at the beach

Have you ever noticed how whatever is on your mind suddenly plays out in the world around you with crystal clarity? We've had Down Syndrome on the mind and suddenly it seems like everywhere we go is someone with Down Syndrome.
Today we saw a young man with Downs who had very little hair--it looked like a chemo-treatment sort of hair loss. A couple days ago, we saw a young many with Downs dressed like a little g...beard, sideways hat, big black rapper shirt baggy pants. Each person we've seen has been dressed in clean clothes that seem to be what the parents think is the best look.
One little girl with Downs at the beach caught my attention. I'm not sure how old she was, but she was at least four or five. She wore a great pink strawberry swimsuit and had cute pigtails. I saw her just past the life guard chair sitting face-front on her mom's lap as they joyfully leaned in for kiss after kiss. Her family was a big group--with cousins and aunts and uncles and grandparents. I'm so glad our family gets to share in the joy and pain, triumph and frustration together.
We should do it at the beach. =)

Culture Un-Shock: Validation Station

I shouldn't be so delighted by the annoyance of other people. I have been annoyed by so many things lately, I should have nothing but pity for others suffering in the same way. But I'm delighted.

I don't think I fit the mold of a parent to a child with Downs. So many things seem to bug me, some coming straight from other parents in the same situation. With specialized levels of political correctness facing me in this new society, I've felt doomed to be an outcast, even in the support groups. But there is hope.

I read this article called "You Will Dream New Dreams". This woman went to tons of online forums oriented around different disabilities and asked parents what they liked to hear, and what they didn't like to hear when people were responding to their child. Of the Top Five Worst Responses, three are among my pet peeves.

I'm not the only one who feels this way! I'm not so different after all!

This list brought another important taboo to my attention, too. Even 'positive' stereotypes are negative. Children with Down syndrome are assumed to be happy, extra loving, and joyful. The article says:

I can honestly say that not one day goes by [unless] someone feels compelled to tell me, "They’re such happy and loving children." Well, aren’t all children? One parent wrote, "What about when they’re no longer children? Oh great I’ll have a 35 year old child." Another said, "Yes he smiles, he also has temper tantrums.
He gets happy AND sad. He doesn’t just live in his own little world."

I'm so glad to hear this. Just three days ago, I found myself saying this to a friend: "I've heard children with Down syndrome tend to be so loving and accepting. But I have a hard time imaging a child more loving than Her Nibs. She spontaneously kisses, hugs and proclaims her affection. Sometimes she bursts out jubilantly 'Isn't it wonderful being a family?!'" I just hope Lizard Loaf is as happy and loving as Her Nibs.

Side Note: Since Lizard Loaf is due in October, and we are being optimistic about his health, Her Nibs has already planned our Halloween costumes. She will be Princess Leia, Lizard Loaf will be Luke Skywalker, I will be Queen Amidala, and Turtar will be Darth Vader. We will all have light sabers, too, though I'll have to carry Lizard Loaf's of course.

In Defense of Prenatal Knowledge

I've been asked before why I choose to have an amniocentesis. A few recent experiences have prompted me to post my answer here. (Maybe getting it down in words will help me feel less defensive, too.)

"We just heard the heartbeat for the first time today." This is my co-worker. He was surprised to have an ultrasound at the first appointment, and he did not like the tech. I was trying to be reassuring, not controversial. "Don't worry. They check for tons of different things at the 20 week ultrasound. So, it'll probably be a doctor, not a tech, doing the ultrasound." He was mortified when I told him that some of the things they will look for are markers for Down syndrome. He wasn't mortified by the hard reality that problems might crop up, but by the fact that doctors would look for these things at all. He and his wife would never consider terminating a pregnancy, so what was the point? A tech should be able to determine the gender, right?

Obviously, there's a lot more to an ultrasound that discovering your baby's gender or deciding if you want an abortion. This guy is a novice, and I won't waste time on a post in defense of ultrasounds. But he was also coming down against prenatal diagnostics.

When someone finds out I've decided to have an amniocentesis, he or she often starts to judge right away. There are risks involved with this test: about a 1 in 200 chance of complications. Don't I value the safety of my baby? Was I considering abortion? And if I'm not considering abortion, then there is no reason to have the test, right? What kind of insanity must rule my mind? *sigh* My answers seems simple to me, but I always feels long-winded giving them.

