This doll is Audrey! Vicky shares a few fun things about her daughter and what she would tell her self the day her little girl was born, knowing what she knows now. You can follow their journey on Instagram at @vickywooandaudreyboo and on their blog at awesomeaudreyemily.com.
Audrey loves music. So much so, that if I hum a tune or sing a snippet of something she asks (and signs) for more! I spend a lot of time singing to her or listening to music and dancing!
We didn’t have a pre-natal diagnosis with our daughter. I looked at Audrey and knew she had Down Syndrome immediately. So what would I tell myself if I could go back to when she was born? I think I could write a book on this! I would say, first and foremost, Down Syndrome is not all she is. She was made with love and was meant to be your baby. She is perfect for you and your family and you will love her more than you could ever imagine. The worries and negative thoughts you have now will seem like a waste of energy soon enough. She will show you what true love is and how beautiful life is. I know you are rolling your eyes at this cheesy stuff, but you’ll see. She is going to be awesome and you’ll find yourself telling her constantly “you’re perfect”, “you’re so clever”, “you’re the most beautiful thing I’ve ever seen” and “I love you so much.” She’s the best thing you’ve ever done. Enjoy her and don’t worry!
Click below to read all the stories from Down Syndrome Awareness Month!
Today in celebration of Down Syndrome Awareness Month, we have a beautifully written post by Jenn, mom to three year-old Baker. You can find Jenn on Facebook, Twitter, Pinterest, and as @jenngbell on Instagram. She also writes about her family’s journey at Our Dream Come True.
How did you find out Baker had Down syndrome?
My husband, Brian, and I had been praying for a baby; trusting in God to provide us with a baby to love after a devastating miscarriage and several months of trying unsuccessfully to get pregnant. I will never forget that Wednesday morning in September. After my alarm went off, I went immediately to the restroom to take a pregnancy test, got back in bed, and prayed over the results with Brian. After two very long minutes, he went to the restroom to read the results; his face aglow as he proclaimed news of a baby on the way! Oh what joy! We held each other and cried, overwhelmed at the faithfulness of our Father to answer our prayers.
Over the next few weeks, we shared our incredible news with excited family and friends. Everyone celebrated the arrival of Baby Bell with us!
In December, I received a call from my doctor with the results of our quad screen. Usually I talk to his nurse; however, this time it was him on the phone. He prefaced the results with an uncharacteristically muted tone. He skipped the usual small talk and got straight to business. He began, “Often these results are not accurate; in fact, many times they offer a false positive. With that being said, your child has a 1 in 6 chance of being born with Down Syndrome.” I have no idea what he said next. The words resounded in my head. My whole being was consumed with this news. My husband was not home, so I sat in my dark, quiet home, and cried. Cried for the unknown. Cried for my hopes and dreams for my baby. Cried for my little boy or little girl and the cruelty of the world towards people with special needs. Cried, and pleaded with God. Cried out in prayer, because that was all I could do.
We were referred to a specialist for a Comprehensive Level II ultrasound to check for the physical markers for Down Syndrome. Our eyes were glued to the monitor as the specialist checked for a fold in the neck, absence of nasal bone, length of femur, echogenic intracardiac focus (bright spot on the heart), among others. In the midst of those findings, we learned that Baby Bell is a Baby BOY Bell!! I have never seen my husband smile so proudly, as the doctor highlighted the very obvious male anatomy. “That’s my boy! That’s my boy!” exclaimed the delighted daddy to be. Of the major markers, our son had one present: an echogenic intracardiac focus. (This, we learned is present in children born with and without Down Syndrome – not a very reliable marker). None of the others were found as they scanned our little boy’s perfect body and watched him wriggle and squirm and suck his thumb for his mama and daddy to see. Oh how our hearts were filled with joy at the realization of our baby’s gender, perfection of his little body, and decreased chance of our son being born with Down Syndrome.
If someone you knew was told their baby would be born with Down syndrome, what would you tell them?
This is what I would have wanted to hear on that day in December when we received Baker’s diagnosis of Down Syndrome.
