Our Kids Rock

Mermaid Birthday

Shout out to Mermaid. My little one is one! My camera batter is dead, but when Grandma sends her shots, I'll upload.
Happy Birthday, M. Thanks for an amazing year of growth for all of us.

So Thankful

I'm completely overwhelmed, but I'm still alive. My bathrooms haven't been cleaned in 2 months and my shelves are dusty enough to make even me cringe, and I get new medical bills pretty much every week. I'm baffled by the medicaid application I'm trying to fill out, way behind in getting my home-made Christmas stuff put together, and usually end up letting my daughter watch about 4 hours of TV a day. I was below my pre-pregnancy weight two weeks after birth, but now I'm gaining again. I'm trying to figure out how long I can get by wearing just one pair of pants and a nursing bra that has to be pinned to fit properly. Even so, whenever anyone asks how I'm doing I can't help but smile and say "Wonderful!" I'm so happy to have LL for my son. I'm so happy to have Her Nibs for my daughter. And marrying Turtar was definitely the best thing I've ever done in my life.

LL came off oxygen a week ago and finally met Mermaid face to face at Thanksgiving (pictures to follow :D). He has hypothyroidism, but there's a pill for that. Other than needing his blood drawn periodically to check his TSH levels, it doesn't seem like a very big deal. We're still dealing with eating issues (thickening milk to prevent aspiration, supporting his cheeks, trying to get him to eat enough...), constipation, and hemorrhoids, but today he passed his hearing exam!!! Finally. He has normal hearing. Hurrah!

Eventually I'll find my center, but for now I flip between 'brink of disaster' and total elation. Usually the elation wins out, so that's okay by me.

Progress Report

It's that time of year when the first marks of the school year are out for all my older children and Mermaid has been working hard to learn new skills also. She's so close to sitting unassisted that swinging has become fun. She made a grrrreat tiger for Halloween. She's starting to distinguish her Mama from the rest. She still loves her thumb, but is starting to watch her hands waving mid-line quite a bit as well. Her physical therapist loves to have her standing or in a quadruped position. The occupational therapist loves to see her grabbing and focusing. And the speech therapist is thrilled with the variety of facial responses she is demonstrating. For me...I started with Mermaid. Then I had Mermaid with Downs. Now, it's just Mermaid again. Sure, she's got strawberry blond hair, impossibly blue eyes and Downs. It's just one of those things. What really makes her special is the precious soul inside. I love this girl!

Pictures

Home, Sweet Home

We're home now. Hurrah! That CT scan threw us off in the wrong direction for a while. It looked like one of Lizard Loaf's arteries was compressing his trachea. They wanted to do a scope down his throat to check it out. That would have meant general anesthesia. And if it was doing what they thought, he would need surgery on the artery to pull it out of the way.

Fortunately, our expansive team of experts was able to figure things out. Where it looked like Lizard Loaf wasn't fully expanding his lungs to most of the doctors, the lung doctors could tell that he had fluid in his lungs. The cardiologist also said, separately, that it didn't look like the artery was causing a problem. The ENT gang backed off on the bronchial scope. At this point, Lizard Loaf had been cleared of all infections and was just in the hospital because he needed to be on oxygen. The big question became: How did the fluid get there?

Our amazing pediatrician recommended a swallow test. This means enriching Lizard Loaf's bottle with barium and taking a video x-ray. As it turns out, he has been breathing in some milk when he eats. He has a delayed swallow, which means he sucks in the milk, but doesn't start to swallow at the same time. So, some of the milk falls down his open airway. The answer is relatively simple. We need to thicken his milk with some rice cereal. This will give him better control of the fluid when he's swallowing, and also, as I understand it, make the particles to big to get all the way down to his lungs. Meanwhile, he's on oxygen, which is not as much of a hassle as I thought it would be, and we are treating him with chest claps to help the fluid get out of his lungs. We hope it all works. It's a low-tech operation. We're trying to find a good nipple for his bottles that let the thicker liquid through easily without gushing out so much that he can't control it. Turtar and I received different training on how to do the chest claps, and that concerns me. Besides, it seems a little funny that clapping a cupped hand on your baby's chest in certain ways for 12 minutes in the morning and at night will get fluid out of his lungs. Here's where I defer to the experts again. We see the lung doctors in two weeks, and we hope we can get rid of the oxygen tube. We hope that this aspiration problem is the only cause of the fluid in his lungs and that we have the final solution already.