I recognize there are risks with an amnio, but they are nominal. Most of the possible 'complications' are no threat to the baby at all. The amnios I've received were also with experienced doctors in excellent facilities where the risks of complications were significantly reduced.

I could never seriously consider abortion (though 90% of babies with a prenatal diagnosis of Down syndrome are killed). It offends my personal beliefs, and would probably get me excommunicated, to boot.

Beyond that, I've got this crazy notion of knowledge for the sake of knowledge. (Big surprise I ended up married to an historian, right?) Most of my family has a genetic translocation. Distinctly related to our translocation, we have an increased incidence of miscarriage (though it's impossible to quantify heartache) and a history of Down syndrome (5 now between cousins, nieces and Lizard Loaf). If I didn't have this translocation, I would probably never choose to have an amniocentesis. But I do have it, and I want to know.

I want to know if my child has the translocation. Problems may come anyway, but will she be at a higher risk for miscarriage and a child with Down syndrome? Will she want that knowledge when she's older? Genetic testing isn't cheap, and it isn't always covered by insurance (mine wasn't). An amniocentesis is even more expensive, but it is covered. Also, having this information in my medical record instead of hers might be an advantage some day.

I want to know for myself. I knew I had a higher-than-average risk of receiving the very result I got 19 days ago. I've talked to SumGreater about this possibility. I decided that if it happened, I wanted to isolate my grief. I didn't want to feel disappointed with the child in my arms. I don't think I could bear the guilt. I'm not completely past the grief yet, but I know it won't be with me in the delivery room. I'm glad I know.

Context

I just wanted to put Mermaid in context and there was a request for more photos.

Complexify

Complexify is a real word. It's at the top of page 118 in a book called "Difficult Conversations" by a group of smarties from the Harvard Negotiation Project. According to them "complexify" means to recognize that no one is always anything.

Tonight I am having some heartache and tears because every single day my sweet, sweet daughter has Down syndrome and I have no control and no idea what that actually means for the future. I only know what that means right now - today. Tomorrow or next year it might mean something different. This growing realization is teaching me some things about myself that are not attractive. I am proud. I'm thinking we can learn how to help her ourselves and do it without therapists. The poor kid can barely get a 10 minute break before myself or a sibling is working on physical therapy with her. Sure, I can homeschool all my children, what better inclusion program is there? Ha! I can't even get my grocery shopping done this week. Who am I kidding? I'm also recognizing pride in my attitude that if our daughter has disabilities and delays, she's going to be the cutest, smartest, highest functioning person with Down syndrome you ever met. Honestly, Urban Tangerine. Stop being so image oriented, controlling and competitive. Who am I even competing with? I just want to help Mermaid maximize her potential. But maybe...there's too much "I want" in that. "The hardest part of love is the letting go." -Stephen Schwartz. The only guarantee is that she has all our love.

I don't even know if my heartache and tears are for her. Maybe some of them are. I think this internal metamorphosis just hurts a little bit (or a lot) every now and then. I don't always feel one way. I'm so glad Mermaid is here to lay on my chest and blow happy raspberries at me while I weep and wonder. It's complex. I must complexify. Okay, she's just being way too cute right now. I'll have to complexify later.

Where is it?

Tonight Buttercup (who is old enough to pick her own code name), asked me:
"Where is Down syndrome? I mean, where on your body?"
Classic mom response:
"What do you think?"
Buttercup:
"I think it's on your feet"
Me:
"Because Mermaid has a couple of toes that are sort of stuck together?"
Buttercup:
"Yeah."
Buttercup gets to stay up and look at pictures on DS association websites and talk.
Me:
"So, it's kind of funny that people make such a big deal and give it this special name and everything when all these kids are just doing kid stuff, huh?"
Buttercup:
Just gloating about having defied bedtime again. =)

Bananas

I just got back from our appointment and the genetic counselor shared the results with us. He said, "I wasn't sure about her. Sometimes I looked at her and couldn't tell. Her features are not so striking (I knew what he meant), but other times I was thinking maybe she does have Downs. She was fooling us." She's such a tease. Mermaid does indeed have three cute little squishy looking #21 chromosomes where most other children only have two. That's called Trisomy 21 or Downs Syndrome. My Hero said, "We put the 'O' in chrOmOsOme."

