Welcome to Fabulous with 47
This is August. August's arrival was full of surprises and many of these surprises were even more difficult for me to understand after having two totally typical pregnancies and deliveries. My water broke at 33 weeks, during my week of waiting for induction I was first informed of the possibility of a diagnosis of Down syndrome after his ASD/VSD was found, during induction, I had a placental abruption, which led to an emergency c-section and one week later, the doctors confirmed that August had Down syndrome. The week between his birth and the getting the chromosomal test results, I told myself that he did not have Down syndrome. After all, no one in my family has ever had a developmental disability, I was 24 with a 1:1400 chance of having a baby with Down syndrome, and I already had two healthy boys. This would all be a story to tell later on in his life and nothing more. My husband dealt with it differently, he assumed that August had Down syndrome and dealt with it over the next week before getting the results and let me say, if I had to pick one of the two strategies, I would say he held up much better in the geneticist's office. My first questions after receiving the results from the geneticist were "Will he ever get married? Will he have a family of his own?" I could tell that I was not the first to ask such questions and the geneticist told me things that did not enter my mind when I heard Down syndrome a week before. People with Down syndrome are graduating from high school and college, they are living independently and they are getting married and leading fulfilled and productive lives. That was what I needed to hear and now I realize, after talking to many other parents about this experience with the geneticists, doctors and nurses who "helped" to deliver the diagnosis of Down syndrome, that not everyone gets what they need at this very difficult time. The other piece of advice the geneticist gave me was to focus on health for the first year. After a year, most of the major health issues have been resolved and the focus can shift to early intervention. Auggie has had his share of health issues: a heart defect (ASD/VSD and mitral valve defect), infantile spasms, side effects from steroids, RSV and most recently, heart surgery. Now he is 4 years old and healthy and we are working on some of the learning interventions, but always keeping in mind that he is also just a kid. He will learn from his brothers and from everyday experiences like any other child and what we are working toward is the opportunity for him to lead as independent a life as possible and to feel productive and accepted. This goal is what lead to Fabulous with 47. We want to make sure that families can offer their children with Down syndrome the support they need to learn, that families have the support they need to maintain a sane family, and that society continues to make progress in accepting and embracing individuals with disabilities as productive members of society.
The highlight of my day is when I get to pick up my daughters from daycare. I am greeted with smiles and huge hugs from both girls. Karsyn’s face literally lights up like a Christmas tree when I walk into her classroom and Kennedy runs into my arms. After school, the girls usually play together in the living room. Kennedy always gathers some toys and delivers them to Karsyn. Karsyn watches Kennedy’s every move and looks up to her with complete and utter admiration. Whenever Kennedy laughs, Karsyn laughs, too. I love listening to the sound of my girls giggling in unison. As night falls, Karsyn snuggles in my arms before she falls to sleep. I get to hold her tiny body and feel her soft, cool skin against my cheek. I love both of my daughters and I wouldn’t change a single thing about either one of them.
We are a typical, ordinary family, with one small exception. Karsyn has an extra chromosome. The past year and a half has been an interesting journey for our family. We want to share our experiences with you because we know that nobody plans to have a baby with Down syndrome. You will ride an emotional roller coaster as you come to terms with this diagnosis. However, I can assure you that your baby with Down syndrome will enrich your lives and capture your hearts. We have provided a frank and candid description of our journey because it is important for new parents to know that others have experienced similar feelings and lived through similar experiences. However, it is imperative that you read this entire letter. Our story really does have a happy ending and we are anxious to share it with you! Please feel free to contact me if you would like to connect with another family.
Erin and Justin Sloan (firstname.lastname@example.org)
Justin and I were ecstatic as we walked into our sonogram appointment. Kennedy was nearly two years old and I was convinced that our second child was going to be a boy. Our happy mood was dampened somewhat that afternoon. The technician was quite terse and there was a strange tension in the room. She didn’t say a word to us during the entire procedure. Sensing that something might be amiss, Justin asked if everything was OK. The technician told us that the doctor would review the results and discuss them with us at our next appointment. Since we knew that was standard operating protocol, we weren’t overly concerned. Instead, we focused our attention to the baby’s gender. When the technician revealed that we were having another girl, I will admit that I was disappointed. I always imagined that I would have two children; one girl and one boy. I had grown up with one younger brother and I thought it was the ideal family structure. As we drove home that day, Justin and I discussed the technician’s cold demeanor. We thought it was a little unsettling, but the OB/GYN assured us that everything was fine when we went to the follow-up appointment.