We are enjoying a quiet weekend at home right now, just enjoying the size and rhythm of our newly expanded family. A few days ago I had what might be a generic epiphany. Down syndrome is LL's burden, not mine. I think that before I may actually have been crying for myself, thinking about my own hardships. (How selfish am I?!) At the hospital while I held him, I just cried and mourned all the extra burdens he already has in this life, all the stumbling blocks he's faced and will face. I know that his soul is eternal, and Down syndrome is not. I know that in this life, we will cherish and love him, but I'm anxious to meet him in the next life when he has been freed of these burdens.

Turtar and I have also chosen his theme song: "Workin' Them Angels" from the Snakes & Arrows album by Rush. Here's the chorus:

All my life

I've been workin' them angels overtime

Riding and driving and living

So close to the edge

Workin' them angels - Overtime

There and Back Again

Our baby boy is finally here! Turtar is working on a new codename, but we'll keep calling him Lizard Loaf for now. Nervous mother that I am, I decided to be induced at 39 weeks. Everything went great, and he was born 5 hours after we arrived at the hospital for the induction. Other than being a little jaundiced, he seemed perfectly healthy. We went home on day two and drank Martinelli's with every meal.

A day and half later, we were back at the hospital. I noticed he felt cold around 4:00 am when I fed him. A call to the doctor led to a visit to the ER. Fortunately, we live 15 minutes away from a rock-awesome children's hospital. They don't take chances, especially with newborns. It did kind of freak us out, though, when someone actually met us outside, rushed Lizard Loaf and myself back to a room while Turtar checked in, and started a battery of tests. Oh, and we had about 6 nurses and doctors all crowded around him. Later, we had fewer. We found out nothing had been happening in the Children's ER for the past 2 hours. We were all the action.

Apparently, low body temperature is just as significant as a fever, and possibly even more so. We expect a fever to develop to fight an infection or virus of some sort. With a low body temperature, the body might be so weak it can't even mount a fever; it can't even fight. That's one option. It could also be caused by just about anything. Best case scenario: He is a sleepy baby. He didn't eat well. So, he didn't flush out his jaundice, and he gets sleepier. He eats less, etc., and becomes dehydrated. Dehydration could cause the body temperature to drop. Worst case scenario: Meningitis (I think). Lizard Loaf was very dehydrated. The doctors said he would have been admitted to the hospital just for that reason. But, meningitis can be fatal, so they aren't going to settle for just an IV when the problem could be so much bigger.

I can't even keep track of all the tests he's had, all the results from the tests, and what the possible meanings of those results are. He was placed under a heat lamp right away. They took his blood, which is very sad and difficult by itself (he has my veins; we're stingy with our bodily fluids). They put in an IV, also next to impossible, and had to strap it place. It takes up almost all of his forearm and looks like he's wielding a brick. They attached leeds for heart rate and temperature. They taped something else (first to his foot, then his forehead, then his hand, then back to his foot) to measure his oxygen levels. His oxygen levels were low, so they put him on oxygen. They did a spinal tap so they could test his spinal fluid for infection. He was so dehydrated, it an hour just to drip enough spinal fluid into the little test tubes to run the test. They didn't have enough blood for his tests, so they had to take his blood again. The IV was set up to be used for a blood draw, too, but that wasn't actually possible, so they had to stick him again.... and again and again. They ER nurses blew at least 2 veins before they got blood, and it was coming too slowly, so they had to start that one over again and suction the blood from his veins. It was a very rough morning, to put it gently.

