Dear Doctor: It’s Time For A Better Diagnosis

I could not sleep last night. And it wasn’t because of the kids. It was because I was and am deeply troubled. It’s not the first time, and sadly it won’t be the last. I cried in the car after I dropped Rachel off from school thinking about it. And when you feel mental and emotional unrest about something, eventually you need to do something. So today, I am doing something. It’s not much. But here it goes.

Yesterday, I became aware of another local prenatal Down syndrome diagnosis story. I hear these a lot, obviously, as I am involved in our local parent advocacy group and GiGi’s Playhouse Annapolis. Stories from years past and present. Stories that so very often mirror my own experience. The same phone call from the doctor’s office: “your baby has/most likely has Down syndrome.” And almost as quickly, the question: termination or continuing the pregnancy. In my case, I was asked by the provider IMMEDIATELY after the diagnosis statement, “what are your plans for termination?” Plans for termination. My son’s life was just assumed to be unwanted and worthy of throwing away. Can you imagine how that feels? And imagine hearing from so many women the same kind of story.

Doctors, it’s time. It is time for a better diagnosis. This is not a pro-life or pro-choice argument. This is simply about QUALITY OF CARE. This is about being PRO-INFORMATION, providing information that is up to date, based on evidence. This is about providing patients with resources, maybe a little reassurance, and maybe, just maybe, a little bit of hope. I’m not electing to remove the choices. Regardless of how I personally feel about abortion, the reality is that we live in a country where you are supposed to be given a choice. An informed choice. The American College of Obstetrics and Gynecology has practice guidelines regarding recommendations for prenatal testing. You can view some of them here:

https://www.google.com/amp/s/prenatalinformation.org/2016/04/29/acog-issues-new-prenatal-testing-guidelines/amp/

What  I find alarming is this statement regarding post-diagnosis counseling: “Referral to parent support groups, counselors, social workers, and clergy may provide additional information and support for some parents.” All parents should be offered access to other parents. And not on some social media group. In person, a phone number, a website. There are a plethora of resources, both local and national. Organizations whose entire mission is to improve the diagnosis experience of parents and connect them with other parents, whether they plan to terminate or not. I get it - some people hear Down syndrome and run for the hills.  But I have to believe that the abortion rate of Ds pregnancies in this country which is estimated recently to be around 67% might be less if people really knew what having a child with Down syndrome is truly like. If they knew that research shows that families with children with Down syndrome report that they are very happy, including siblings, and that people with Down syndrome report that they are happy with their lives, would it matter? If they knew that research and early intervention for children with Down syndrome is bountiful, that the life expectancy, potential for education and work and independence and marriage is a real part of life for a person with Down syndrome today, would it matter? I have to believe the answer is yes. Otherwise, I wouldn’t be working so SO hard to advocate like this. But it starts in the Doctors Office.

Doctors, I am a medical professional. I have nothing but reverence for you. I have been in those conversations with patients: you have Parkinson’s disease; you have Alzheimer’s disease; you have spinal cord injury; you have cancer. Being a medical provider is extremely hard, and I am in no way vilifying the obstetrical community. I understand that what you say and what a patient hears are not always exactly the same thing. My doctors that took care of me while I was pregnant with Mark were amazing. They prayed with me in the office. They encouraged me to reach out to the parent group that I am now a part of (although I was not actually given a person or point of contact.) But this was after I made my choice, after I ignored what that doctor said when she threw Mark’s life away before she even gave me an option to keep him.

This is Mark. The Mark I knew when I was pregnant. The maybe medically complex, maybe going to be still born, maybe never going to be happy, maybe going to have a hard life Mark. Pictures. An imaginary person and imaginary life. This is the Mark I know now. The Mark I knew when I held his living, breathing, pink little body in my arms in a hospital in Baltimore. The Mark who walks and talks and brings joy to every single person who meets him. This is my real life. Yes, I have different concerns than you do with your healthy, typical kids. But, overall, they are largely the same concerns, the same dreams, the same kind of love.




Dear Doctor, this is Mark. We are the Bakers. We are happy. We are grateful. We are living our dreams and making new ones. There is so much hope today. Let’s give people the appropriate information and resources from the get go. From the phone call. It starts in your office. It starts with you.

Three Affirmations for a Special Needs Parent

It’s hard to know where and what to start sharing when your whole life feels like it has been moving at the speed of light. Sometimes it is hard to remember what you did yesterday, let alone where or perhaps more importantly WHO you were six months ago. Our family has been through a lot of changes in that time. I went back to work part time in a new specialty and recently discovered that being home with the children was where I was truly supposed to be; Rachel started her first year of preschool; Mark hit new milestones and has lagged behind in others; we bought our first home and moved; we started new therapies and met new challenges on our journey with Down syndrome. Left out of that list of events are the details – the moments of joy, laughter, sadness, regret, happiness, questioning, worry, more questioning…more worry. These are feelings that all parents go through at different times on their parenting journey. But for those of us who have children with special needs, the highs and lows can certainly be more emotionally draining. The worry about the future, the questions about whether or not you are doing enough, giving enough, BEING enough for your children can be a heavy burden. Having lived through lows like these recently, I can say that I have learned a lot about myself, my family and how I can be better to me on a more regular basis.

