In our achievement driven world having a child with Down syndrome has been a huge eye opener for me. I didn't think much about the nature of disabilities before I had Benny, but now that I know him I want everyone else to know that disabilities bring something valuable to our world. Every child brings their own unique set of attributes into the world and Benny is no different. His beautiful smile and exuberant nature lights up our lives. He has a knack for cheering people up. He has a profound appreciation for good music, friends and family. These are not the achievements that pediatricians check off on developmental questionnaire boxes, but the best things in life cannot be measured. Recently I watched the TedX talk Socially Constructing Down Syndrome by fellow rockin mom Cara Jacocks. Towards the end of her talk she mentions the many accomplishments of adults with Down syndrome who have achieved what we consider stereotypical success in our society - high profile jobs as actors, models, athletes, entrepreneurs, etc. While these successes are exciting, and as a mom I always love sharing the accomplishments of others with Down syndrome, I worry that highlighting these rare high achievers may do more harm than good towards changing the underlying prejudice that is so harmful to our families. If we really want to change the conversation around disabilities we need to talk about what those disabilities bring to the world, not what people with disabilities are "able" to do despite their disabilities. Many people with Down syndrome will not become high career achievers. In fact, the statistics on employment for people with intellectual developmental disabilities is abysmally low. Many of us who have children with Down syndrome know that there is a high possibility that they may need care for their entire lives. But that does not mean that their lives are not worth living. If we really want to change the conversation around disabilities we need to talk about what those disabilities bring to the world, not what people with disabilities are "able" to do despite their disabilities. While working on an episode of my podcast T21Action last year I had an eye opening discussion with Sandra McElwee, author, activist and mother of Sean from the reality show Born this Way. One of the books she has written about Sean talks about the importance of inclusion in education. When I asked her why inclusion was important, she surprised me by saying that inclusion is better for every child in a classroom, including the highly gifted children. Statistically, every student in a classroom benefits from having children with disabilities present. All of the students benefit not just socially, emotionally, and academically but they even score higher on intelligence tests. Apparently learning together with people with disabilities actually makes you smarter. This kind of blew my mind. I asked Sandra how sharing the classroom with a student who has disabilities could actually improve IQ scores of neuro-typical students because it seemed too incredible to be true. She said that we learn best when we teach others, and that it's also a confidence booster, both of which can increase intelligence test scores. We live in such a high achievement world, and I’ve seen so many parents fighting to get their children into the “best” schools, which are so often ones that cater to students who are gifted high achievers and exclude different learners who may not test as well. Apparently learning together with people with disabilities actually makes you smarter. If including students with disabilities raises the abilities of every single student in the room, than our current model is incredibly damaging to every child. This follows into the adult world, where the statistics on the workplace match those in the classroom. Workplaces that include people with disabilities report more productivity, job satisfaction and retention of workers. In other words, people work harder, are happier, and more likely to continue working for that employer for longer. With statistics like that companies should be clamoring to hire people with disabilities! Instead, as I mentioned previously, people with disabilities, especially intellectual ones, have the highest rate of unemployment in the United States. This needs to change, and it starts with a paradigm shift about ability. These statistics prove that it is not the rare high achievements of people with disabilities that bring value to our world. It is the disability itself that makes our lives better. How is this possible? We have been brought up to believe that the worst thing in the world is to not have the same abilities as everyone else. We have government programs designed to prevent people with disabilities from being born at all, because our fear of them is so great. What if people with disabilities aren’t a burden to society at all? What if they bring something critical to our world? This is an important question to ask ourselves, as early prenatal testing has already begun the process of eliminating people with disabilities from society not just from exclusion but from having never been born at all. As a mother I still prefer to highlight my son’s capabilities, and I still worry about what he may never be capable of. I have a long way to go before I rid myself of the societal conditioning that makes it so hard to embrace disability. The truth is, this is what makes it so hard to embrace all of myself as well. I am not capable of everything. I criticize myself for not being more organized, for being so terrible at math, for my inability to properly aim or catch a ball in any sport. The truth is we all have disabilities in one way or another, and we all spend too much time trying to compensate for them. Separating ourselves from people with disabilities keeps us from seeing the beauty in ourselves and our own challenges and areas of weakness. Today I challenge myself to accept and love the parts of myself that struggle, and to find pride in the things I cannot do. We cannot control or change anyone but ourselves, but I hope that in working on my own acceptance of disabilities that I inspire others to do the same. Let’s embrace our disabilities, celebrate our differences, and let go of our assumptions about what creates worth. By doing so you may find, as I did, that the world is a much better place than you ever imagined.