Then the geneticist joined us and said Mermaid may or may not have Mosaic Downs, but that really makes no difference because some kids with Downs have fewer limitations than some kids with Mosaic Downs and vice-versa. If we really wanted to pursue it, they would have to take different tissue samples and chase it down. But it wouldn't change the prognosis. They had only ordered the "Fish 21" in case the extra chromosome didn't show up in the original karyotype (blood test). We set up an EKG and echocardiogram and we'll meet with an opthomalogist. We spent the rest of the time talking about early intervention which generally consists of physical therapy, occupational therapy (I don't know what that means, yet) and speech therapy. They also gifted us a book, "Babies with Down Syndrome; A New Parents' Guide." Free books, definitely a benefit. All of these regular appointments will alter our freestyle life, but a little structure could be a good thing.

One thing I really appreciated was that the geneticist always referred to "children with Downs"; never "Downs children." I've been doing that, too because I feel that the person comes first. Now, that I've read Plainbellied's post, I know it's the protocol in the communities of people who love and care for children with Downs.

I guess we'll be visiting the geneticist every year moving forward, as well as the opthamologist and probably an audiologist. New friends; benefit. The four year old girl with Downs our geneticist met with before us could read and was starting to write. She carried on conversations with them, etc. My 6.5 year old still doesn't read. We'll just watch and see what Mermaid has in store for us.

Lastly, I asked about sibling workshops or something to address the needs and concerns of our other children. The counselor said, "Oh, they're going to be bananas about her! Children with Downs are so social and funny. They love music and dancing. They'll be just bananas for her!" Of course, we all are!

Culture Shock

Yesterday we met with an amazingly sweet woman from the local Down Syndrome support group. She is fabulous. When she first called, we weren't home, so she left a message saying she didn't know where we were emotionally, but that if we wanted, we could come to the pool party that night. (Extra parties?! Definite bonus!) We opted for meeting privately first and learned a lot.

I knew this would be a challenge, a journey, a transition, but for some reason, I was taken off guard by a completely unique culture. Here are some of the things I learned that surprised me:

Mongolian Idiot. This used to be the psychological classification for Down Syndrome. Mongoloid or Mongolian refers to the tendency toward slanted eyes. Idiot was the classification for the mental retardation. Wow. Once again--so glad to be here in my decade instead of 30 years ago.

Delayed. This is the preferred term. Over retardation or mentally handicapped, the preferred expression is to say that the person is developmentally delayed. This has more to do with the stigma of 'retarded' and the negative associations it brings rather than it being an inaccurate term.

Downs Child.  As in "This is our Downs child/baby". That is a big no-no. The woman who spoke with us admitted her husband still says that sometimes, though their daughter with Down syndrome is grown-up and attending beauty school. (I can't actually imagine introducing Lizard Loaf to anyone that way.) I guess the reason this is a problem is because it defines the child by the disability. As it says in all of the literature, a baby is a baby first. And, a person is a person first. I wonder if it would bother me if someone introduced me as their Clumsy friend, or their Non-athletic cousin--defining me by my greatest weaknesses and struggles, rather than my strengths. I think it would. I'm new to this culture, but the shortening of Down Syndrome to Downs doesn't bother me right now, as in 'my son has been diagnosed with Downs' instead of writing the whole thing out every time.

There are a few attitudes that have also startled me, all with surprising religious roots. These didn't come from the support group information, and I don't know if these attitudes are common in this new culture or isolated to the people expressing them, or perhaps common among Mormons, and less so among the general population. I hope I don't offend anyone by highlighting these.

• This comes from the mother of a child with Down Syndrome, relayed through a friend: "It will be interesting when we get to Heaven and we all get Down syndrome because that is how it is to be perfect." Wow. That really took me off guard. It never occurred to me that anyone would think that way. For myself, I tend more towards Urban Tangerine's perspective that this is temporary struggle. In the next life, my son will be made whole. As I understand it, people with Down syndrome tend to be naturally loving. I've heard they are more unconditional in their love, the way our Savior would have us be. Developing charity is vital, but I don't think that is the only part of perfection. I also don't think we are made perfect automatically in the next life. We still have to struggle towards it from wherever we left off in this life.