Here are three affirmations that I am reminding myself of everyday in order to help me get through the daily grind of being a parent, and particularly a parent to a child with special needs. Just three of these everyday to help me get through those difficult moments. I hope that they help you too.

Today I am going to do the best that I can my family.

Be confident every morning when you get out of bed that today you are going to do your best and be at peace with that no matter what the day brings or how events unravel. It sounds simple. And I feel confident that most of us can say that we do go out and do the best that we can for our family every day. However, I know that sometimes I get home and feel like I just didn’t do enough. I feel like I could have done better. And those feelings of doubt are powerful, and they can create feelings of anxiety and worry that can be destructive. Could you have done better? Maybe or maybe not. But at the end of the day, you tucked your kids into bed and they feel cared for and loved. If you were late to a therapy appointment or got frustrated because of another set back, it is ok. The most important thing is that you did the best you could for that day. Tomorrow is another one.

Today I will give myself a break.

This one plays to one of my greatest strengths and weaknesses, and it may be one of yours too. I am way too hard on myself. With everything, but perhaps most especially what I am doing as a parent for my children – both our son with Ds and our neurotypical daughter. Over the past month, I have been told “you need to give yourself a break” by more people than I can recall. In fact, our new special educator from the county Infants and Toddlers program specifically wrote in our list of things to work on, “Give yourself a break mom! You are amazing.” Thank you, Brooke, I really needed that. And she is right about me, and she is probably right about a lot of you reading this. It’s okay to not do it all. It’s okay to take a mental break. It’s okay to just exist in the moment and stop caring about milestones or the future or how people perceive your child with special needs. Yes, we all grapple with these issues more frequently than many of us care to admit. But today, tell yourself that you are going to give yourself a break. Whatever that means for you today. None of us are perfect, and no one expects you to be.

I am the best person to parent my children.

You, mom or dad, are the best parent for your child with special needs. I know that you have probably been told before something like, “only special people are blessed with kids with special needs.” And every one of us who has a child with special needs will readily admit that there is nothing particularly special about us! And there are days that you have thought and will probably think in the future “why me? I’m not cut out for this.” But the truth is that you are. You have risen to the occasion. You have weathered more storms than you give yourself credit for. And you have loved your children more than anyone can ever fathom. You are more than enough. You are an inspiration to others. You are amazing. So start believing it today.

Stacie's Story: Love, Survival, and a Little Extra Chromosome. A Guest Post by Stacie Hansen

October is a very special month in the Hansen household. We celebrate Down syndrome awareness month and breast cancer awareness month. It’s a time for us to reflect on the past, look forward to the future, and celebrate LIFE! One year ago, I was bald and my newborn baby was living in a plastic dome. I didn’t believe in miracles. I thought God hated me. Wow, have things changed...

I had always wanted a third baby, desperately. I already had two healthy, wonderful boys but I always felt like something was missing. As I approached 40, my husband, Courtney, and I decided it was time to try for that third baby. After two miscarriages and lots of heartache, we were finally able to get pregnant via IUI on December 31, 2016. We were over the moon.  

Because of my age (39), I had to see a high risk doctor and have extra testing done. Around 14 weeks pregnant, I had a blood test (NIPT) for further screening. No biggie. My 12 week scan was completely normal. So of course I was taken aback when the geneticist called me at work with the results. The first thing out of her mouth was “unfortunately”....that word and the way she said it will never leave my memory. Her voice was shaky and she was speaking very slowly. “Un-forrrrr-tunate-lyyyy,” she said, “there’s a chance your baby has Down syndrome.” Silence. How do you even respond to that? The geneticist explained to me that my test results were odd because they showed the baby had a 51% chance of having Down syndrome, not the 99% result they usually see on this test. I felt like I was dreaming. I knew Down syndrome wouldn’t change my love for my child. My best friend has a special needs child who I adore so I was open to the idea. But there was something about the way the geneticist delivered the diagnosis that didn’t sit well with me. Like it was something I should be sad about. My only response was, “So is it a boy or a girl?” And it was a girl! My heart was happy again. Pigtails and dresses and dancing and laughing. The future was bright.

I opted for an amniocentesis, which I know is controversial. But I wanted to make sure I had a good diagnosis so I could plan accordingly and find the best care. When the doctor was about to perform the procedure, he noticed something wrong with the baby’s heart. He said, “This baby likely has Down syndrome. She has a heart defect called AV Canal, which is common with these babies, and will require heart surgery in the first year.” What?? I went completely numb. I knew I had to stay still for the procedure so I just completely zoned out and focused on the ceiling tiles. Courtney was silent too. When the doctor was finished, Courtney had to go back to work and he left in a daze. I got into my own car and completely fell apart. I called my best friend and screamed and cried. I was angry. I was devastated. I was mourning the healthy child I was supposed to have. I went into panic mode for a good 24 hours.