0 Comments
March 21st is coming up which is a big day in the world of Down syndrome. The numbers 3-21 take on a different meaning when you have a child with Down syndrome, also known as Trisomy 21. Today the site "A Day in the Life of Down syndrome" is looking for day in the life stories. I know how important this is because when we got our prenatal diagnosis it was other parents stories that helped me to have the courage and faith to continue with the pregnancy. This was especially helpful for me because the way that our diagnosis was delivered was incredibly negative. Having access to another perspective was key to our making the best decision for our family. To get an idea of how our diagnosis was delivered, I would like you to imagine for a moment that you are pregnant and you've come in for an ultrasound. The ultrasound tech can't tell you anything, so you wait for the obstetrician. She comes in with a serious look on her face. "I'm sorry to tell you, but it is highly likely that you're having a boy. We could do an amniocentesis to find out for sure, but given the results of your blood test and this ultrasound, I'm 99.9% sure that you're having a boy." She goes on to say, "Boys have a higher risk of cognitive and behavioral problems like autism and ADHD, as well as a higher incidence of serious health problems like cancer and diseases of the heart, lungs and nervous system. They also have a lower life expectancy. I can't tell you how severe your baby will suffer from being a boy, but these are the statistics." She goes on to tell you that in the state of Colorado you have two weeks to legally terminate the pregnancy. Now these statistics are true, boys do have a higher rate of cognitive, behavioral and health problems than girls, and women tend to live much longer than men, but if this was the way parents were informed about their child's simple chromosomal difference, there would be a lot fewer boys in the world. Replace the word "boy" with the word "baby with Down syndrome", and you have a pretty good idea of how we were informed of our diagnosis. It is no wonder that so many parents who receive a prenatal diagnosis of Down syndrome choose to terminate. The rates are between 60-90% depending on country and reporting agency. This is heartbreaking when you consider that the differences between people who have Down syndrome and those that don't are no greater than the differences between girls and boys. A few weeks ago a post circulated of one such story, a woman who ended her much wanted pregnancy after receiving a diagnosis of Down syndrome. Reading her story made me so grateful to all of the parents who shared their stories of the absolute joy and delight they experience every day raising their children with Down syndrome. It was reading these stories that meant the difference between her story and my own. So this is why I've decided to participate in the Day in the Life of a person with Down syndrome. You can find my Day in the Life post here, along with many others, or just continue reading it here: My story is very similar to that of most parents of young babies, a combination of exhaustion and joy. Nearly every day Benny wakes up with an enormous smile. His smile lights his entire face up, and fills the room with joy. This morning was not one of those days. Benny is seven months old, and this morning he had a wet diaper and a stuffy nose. My husband took him into the living room so I could sleep in for a few more hours. (And yes, I do know how lucky I am) After my husband left for work and returned Benny to me I nursed and cuddled with him until the handyman arrived and rang the doorbell. My older son, home with strep throat, jumped into the room with a baseball bat to defend our home from the intruder. After talking him into putting the bat aside, I answered the door and set Benny down on his play-mat in the living room so that I could talk to the handyman. When I returned he had rolled over onto his stomach and was happily scooting around on his belly like a lizard. He is always quite proud of himself when he manages to get anywhere like this. Getting to this point has taken some hard work, and we are pretty proud of him too. I picked him up and sat down with a few books. The first book had little flaps hiding various body parts like toes under boots. Benny is still getting the hang of using his hands, but he was able to open and shut a few flaps, possibly even on purpose. Next we read a book about bears. We are teaching Benny to sign, so I practiced all the signs I know as I read the book to him. Later on I sat him in his high chair and fed him some smooshed up peas and avocado. It was his first time tasting peas and he was a fan. Eventually he had a nap while I played with my older son who had way too much energy for a sick 11 year old. Juggling both boys was tiring, and by the end of the day I was grateful to have the chance to sit down and write this post. It's true that Benny is different than his brother was as a baby. Some of that is due to his Down syndrome, but the majority of the differences I notice are because Benny has a much sunnier disposition. Despite Down syndrome and undergoing heart surgery at four months, Benny is pretty close to on par with his typical peers. This is largely in part to Early Intervention services that we've been receiving since he was three weeks old. Every week his Occupational Therapist, Sara, comes and works with him. He adores her, and works hard to impress her. While she is working with him she is also teaching us what to work on in the week between her visits. When he was a newborn she showed us how to hold his limbs close to his body, and help his head rest in a midline position. This helped combat his hypotonia, also known as low muscle tone. Each week built on another skill that we had practiced the last week, until it all fit together and suddenly he was rolling over, sitting up, reaching for toys...doing all the hard work of babyhood just like other babies his age. Soon we will be meeting with a speech therapist. I am looking forward to it. Even though he is still in the babbling stage, after seeing the power of working with an Occupational Therapist very early on, I am eager to get as much help with speech as possible. In addition to these services, I am constantly monitoring the internet for new ways to help Benny. There is so much new research happening, it's really exciting. Already the life expectancy of people with Down syndrome has gone from 11 years to 60, and every day I hear stories of the amazing things adults with Down syndrome are accomplishing now. With modern medicine and our improved understanding of the condition, this is only going to get better. I've found a great deal of research that indicates specific vitamins and supplements help with trouble areas common to Down syndrome. I started taking some of these prenatally and continue to take them now while I'm still breastfeeding. In addition we are also working with a naturopathic doctor who specializes in Down syndrome. She looked at Benny's thyroid levels and prescribed appropriate medication to help remediate some issues that had come up. I believe that staying on top of this has helped Benny greatly. And it's not much more than I did with my older son. I enjoy researching and have always wanted to do everything I can