For now, his body temperature is holding steady. He is eating much, much better. At one point, he ate 60 ml at once where he had been eating 10 ml at a time. Mostly, he's been in the 25-40 ml range today. He is peeing and pooping well, which is flushing out the jaundice. They have been able to reduce his fluids. He's had to have blood drawn several more times, but the tech seemed more capable. At least he didn't blow any veins, though he still had to suction the blood. And the last blood test was just a foot prick. They have tried taking him back off oxygen, but his levels drop when they do. So, they x-rayed his lungs. They called the x-ray 'abnormal'. They wanted to get a better look at his trachea, so they put a scope down his nose this morning. They still couldn't see what they wanted, so they did a CT scan. We haven't heard back on that yet.

Other tidbits: His thyroid levels were slightly elevated, as is his red blood cell count. His hepatitis test came back negative, so they took him off that medicine. We saw an speech pathologist today who watched him eat. He swallows well, and sucks well, but does have trouble maintaining his seal, which means poor efficiency. He needs 'cheek support'. (As if I needed incentive to squeeze his cute little cheeks!) This is apparently really normal. When the speech pathologist mentioned this ('cheek support') to the nurse, she said, 'Oh. Okay.' So, I squeeze his cheeks in a little when I'm feeding him to keep the seal on the sides. We also saw some ENT guys (three of them... this is a teaching hospital); they are the ones looking at the trachea. Well, everyone seems to be looking at his trachea. First the pediatrician wanted to see it, but he had to look at with a radiologist, and then they showed it to the ENT guys. I guess it's another radiologist that will look at the CT scan, as well as the ENT guys and the pediatrician.

Tomorrow, he will have been on antibiotics for 48 hours. We hope by then to have ruled out the other major infections and to be going home. Hopefully, he'll be cleared and cured completely. Maybe there will still be some problems that need to be tended, but without staying over. But, will they have uncovered something else that will require extending his stay? How much do the red blood cell count and thyroid levels matter? What is the deal with his trachea? Why is he needing oxygen at all? We'll all stay tuned...

And I promise pictures another time. He is abnormally beautiful. And I did a full face of make-up before I went in to be induced, so I'm not even that embarrassed by the pictures of me. Soon, I promise. For now, there are two pictures of Lizard Loaf on this blog.

Acclimating

The medicine is called Vigabitrin or Sabril. It's time to learn the name since Mermaid will be taking it for about 6 months. it comes in a little foil pouch and I mix it with a little water each day to dose Mermaid morning and night. It's only good for 24 hours. She has been taking increasing dosages of Vigabitrin while tapering off of ACTH. But even the miracle drug from Canada has it's downside. Mermaid has had a lot of rapid eye and head movement. She seemed confused. She forgot how to nurse...surely she couldn't have lost her appetite. Eating was really the only skill she had left on track.

She wouldn't respond to the breast, but could manage the bottle. That's how I know she only drank 3 oz. in about a day. Her neuologist told me to hot foot it over to her pediatrician to see if Mermaid needed hospitalization again. Fortunately, she didn't look "septic" or "toxic." Their words. The took her glucose. Tested her urine and tried 4 times for blood, but came up dry. Mermaid wouldn't give them anything. It's probably because she was dehydrated. Mermaid didn't cry at all. She just grunted once or twice and almost fell asleep as the various nurses and doctors all tried their hands at a needle search for veins beneath her chubbiness. It's just not natural to be so accustomed to poking and pain. I'm sad for her acclimation.

Ultimately, Mermaid perked up, nursed and her Vigabitrin dosage was cut in half. She has continued to nurse, but doesn't cry if she's hungry, so I have to think of it. I know I'm not currently producing enough for her and last night she accepted an additional 12 oz of formula. So far I have noticed some shaking in her right arm and head a la Parkinson's disease. She is also sleeping like a newborn. It's been a couple of months since I've seen her smile. I miss that. I guess I'm acclimating just like Mermaid because this is not making me cry either. We are absolutely doing the best that we can and I need all my energy for taking care of my family. I can't waste it on worry. I'm grateful for every day that I get to hold me sweet little one and kiss her chubby face.

