’t need to know that I have a son with Down syndrome, and I do not see the need to point it out. I have three thriving children: a daughter working in New York City for a charter school and business, another daughter who just moved to Arizona to be
a nurse and a son who works on a farm. Why should I tell them that William has Down syndrome? I don’t know, but it always comes up.

Expectation

When William and I lived together I was used to it. I almost expected it. A typical example goes like this. When William was at the age where most kids get braces, I took him to the orthodontist. His sister, who was already wearing braces had started her treatment the year before, and William’s dentist suggested that the same orthodontist should take a look at William, whose teeth are quite crooked.

This orthodontist had treated William’s sister, so I knew what to expect. When I asked about getting molds taken of William’s teeth, the nurse said, we will skip that. I asked her why. She responded with, They don’t like that. Those of you without a child who is slightly different may wonder who They are. It registered immediately with me.

What I should have said

If I had been the perfect advocate for people with Down syndrome, I would have had some empathy for this nurse, who was ignorant about the world. I would have said, it goes like this: everyone is his or her own person. Some people have straight teeth, some people have crooked teeth, and some people don’t have any teeth at all, but all of these people are their own person. It is the same with children, some have red hair, some have brown hair, some are big, some are little, some can talk and walk, and some can’t, but they are all their own person. People who look alike, don’t always react to things the same way. Then she would have understood that not all people with Down syndrome have a sensitivity when it comes to having molds taken of their teeth.

What I said instead

Instead, I said, when his sister got braces you never said that They with red hair don’t like getting the mold; therefore, we won’t take a mold for her. I assume that the They you refer to here is anyone who has Down syndrome. I might even know the one person who didn’t like getting the mold who happens to look a lot like William. (There were only two people Will’s age living in the town who had Down Syndrome at the time.). He also loves cottage cheese and apple sauce and William hates it. Does that mean that everyone that looks like William loves cottage cheese and apple sauce?

She didn’t get it, so we went to an orthodontist who did.

Not a thing of the past

I would love to think that stories like that are in the past. I have been working in Malaysia for about a year, so people do not see me as William’s mom anymore. Here I am a single woman who writes and works in a cubicle just as they do. I am a private person, so people don’t know about me unless they ask.

Yesterday, we were discussing our president-elect and I mentioned a worry about what kind of impact the election would have on William’s funding, which is always a concern of mine. One of my co-workers was much more interested in the fact that William has Down Syndrome than he was about the repercussions of the election. He immediately wanted to see pictures. I was glad to show him all of my three children because they are all so beautiful, but he just wanted to see William, my beautiful William. And I did what I always do, I showed him pictures of my son, but I knew that he was not looking at him the way that I do. I knew that he wasn’t looking at him the same way as he was looking at pictures of my daughter.

Because they do.

I tell this story because this is just the way it is. I know it is my responsibility to educate people about those who have Down Syndrome, so it is easier for the next person who has to follow in William’s footsteps, but that doesn’t mean it doesn’t get under my skin.

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