Over the next few months, Justin and I realized that there were many advantages to having two girls and we started to brainstorm names. Justin was convinced that this baby was going to be a star athlete and he wanted to make sure that we chose a name to fit that role. He would say things like, “That doesn’t sound tough enough; I can’t yell that name from the stands of a field hockey match!” We finally agreed on Karsyn, after a swimmer I had coached years earlier. Then we patiently waited for Karsyn to arrive.
Karsyn was due on June 29, 2009. Since Justin and I both work in public schools, her due date coincided perfectly with our summer vacation. Unfortunately, Karsyn showed up three weeks earlier than expected. Things were very stressful that week because it was the last week of the school year. Justin and I had to finish our grades, pack up our classrooms, and complete mounds of paperwork. I woke up at 5:00 that morning to iron and pack clothes. We were having our staff party immediately after work and Kennedy was having a spring show at her daycare later that evening. I knew that it was going to be a busy day, but I didn’t realize that my entire world was about to implode.
I was having contractions throughout morning, but I went into work to finish up some paperwork. By the time I arrived at the hospital, I was already 8 centimeters dilated. Justin arrived as they were breaking down the bed to deliver the baby. Karsyn was born shortly before 11:00 AM on June 11, 2009. When I held Karsyn for the first time, I noticed that there was something wrong with her coloring. She had a bluish hue and didn’t seem to be getting any pinker. After a few minutes, the nurse took Karsyn out of the room. When she left the room, I remember Justin saying, “Did you see her eyes? I think there might be something wrong with her.” I guess I was in a lot of pain at that point, because I never noticed her eyes.
I was still in a lot of pain when the neonatologist entered the room a few minutes later. She was a young doctor without a shred of human compassion. In a very matter of fact voice, she said, “A cardiologist did an echocardiogram and confirmed that your baby has a hole in her heart. We also suspect that she has Down syndrome, but we will need to do some additional blood work. Would you like the baby to be transported to the NICU at Johns Hopkins, Children’s National Medical Center, or Georgetown?” My brain literally went blank and I thought that the young doctor was mistaken. As a speech pathologist, I had worked with children with Down syndrome and I had taken numerous special education classes. I was sure that there was nothing wrong with my daughter.
The hospital was anxious to get rid of Karsyn. When I finally got to see her, she was receiving oxygen through a nasal cannula. Her oxygen levels were constantly fluctuating and warning alarms were beeping every few seconds. One nurse walked over to check Karsyn’s oxygen levels, but nobody interacted with her. They never asked for her name; the tag on the bassinet said Baby Girl Sloan. I was allowed to touch Karysn, but I wasn’t allowed to hold her. Our friends came to the hospital that afternoon to support us, but nobody knew how to react. They wore the expressions of pity that were more appropriate for a funeral. Suddenly we remembered that Kennedy was still at daycare. When Justin left to pick up Kennedy, I had a few minutes of quiet time with Karsyn. Her eyes were open and I got a glimpse of her personality that day. Something in her eyes told me that this baby was a fighter. My parents arrived a few minutes before the ambulance took Karsyn away. We each had a chance to kiss her little forehead before she left. It was scary to send her off in that ambulance, but I sensed that she would be OK.
That was definitely the loneliest night of my entire life. I took my doctor’s advice and spent the night in the hospital. Justin and I spent hours reading about Down syndrome. The research took my mind off of the fact that our baby was hundreds of miles away at Children’s Hospital. During the night, I could hear the other babies in the hospital crying and I was very emotional. I think that the nurses either forgot about me or they were avoiding me. Nobody came into the room to check on me unless I rang the buzzer. I couldn’t wait to get out of that hospital the next morning. As soon as I was discharged, my parents, Justin, Kennedy and I drove to DC to be with Karsyn. We were very fortunate because my brother and Kristine had arrived at Children’s Hospital earlier that morning. They were actually the first people who got to hold Karsyn. Karsyn’s feisty personality became even more apparent during her stay in the NICU. After five days in Children’s National Medical Center, they said we could take her home.
When we came home from the hospital, terror and panic set in. The geneticist at Children’s had given us a book about babies with Down syndrome. The book described various medical conditions that are commonly associated with the syndrome. Since the list included everything from hearing loss to leukemia, I braced for the worst. We already knew that Karsyn needed to have open heart surgery to repair the gaping hole in her heart. We didn’t know what other medical complications would follow. Justin and I did not know if we could meet all of Karsyn’s needs without help from our families. Since all of our relatives live in PA, we don’t have much support in Maryland. I applied for a job in PA and Justin started filling out applications online. During this time of upheaval and uncertainty, I was becoming a recluse. I didn’t want to talk to any colleagues or acquaintances. I felt awkward around people because I thought that people were judging me and Karsyn. I didn’t know how people felt about Down syndrome. I didn’t want to go out into public places because I thought that people were staring at us. For me, it was much easier to stay inside and avoid all public contact.