Two days later, the amnio results came back positive for Down syndrome and no other disorders. I breathed a sigh of relief. I had come to terms with the Down syndrome diagnosis and even the heart issue at that point. I found loads of information and support groups online. I started to feel really good about being a special needs mom, like maybe this was my purpose in my life. I hosted a gender reveal party and the boys got their wish of a baby sister.

At about 28 weeks pregnant, things started to change. The baby wasn’t growing as much as she should have been due to the umbilical cord starting to deteriorate. I found an OB at Johns Hopkins who specializes in babies with heart conditions and she kept me closely monitored in the following weeks. At 33 weeks, a scan revealed the umbilical cord was in really bad shape. I was whisked away to Labor and Delivery to be monitored around the clock. I was in shock. We hadn’t even picked out a name yet! We were scrambling to get grandparents and neighbors over to watch the boys. It was craziness.  

Two days later, on August 6, 2017, Miss Skylar Renee was born via emergency c-section. I didn’t hear her crying at first and I wept and wept. I could hear people rushing around and I was terrified something horrible had happened. Then I heard it.  The tiniest little kitten cry that made my heart explode into a million pieces. She was okay! The NICU team rushed her out of the operating room so I didn’t get to see her in person but a nurse kindly took a picture with my phone. I could not believe how beautiful she was. Wow. A stunning little 3 lb 14 oz baby girl.  

I was in the recovery room for a few hours before the nurses finally wheeled me in my hospital bed to the NICU so I could see Skylar. It wasn’t the beautiful moment you picture in your head, where you’re holding your baby for the first time while staring lovingly into her eyes. Nope. Skylar was in an isolette (or incubator, as I liked to call it) and hooked up to what seemed like hundreds of wires coming out of her arms, legs, belly button and mouth. Thank God I was on a lot of drugs because I may have lost my mind otherwise. I looked at her behind the plastic wall of her isolette, felt like I was in a bad dream, and asked to be wheeled back to my room. It was all too much.

 

It took me several days to really absorb what happened. One week prior I was working my corporate job and being Mom to my boys. Now I was in a hospital gown, unshowered for days, and staring at my baby through a plastic wall. More drugs please! It wasn’t until day 5 that I was able to hold Skylar for a significant amount of time. I remember the nurse asking me if I wanted to hold Skylar “skin to skin.” Yes Yes Yes!!! When the nurse placed her on my chest, I felt so utterly happy and content. I wanted to stay there forever. 

I settled into a little routine with the NICU. I treated it like a job. I would drop the boys off at school in the morning, “clock in” at the NICU around 10am and “clock out” around 6pm, just in time to tuck the boys into bed. We live over an hour from Hopkins so it wasn’t easy but I was hopeful Skylar would be discharged by September (wishful thinking!). I was so immersed in the NICU life that I kept having to remind myself of an ultrasound appointment I scheduled for the week after Skylar was born. It felt like such a nuisance to go to this appointment. I almost just canceled it. But I had a strange and large lump below my left breast, right at the bra line, and I knew I should probably get it checked out. It was a 1/2 mile walk to the radiology department from the NICU and I was still recovering from a c-section, but I rallied and made the trek.

Right away the ultrasound technician was concerned by the images. She called in a doctor who identified another mass in a lymph node. Then they called in Dr. Khouri, a well known radiologist. He looked at the images and put his hands on my shoulders and said, “I am really concerned by what I’m seeing. I need to biopsy you and I have no appointments today but I’m going to squeeze you in.” I felt like I was in a dream. I floated downstairs to the lobby and called Courtney and my two best friends. I cried and they all reassured me it would be ok...but I just knew it wouldn’t be.

I had the biopsy and it was thankfully painless. Two days later, Dr. Khouri called me early in the morning from his car and I already knew what he was going to say. “I’m so sorry, Mrs. Hansen. You have a malignant tumor in your breast.” He called a few days later to let me know the lymph node tumor was malignant as well. What. The. F. In a matter of two weeks, I delivered a premature baby who was being kept alive by machines and now I have cancer in two places. Really, God? Why do you hate me?

The week after my diagnosis, I met with my new cancer team - oncologist, surgeon and bunch of other people I don’t remember. It was so weird. They’re talking survival rates based on different treatment plans and I’m like - just give me the best one and let me get back to my baby. Turns out I had Stage 2 triple positive breast cancer, which only about 10% of breast cancer patients have. It’s aggressive but the survival rates are very high when caught early, like in my case. I was told I would have chemo first (that was a shocker - I’m going to lose my hair in a few weeks??), then a mastectomy and lymph node removal, then…I honestly don’t even remember. All I heard was “chemo” and I about fainted. Chemo is for sick people and I don’t feel sick! I’m only 39! My first chemo was scheduled for September 1st. I would have it 6 times, once every three weeks.