as a parent. The biggest difference with Benny is not the therapy or the supplements, it's that I have more support. And not just support from Early Intervention - the Down syndrome community is amazing. I have yet to meet a parent of a child with Down syndrome that is not an inherently good person. And in talking to other parents it seems that it is almost always the child with Down syndrome that is the easier child. Yesterday a friend of mine stopped by with her two little sons who had fallen asleep in the car. The weather was beautiful so we drug out two lawn chairs and sat next to her car in my front yard. Benny played with toys on a blanket in the grass and we chatted about various things. Eventually the conversation turned to how funny it is that Down syndrome has turned out to be no big deal. I am still early on in my journey, but I can tell you that so far I am very, very happy. My husband and I often spend ridiculous amounts of time just enjoying how wonderful our baby is. He delights us with his loving energy that radiates out of him. It is almost impossible to be in a bad mood with Benny in the room. I know from experience that not all babies are like this. My older son was a lovely baby, but he was not the positive ray of sunshine that Benny is. I know that we will continue to have our challenges, just like all parents do. I am sure there may be times that I curse that extra chromosome, but I will never regret my boy that has it. He is the sunlight that illuminates our days, and I cannot imagine life without him. Having a baby who needs oxygen really sucks for many reasons. First of all, the baby hates it because it's so uncomfortable with a hard thing in their nose and tape all over their face and a tube tugging all the time. But much worse is the fact that your adorable baby now has something covering their cute little face...something that makes them look like they're sick. So instead of people saying "What a cute baby" they ask "What's wrong with your baby?" and that just sucks. When Benny first got prescribed oxygen I really freaked out. At first I just despaired that there was no way we could do this. Then I pulled myself out of it and tried every different method of keeping the cannula on his face that I could find - paper tape, tender grips, cannulas that claimed they were softer on a babies face...none of them worked very well. Benny hated it, I hated it, our whole family hated it. Finally I reached out to everyone I knew who had ever had a baby on oxygen. Since we live more than a mile above sea level, that’s actually a lot more people than you might think. I got a lot of advice. One mom shared that to keep from tripping over the long oxygen tubes running from the concentrator in an upstairs bedroom to her living room she used cable concealers and multiple tubes. We were very excited about this idea, and my husband immediately ran out to a home improvement store and bought a kit. Another method someone showed me for dealing with the great oxygen tube tangle problem is to use a pacifier clip to hold the oxygen tube at a loop at your belt buckle like this: Soon after these great discoveries, a very experienced Oxygen Mom came over and showed me all of her tricks. She showed me how to cut up pieces of Tegaderm Film and apply it at the temples and behind the ears to keep the nasal cannula in place. This was much easier on his skin than the "Tender Grips" bandages, which ripped his skin off when removed, making him scream in pain and leaving bright red painful circles on his sensitive newborn skin. She also showed me how to snake the tubing down his outfit so that it wouldn’t get caught and accidentally strangle him. She told me that I could request small tanks and a backpack from the oxygen supply company, which allowed us to be much more mobile. (Surprisingly the oxygen supply company hadn’t bothered to tell us or supply us with one until we requested it. They had only given us giant tanks to lug around) With the little tanks we felt liberated. We were even able to use slings and front carriers and go for walks. An emergency hospital stay led to some further insights on how to make Benny's oxygen use more comfortable. While we were there a nurse told us about a nasal gel we could put on his nose to keep it from getting too dried out. We also discovered that having a humidifier on his oxygen line really helped with his comfort. We asked if we could take home the bottle they had used in the hospital to add to his line at home. Unfortunately, Benny was nearly drowned when my husband accidentally tipped the water over into his oxygen line. After that we decided to take it off until we could get a proper system. During the drowning incident we also decided to come up with a better system for keeping his nasal cannula on. My sister Josephine was visiting, and helped me to modify some of his knit hats so that we could tie the tubes up over his ears and then cinch it under his chin. This had the effect of keeping the nasal cannula in place and the hat on at the same time. It was also easy to remove, so that if there were ever another incident where we needed to remove the cannula quickly we could. The first hat that I modified I simply cut a couple of holes on either side of the hat and used pipe cleaners to hold the tubes in place. It worked really well and also looked really cute, but I was afraid that the pipe cleaners might accidentally poke his head if I used them at night. I happen to live by a yarn shop, and Josephine stopped by to see if she could find a good material to use. The shop owner helped her select a yarn that was not too stretchy, so that it would stay in place well, and a yarn needle. Sewing the yarn onto the hats is really simple and only takes about a minute to do once you have a yarn needle and yarn. We shot a little video to show how, but the files corrupted somehow, so I’ll have to reshoot it and post it later. In the meantime, here are some pictures with directions on how to create your own cannula holding hat: Soon after we created the modified hat system, Benny had to take another emergency trip to the hospital. Everyone commented on how cute and functional his hat was! We also made another discovery. He happened to be wearing a pair of snap down footy pajamas the day he needed to go the hospital. We discovered that in the snappy pjs, he was able to remain clothed despite having tons of wires and tubes running all over him for monitoring. This discovery came in handy later when he had heart surgery. We stocked up on snap and button down pajamas beforehand, as well as leg warmers. It's silly little things like this that can make a hospital stay so much more comfortable. Knit hats get loose after a day or two of wear, so if you try the hat system I recommend either making many knit hats and washing them often, or using a sun hat. If you are not the DIY type, there is a company that sells hats, o2kidslids.com. We bought a hat from there as well, and it worked great other than that I hadn’t ordered the right size, so it was a bit big on Benny. With all of these tricks, I quickly became a pro at keeping Benny oxygenated in style and comfort. Still, it was a big relief when he finally started keeping his levels up on his own. How easy life seemed without all of the tubes and tanks and machines that came with the