I am wrapping you in prayer. For you, for your little one, for your husband or your wife. For your parents, and your in-laws. For your friends. For your child’s future teachers and neighbors, and therapists, and doctors. For the cashier at the grocery store, for your small group, for the person who will give you a smile to brighten a cloudy day, for the friend who will send a handwritten note at the just right time. For the lives you will touch with yours.
Congratulations on your baby. What an incredible gift. There are no words I can convey that will share the immense love our Baker Boy has brought into our lives. In his short twenty months, he has given a lifetime of smiles, hugs and snuggles and kisses so great in number I will never be in want. With every breath, he breathes joy. He is, like his name suggests, a strong willed warrior – sometimes a little more strong willed and stubborn than I would like to admit. He is a fighter, a peace maker. He is a pleaser. He is independent. He is strong. He is gentle. He has a laugh that spreads more quickly than wildfire. The sparkle in his eyes could light the night sky. He is ours. And for that, I am eternally grateful.
This is a place where abilities are celebrated, where joy is found in the everyday, and where love abounds.
This is what I would have liked to read that afternoon in December.
One. You are a first a mommy. You are first a daddy. Your baby is first a baby. Not a Down Syndrome baby. Your baby is a baby with Down Syndrome. You can read all the books and fill out all of the paperwork later. Today, cherish their kicks. Savor being wholly exhausted during pregnancy. Laugh about your cravings. Daydream about the future. Decorate their nursery. Sit in the rocker where you will read countless books together. When he or she arrives, memorize their first cries. Breathe in their scent. Kiss their cheeks. Study their face. Fall all over in love with your baby. Hold your son. Talk to him. Tell him about his furry big brother waiting not so patiently for him to come home. Sing to her. Whisper lullabies in her ear. Dance together. Cover her in prayers. When the doctors allow, take him home. Introduce him to the place where he will splash in the tub. Show her the garden where you will grow blueberries together and get dirt under those tiny pink painted fingernails. Tiptoe through the kitchen, the home of the famed Tupperware cabinet and chocolate chip pancakes. Christen the rocking chair by reading Love You Forever. Then, gently wipe your tears from his cheek. Break the rules and let her drift off to dreams on your chest.
She is yours. And you, hers.
He is yours. And you, his.
Two.It’s okay to grieve. But it’s not okay to live in grief. You can mourn the loss of the child you were expecting. But then, stop. Reconsider all of the hopes and dreams you have for your child. Most, if not all of them, are still attainable. Recognize that. Celebrate that. Your son can still be the point guard for his high school basketball team, and your daughter, crowned Miss Alabama; if that’s what you want for them.
For some things, your child will have to work harder. He or she will experience failure. It’s okay. It will make both of you stronger for it. And, you will more intentionally celebrate milestones because you know how stinking hard you had to work to accomplish it. Persevere.
The only limitations are the ones you set.
Hold your head up, and grab your favorite sunglasses. That baby you’re carrying has a future so bright, you’ll certainly need shades!
Three.Tell somebody.
Brian and I chose to keep Baker’s diagnosis to ourselves. We silently prayed. We silently worried. We silently read and silently studied. We silently went to doctor’s appointments. While I don’t regret the way we handled anything, I wish we would have shared with close friends and family. I needed to know they would still love us. I needed to know our boys would be able to play together. I needed to know this wouldn’t change anything. I needed their support, their prayers, their smiles, their encouragement.
Four. You are not alone. When I bought my SUV in 2011, I left the dealership thinking I had the only black Nissan Murano with tan leather in all of Mississippi. Wrong. As I ran errands the next day, I counted twelve. TWELVE. Twelve exactly like mine.
When we received a Down Syndrome diagnosis, I felt like Brian and I were the only parents in the whole world to have a child with Down Syndrome. Wrong. As I learned more, and met more people, I realized we were not alone in this journey. We are part of a community. It is not small. Like any group of people, we share. We share celebrations, we share struggles, we share ideas for therapies, and discuss schools and the best tennis shoes for emergent walkers. And unfortunately, the kids even share germs. Just like a Bible Study group, or a cross fit class, or a Supper Club, connecting with others makes the road a little smoother and the drive a little brighter.