I went to the NICU immediately after my oncology appointments and I was so distraught. I knew I had to tell the nurses I had cancer but I felt ashamed for some reason. I always felt that way when delivering the cancer news. It almost felt like I was making up a lie, like maybe I was making it up for sympathy. I know that sounds crazy but the story IS so crazy that it never felt real to me. I told Skylar’s nurse I could no longer pump breast milk and when she asked me why, I broke down in an ocean of tears. “I have breast cancer.” It was the first time I said it out loud. The nurse told me about Mia, a nurse across the hall, who was recovering from breast cancer. She had Mia come over and talk me through everything. It turns out Mia also had triple positive breast cancer and the same oncologist! She was only 18 months ahead of me in treatment. She sat down with me for a long time and walked me through every step and what to expect. Talk about divine intervention. (Okay, God, maybe you like me a little bit.)

Courtney and I had to tell the boys about the cancer. I researched how to break the news but in the end, we just spoke from our hearts. We told them I had cancer, but not the kind that people die from (at least we hoped), and that we would try to keep their lives as normal as possible. We told them I would lose my hair and that was the only part they seemed concerned about. They were so little, only 6 and 8 years old, and the only part they really understood was hair loss. We tried to make a fun family activity out of shaving my head.

Skylar was almost a month old and sadly not doing well in the NICU. Her heart condition was worsening and she was going into heart failure. Her cardiology team decided she needed a procedure done as soon as she reached 5.5 lbs. She finally made it to that weight in early September and heart surgery was planned for September 15th. The surgeon, Dr. Vricella, was so kind to schedule the surgery when I was recovered from my first chemo and well enough to be there.

 

On September 15th, Skylar had a procedure done to place a band around her pulmonary artery. This would help control the flow of blood into her lungs and help with breathing and overall heart function. While it wasn’t open heart surgery, it still required opening up her chest. She was so tiny and frail. There are no words to describe saying goodbye to your 5.5 lb baby as she’s rolled off into heart surgery. I’m crying as I write this. I didn’t know if she would be okay. I just prayed and cried and prayed some more. 

The surgery took so long. The waiting was the absolute worst. When Dr. Vricella finished surgery, he came out into the waiting room and he looked exhausted. Skylar did well but the surgery was very challenging. Dr. Vricella said her heart was the size of a cherry! He had to place a tiny Gore-Tex band around an itty bitty artery. But he did it and she was recovering in the PCICU (Pediatric Cardiology ICU).

When I walked into the PCICU to see Skylar, I couldn’t believe my eyes. All the wires on this tiny being. It took my breath away. Courtney cried. I could barely look at her. We stayed in the room with Skylar as much as we could the next couple of days but we felt helpless. She was very sedated but whenever she heard my voice, she would struggle to open her eyes and it was painful. So I had to stay quiet and just watch her from afar. It was torture. She was extubated on day 2 but struggled to breathe. I watched them “bag” (resuscitate) her twice. I felt like someone was stabbing me in the heart over and over. 

Skylar stayed in the PCICU for almost two weeks to get her breathing and medications under control. During this time, I had my second chemo and both of my tumors were already melting away. The chemo was working. At least something was looking up for us.

By the time Skylar left the PCICU and went back to the NICU, she seemed like a new baby to me. I remember her looking around the room, wide-eyed, as if she was seeing the world for the first time. Heart failure had made her so sleepy all the time. This heart procedure pumped new life into her.

Skylar’s recovery was slow and steady. She had trouble gaining weight, she couldn’t breathe without oxygen, and she still needed lots of heart medication. Two months went by and I felt like our NICU days would never end. It was exhausting and I was becoming weaker with every chemo. But I was determined to give Skylar as normal a life as possible. She needed her mom. She needed to be sang to and read to. I looked into her eyes every day I was there and talked to her for as long as she could stay awake. Even though she was so small, I think she understood me. She knew I needed her just as much as she needed me. Some days she would struggle to stay awake just to hear my voice.

Those days are very dark for me. I look back on this time a I don’t even see myself. I see a shell of a woman going through the motions like a robot. You have no choice at that point. You go into survival mode. I never knew what time of day it was in the NICU. It was always so dark and quiet. I used to joke that it was like being in a Las Vegas casino - you never know how long you’ve been sitting at the blackjack table (or rocking a baby). 

 

I started to get frustrated with the doctors because I never got straight answers from them. And sometimes they would contradict each other. Thank God for the nurses who were always willing to push for answers on my behalf. I was too weak to argue. My only defense was crying. That’s how I ended up getting Skylar out of there - after 100 days, I pulled the attending doctor aside and cried my eyes out. I begged him to let us bring her home and I promised to learn how to use the medical equipment at home. And who can argue with a bald, crying cancer patient? Skylar was transferred out of the NICU to the pediatric floor just before Thanksgiving and we were almost home.

On December 1, 2017, Skylar Renee finally came home after 117 days in the hospital. All of us - Courtney, Oden, Lucas and I - drove up to Baltimore with my mom to bring Skylar home. It felt like Christmas Day. Skylar was finally going to see sunlight and her beautiful nursery. I would get to hold her all day in the comfort of our home. Our boys would finally feel like we were a family of five. 

It was completely surreal putting Skylar in her car seat and driving away. I almost felt like we were stealing a baby from the hospital. As we walked Skylar out to the car, she had to shut her eyes from the bright sky. At 4 months old, she had never seen the sky or breathed outside air. I remember being nervous as we drove home and checking to make sure she was breathing. As we drove over the Chesapeake Bay Bridge, we all said, “Skylar, you’re almost home!” 