oxygen. Recently we got a call that Benny’s sleep study had shown his oxygen saturations levels dropping below 90 over half of the time. Our doctor recommended putting him back on oxygen full time for a month. I was devastated. We had all enjoyed the freedom without oxygen and the idea of having to do it all again seemed like torture. Today is the first day I’m going to leave my house with Benny since having to put him back on oxygen. I am bracing myself for it as I had really been enjoying just having a baby. A cute, healthy-looking baby. A baby whose health condition I didn’t have to explain if I didn’t feel like it. A baby who came just with a diaper bag and a car seat, not all of the normal baby stuff plus a backpack, tanks, tubes and all the various oxygen tank accessories. This was one of the hardest blog posts I’ve written because I really wanted to be cheerful and upbeat about having a baby on oxygen, but I don’t feel that way. Having any kind of baby is hard. Having a sick baby just sucks. It doesn’t mean I love Benny any less because he has health problems, it just means that sometimes I have days where I just don’t want to go outside. I don’t want to explain to the kind, curious strangers that no, my baby wasn’t a preemie, that he has Down syndrome and is recovering from a heart defect and that’s why he’s on oxygen. But he does and they will, and maybe my going outside with my baby and his oxygen tank will help somebody else feel like it’s okay too. Maybe my writing this post will help other parents who are going through this to know that they’re not alone, and that it is doable even if it does suck. I hope so. Please let me know if you have any suggestions for parents who have a baby on oxygen that I didn't include here, and if you know parents who could use this information do share this with them. Thank you! Dinner came out so well tonight I had to share. People often tell me they could never go without wheat and dairy, but it's easy when you eat meals like this one; juicy herb roasted chicken over crispy potatoes, stuffed mushrooms wrapped with bacon and a warm green bean salad with garlic and grape tomatoes. I've been doing this for a long time though, so I've had plenty of years to master the art of feeding my family gluten and dairy free meals. I enjoy cooking, but I'm comfortable eating out at pretty much any restaurant too. It's easy once you get the hang of it. My oldest son was very colicky when he was a newborn. While reading Ann Lammott's "Operating Instructions" about her experience of dealing with colic, I decided to try the solution that worked for her in the book - cutting out wheat and dairy. Eleven years later our newest member of the family, Benny, appears to also have trouble with wheat and dairy, so I've become even more vigilant about keeping it out of my diet while I'm breastfeeding him. It's not a big deal though, I love how much healthier my family eats as a result. After we ate dinner I threw the remaining chicken carcass in the crockpot, covered with salted water. I'll add a tablespoon of apple cider vinegar and some cracked pepper and call it good. Tomorrow I'll strain out the liquid and use the bone broth in almost every dish I make for the rest of the week. I learned about bone broth when I was trying the GAPS diet to try to cure my IBS a few years back. Bone broth is really good for you. It helps keep your gut lining healthy and provides important nutrients for brain function. And it tastes good. Incidentally, it is naturally gluten and dairy free. One of my favorite dishes to make with bone broth is chili. My entire family loves it, and it's so delicious and warming on a cold winter day. I make my chili different every time depending on what meat and beans I have on hand, but here's a basic kind of recipe for my chili:
Some bone broth, filling about the lower third of the pot Ground beef or other meat browned first in the frying pan with some onions White beans, pinto beans and kidney beans canned or, if I'm feeling really ambitious from scratch Diced tomatoes, garlic and spices. (Chili powder, cayenne pepper, salt, pepper and whatever else feels right to taste) My family can handle goat dairy, so I might top with shredded goat cheddar or a spoonful of plain goat yogurt, but a lot of the time we just eat it plain. What's nice about chili is that you can add ingredients at your leisure and the longer it cooks the better it tastes. Another quick bone broth recipe is chicken soup. This is just chicken bone broth with rice, cut up leftover chicken meat, carrots, onions, garlic, salt and pepper. Simple, delicious and very healing for any kind of cold or flu. There are really lots of yummy foods that are easy to make and good for you that do not have wheat or dairy in them. The past few weeks we've used the meal planning site plantoeat.com to plan and shop for our meals. It's really nice because you can easily add recipes from any website to your planner and it outputs a convenient shopping list for you. I've found a lot of great recipes on paleo cooking sites and through the GAPS Diet and Nourishing Traditions cookbooks. These are great resources if you're looking for ideas. Even if you don't have time to cook or you're traveling you can still eat gluten and dairy free. Just remember that all meats, vegetables and fruits are fine, as well as carbs like corn, potatoes and rice. Someone posted recently that they felt they couldn't eat out because their child was on a gluten and casein free diet. Here are some examples of what you can order when eating out: Go to a Mexican restaurant and order tacos on corn tortillas. Real Mexican restaurants usually don't put cheese on their tacos anyway, but always request no cheese or sour cream and remind them not to put any on the refried beans either. At American restaurants order steak or grilled chicken or fish with french fries or a baked potato and a salad or sautéed veggies. Avoid ranch dressing. Italian or thousand island are fine. You need to be careful at Chinese restaurants to avoid breaded meat or anything cooked with soy sauce because most soy sauces have wheat in them. Simple dishes like beef broccoli or cashew chicken with rice should be fine, just ask the server to make sure it's not cooked in soy sauce. There is very rarely any dairy in Chinese food. Thai, Vietnamese, Korean and Japanese foods have almost no wheat or dairy in them. At the pho place near my house I even order the Vietnamese egg rolls because they are wrapped in rice paper, not wheat. The more authentic the better, just remember not to dip your sushi in the soy sauce and avoid the tempura dishes and you should be fine. Indian restaurants have lots of dishes to choose from. Masalas and that creamy spinach dish have dairy, but many other dishes do not. There is even a gluten free crisp made of lentils that many Indian restaurants have, so as long as you don't order the Naan you are good to go in the gluten department. French and Italian food can be a little heavy on both wheat and dairy, so are probably better to just avoid. Spanish tapas on the other hand can be quite fun, with plenty of little dishes that are safe to try. Ethiopian might be a hard one since the bread is such an integral part of the meal, but Moroccan food and other African restaurants should have plenty to choose from. Brazilian