Five. In time, you won’t use the words “Down Syndrome” every day. Right now, it’s all you can think about.
I know. I’ve been there. In the place where all you can think about is the diagnosis.
It is still a part of who we are, Baker will always have Down Syndrome. But, it does not define us, nor does it confine us.
He is Baker. He is mine. He is here. He is loved.
Down Syndrome is a thing, but Down Syndrome is not the thing.
One last thing. Get ready.
You are in for the greatest gift, the greatest joy, the greatest love one can experience this side of heaven.
Click below to read all the stories from Down Syndrome Awareness Month!
This is Eli! Eli is three years-old, and I’ve been Instagram friends with his mama, Ashley, since our boys were very little. You can follow Ashley on Instagram at @thosenewmans and on her family blog. She also has a stunning photography business, Ashley Newman Photography.
What is something that has surprised you about Down syndrome or knowing someone with Down syndrome?
When we found out that Eli had Down Syndrome, we felt like we knew all there was to know about that extra chromosome. The truth is that neither my husband or myself had ever had much contact with anyone who has DS or special needs. In the weeks leading up to Eli’s birth, we researched and did as much as we could to get connected within the DS community. We were looking for hope and reassurance. We were looking for love and compassion- understanding…and to make sense of who our child would be. It feels like the “surprise” of what Down Syndrome is and means has slowly unfolded over the last three years. Eli is everything we imagined and more when we decided to start a family. He continues to show us what Down Syndrome is not. It is not who he is. It is not scary. It is not sad. It is not something to be pitied. It’s just a small part of who Eli is. Surprise! Eli is just like the rest of us 😉 Don’t we all have something special we need?
If someone I knew was told their baby would be born with Down syndrome, I would tell them… As a local photographer, I partner with our Down Syndrome Association and give away free sessions to new parents of children with Down Syndrome. I think I maybe get a little too excited 😉 but it’s only because I know the enormous blessing their new baby will be to their family. When announced to family and friends that Eli had DS, we faced a lot of “I’m so sorry”. It’s never something you want to hear when you are having a baby! So for these parents, this may be one of the first times they have seen joy and excitement over their child and their diagnosis. All children are hard work, and all children come to us with different needs. I love to be able to bless another family and shower them with the support and encouragement they will need in those early weeks and months.
If I could go back to the days and weeks after first hearing the diagnosis of Down syndrome, I would tell myself…
to just stop and enjoy him. I told myself I was doing that all the time, but when I look back I was so worried and scared. Eli didn’t need anything extra, but being a first time mom already had me nervous. If I could, I would pause and take in more snuggles and treasure more quiet moments with my newborn instead of researching and worrying. My heart was so raw and worried…but those are natural feelings with any and every child you have. A piece of my heart and soul is walking around outside of me and we want to do everything within our power to protect it. I have learned so much and met incredible, strong people through this journey. I am grateful for the knowledge, but there is much to learn in the stillness and silence as well. Eli is teaching us that every day.
Click below to read all the stories from Down Syndrome Awareness Month!
This month, I’m participating in the Write 31 Days challenge with Crystal Stine. DaySpring.com is celebrating all of the amazing Write 31 Days readers who are supporting nearly 2,000 writers this October! To enter to win a $500 DaySpring shopping spree, just click on this link & follow the giveaway widget instructions. Good luck! And thank you for reading along during Down Syndrome Awareness Month!
How sweet is 19 month-old Natalie?! Today her mama, Maranda, shares the story of how she and her husband found out their little girl had Down syndrome and how they decided to share the news with family.
How/when did you find out your loved one had Down syndrome? Our journey with Down syndrome began at my 20 week ultrasound of Natalie. During the ultrasound I could tell that something was abnormal. The ultrasound technician spent what seemed like an eternity capturing images of Natalie’s heart. We met with my doctor after finishing the ultrasound and she told us that an echogenic focus was present on Natalie’s left ventricle. She was very positive and presented us with some statistics of babies with an echogenic focus and normal development but she ended her statement by saying that the presence of an echogenic focus is also a soft marker for Down syndrome. We were at a loss. We opted to forgo any prenatal testing during my pregnancy with our (at the time) 18 month old son. We had so many questions. What do we do now? Do we have any prenatal testing? Do we wait and see? Is her heart healthy? I began to panic about the unknown. We opted to see a perinatologist and have a 3D ultrasound performed.