What I wasn’t prepared for with Skylar’s homecoming was all of the “machines.” There was an oxygen machine and a feeding pump for her feeding tube. There was a home monitor that would beep at night and scare me to death. Skylar was a very easy baby, except for all the medical equipment. I felt like I was in nursing boot camp trying to juggle it all. But we got through it. Just seeing her smiling face and her loving brothers’ smiling faces made everything worth it. Our big medical goal at that point was to get Skylar to 10 lbs so she could have her heart repair surgery in 2018.

Christmas was a blur and then I had my final chemo treatment on December 28, 2017. It was so special for me to have my final treatment at the end of the year. I went into the New Year knowing the worst part was over for me. My parents took me to that treatment and we rang the victory bell. It was unbelievably emotional. I came straight home and held Skylar and cried for hours.

Three weeks after chemo ended, I had surgery to remove both of my breasts and several lymph nodes. I bounced back fairly quickly but not quickly enough. Skylar was hospitalized one week after my surgery and I was determined to be with her. She was having mystery fevers and her oxygen saturation levels were dropping, all due to her heart condition. She was in the hospital for a few nights and I stayed with her. I had these horrible drains coming out of my breasts that I had to take care of in the hospital bathroom. Gross. And I picked Skylar up a lot, which was a huge no-no from my surgeon. But Skylar always came first. Cancer was just such a nuisance to me. I was still going to the infusion center every three weeks to get targeted drugs and I never wanted to be away from her. It killed me to leave her.

Due to Skylar’s increasing heart issues, we decided to move up her heart surgery.  She was not quite 10 lbs but she was close enough. We scheduled the surgery for February 15th. I liked that she was having surgery one day after Valentine’s Day (heart day). Courtney and I decided to take Skylar to a fancy dinner on Valentine’s night and we stayed in a hotel near the hospital.

I’ve never felt panic like I did the day of Skylar’s heart repair. I almost passed out several times while the nurses prepared her for surgery. I didn’t know if I would be able to make it through the day. We said goodbye to Skylar around 9am and a nurse called me every few hours with updates. Courtney and I left the hospital for a bit and tried to keep our minds off the surgery but it was so hard. Every time I’d think about Skylar being cut open, I would go into panic mode.

The surgery was done by 4pm and the surgeon, Dr. Vricella, came out to speak with us shortly after. He said the surgery was difficult (again) because Skylar’s heart was so small - the size of a newborn’s. But he successfully repaired her heart and we felt relieved...until he said, “the next 12 hours are critical and things can change in an instant.” Oh boy. I wasn’t expecting that. The panic returned.

We went to the PCICU to see Skylar that evening. Because we’d already seen her after her first surgery, it wasn’t as shocking the second time. But it will still upsetting. She was trying to respond to my voice again. I had to stay quiet so she could get some rest. You feel so helpless in those moments. You want to stay and hold your baby’s hand but you know it will only delay her recovery. So you just sit in the back of the room and pray.

We got past those dreaded first 12 hours and I’ve never felt so relieved. My baby was doing so well! In fact, she was extubated within 48 hours, which we were definitely not expecting. She had her chest tubes and other monitoring wires removed by day 3. She was starting to wake up a bit more and we were able to talk to her. This is my favorite picture of Courtney and Skylar - he was singing softly to her and she listened to every word. It perfectly captures the love they have for each other.

By day 6, Skylar was smiling and kicking her feet AND she was completely off oxygen! Amazing. And by day 9, Skylar came home. The worst parts of heart disease and cancer were over! We were all so excited to have her home again. At that time, home didn’t feel like home unless Skylar was there. We all felt like our lives were finally beginning again. And just like in the last heart surgery, Skylar came to life during the first few weeks of recovery. She smiled all the time and started giggling. Her giggle is hysterical - it’s a bit like an 80-year old smoker from all the intubation she’s needed. I love that throaty laugh. It reminds me how awesome our life is now compared to last year. Like a rainbow after a thunderstorm. 

It has been 8 months since heart surgery and Skylar has grown by leaps and bounds. Within a month from surgery, she started eating solid foods. A few months later, she was taking a bottle and no longer using her feeding tube. She can now roll over, sit up, and is starting to crawl AND she turned ONE on August 6, 2018. What a year. Skylar is my hero. Seeing the world through her eyes has forever changed me. She is pure joy and happiness. She puts a smile on every face she meets. She’s magical like that.

As for me, I had reconstructive surgery over the summer and finished my 12 months of drug infusions on September 7, 2018. What an emotional day. It was an entire year of infusions every three weeks. All 5 of us went to the infusion center on that last day and rang the victory bell. I held it together for a happy family photo but broke down as we all piled into our car. I held onto Oden, my oldest, and we cried together. I felt like he suffered the most during the past year because he understood a bit more what was going on. We held each other until all of those sad emotions were gone. Then we all went out to lunch and cracked open a chocolate piñata for dessert. Sometimes chocolate is the best medicine.