Justin, on the other hand, used work as a way to escape. Spending time at work allowed him to lead a normal existence in a Down syndrome-free environment. He needed time to adjust to the reality of Karsyn’s diagnosis. From the get-go, Justin had it in his head that his girls would grow up doing athletics, academics . . . everything together (like Jake and Elwood from The Blues Brothers). Once Karsyn’s diagnosis was confirmed, the nice, little portrait he created in his head was gone, and he didn’t know how to feel about it. The time at work was invaluable to him because it gave time to think and adjust.
There were times when I looked at Karsyn and saw the Down syndrome features, but there were times when I thought she looked perfectly ‘normal’. When I took pictures of Karsyn, I often deleted the ones which highlighted her Down syndrome features. In fact, I was still telling myself that the doctors had made a terrible mistake until we received the results of the genetics test. From that point on, my denial was replaced by intense feelings of guilt. I knew that the chromosomal mutation had occurred at the moment of conception. However, I still thought that it was somehow my fault. Maybe I should have eaten healthier foods. Maybe I shouldn’t have used my laptop during the pregnancy. I thought that I must have done something wrong to cause this genetic mishap.
Justin and I were pretty overwhelmed in 2009. We were full of pessimism and despair. We wondered how Karsyn’s diagnosis would impact Kennedy. We wondered who would take care of Karsyn when we died. At that point, we didn’t think that Karsyn would ever live independently, hold a job, graduate from high school, get married, or participate in any extra-curricular activities.
I didn’t get much sleep that summer. Karsyn was sleeping in a bassinet in our room and I was constantly checking to make sure that she was breathing normally. When Karsyn was 10 weeks old, it was finally time for her heart surgery. On August 29, 2009, eleven of Karsyn’s relatives (the three of us, my parents, Justin’s parents, my brother and Kristine, and their children) sat in the waiting room at the Children’s Hospital of Pittsburgh praying for the successful repair of the holes in Karsyn’s heart. Once again, Karsyn showed her true grit. The nurses called her the star patient because she made a very speedy recovery. She spent less than 24 hours in CICU before being moved to the ICU. Four days after the open heart surgery, Karsyn was released from the hospital.
The surgery was a huge turning point in our lives. Until that point, there was one question that kept looming in my mind. Why did this happen to us? Our time in the hospital really put things into perspective. When we were waiting to have Karsyn’s pre-op blood work done, there was a little bald girl in the waiting room. I realized how lucky we were to have a healthy baby. There was another family in the waiting room of CICU whose son was in critical condition. We overheard them saying that his body was starting to shut down. A priest was called in as the boy was rushed into emergency surgery on Saturday morning. After seeing those other children, Karsyn’s Down syndrome diagnosis seemed pretty trivial.
The surgery also showed us how many people were supporting us in this journey. The teachers at Patuxent High School collected money to pay for our meals, travel expenses, and parking expenses at the hospital. My mom and a few of her friends prepared meals for us to eat between trips to the hospital. Like the ending of It’s a Wonderful Life, the entire community pulled together to support us during Karsyn’s surgery.
When Karsyn was approximately 6 months old, we were fortunate enough to meet two other families in our area who had children with Down syndrome. Colleagues from work introduced us to Catherine and Howie. Their son was only 3 weeks older than Karsyn and he also had Down syndrome. It was amazing to get together with another family who shared all of our hopes, fears, and concerns. Catherine and Howie were the ones who convinced us to go to Kennedy Krieger to get an evaluation and they gave us tons of other great advice. We met another family at the Christmas light display at Ann Marie Gardens. Their 6-year-old daughter opened our eyes and gave us a great deal of hope for the future. This beautiful little girl with long, blonde hair was mainstreamed in a regular Kindergarten class!
I thought it would be fun to host a little carnival on Karsyn’s first birthday to help us meet some other families in the area. We reserved a picnic pavilion at Cove Point Park and ordered a few carnival games. When Justin became involved in the carnival, he took my little idea and made it grandiose. He thought it would be even more fun if there was a DJ, a fire truck, pony rides, and a moon bounce. When our friend Allen became involved in the carnival, it went to a whole new level. Allen wasn’t satisfied with any of the games that I had purchased, so he and Justin spent months building elaborate carnival games in his driveway. That spring was the second time that our entire community pulled together to show their support for Karsyn. Many local businesses donated prizes to the carnival. Students from Patuxent High School made posters and painted all of the carnival games. Several student organizations volunteered to help out on the day of the carnival. Our daycare volunteered to coordinate a sing/dance-along. When Karsyn was born, we had so many fears about the public’s opinion of our daughter. As we planned for the carnival, we realized that those fears were a reflection of our own insecurities. The carnival taught us that the community genuinely cared about children with Down syndrome.