Guess I'm not over it.

Yesterday when I went to the grocery store, I saw a man with Down syndrome bagging groceries. It made me sad. I want my son to be more than a bagger at a grocery store when he's 40.

staying the course

Dr. LaJoie said to stay the course with the ACTH. I guess she expects it may take a little longer to show it's true usefulness. So that means another week of full dose injections and major cranky baby followed by yet another EEG and weaning off of the ACTH. If all goes well with the EEG that will be the end of it...I think. If not, Mermaid will then start up another medication that I am not learning how to pronounce unless she actually has to take it. But it is not quite FDA approved and imported from Canada. Either way, I want to figure out how to donate my unopened vials of ACTH to NORD because each of those suckers costs about the same as a new car and I'd love to share that gift with another family.

Tangent about scrubs

Scrubs are a scam. Granted, there was never any PSA indicating that medical professionals would dump all of the street clothes in a locker and then have a scrub down with boiling water and lye soap prior to donning their sterilized scrub suit especially for medical providers. But "scrubs" sounds like scrubbed, tubbed, germ free and ready to give you sanitary medical attention. However, I see these people in scrubs walking the streets, buying their lunches from street vendors, leaning against exterior walls and taking smoking breaks. Scrubs give a false sense of germ security. I think people really wear scrubs because it makes wearing pajamas to work acceptable. I get it. Medical professionals work crazy hours and it's hard to tell whether it's day or night when you're living in florescent lights for 18 hours straight. I should get some scrubs so that I can sleep in them and then roll out of bed ready for work. What do you think? Should I get the plain or something a little edgier with hearts and angels? ;)

It's not a problem.

I think being a mother is pretty demanding. And, of course, it's never the only thing any of us is doing. I don't know, but I anticipate being a mother to Lizard Loaf in particular will be extra demanding. I've decided I don't have time to battle with my weight anymore. Mother of two, one of them with DS... I can't imagine when I'd find the time! So, I've decided to be thin and be done with it. I'll give myself a month off after my boy busts out. Maybe six weeks. And then I'm moving on, leaving the weight behind.

*phew* What a relief! I feel better already...

Mermaid resurfaces

The past several weeks have been full. We met Mermaid's service coordinator. She came into our home and explained the whole process to us and then arranged for some evaluators to check out Mermaid's sweet skills. We picked a provider that would send all the evaluator's at once rather than spread out over the course of a week or so. We all anticipated the 5 evaluators emerging from their van in their matching scrubs a la A TEAM (now you know how old I am ;). My Hero and I were fiddling around with a potential theme song for them, but alas they ultimately had to spread it out over three different days. They did still wear scrubs. That all happened at the beginning of August and we were anxious to get services going.

Before the evaluation reports even arrived something else started going on with out little Mermaid. I thought it was gas pain at first or possibly hiccups. Her body would jolt a little almost like a startle reflex and then it would happen again and again seconds apart. As this pattern emerged a friend connected me with her friend, I'll call her Providence. Providence has a gorgeous daughter with Downs who had recently been diagnosed and treated for infantile spasms. Of course this all came together during the last two weeks of September when every medical professional in the entire city was on summer vacation. It took me four or five days just to get a live person on the phone to make an appointment for Mermaid. Providence was so encouraging giving me phone numbers and checking in with the professionals she knows to help Mermaid get in to see a pediatric neurologist. She told me not to give up nor to put it off.

The Tuesday before labor day weekend we got the golden ticket which included an appointment with pediatric neurologist extraordinaire Josiane LaJoie. It's a beautiful name and she is a beautiful person. We started with a little EEG and then a meet and greet with Dr. LaJoie. The surprise ending was that Lily and a friend won a three night/three day stay at the NYU medical center including unlimited crushed ice and round the clock EEG and video surveillence. I was the friend. I called My Hero and we hustled to figure out what to do with the other four children.