I can finally say I’m a cancer survivor. After all those treatments and surgeries, I’m finally free. I can move on with my life and I’m certainly trying to. It’s not easy though. Sometimes you get stuck in the sadness of the past and it’s hard to move forward. Post-traumatic stress is a real thing. But I’ve never been one to dwell in my misery. And Skylar helps me. She keeps me going. She reaches out her chubby little arms for me to pick her up and I know what my purpose in life is. I was meant to be her mom. She saved me in more ways than one. She brought me to Johns Hopkins, to some of the best oncologists in the country. She kept me going on days when I didn’t think I could fight anymore. She gave me purpose and she kept me alive. I have more hope than I’ve ever had. I have witnessed so many miracles this past year that I no longer believe God hates me. Everything that’s happened was meant to happen. And I’m a better person than I ever imagined I could be. I wouldn’t change a thing about my journey.

Today, I celebrate life every single day. I say “I love you” more. I spend more quality time with my family and we laugh a LOT. We share our emotions, the good and the bad. Time is precious, you never know how much you have. Be grateful for the time you have with your loved ones. Look your kids in their eyes and tell them how special they are and how much they mean to you. Love each other like Skylar does - with abandon and with your whole heart.

Stacie Hansen is a mother of three children, two boys and a little girl named Skylar. Skylar was born with Down syndrome. You can follow Stacie and Miss Skylar on Instagram @SkootieBadoodie

The Light: A Guest Post by Laura Feiler

We’ve all had them. That tiny sliver of time when your life changes forever. That time where everything stands still and there is silence, even if it is noisy. It’s kind of like a nothingness as your brain tries to process the news. And when it does, the enormity comes crashing down. For me, that moment came just minutes after I gave birth to our second son. For the rest of my days, I will remember that moment with perfect clarity. A bunch of people murmuring around my brand-new baby as he lay on the warming table. No words of congratulations. Just whispers. My husband would eventually emerge from that group of people, his face telling the truth that he could not tell me in words. I cried out my plea, “Will someone please tell me what is going on?” And finally, someone did. They rocked my world with two little words. Down syndrome.

In those early hours, days and weeks after hearing those two words, all I did was beg for someone, anyone, to tell me that it was going to be ok. For hours in the middle of the night, I would google “Down syndrome” and read every single thing that popped up, page after page after page, seeking something I would never find there. All I saw was the hard and the unknown. And the only possibilities I saw were the scary ones. All of this made worse by the fact that this was nearly a decade ago, long before the time of social media where you could see what life is actually like for people who love someone with Down syndrome. All I had was a Wikipedia article telling me my son would have “mental retardation.”

But as those early days gave way to weeks, our baby began to unfold himself to us, to show us who he was. Our Ian. And while those google searches in the middle of the night told me about the hard, the unknown and the scary, they could never tell me about the greatest truth – his light. What they don’t tell you is that you would move mountains for this kid. That the hard is not as hard as you think it will be because you LOVE this kid.

That the hard makes you appreciate everything else. That the hard makes you appreciate the gift of the ordinary day. That this kid will make you appreciate the gift of the ordinary day. And that he will make the ordinary extraordinary because of who he is. That so much in life you thought was so very important doesn’t even matter. That he will be the answer to every big question you ever had about the universe. That you will wonder how you ever lived without his light.

Our son has this light that draws you to him. He has the power to bring joy, to give perspective, to heal. That Wikipedia article had it all wrong. None of us is the sum of our struggles. None of us. We are the sum of what we do to overcome them. How we connect and uplift. How we support and hold on and love. How we make something from the struggle, from the dark. How we find the light. 

Times of darkness only set the stage for the light. And when it is really dark, the coming of the light is redemptive. It reminds you to be grateful, to be kind. To lift someone else up. To give a hand or a shoulder or a hug. To be good. And all of that stuff, all of that good? Our Ian already knows that because of who he is. He makes you better. He makes you want to be better. He already knows the secret to life. Enjoy each day, be grateful, work hard, love without limits and live big.

And the biggest lesson of all? Our Ian is who he is not because of Down syndrome. He is not the stereotype that “people with Down syndrome are always happy.” (Because, well, who is?) To attribute the way Ian lives his life to a stereotype would take away from him, take away from who he is. He is not a stereotype. He is Ian. 

He lives his life out loud and shines his big, beautiful light. Blessed are those of us who are able to bask in it. And for all my searching for reassurance that it was going to be ok? It is not ok. It is better than ok. It is great; it is wonderful; it is life-affirming. Life is better with Ian. Life is better because of Ian. I never had a baby with Down syndrome. I had Ian. 


Laura Feiler is a wife to her husband (and best friend!), a mom of two boys (one of whom happens to have Down syndrome), a passionate educator of students with intellectual and developmental disabilities, and an advocate for the value and inclusion of people of all abilities!