restaurants are really easy to eat at, since it's largely just hunks of various meats and a salad bar. This can be a real treat for a kid who can't eat wheat and dairy. Once you get the hang of it you will find that it's not such a big deal to go without wheat and dairy. The hard one is pizza, which is a basic staple of every fricking kid party, along with cake and ice cream. Luckily there are lots of places that sell gluten free pizza. If they don't have dairy free cheese it's not terrible with no cheese. Whenever my son is invited to a birthday party I let them know his food restrictions and ask if I can send him with his own food. Nobody has ever minded me sending him with a small pizza and cupcake of his own and that way he doesn't get left out or tempted to cheat. Someday I'll put up some of my weekly meal plans for more awesome ways to eat gluten and dairy free. I hope this post is helpful to you! We are at day four of Benny's recovery from heart surgery. Every day he does better and better. Yesterday he had the breathing tube taken out around midnight. The nurse had told us that he wouldn't get it out until the next morning, so my mom had stayed and sent me to get some rest at the hotel with my mother-in-law, Nora. I woke up just after a dream that Benny was healthy and smiling at me, and was just telling Nora about it when my mom called and said that the ventilator was out, and Benny was awake. I could hear Benny making noises in the background. It worked out well that I hadn't been there that night, because it would have been torture not being able to breastfeed him during his discomfort. They finally let me nurse him at 10:30 yesterday morning. It was so wonderful getting to hold him in my arms again! We had several visitor yesterday, including Benny's girlfriend Everly! She wasn't able to come in and see him in person, but she wore her Team Benny shirt in solidarity. Last night I stayed so that I could nurse him as needed during the night. It was a little rough, he has some congestion in his chest that made him uncomfortable, and the nurse tried to pull it out by sticking a tube in and suctioning. He really did not like that. She also terrified me by telling me that if the blood coming out of his chest tube turned cloudy that it would be a sign that he could no longer digest proteins and he would have to go on a low-fat diet. This would mean that I would have to pump and have the fat separated out of the breastmilk before I could give it to him. After months of having to nurse and pump and supplement I was really looking forward to Benny being strong enough to exclusively breastfeed. I started to freak out. This morning things started to look up again as soon as Nora and my mom walked in the door. They both have nursing backgrounds, so know how to read all of the machines and translate for all the medical staff. (I really think hospitals should give out Medical to English language dictionaries for families trying to follow what their doctors are saying to them.) They said that everything looked great, and they were right. Within a few hours the surgeon came and took out the chest tube and pacer wires. (The tube stuck out of his chest to release the blood and fluid coming from the heart, and the pacer wires they leave sticking out of the heart in case the heart doesn't start beating on it's own and needs a pacemaker.) Benny wasn't thrilled about this process, but we were. All he has to work on now is continuing to eat, poop and go about the business of being a baby. As long as he continues to get better we should be out of the hospital in a few days! We are so happy with his progress, this is truly wonderful. Today is the first day of Down Syndrome Awareness Month, a fact I would not have been aware of last October. It's only been six months since Down syndrome shot its way into my consciousness. The day after I got the phone call that my prenatal Panorama test results had come back positive for Down syndrome I gave a friend a ride to the airport bus. When I told her the news and mentioned the possibility of termination she said "that would be the compassionate thing to do". A sentiment echoed recently by author Richard Dawkins' insensitive tweet in response to a woman who expressed her "ethical dilemma" if she were to become pregnant with a baby with Down's syndrome. "Abort it and try again." he wrote, "It would be immoral to bring it into the world if you have the choice." It's easy to make statements like this when you have less than a 1% chance of ever actually having to make that decision. When it's a live baby kicking inside of you it's a different situation. Getting a prenatal Down syndrome diagnosis threw me into a moral quandary that I wasn't prepared for. On the one hand, this meant that our child would have at least some degree of intellectual disability. On the other hand, it also meant that our child would most likely grow up to be happy; in a recent survey of 284 people with Down syndrome, 99% reported they were happy with their lives, 97% liked who they are, and 96% liked how they look. I'm not sure what the statistics are for the "typical" population, but my hunch would be that the numbers would be almost reversed. Most of the people I know would not say that they are happy with their lives, or that they like who they are or how they look. Which begs the question, is it more important for our children to be smart or for them to be happy? Which led me to an even deeper question. Why do we have children at all? They certainly do not make our lives easier. These questions sat heavy on my mind as my husband and I debated our situation. Religion makes questions like these easier. Since neither of us is religious, we were pretty much on our own. One Sunday morning I woke up early and in the quiet of the morning decided it was time for some spiritual questing. I got dressed and made my way to the Unity Spiritual Center near my house. The sermon that morning seemed particularly relevant to me. I blinked back tears throughout the service. After it was over I made my way downstairs to find out more about the church. A woman introduced herself and we began chatting. I asked her what she did and she told me that she was a woman's health consultant and used to be a midwife. Suddenly I found myself weeping in her arms as I told her through sobs that I was pregnant and the baby had Down syndrome and a heart defect. She soothed me and told me that it would be okay. She told me that she had only delivered one baby with Down syndrome when she was a midwife. She said that the love in the room when the baby was born was stronger than anything she'd ever felt before. She felt that the reason so many babies with Down syndrome had these heart "defects" was because their hearts were so big and full of love. "If love was revered as much as everything else, people with Down syndrome would be held in the highest regard." she said. It was at that moment that I realized that I was going to keep this baby no matter what. I had already felt that amazing love she was talking about. And why shouldn't love and happiness be held in the highest regard? What else is there? A peace settled over me that day, and continued through my pregnancy. I felt as though my baby was reassuring me that everything really was going to be okay. My baby had a complete av canal