The perinatologist did not see any other soft markers for Down syndrome but he offer a maternal fetal DNA test (MaterniT21) which was new to the market. We decided to take the test. One week later a genetic counselor called me and told me that the test came back negative for Trisomy 13 (T13) and Trisomy 18 (T18) but it was positive for Trisomy 21 (T21).
What were some of the emotions you had when you got the news?
I felt as though the wind had been knocked out of me. I was at a loss for words. If I’m being completely honest, I was filled with worry, sadness and grief. I cried for a while and tried in vain to compose myself before I called my husband and told him. I walked around in an absent state for about two weeks and was filled with worry. With the help of my husband the fog dissipated. He was certain everything would be fine. We chose to educate ourselves and insure the best possible health care for Natalie due to the medical complications associated with Down syndrome. We decided to tell our immediate family members (our parents and our siblings) of Natalie’s diagnosis but we decided we weren’t going to tell anyone else. We wanted the remainder of my pregnancy and Natalie’s birth to be a joyous celebration. Although we are trying to change society’s perception of individuals with disabilities the news of a Down syndrome diagnosis is often followed by “I’m sorry” or “I have bad news.” We weren’t sorry. We were excited to meet our little girl. She was amazing news to our family. So we decided to wait until after her birth to share all the details about Natalie. Her birth weight, height, eye color, time of arrival, her name and one small part of her…Down syndrome. Because to us it is just that…a small part of her. It does not define her.
If I could go back to the days and weeks after first hearing the diagnosis of Down syndrome, I would tell myself… It is not going to be okay…it is going to BETTER than ok. This little girl is going to enhance your life in ways you’ve never imagined. She is going to bring out the best in your family. She is going to change the way you see the world. She is going to change the way you see the world. You are going to celebrate the small thing in life. The things you should have been celebrating all along. You are going to meet many amazing people that you wouldn’t have met if it wasn’t for her. There will be difficult roads ahead but you are strong, much stronger than you know. The good times far outweigh the bad. You wouldn’t change her if you could.
Click below to read all the stories from Down Syndrome Awareness Month!
Today we get a very unique perspective on Down syndrome, adoption, and foster care from big sister, Saylor. I so enjoy following Saylor on Instagram as she shares photos and stories of being a ‘big sis to many’ (as she mentions on her IG profile @saygla). Saylor first sent me the stories of her younger brother and sister, Scout and Suri, in late September, before little Suri Clare went to be with Jesus. What a privilege to be able to share these stories with all of you today.
Tell us a little about Scout and Suri Clare. Scout (2) is adopted through our local foster care system. He had been abandoned at the hospital after his diagnosis by his mother and the couple who had planned on adopting him. My mother and I were driving home when she got the call. Our family was currently fostering a seven year old with DS and had been praying for a baby. The tears were immediate. He was the answer to our prayers!! Born on my mothers birthday, we took him home from the hospital after his two week stay in the NICU. He had OHS at 4 months old and has had no complications since.
Suri’s story is completely different. My mother was contacted through Facebook and was asked to call a woman who had just had a child with Down Syndrome. It was pretty late, but my mom assumed that she needed support, so she made the call. Within two minutes, the woman asked if our family would be willing to adopt her daughter. They had spent two months in the NICU. Suri had been home for a week when she decided she needed a family better equipped to care for a medically fragile child. After giving her birth mother time to think about it, Suri was placed in our care at 3 months old weighing almost 6 pounds. Suri is a little more complex than Scout. We are on our 8th hospital stay since we’ve had her.
Throughout everything, joy is the emotion that comes to mind the most. Immeasurable joy.
What is the best part of knowing these two?
The most wonderful part of knowing Scout and Suri Clare is knowing unconditional love every minute of the day! I’m also learning how to give forgiveness where forgiveness is needed and that it is perfectly okay to learn new things a little different than every body else.