• I've heard this attitude enough that I won't attribute it to any one person. The general idea is that people born with Down Syndrome must have been especially valiant spirits before they came to this life. That's why they were given Down Syndrome and guaranteed salvation. I know that even among my sisters, we don't have a consensus on this point. While I found nothing about this when searching through articles on LDS.org, my personal feeling is that the challenges we receive in this life are not a reflection of God's judgment. It may be that a particular child was given Down Syndrome, or died young, or any number of things that would guarantee his or her salvation, because of this very reason. I believe parents may have inspiration on this point for their particular child, but I don't think we can know universally why these sorts of challenges occur.

• In conjunction with the previous attitude, I've also found prevalent the idea that parents of a child with Down Syndrome are superior. Again, I think the challenges we receive in this life are not a reflection of God's judgment, but that we will be judged after the trial. I feel very strongly that Heavenly Father knows my family, including my son, and our situation. In fact, over two years ago, I had the impression that I was going to have twins, that one would be a boy, one would be a girl, and that the boy would have Down syndrome. But then, I proceeded to have three miscarriages, so I let go of those impressions. They have started to seem relevant again (though still no sign of twins...). I take great comfort in knowing Heavenly father is aware of our situation. We will do our best to provide a loving home for our son, and help him prosper (just as we do for our daughter). But I don't personally feel that receiving this challenge as a parent indicates that I'm 'more righteous'. Neither do I feel that this is bad karma coming back to bite me.

Hello worry & anxiety

Last night, checking messages, I realized I had missed a call from our geneticist. They have our test results and can meet with us today at 1 p.m.. I just called to confirm the appointment. How do I feel? Hollowed out and off balance. I don't know what they will say. The unknown and unexpected frighten me a little. What kind of Downs will Mermaid have? Any thyroid problems? luekemia? Deep breath. But, later this afternoon we will know and we will start to plant some expectations and that will feel more comfortable, right?

Responding

I've learned a good lesson in responding. When I sent the 'big news,' I was really anxious to hear back from people within a day or two. This felt HUGE to me and I wanted to share and be heard. Surprisingly, I got the most responses from friends rather than family members. Most of our family still hasn't responded in any way (obviously, some have and we have this lovely blog to chronicle our journey). I learned that it felt really good to be acknowledged and to receive a little encouragement, even just one or two lines. I'm trying to be more responsive to others because of this. One friend of mine has a line at the bottom of her emails; "Love is always the appropriate response." I have found that to be true.

Mermaid's Announcement

This is what we sent out to our friends and family once we got new info on Mermaid.
(Code names: our daughter, Mermaid; my husband, My Hero)

Hi Everyone,

It's a gorgeous day! Many of you know that we've been concerned that Mermaid may have Downs Syndrome. Today, we had an excellent visit with a pediatric geneticist. Get this name, Kawame Anyane-Yeboa. Wow! Our genetic counselor was Edwin Guzman. That was a little easier to say. Anyway, after filling out our family medical history chart and discussing our concerns about Mermaid, they examined her. She was a total charmer, of course! I've been reading up on this so I was listening for clues. They noted slanted eyes, depressed nasal bridge, tendency to stick out her tongue, soft silky hair (What?! I never read about that sign. I guess that's a benefit), shorter curved pinky and hypotonia (low muscle tone).

Then came the big talk. They said, many of the classic markers for Downs Syndrome are not found in Mermaid and though her muscle tone is on the low end of the spectrum she's actually doing really well (she rolls over, brings her feet to her face, stands and bears her body weight, etc.). She also gurgles and hums to me. She makes signs to me about what noises to make for her (I'm the dolphin, she's the trainer). She smiles, laughs, etc. So.... They ordered a blood test for Downs Syndrome and a "Fish 21" that's industry-speak for checking for Mosiac Downs. They're also running a thyroid check. I didn't really get that part. The upshot is that they feel certain that Mermaid is out of the ordinary. We already knew she was extraordinary. But they're not sure exactly what it is yet, so we're gathering information. It will be 2-3 weeks before we have results and get to discuss them.