defect, which meant that instead of four chambers he only had one. One great, big, open heart. And that great, big, open heart was sending me wonderful, pure love that enveloped me. Unfortunately, my husband couldn't feel the love coming from the baby the way that I did. He struggled with his fears and worried his way through the entire pregnancy. The moment our son was born it all changed. The love Benjamin brought with him burst into the room and filled my husband's heart. It is a strange journey we've had these past few months since he's been born. With the trouble he's had breathing on his own and the heart surgery looming in his near future we live in almost constant terror of losing him. And we still worry about what his future will hold. Despite the uncertainty about what having Down syndrome will really mean for him as he grows up, we have already become Down syndrome activists. This past Sunday we woke up early, packed extra oxygen and drove down to Denver for the Step Up For Down Syndrome Walk. I was both excited and terrified as to what we might find there. Right now Benny is just a baby. He may be a little more floppy and spend more time in the hospital than other babies, but for the most part he's just like most other babies. I knew that seeing older kids and adults with Down syndrome was going to give us a glimpse at what his future might be like, and that could be hard. When we got there I was surprised by how many people there were, and how few of them had Down syndrome. We made our way to the stage near the starting line, and I was just thinking that this was easier than I had imagined when the announcer called forward a young man to sing the Star Spangled Banner. His voice was strong and unmistakably belonged to a person with Down syndrome. The crowd cheered him on even as he struggled with some of the words. A mixture of tremendous joy and sorrow filled me at his imperfect delivery. I tried to hold back the tears, but couldn't stop myself from pressing my face into my husband's shoulder and bawling. True love means accepting things as they are, but that is not always easy. Our society values intellectual ability and verbal capacity above big heartedness and joyfulness. Many people think that it is kinder or more considerate to end a life rather than bring a child with Down syndrome into the world. As a mother I want to protect my son from that world. I want to prove them all wrong, stick a finger in Richard Dawkins' fat, stupid face. But I don't know what the future will bring. I don't know that my son will overcome all of the prejudices against him. I don't know what level of ability or disability he might have. All I know is that for me, I've answered the question of whether it is more important for our children to be smart or to be happy. It is more important for them to be loved. And I do love my son, whether or not he's smart or happy. And that is why I have children. To teach me that kind of love. And if Richard Dawkins thinks that's immoral that's just fine with me, because he obviously doesn't know much about love. I took Anatomy in high school, but I guess I wasn't paying much attention when we learned about the heart. No matter how many doctors I talk to, I can't seem to get a good grasp on my baby's heart defect and pulmonary hypertension. Yesterday my mother-in-law sent a letter to my older son explaining why his brother needs the constant low-flow oxygen he has recently been prescribed. It is the best description I've ever read: Hi again Caspian! I wanted to tell you a story about why your brother needs oxygen, and what the doctors will be fixing in his heart when he gets a little bigger.... Think of Benny's heart and lungs as a little house, with a furnace to keep it warm. It's cold outside, and Benny's little house has a door, and a window, and that furnace. Because it's cold outside, Benny likes, and needs, to have a warm little house. Benny has to go outside frequently to get supplies--food, air, and wood for his furnace. Every time he goes outside, he opens the door and then closes it behind him, so the house won't get cold. But Benny's door doesn't close quite right. The door to YOUR house opens only one way on its hinge, and it closes tight when it closes. Then to open it, it takes some effort.... you have to turn the knob, and pull it open. And when the wind is blowing hard outside against it, even in a storm, the door doesn't blow open on its own. It's SHUT, and shut tight. But Benny's door to his house is more of a swinging door. It sometimes moves BOTH ways, and if there's a big wind outside, the pressure can blow it open and let the cold air in, even though Benny wants his house to stay tight and cozy warm. Sometimes that door is just not tight. Also, Benny's window doesn't quite close. The glass doesn't go all the way down to the bottom--there's a few inches that are always open. The window wasn't measured absolutely correctly when it was made. So cold air is always coming into Benny's little house. That makes the furnace work overtime, and harder than it should. In the real world, Benny now has oxygen--which you can think of acting in Benny's little imaginary heart and lung house as being an extra heater. It takes some of the burden off his furnace in keeping his house warm. It also acts sort of as super fuel for his furnace itself, and protects it from getting overworked. When Benny has his surgery, the doctors will do two things: 1. They will create a bottom to Benny's constantly open window. They'll put another piece of good, strong glass in that window, and then it will shut tight--not letting in any more cold air all the time. When the window has to open, it will open. When it has to shut, it will thus be able to shut. No more always a little open, letting in cold air. 2. They will fix Benny's door. No more swinging open with big winds outside. They will fix it so that it will only open ONE way, and when it closes it will shut tight. When the door has to open to get supplies, it will open, and then shut tight afterwards....not only to not let in cold air constantly, but also to not let those supplies roll away by accident. So then, instead of Benny's little house being cold all the time-- because cold air is always coming in from the window and door that don't shut tight-- thus making his little furnace work so hard, and constantly, to help keep the house warm----with a repaired door and window, his furnace can work normally, like it should, and not so hard all the time. Also, Benny's house will be warmer and more comfortable. Everything will be easier, and more comfortable for Benny, once that door and window are fixed. So until then, the oxygen will help his little furnace--take some of the burden off it by acting as super fuel for it, and also by acting as an extra heater. It isn't heat, though, that's the issue--it's oxygen. Benny's heart and lungs need some help right now to circulate oxygen to his body. Our hearts actually have (what you could call) windows and doors between its chambers (the four "rooms" inside our hearts). They have to open one way, and one way ONLY,and they have to shut tight, and not open up backwards with pressure against them. Those doors and windows are called heart valves. So the doctors will fix up Benny's heart, so that his heart home will stay nice and cozy warm, and his real body will be able to obtain and distribute oxygen well. Then when he gets older, and learns from you and your parents how to run around and ride a bike and swim, his body will have the energy and oxygen to do all that. The doctors know all about how to fix things. Benny just needs to get a little bigger first, before the surgery, and the oxygen he's using now will keep things going okay until that time. You of course can't explain all this to Benny, but when you talk to him,you can tell him that even though sometimes having to have oxygen is blech, it's really helping, and it will be okay. He'll always have someone nearby to take care of him and keep him company. So, big brother--I hope school is fun--your clubs, your friends, your teachers. Send us an Email and tell us when you get a chance. Love, Grandma and Grandpa