The upshot is that Lily had five seizures, for that's what they are, while being monitored. She was prescribed a steroid like medication called ACTH. Initially, our insurance denied the request because this miracle drug costs about six thousand dollars per shot (.5 ml). The six week therapy would cost roughly 175K. I would ask for physician back-up, too. An organization called NORD (National Organization for Rare Disorders) called and donated the first precious vial of ACTH to buy us a little time to work things out with the insurance. We would not have been allowed to leave the hospital without the medication plus I had to get trained to inject Mermaids chubby little thighs. If you want to donate to something, NORD is a worthy cause. Meanwhile, the lovely women working for the insurance tel-pharmacy in SD have little babies, too so they kept me on the phone until it was all worked out. Ultimately, the entire supply arrived simultaneously.

I thought we would get to leave the hospital Thursday morning after proving that I could give Mermaid the shots. I practiced on every kind of fruit I could find. I practiced on the vinyl "daybed" in the hospital room. I even practiced on myself a few times to get a feel for it so I wouldn't choke up when I had to inject my sweet babe. That's when they told me she would still have to stay the night for observation after her initial dosage. *sniff* Our whole family was disappointed, but we were reunited Friday and grandma stayed an extra night. We had Mermaid's blood tested a couple of times over the next six days and her paternal grandparents came to relieve m-grandma and immerse all the kids in extra attention after the deficit. I think we were all suffering attention deficit disorder and all the attention really helped!

At the end of the first week on ACTH Mermaid wasn't having so many clusters or episodes just a little spasm here and there. They upped her dosage. I took her in on Friday for another EEG and it still doesn't look perfect. I was pretty depressed to learn it wasn't working and that even blinks and stares represented electrical misfiring in her brain. I've been pretty discouraged for about 48 hours. I went to church today, though, and I'm starting to feel uplifted and even hopeful. I'll meet with the neurologist Monday to see what's next. I'll also be meeting with an osteopath on Tuesday who may be able to help. I'll report back on that. Lastly, we finally have our IFSP which translated means: big meeting withe everyone to decide what early intervention services Mermaid will receive from the city.

Now for the special thanks section:
Special Thanks to My Hero for being the most available and optimistic best friend.

Special Thanks to our homeschooling friend on the east side for keeping our four children entertained and fed during a 6 hour play date and told us that it was no big deal. It was a big deal to us.

Special Thanks to Mermaid's maternal grandmother for interrupting her visit to other grandchildren to ride the un-exotic chinatown bus in the middle of the night to care for her four motherless grandchildren at my house. She also donated her favorite mini flashlight to the cause so I could read or visit or see my way to the bathroom at night without disturbing our lovely roommates.

Special Thanks to My Hero's employers for being so understanding about skipping so many work hours to be with Mermaid and I or with the fantastic four at home.

Special Thanks to friends and fellow church members who spontaneously started bringing meals.

Special Thanks to Providence who continued to encourage me and send positive thoughts our way. She even came by the hospital for a 1 hour visit bringing healthy snacks full of protein, magazines requiring very little brain (which was all I had), and a sweet toy for Mermaid.

Special Thanks to our dear upstairs neighbors who entertained me with hours of conversation at the hospital one night. Always a pleasure.

Special Thanks to our UWS homeschool recess coordinator who continues to send prayers and offers to help our way. She is always thinking of my kids and sending email links to websites and articles that might interest them. This is especially good because I keep forgetting to think about them.

Special Thanks to NORD and to our insurance tel-drug ladies in SD...you know who you are!

Special Thanks to Grandma and Grandpa DC who spent their labor day weekend giving us all the attention and Finnish meatballs we could hope for. It was very restorative.

Special Thanks to my Washington Heights friend who runs with me in the mornings, asks me about Mermaid, invites my children for play dates and doesn't try to stop my tears when they come once in a while.