One week after I received Saylor’s first message, she sent me this message, asking if we could still celebrate Suri Clare today. Of course I said yes. So today, on what would have been her first birthday, we can look at that beautiful face and imagine her celebrating today in heaven.
After a long hard fight against respiratory issues resulting from her prematurity, Suri Clare was called home to be with Jesus on October 3rd. We cherish every day we had with her and are so excited for the day we see her again. Happy 1st birthday, beautiful.
Click below to read all the stories from Down Syndrome Awareness Month!
Today we get to meet sweet baby Charlie! Seriously, how adorable is he? And he has three big sisters. Can you imagine all the loving he gets from being the baby in their house? Charlie’s mom, Alissa, has graciously taken the time to share a few of her thoughts and experiences since welcoming Charlie just seven months ago. You can find Alissa on Instagram at @alissa512.
How did you find out Charlie had Down syndrome?
Charlie is our fourth child. We have 3 girls and wanted the sex of our (probably) last baby to be a surprise. We had a normal pregnancy and I went into labor 10 days before the due date. We had a successful VBAC and were overjoyed to hear the news, “It’s a BOY!” Everything seemed to be okay until Charlie saw the pediatrician at a few hours old. He seemed to be gone longer than normal. At that point the doctor came to talk to us and said that our baby showed characteristics of Trisomy 21. I held on to my husband and we both cried. We didn’t want it to be true and still had some hope that they were mistaken.
What were some of the emotions you had when you got the news? The first emotions we had were of denial. Our little boy looked so perfect and so like his older sisters. We also felt grief and fear. It felt like all I had known was crashing down around me. We also felt thankful that Charlie was so healthy. His heart showed no sign of problems. We had many family members crowd into our hospital room minutes after we received the news. We were celebrating the birthday of one of our daughters at the hospital. Only my mom had been with us when we had heard the news. We decided not to tell our family that morning. We still didn’t want to believe it and wanted them to see Charlie just as a baby and not as a diagnosis.
How did Charlie’s sisters respond to the news of Down syndrome? I was very concerned as to how my daughters would take the news. We have a 6 year old, 4 year old, and 2 year old. They were looking so forward to meeting the new baby and were so excited to know that it was a brother! They kissed and hugged him and couldn’t stop smiling. I wanted to be the one to tell our girls that there was something different about their brother but I didn’t know how and I didn’t want to scare them by crying around them. We received a book from our local Down syndrome support group called We’ll Paint the Octopus Red. It did a good job of saying that there is nothing wrong with your little brother but it will take him longer to do things. They took the news in stride and it did nothing to change how they saw Charlie. They continue to love and adore him. Having my girls has helped me to see Charlie as a normal baby and not to get so stuck in my sadness.
If I could go back to the days and weeks after first hearing the diagnosis of Down syndrome, I would tell myself… Just enjoy him! He is a baby and needs your love just like any other baby. Don’t worry too much about the future. Yes, there will be additional challenges but none of us can know the future for any of our children. Allow other people to help you. For me bringing home my fourth baby in 6 years was a challenge anyway. I would take all of the help people offer. It’s okay to grieve the baby you thought you would have. But don’t get so stuck that you can’t accept and love the baby you’ve had all along.
The most wonderful part of knowing my little boy so far is just cuddling him. He is the cuddliest and sweetest baby. He is so happy and healthy and such a perfect part of our family!
Click below to read all the stories from Down Syndrome Awareness Month!
Suri’s story is completely different. My mother was contacted through Facebook and was asked to call a woman who had just had a child with Down Syndrome. It was pretty late, but my mom assumed that she needed support, so she made the call. Within two minutes, the woman asked if our family would be willing to adopt her daughter. They had spent two months in the NICU. Suri had been home for a week when she decided she needed a family better equipped to care for a medically fragile child. After giving her birth mother time to think about it, Suri was placed in our care at 3 months old weighing almost 6 pounds. Suri is a little more complex than Scout. We are on our 8th hospital stay since we’ve had her.