I've been learning about this for some time. Sometimes a little paranoia is a good thing. ;) My Hero prefers to wait for facts and then get a life perspective. Once we know what we're dealing with, we'll seek out other families in similar situations and learn from them. He says we'll all get matching T-shirts that say "We're down with Downs!" He's so fantastic and ready to embrace whatever life has in store. I'm sure we'll meet several medical professionals along the way as well.

For now, our family is pretty much the same. It's a relief to know a little more and digest this new information incrementally. I know Mermaid is important to you and I wanted you to have a chance to digest the information incrementally, too. Sure, we wish Mermaid laughed more often and had stronger muscles, but hey, she's got that soft, silky hair ;) We're really so happy to have her in our family and we just couldn't do without her. We feel especially grateful to have enjoyed such a remarkable home birth experience which allowed all of us to fall completely in love with her before worrying about labels and secondary (and I might add, temporary) issues. We have already been so richly blessed by her presence and we're sure the future holds more of the same.

Love,

Us

Our Intro

I'm happy SumGreater created this blog. She's always so supportive and definitely one of those siblings that keeps our family connected. Thanks SumGreater.

Our family had four sisters and there came a time when we all wore the same size of socks. So, our brilliant mother decided to keep all of the socks in a box and we could just share. As the oldest daughter, I was uncertain what to do when it came time to leave for college. Which socks were mine? How many pairs should I take with me? Will the others be upset if I take the "good" pairs? At any rate, I think it hasn't been since the sock-box that I've shared something with my sisters, so this will be fun.

There is something that I don't share with my sisters and that is the genetic anomaly called translocation. I was tested in 2004 and given and 80% chance of having it, too. I don't have it. Nevertheless, after we welcomed our sweet baby number five and after some time and some worry we finally visited a geneticist. We're still waiting for the blood work, but they've let us know she's "abnormal." That was actually a relief because I could stop worrying if something was wrong. Yes! Something was wrong and now some of the nation's top professionals are going to help us out moving forward.

Stay tuned.

Panic 3.0

There was the panic of thinking I'd never have more than one child. Then came the panic of wondering if I could handle more than one child. (I don't think I ever came to terms with that--just forgot about it for a while.) Tonight, a new level of panic hit...

BACK STORY:

Her Nibs likes me to put her to bed when I can, since I often work 4 nights a week. Tonight, I was off, so I helped her shower off the day's dirt (her first shower 'by herself'!), read her stories and brushed her teeth. The teeth. I know this is important, but it is by far the most dreaded portion of the bedtime routine. It should take 2 minutes-maybe 5 tops. With Her Nibs, between spitting extra times, pausing to check in the mirror, wiping her mouth as we go along instead of just at the end, or just breaking into dance, it rarely happens in under 10. Tonight, as usual I'm afraid, I found myself saying "Focus! Let's just finish brushing!" "No. You have to keep your mouth OPEN." "Open AND facing me, please." "Just stop moving so we can get this done." There was definitely a "RINSE! DON'T DRINK! You're not suppose to swallow toothpaste, honey." And there may very well have been more. What's worse, I know my hurry and frustration come from totally selfish motivations like "I want you in bed as soon as possible so that I can be 'off the clock'" instead of any genuine concern for her well-being.

Her Nibs is so very loving, and also extremely bright and creative. If I don't have enough patience for her, how can I ever have the patience I need for a son who will, in all likely-hood, move even slower than her?