The carnival gave us an opportunity to come to terms with Karsyn’s diagnosis. When Karsyn was born, we were hiding in shame. On Karsyn’s first birthday, we proudly celebrated her life by hosting a public carnival to raise awareness about Down syndrome. We distributed books and pamphlets in an attempt to educate the community about Down syndrome. However, the most important people that we educated that day were our families. Twenty four of our relatives came to Maryland to help out on the day of the carnival. My parents, Justin’s parents, my brother, Justin’s brother and sister, my grandparents, aunts, uncles, and cousins all attended the carnival. They came from Texas, California, Minnesota, and Pennsylvania. For many of them, it was their first real exposure to children with Down syndrome. They got a chance to see children with Down syndrome running, playing games, and having fun. That experience really changed everyone’s perceptions about Down syndrome. Until that point, many of the relatives didn’t know what to expect from Karsyn. Many of them were still a little apprehensive about her. However, the carnival showed them how “typical” Karsyn’s life would be. Karsyn is very lucky to have so many supportive family members in her life.
In September of 2010, Catherine invited me to attend a DownsEd International conference. The two of us drove to Atlanta, Georgia for the conference. There were break-out sessions for speech/language, literacy, numeracy, and behavioral/social. All of our break-out sessions were specifically designed for children under the age of five, so it all applied directly to Karsyn’s developmental level. We saw videos of four and five year olds reading and I realized that Karsyn could, too, as long as we used the right instructional techniques. The final presenter for the conference was a psychologist who had a 40-year-old daughter with Down syndrome. She explained that she had under-estimated her daughter’s abilities when she was growing up. It wasn’t until after her daughter moved out on her own that she realized how much her daughter was able to do. She regretted the fact that she hadn’t given her daughter more opportunities to do things independently. When her daughter moved out on her own, she did things that her mother never dreamed were possible. I vowed that this would never happen to Karsyn. We now view Karsyn’s future with optimism. She will be able to do everything independently as long as we give her the tools to succeed and the opportunity to try.
We are on the e-mail list for a local Down syndrome group called Angels Forever Up. In early October, a little boy with Down syndrome passed away at the age of 6. I had only met Landon and his mom once. They came to our house for a lunch gathering in August of 2010. Landon had been battling cancer for three years at that point, but his mom was amazing. Despite years of hospital stays, radiation and chemotherapy, she maintained a positive attitude. She never mentioned Landon’s treatments, his illness, or any of the hardships that they had faced. Instead, she talked about how happy and sweet Landon had been throughout the entire ordeal. Justin and I attended Landon’s memorial service to pay our respects. I don’t know exactly how many people attended the service, but I know there were hundreds. We stood in line for about 10 minutes to sign the guestbook. As we waited in line, there was a slideshow playing on the TV monitor. The home videos of Landon playing with his sister were heart wrenching. Each one reminded me of my own kids and I realized how lucky I am to have two little girls. I try to put my work and stress aside sometimes to enjoy a few minutes with each of my daughters. You never know what the future has in store, so you have to make each moment count.
After attending the DownsEd conference, Catherine and I thought that it would be beneficial to start working on the kids’ speech on a monthly basis. We also wanted to include Wendy and Eddie. They were another local family who had a daughter with Down syndrome. In October of 2010, we had our first home therapy session. Three babies with Down syndrome sat in a row of high chairs in my living room. It was adorable. There was some occasional hair pulling, but they really seemed to enjoy spending time together. We spent a little time working on the kids’ speech and the rest of the time hanging out. Now we get together each month to share ideas, ask questions, etc. I think it will be fun to watch the three of them grow up. Last month Riley had just learned to sit up and August had just learned to crawl. It is exciting to share these developmental accomplishments during the therapy group. We wouldn’t have met these families if it weren’t for Karsyn’s diagnosis. I have a feeling that we will meet many more friends in the future through the Down syndrome community.