its way into my life, cluttering up my closets and shelves with it's sentimental uselessness. Every so often I dig through the piles and banish things that I never use and which don't mean too much to me. My load is lightened and I go about my life never thinking about it again. This time however, the regret of donating that box has continued to slowly creep up on me. It was not immediate, but over the following months little memories began to come back to me. The signed cds from bands that I had seen before they got big, the obscure music of bands that never got big but should have, the music of friends who were musicians, cds that friends had burned for me...most of these could never be replaced, and I mourned them. But the bigger loss was one I had not realized until a moment in the car when my son wanted to listen to some music. I felt it was time to expand his horizons a bit, and so I started to play some of my favorite music from back in high school and college. Music that I knew all of the lyrics to...music that came embedded with so many memories that each song was like a time capsule...music from a time when we didn't ask someone new what they did for a living, or what their hobbies were, we asked them what music they listened to. And that was when it hit me. I never should have gotten rid of that box. Not because *I* need to someday take out those albums and relive those memories, but because someday *my son* should be able to dig in that box and discover it for himself. When I was a kid I used to love looking through my mom's record collection. The cover artwork alone told a story. A story of a different time, a time that I never knew. A time when my mom and dad were young and rebellious and listened to music that reflected that. Songs by musicians like the Doors, the Mamas and Papas, Donovan, Simon and Garfunkle, Janis Joplin, the Beatles...I can still see the record covers in my mind. One of my favorites that I discovered much later at my grandparents house was a Velvet Underground album that still had the banana unpeeled on the cover. Over time it had gotten cracked and I could see that the banana underneath was an intense fuchsia. There was such a deep sense of mystery about this album. This was weird stuff, intensely different than anything else I had heard. It was awesome. The music fascinated me. This wasn't the eighties pop music I had heard on the radio like Madonna's "Material Girl" or Cyndi Lauper's "Girls Just Want to Have Fun", this was something much deeper. I spent many hours listening to those records and memorizing everything about them, including most of the lyrics. On long road trips in our old, crappy Volkswagen Vanagon that was never warm enough and only had a half-assed radio, my mom would ask me to sing those songs to her. Sometimes she would listen as I sang, sometimes we would belt it out together. Sometimes she would ask me for songs I didn't know, and later I would find them and memorize them so that we could sing them together. As I developed into a teenager I began to discover my own music. Music that was even deeper, and that was much darker and often angrier. Music by artists like the Cure, the Violent Femmes, the Pixies, Jane's Addiction...music by pissed off women like Tori Amos and Sinead O' Conner. Music that reflected my own emotional experience. Again I spent hours staring at album covers, memorizing lyrics, becoming absorbed in the meaning behind the music. My friends were people who shared this love of music and who introduced me to their favorite stuff. We made mixed tapes for each other, weaving songs into story that said "I love you, I get you, we'll always be friends". I think that making mixed tapes for people was the prelude to my later obsession with filmmaking. I spent hours and hours planning out the tape, picking which song would lead into the next and carefully hitting play and record at the same time. If I messed up I had to do it again. And I had to listen to each song in real time, it wasn't just drag and drop like it is now. I listened to each song in real time, planning out what went next and how to match it perfectly to my message, and when I gave it to my loved one, they had to listen to it in the order that I gave it to them in. Not only that, but there were two sides to it. So one side could represent one emotion and the other another. It was a build-up. There was intention behind it. It was an art form. Later I would get the same feeling editing my movies. The exhilaration of how one shot met with the next to evoke that feeling or communicate that concept was the same feeling I had when I made a mixed tape, with the added benefit that I could create the message to begin with. And of course there was the visual component too. It was a lot of additional layers, but at its core, for me, filmmaking is just like making a mixed tape for a good friend. But now all that is gone. If I want to listen to a song I can just type it in and listen. I don't have to listen to the rest of the album. I rarely bother to look at the album artwork or to read the lyrics and ponder the deeper meaning behind the song. The last time I gave someone a mixed cd, they just imported it into their laptop and added the songs to their music collection. Whenever they bothered to listen to it, it was out of order. I was devastated and haven't made a mixed cd since. That was over ten years ago. I recently made a spotify playlist for my mother-in-law to play while she was going through cancer treatment. It was the first time I had put music together for someone in a long time. It wasn't exactly the same as making a mixed tape, but there was definitely an echo of the feeling. Shortly after, my husband and I began putting together a playlist for the upcoming birth of our next baby. Again it evoked those similar feelings of joy that I remember from making mixed tapes back in the day. I am slowly coming to terms with what the changes in technology has done to the art forms we had built around the old technology. It is not the same, and I definitely have a nostalgia for the old ways of doing things, but it's good in its own way. If I could turn back time, I would keep that box of cds. But there is no way to get it back now. That box is gone forever, and lives only in my memory. I want my son to be able to have the same joy of discovery that I had when digging through my mom's record collection. I want him to experience that same realization that his mother is more than who he knows now, that she has an