To The Mommy Expecting A Child With Down Syndrome

Dear Mommy-To-Be,

I know what you are thinking. You have read something like this letter before. Maybe on another blog, in a book, or perhaps you have even heard it directly from another mother of a child with Down syndrome. If you are like the me from one year ago, you have good days and bad days. Sometimes really bad days. If you are like the me from one year ago, some days you feel that you can handle the unknown ahead of you and other days you feel like this is not what you signed up for. I want you to know that whatever you are feeling, it is OK. It is normal. It is part of the process of grieving the child that you thought you were going to have and preparing for the child that you are about to welcome into this big world.

BUT, I also want you to know that everything you have read before in letters like these - that your child will be amazing; that he or she will provide you with more fulfilment than you could ever have imagined; that you and your family will love this child and take pride in every accomplishment that he or she achieves, just like your typical children if you have them - all of those things are true.

Every single sentiment. And I can say that to you today because I am just a few days shy of one year on this journey with an extra chromosome. I can say that to you today with the experience and wisdom that you will be passing on to another Mommy who is in your old shoes not too far away from now.

One year ago today I reached my 38th week of pregnancy carrying our son, Mark. I remember leaving my 38th week OB appointment having irregular contractions and an induction date set one week later. I remember driving home to my daughter and husband feeling the weight of the past six months of my life on my shoulders. It was heavy. So heavy. The fear of what lay ahead the next week, the next few months, the next few years and even the next few decades of my life was, at times, smothering. We did not know at that time whether or not Mark would end up needing an emergent cardiac procedure after birth. We did not know what other health concerns he might face. He was, without question, a figment of our imagination. And life with Mark, or at least the life that I imagined may be in our future, was filled with uncertainty, anxiety, and fear of an unknown that was so foreign to us as individuals, as a couple, and a family.

Thinking back on that day, one year ago, brings tears to my eyes. The tears are a mixed bag of sadness and joy, but mostly joy. Why sadness? I am sad that I was so afraid of what my life with a child with Down syndrome would be like. In some ways, having a prenatal diagnosis changed the happiness that comes along with pregnancy. It is hard to feel happy when you are acutely aware of the present risks to your unborn child's health, and then you can pick up a book and read about the risks of his future health as well. And instead of daydreaming about what my child would be when he grew up, I had nightmares about all of the things in life that I thought that I would miss out on. That makes me more sad than anything.  Because, and you will learn this in time, Mommy, that your child is going to do the most amazing things, more than you could ever imagine. Yes, he or she will have challenges that a typically developing child will not have. But all children have challenges, and you will quickly find that your little baby with a little extra chromosome will be the most resilient little person that you have ever met. You will find that he or she will do most, if not all of the things that his or her typically developing peers do. And you will find out that the most important dream of a parent is to dream that you can help your child to be a happy adult who is loved, respected and valued by the members of his or her family and community. That is something that we can strive to help all of our children achieve, regardless of chromosome count.

You will also see, dearest Mommy, that when your child is almost one, you will look back and cry tears of joy. Just like me as I write this letter to you. The joy of a life well lived. The joy that comes when a parent feels pride in his or her child. The joy that comes from watching something that you have made and nurtured and loved grow into something that brings light to the darkness of the world around. There is nothing that brings me more joy than seeing my son and daughter together, playing on the ground, loving each other. And you, Mommy, will feel that same joy. Whether it is another sibling, a friend or relative, or even a stranger, you will find that this child will bring happiness to everyone around him or her.

Now, Mommy, I cannot promise you that there will not be hurdles to pass and mountains to climb.

In fact, I can promise you that there will be. I can promise you that you will have moments where you feel sad that your child has to work harder than the other children to do things that we "neurotypicals" take for granted, like walking or eating or talking. There may even be moments where you feel beaten down by yet another trial in the health of your child. And this is all in the first year of life. I've had a number of these moments. Most of the moms that I know with a child with Down syndrome have had them, some of them have had many.

Yet, I can also promise you this. The greatest gift of all is love. And I promise that you will love this child through the trials and tribulations. Through the ups and downs. You will love him or her so fiercely that nothing will stand in your way as you help him or her to navigate the world. There will be naysayers. There will be people that you can educate and there will be others who you chose to leave behind. But your village will start to rise around you, your child, and your entire family. A village that will be there to help carry you through to the other side of the mountain and down into the valley.

Mommy, I want you to know that you are loved. I love you. Every mother of a child with Down syndrome loves you. Because we know what you are going through - the pain, the uncertainty, the fear, and even the anger. However, we also know that you, like SO MANY before you, in a years time, will look back on your journey with love in your heart and tears of joy in your eyes. Love conquers all, Mommy. And you and your special child will be so full of love that you will see that you, indeed, will conquer the world. Together.










Love always,

Katie

Words of Wisdom For the School Year: A Guest Post by Lauren Ochalek

Tonight marks our daughter's second "Back to School Night." This year, she'll be entering first grade. Some might say that this is where the real school journey begins, as it is technically the "first year" of school, though when you're parenting a child with Down syndrome, your child's educational journey truly begins when they first enter the county's "Infants & Toddlers" program. Regardless, our daughter, Ellie, will begin first grade next Tuesday and she could not be more excited. As the mother of a child with a disability, I would be lying if I said that I wasn't anxious about this new beginning, though, like Ellie, I too am excited to see where this upcoming school year will take her and her confidence in everything always brings me much peace.