Special Thanks to all our family and friends who were thinking of us and praying for us!

First Contact

I just moved. It's not that big a deal, really. I've moved at least 10 times in my life, and that's not counting any of my various apartments in college, etc. I figured once we got settled, I'd contact the local support group and join the party. No big deal.

It was harder than I thought.

The group out here is pretty big, I guess, and very organized. Their website is amazing, and actually helped me choose the hospital where I want to deliver Lizard Loaf, which also led me to my new doctor (who I hope is amazing... she sure sounds like she will be). For contact info, there was a phone number and general email address, too. I tried the number first. Even just dialing it, I felt anxiety. What do I say? I got some sucky news this past summer, so will you guys be my friends? Everything I thought of sounded pretty much as bad. But even worse, no one answered. The contact number for this support group went to a voice mail. "We try to check these messages frequently," it hedged. Try?! So, if you're busy, my petrified call for help would be what? Over-looked? Misplaced? Out-dated? Forgotten? I started feeling like I already belonged in the 'round file' (aka-trash can). No one was going to listen to my message. There wasn't going to be anyone in my new town to help me. I was alone.

*sigh*

I cried a little. Then I sent a terse note to the email listed and left the computer. My daughter's preschool tries to use redirection as the primary response when children get upset or misbehave, and I thought I'd try the same thing. I don't remember what I did, but an hour later my husband happened to check my email. I had such a wonderful note from one of the board members of the local group, and she had responded to my email within 10 minutes. It was a few days before I responded, and I still haven't called to set up a time to meet her and her son, but hearing from her has been such a comfort, such a strength. I'm not in the 'round file'; I'm not alone. My new friend says that I'm part of a special club now and that 'we stick together'. I think I believe that.

Mermaid's EKG/Echo

Sweet hair day for Mermaid! ;)

Mermaid had her EKG and echocardiogram on the same day as LL (Lizard Loaf). It's destiny. The MD felt confident telling me that his preliminary viewing of 80 something pictures of her heart indicated no defects. The total number of photos topped 130+ by the time we left and they'll be comped over before the official report is filed, but I'm feeling pretty good about that diagnosis. =)

Fortunately, I had a girlfriend explain what to expect and how to prepare. I want to be that girlfriend for you, in case any of you are going through this for the first time. Step one: plan to be at the hospital for a while. I packed a couple of Clif bars for me and a bottle for Mermaid. The EKG wasn't a big deal. Mermaid did have to strip down to her diaper and it took a couple of minutes to put special stickers all over her and hook up the electric leads, but the actual test only took a couple of minutes max. then they removed all of the stickers, though some residue remained on Mermaid's belly. I asked the technician how the results looked and she just said she wasn't a physician and couldn't discuss it with me. That left me nervous. I learned they really just can't tell you. It's not allowed.

Then we waited to be called for the echocardiogram. I had heard this would take about an hour once they started. In our case it was 2 technicians and 2 doctors and 1 hour 45 minutes. Mermaid finished her bottle and I had to down a Clif bar while they were changing technicians. Technically, no food was allowed. What's a nursing mom to do? I had left my home three hours earlier! It's important that the child hold very still especially during the echo, so being asleep or having a bottle to drink for that 1-2 hour process is so helpful. The last thing you want to do is be sent home and have to reschedule because your baby wasn't cooperating. Also, baby must be bare chested so it might be nice for baby to wear a button up or just take baby's top off and keep baby comfy in a blanket until it's your turn. Maybe baby will even fall asleep and you wouldn't want to have to wake them up by taking their clothes off for the echo. Now, the technicians could certainly help the process by warming the ultra sound gel. Mermaid was actually pretty good and took her sweet time with the bottle, but towards the end got really bored with being calm and wanted to play with the cables stuck to her shoulder. The technician was working right under her neck, so Mermaid went to work sucking on the technician's hands.