interesting past, a time before he was born when she was maybe sort of cool. I have debated trying to rebuild my collection. In my fantasy world I will go to thrift shops and record stores and get back all of the albums I used to have. Only this time it will be on vinyl because that's even cooler... But most likely I won't have the time or money for that. I'll be too busy with the new baby and working freelance projects to spend hours digging through music. In the end, I might just have to make due with making my son a playlist...it's not the same as a collection, but it will have to do. We have some news about our baby that we would like to share with you. Our baby has Down syndrome and a heart defect. This was scary news for us to get, and it’s taken us awhile to process it. Fortunately we live in an area that has a lot of resources for parents like us, and we’ve been able to connect with other parents who have been through this. We still don’t know exactly what to expect, but we have a much better idea now. In many ways our baby will be the same as most babies. It will be cute and cuddly and need lots of love and attention. It will sit up, crawl, walk, talk, go to school, read and write, learn lots of things and eventually grow up to be an adult. The differences will be that our baby will need extra time, help, and open-heart surgery at 4-6 months. The heart defect is called an AV canal defect. This is a common defect, especially with babies that have Down syndrome. What it means is that the heart is not separated into four chambers, but is open in the center due to a missing valve. Otherwise the heart functions normally. Eventually this can cause the freshly oxygenated and depleted blood to mix, and can put more pressure on the lungs, potentially causing damage. Thankfully there has been a surgery to fix this type of defect since the 1950’s. We have a great children’s hospital right near us in Denver with experienced surgeons that have done lots of these surgeries, and the surgery has a 98% success rate. Most likely once our baby has the surgery the heart will be repaired for life. In addition to heart defects, there are other health problems that are common in children with Down syndrome. Whether our baby has these problems and to what degree we won’t know until we get there. Again we are lucky to live in an area with great support and resources for parents of children with Down syndrome. At this point we do not want sympathy, but we do want love and support. You can support us by learning more about Down syndrome, staying positive and congratulatory, and recognizing that we might need extra help along the way. Visits are encouraged! Come get to know our baby, give us a little support and Caspian the extra attention he will most likely need. Here's a short video of Caspian explaining what Down Syndrome is to my niece Lily. He gets some of the facts slightly wrong (it is a difference between 46 and 47 chromosomes, not 36 and 37, and the soft muscle tone is called hypotonia) but otherwise he explains it beautifully, and I love the acceptance and ease with which my niece receives the news. Here are links to some resources for you to find out more about Down syndrome and the AV Canal Defect:
A great booklet for loved ones of someone who has received a Down syndrome diagnosis, I highly recommend you take a minute to look through this, it will likely address some of the feelings and answer some of the questions you may have Information on the AV Canal Defect Information on the Buddy Walk, a walk to support Down syndrome This is a mile long walk that takes place all over the world to support Down syndrome awareness. Consider signing up for one near you, it would mean a lot to us. Here are some good videos on Down syndrome: Caution, this video might make you cry: “Dear Future Mom” “Just Like You” - Teens with Down Syndrome and their best friends talk about what it's like “Tim’s Place Albuquerque: Service with a Smile” - An adult with Down syndrome serves up hugs and meals, if you're in Albuquerque make sure to stop here for lunch There are many more resources to check out, but those should get you started. Our due date is August 14th, though the baby could easily be born at any time in August, so please don’t rush us as the due date nears, we will let everyone know when the baby is born. We're very excited that we have been given the go ahead by the cardiologist to have a natural birth, and we've found a great option with great medical care on hand. We will be delivering with Boulder Nurse Midwives at the Boulder Foothills Hospital Birth Center. This is one of the most progressive hospitals in the country. If the baby does need intensive care, we will simply be moved to a family suite with a special care nursery attached, allowing us to stay close while the baby receives specialized care. (Most hospitals whisk the baby away to another floor, and the parents are only allowed to visit, so we feel so lucky to have this option available to us.) We are not finding out the gender until the baby is born, so it will be a surprise. Feel free to put your bets in now, you've got a 50-50 chance of being right. Thanks for your support and understanding, Taymar, Max and Caspian I'm 30 weeks pregnant and I love it when people not only acknowledge that I'm pregnant, but marvel in the miracle of it by touching my belly and talking to the baby in there. I have a message for the pregnant women who have expressed discomfort at people wanting to touch their bellies: GET OVER IT! You are about to have strangers sticking their hands up your vagina and you're worried about someone touching your belly? Seriously, relax. Stop ruining it for the rest of us with your petty complaints. Saturday I arrived at a barbecue around the same time as another pregnant woman I know. We joyfully rubbed our bellies together while encouraging our babies to say hello. It was awesome! And it made me realize that because of the outspoken backlash of those few people who find having their bellies touched uncomfortable, I haven't gotten as much belly love as I would like. I appreciate your desire to be polite, but ignoring the miracle that is going on in front of you is a sad state of affairs as well. I know that nobody wants to be in the awkward position of assuming someone is pregnant who turns out to just be fat, but I am enormous and people are still acting surprised when I mention that I'm due in a few months. Really? You thought that was just a beer gut? Come on people, if my belly is that big and I'm *not* pregnant, we've got bigger problems here than a minor social faux pax. I've traveled quite a bit recently and been disappointed that nobody has offered to help me as I've struggled with getting my bag up and down from the overhead compartment. This sucks. Being pregnant is so uncomfortable and the only upside is that people should be nicer to you. The next time you see a pregnant person struggling, offer to help. And yes, there are people who don't like to have their belly touched, it's true, but they're not the only pregnant ones out there. So if you want to touch a beautiful bulging baby in a belly, just ask, because there's also people like me, who will appreciate the attention. |
Archives
April 2022
AuthorSince becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy! Categories
All
|