Every school year has brought its fair share of new and exciting experiences for our girl, and it has always been humbling to look back and reflect on just how far she's come. After all, this was a baby who doctors feared was incompatible with life.

To see her thriving is the joy of our lives, but I digress. Below are several pearls of wisdom from our family's first six years of walking along Ellie's educational path. While this advice is unique to our lived experiences, we hope that it may help others somewhere along the way.

Collaboration is Key...

We feel as though much of Ellie's educational success can be attributed to not only her intellect, drive, and beautiful disposition, but also the willingness of dedicated educators to see her potential and presume competence. From the very beginning, we have viewed Ellie's team, as we refer to them, as just that...a "team." By Merriam-Webster's definition, a team is "a number of persons associated together in work or activity." In this case, the work at hand is the molding of our daughter into a confident, independent, and well-rounded individual who will someday be on her own (to the fullest extent possible) as a contributing member of society. Regardless of chromosome count, working with educators who see Ellie's worth has made all the difference and, for that, we are forever grateful.

We believe that a part of working as a team is both parties coming to the table and showing their hands, long before the school year begins. As parents, coming to every meeting (be it an IEP meeting or parent-teacher conference) with thoughtful intentions and a vision statement can make all the difference in how the school year, and your child's educational journey in general, progresses. It helps immensely to set solid expectations and the tone for future meetings and communication. Discussing a child's strengths and weaknesses in an open, honest manner gives the team the benefit of understanding how your child best learns so that an individual plan for success can be formulated.


Optimism Along the Journey...
So much of Ellie's educational journey, we believe, can be directly attributed to a positive outlook and willingness to collaborate with educators. Going into a meeting about your child with "guns a-blazing" (as many parents of children with disabilities have been led to believe is necessary) is absolutely not constructive nor helpful to anybody involved. Instead, coming to every meeting with an optimistic, uplifting attitude and a willingness to work together is half the battle. Open lines of reciprocal communication are everything!

While it is critical to always be your child's best advocate, please know that, in general, the majority of educators truly do have your child's best interests at heart. It is time that we, within the disability community, no longer engage in fear-mongering associated with the education system wronging our children; instead we must embrace and support our educators and then, in the event that it is absolutely necessary, remind them of what the law states regarding FAPE and LRE as they relate to IDEA. Kindness and mutual respect make the world go-round and can go a long way in fostering constructive relationships between home and school.

Gratitude and Thanksgiving...
As a family, we are very passionate about the work that our educators do to help our children every step of the way along their educational journey. We always make it a point to emphasize our appreciation for these (too often underappreciated) individuals who dedicate so much of their lives, both in and outside of the classroom, to the betterment of others. Teachers are responsible for helping to shape our future generations - the least we can do as parents is recognize them and show them our gratitude.

Final Thoughts...
We know that Ellie's educational journey may not always be all rainbows and butterflies (we also understand that our experiences may be very different from others), however, with a foundation built on mutual respect between parents and educators, we are certain that we'll always be able to put Ellie first in the collaborative decisions that are made to support her throughout the entirety of her schooling. We have been very fortunate, thus far, to have educators who believe in our girl; educators that consistently set the bar high while presuming Ellie's competence, a bar that Ellie is continually determined to not only reach but exceed. Ellie's journey, as a student who is fully included alongside her typically developing peers, has been the model and definition of positive inclusion in every way. Along with excelling academically, inclusion for Ellie has meant lessons in respect and appropriate behavior, while forming strong, beautiful friendships and positive self-esteem. I know, undoubtedly, that her typical peers have learned much from her also. Inclusion for Ellie and our family has been such a gift.

Our Vision for Ellie...
Below is our vision statement for Ellie and is shared with her educators at every IEP meeting and the beginning of every new school year:

"Ellie will lead a life as independent as possible with whatever supports in place that she may need to succeed. We wish for her to be valued, respected, and included throughout the entirety of her life. We expect that she be treated like any other individual and be held to the highest of standards. We plan on her earning a high school diploma and attending a post-secondary institution to further her education. As an adult, it is our expectation that Ellie will have acquired the ability to work in a field that she desires and earn a livable wage; live independently, if she so chooses; and make a difference in her community, and the lives of those around her.

With this vision in mind, we believe that the very foundation of the life in which Ellie is building will greatly impact her future; therefore, there is much value in the decisions that are made today."

**Ellie is a rising first grader, big sister, incredible daughter, and amazing friend. Ellie enjoys dancing, swimming, and her involvement in Girl Scouts. She is constantly breaking down barriers and proving to the world that she is more alike than different, just by being who she is. The author of this piece is her mother, Lauren. Lauren is a nurse educator turned SAHM who, over the past six years, has worked tirelessly to advocate for Ellie and others within the Ds community as a whole. Lauren has dedicated her time to various local and national Down syndrome organizations throughout the past six years, though her current involvement is focused on the restructuring Down Syndrome Connection of Anne Arundel County, an organization that is very near and dear to her heart.**