It was amazing watching her little heart pump so steadily. I could clearly see all of the chambers working. Then the technician would flip a switch to help her see blood flowing in and out and it came in three different colors: blue, red, yellow. It was like fireworks exploding in Mermaid's chest. When the doctor came in to tell me there were no defects, I felt like there were fireworks exploding in my chest too! Woo Hoo!

Echocardiogram

I nearly passed out. It wasn't that the news was shocking (we didn't even have any news yet) or the procedure so painful (no needles involved)... actually, I don't know what it was. But whatever the cause, I started to black-out about 10 minutes into the ultrasound with the pediatric cardiologist. They got me some more pillows, a drink of water, and I stole an apple slice from the snacks I'd brought for Her Nibs. I've still felt weak all day, but I did avoid actually passing out.

An echocardiogram is an ultrasound where they look exclusively at the heart, but in great detail and with an expert on the heart. We saw a pediatric cardiology fellow first, then the head honcho pediatric cardiologist came in for a few minutes to get a few pictures himself, and he's the one who sat down and talked with us afterwards. I shifted by legs around a little at the beginning and the doctor said "Yeah. Make yourself comfortable. This is going to take about 45 minutes." Seriously?! A 45 minute ultrasound?! Yep. Seriously. We accepted their offer to put a movie on for Her Nibs.

It wasn't fun, exactly, since I was still sort of fighting for consciousness the whole time and felt very uncomfortable while trying to lie still and hoping Lizard Loaf wasn't in a bad position for pictures. At the same time, I've been waiting anxiously for this day and the results of the echocardiogram ever since we learned Lizard Loaf has Down syndrome. Nearly 50% of children with Down syndrome have a congenital heart defect (you probably know this, but congenital just means 'born with it'). Usually, the problem is a hole between the four chambers of the heart, pretty much right in the middle. This is, of course, a bad thing. The solution is a surgery within the first year of life that is actually fairly routine. Babies with this heart problem have a harder time circulating oxygen, so they tend to be sleepier, and I've read about one that had a bluish tinge until after the surgery. From what I understand, babies who need this surgery are usually in the hospital for less than a week and recover very quickly. This sort of health problem is not desirable (by any stretch), but it's not the end of the world.

Fortunately, Lizard Loaf's echo cardiogram came up completely normal.

*huge sigh of relief*

We're not completely out of the woods, but Lizard Loaf definitely doesn't have the big hole in the middle of his heart between all four chambers. In fact, he doesn't have any major heart problems at all. Unfortunately, this ultrasound can't see everything. The heart, I learned today, works differently before a baby is born. The heart fast-tracks oxygenated blood from the placenta straight to the brain, rather than cycling it through the lungs first (which don't have any oxygen to give yet, obviously). Once a baby is born and starts taking in oxygen, the tubes change a little, and the blood picks up oxygen in the lungs before going to the brain. The pressure between the various chambers of the heart changes after a baby is born, too. Some things that might be invisible now would be apparent later after these changes happen. Also, Lizard Loaf's heart isn't much bigger than a quarter right now. You can only see so much on such a tiny organ. There's still a chance he has a small hole in his heart. Even if he has one now (which we can't detect), it could easily fix itself before he's born. And even if he has one that doesn't fix itself before he's born, it would probably still repair itself and not need surgery.

I know this is a rambling post. I hope it makes sense. Bottom line: There are no guarantees in life, but in every way we can measure right now, Lizard Loaf is perfectly healthy. And Turtar and I are very grateful for that.

Pictures

Yeah. I know. He's pretty much gorgeous (and with quite a schnoze, too). Sometimes I wake up and think: It's all a mistake. When my baby boy is born, he will be healthy and normal. He especially will not have Down syndrome. What is counting chromosomes suppose to prove anyway?

*sigh*

Natalie Merchant's song "Wonder" fits Mermaid better (for reasons of gender), but I've adopted it, too, as part of a new logo. I'm making a onesie for Lizard Loaf with this on it:

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.