I am not going to lie and say that everything in our lives is picture perfect. There are a few disadvantages to raising a child with Down syndrome. There are times when I feel a little jealous as I watch my nephew (who is 3 weeks younger than Karsyn) run, climb, and jump. I know that Karsyn would like to run and play with him, but her mobility is still limited. All we can do is work on her crawling and hold on to the belief that Karsyn will walk in the future. Raising a child with Down syndrome also creates some additional responsibilities. Our calendar is full of therapy appointments, medical appointments, IEP meetings, etc. Since Justin and I both work full time, it is not always easy to juggle the demands of home and work. We miss quite a bit of time from work. After work we often feel guilty because we know that we should be spending more time on Karsyn’s therapy, but there aren’t enough hours in the day. I wish that my parents lived closer because they do a better job of making Karsyn’s therapy the top priority.
In spite of these challenges, Karsyn has made me a better person. I have been a speech pathologist for 12 years, but it was just a job. I never understood parents’ perspectives or their feelings. I didn’t understand why the parents asked so many questions during IEP meetings. I didn’t understand why they were always pushing for additional services. Since Karsyn’s birth, my entire outlook has changed. I am more patient, I listen, and I honestly believe that all students can benefit from services as long as the parents and the special educators are committed to working together. I also have a greater respect for parents who advocate for their children.
Justin and I are anxious to see what the future holds for our children. We want them both to lead happy and productive lives. We hope to see them each find a fulfilling job, get married, and live as independent adults. It took almost 2 years, but we now believe that both of our girls will achieve this goal.
Advice to new parents:
1. DO NOT read any medical books about Down syndrome until your baby is at least 3-4 months old. Medical books contain useful information, but they are very factual and depressing. Now is a better time to read personal books like Gifts or watch videos such as Deedah. You might also want to share these resources with your extended family members because they probably share your questions and concerns.
2. Start therapy as soon as possible. Contact the Infants and Toddlers department in your county. We take Karsyn to Kennedy Krieger once a month for physical therapy. It is a two hour drive to Baltimore, but the physical therapist (Rhonda Stallings) specializes in treating kids with Down syndrome. She is incredible.
3. Find a local family with a baby with Down syndrome. We were very fortunate to have met two families in our county. Our monthly get-togethers have been tremendously helpful. Find a way to get involved in the Down syndrome community.
4. Take things one day at a time. The first year will probably be an emotional roller coaster. In the long run, however, a child with Down syndrome will become an integral part of your family. As long as you open up your heart to this child, he or she will make you a better person and make your family stronger.
5. Watch some Signing Time videos and start learning some sign language. There is a really great song at the end of volume 6 (My Favorite Things).
6. Instead of looking at Down syndrome as a negative diagnosis, look at it from a positive perspective. You can’t change the situation, but you can deal with it. It’s like being thirsty, and instead of getting cold lemonade, you get a handful of lemons. You could sit around and mope about being thirsty or you could make the lemonade yourself. It’s not about how you react to having a Downs child that matters; it’s what you do that really counts.
Suggestions for first things to do...
1. Enjoy your new baby.
This may seem impossible. You have so many things to research and read and the more information you have the better, right? Not entirely. It is certainly important for your own peace of mind to learn a few things about Down syndrome like resources near you, how to contact the Infants & Toddlers program, and anything that is relevant to your baby's current health status. What is usually not productive is to read ENDLESS lists of possible health complications and ranges of ability. Your new baby will only be little for a short time and like any other baby, your baby is just as sweet and amazing so take a break from all the books and the google searches and spend time with your new son/daughter.
2. Send your information in on the contact page so that we can send you out an information package for parents new to the Down syndrome community.
3. Read the letters from local families (located in the left column) about their experiences and feelings in the first days/weeks/months of their child with Down syndrome's life.
4. Read "Road Map to Holland" by Jennifer Graf Groneberg. Getting a diagnosis like Down syndrome often brings out some very unfamiliar feelings for families and these feelings are not easy to talk about and cannot always be understood by those who have not been through the same situation. In this book, Jennifer Graf Groneberg gives birth to twins, one typically developing and one with Down syndrome. She is extremely honest about all of the feelings that she had throughout the first two years and it can be helpful to have someone/something to validate your emotions during this difficult time.
5. When you're ready, get in contact with some other families locally that have a child with Down syndrome. If you need someone to talk about your feelings or what you and your husband/boyfriend/significant other are going through together, other families can be a very good resource. It is also helpful to meet older children with Down syndrome and see how wonderful they are and how SIMILAR so many things are to typically developing children. They are more alike than different.
6. Check out this website: http://downsyndromepregnancy.org which was created for expectant parents who have made the decision to continue with the pregnancy, but would also be helpful for new parents. They have a free downloadable e-book that is very thorough and informative as well as a blog.
7. Check out these informational e-books designed for new and expectant parents at the Down Syndrome Information Alliance (DSIA) website: http://www.downsyndromeinfo.org/resources.
Click below to download the letter from Reily's parents