The News

I got the news over the phone from a genetic counselor. It had been 16 days since my amnio. I was starting wonder if they forgot to do anything with all that amniotic fluid they took so painfully from my belly, so I'd been calling throughout the day to see if the results were in. As it turned out, they weren't stalling. The genetic counselor had just called the lab because she felt the results were taking a long time, too. The test had actually only been completed the night before. I was expecting mostly good news, like we'd received for my daughter (codename: Her Nibs). Her Nibs has a translocation, but it is balanced, and she is otherwise healthy. When the genetic counselor said she had the results and that they weren't good, I still didn't completely understand. Then she explained that our boy (current codename: Lizard Loaf) has the translocation and an extra chromosome 21. "He is predicted to have Down Syndrome," she said. I know I wasn't on the phone for very long after that, and I was grateful Her Nibs was distracted by a movie, or the Disney Channel or something. Right then, I only kept crying for a few minutes. I pulled myself together until my husband came home, when I gave him the news. That's when the wording started to seem significant. "Predicted." Could Down Syndrome be a prediction like the weather? Slightly translocated with a chance of Downs? Everyone was gone for the night, so clarifications would have to wait nearly 24 hours. Unfortunately, 'predicted' was just a misguided attempt to soften the blow. Lizard Loaf does have Down Syndrome. This is not a false positive. These are the correct test results, and lots of other terrifying things like pediatric cardiologist and echo-cardiogram.

I was devastated. Thank goodness the Celtics won that night, or it would have really been a bad day.

So, I've been processing this news for nearly a week now. Some days I cry a lot, but mostly I'm on a positive path. But now, how do I tell everyone else? It was only 3 weeks ago that we announced to our world-wide network of friends that I was pregnant and expecting a boy. That part really hasn't changed, but still: things aren't the same. I did multiple Google searches on variations of "announcing your child has down syndrome," trying to unearth some existing etiquette or guideline. Nothing. Maybe we shouldn't say anything at all, and just throw it in with the birth announcement when Lizard Loaf actually arrives? I'd already read too much on BeNotAfriad.net to really do that. When we are rejoicing in the blessing of another very long awaited child, the last thing I want to hear is "I am so, so sorry." But of course, I did have some guidelines. Two of my sisters had already sent similar messages. After working on the email for days now, I finally opted for quoting one of my sisters for a portion of the email. I'm actually still not done composing the message, but I got it far enough along to send it to a few important people (like my mother) who I felt should have the news soon. This is basically what I sent:

We already knew it was a boy; now we know something more. We recently learned that our baby boy, due in October, has Down Syndrome. It is hard news to hear. There is no question that this will be a challenging journey for our family, but we are letting go of generic hopes and embracing new possibilities. As our expectations for our son grow from obscure to intimate, our love for him deepens.

As we do with every new adventure we face, we're scouring the web to learn all we can. We've discovered some amazing resources, both for us and our son. (Sometimes, the Internet can be so full of love.) There is a huge range of health and ability among people with Down Syndrome, and it will likely be years before we can tell where our son is on that spectrum. As my sister said recently, "It's a relief to know a little more and digest this new information incrementally. ... I wanted you to have a chance to digest the information incrementally, too."

Several years ago, SumGreater, gave birth to a little girl with Down Syndrome. Due to complications from the pregnancy, her daughter passed away after only 9 days. On the same day we learned 'something more' about our son, we found out that one of my other sister's 6-month old daughter may also have a form of Down Syndrome. Would you ever have believed three sisters in one family with children that have Down Syndrome? A circumstance like that deserves its own blog: http://imdownwithdowns.blogspot.com/

Getting Started

Several years ago, I gave birth to a very sweet baby girl. We learned the day she was born that she probably had Down Syndrome. Five days later, we knew for sure she did. She was so frail because of complications from my pregnancy that she died 9 days after birth. So, the fact that she had Down Syndrome went into our mental periphery.
We tried to teach our son sign language, telling him that if his sister had lived, it would've helped her communicate better. Whenever I see a person with mental challenges or Down Syndrome in particular, I think of our little girl and want to be extra kind--how I would have wanted someone to treat my daughter.
That was where things stood until last week.
In one week, two of my sisters each learned that one of their children has Down Syndrome. My older sister found out her 6 month old daughter likely has what is called Mosaic Down Syndrome. My younger sister learned through amniocentesis that the baby boy she is carrying also has Down Syndrome.
They are both going through periods of altered expectations and emotional adjustments. And they both love their babies very much.
My older sister's husband suggested the family get matching shirts that say, "I'm down with Downs" and I liked the idea so much, I set up this blog using that phrase. My sisters are both authors on this site and will be chronicling their individual journeys in this shared experience.