October 2015 | The Mango Memoirs

Eli

Posted on October 21, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM Eli

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.

Photos by Erin Witkowski

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!

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Filed Under: Down Syndrome

Natalie

Posted on October 20, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM Natalie

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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).

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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.

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Click below to read all the stories from Down Syndrome Awareness Month!

Filed Under: Down Syndrome

Scout & Suri Clare

Posted on October 19, 2015 by Angela @ The Mango Memoirs • 0 Comments

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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!

Filed Under: Down Syndrome

Charlie

Posted on October 18, 2015 by Angela @ The Mango Memoirs • 1 Comment

DSAM Charlie

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!

Linked at A Little R&R Wednesdays

Filed Under: Down Syndrome

Tanis

Posted on October 17, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM Tanis

Tanis with her brother

I first met Tanis and her parents, Steve and Kathleen, at our first meeting with our local Down syndrome group, Down Up North, when Sam was just a few months old. I often saw her after that when she would attend an older ballet class at the same time as Ella. She is now nine years old, and today her mom answers a few questions about her beautiful girl.

How did you find out Tanis had Down syndrome?
About one hour after she was born, the Family Practice doctor came to my hospital room. He told me he had some concerns and would be asking a specialist to examine Tanis and let me know. The hardest part was my husband had gone home to get our older kids and I had to be the one to tell him when he returned.

What were some of the emotions you had when you got the news?
Nervousness and worry that I would not be up to the job. (all very baseless worries as it turns out!)

How did siblings respond to the news of Down syndrome?
They showered her with kisses and love. They are very protective and love teaching her new things.

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What are a few of Tanis’s favorite things to do?
She loves her friends at school. Even when she is home, she “pretends” they are with her doing things at home. She loves anything related to Elsa and Frozen, Tinkerbell and now Nemo. She is a very physical kid and loves to help me outside. She does not mind getting dirty, so digging in the garden is fun. She is also the most artistic of our three kids and loves to draw.

What is something you want everyone to know about your daughter?
She knows more people than we do. We are constantly whispering to one another when we go out, “who was that?” after someone says “hi” to Tanis.

What is something that has surprised you about having a child with Down syndrome?
Tanis develops more slowly and all those milestones are much sweeter! It is great fun watching her develop and learn. Sometimes with the other kids, it went so fast.

What is one of the most challenging parts of having a child with Down syndrome?
Tanis is slow! There is no “fast” button – unless she runs away from me at Target! If I am in a hurry to do something, she takes more time to process information and I have to cool my jets.

with a friend

If you knew someone who just had a baby born with Down syndrome, what would you say?
Congratulations! You will never have another lonely or dull day in your life!

What have been good resources for you to learn more about Down syndrome?
Down syndrome Association of MN, other parents at our Down Up North Parent Group.

What is the most wonderful part about knowing Tanis?
She helps me to stay positive and look for the small moments in life that truly matter.

Tanis with her sister

Click below to read all the stories from Down Syndrome Awareness Month!

Filed Under: Down Syndrome

Caleb

Posted on October 17, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM Caleb

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Meet Caleb! This darling boy is 20 months-old. Today his mom, Kate, answers a few questions about a few of her experiences since her son was born. You can find Kate on Facebook and as @MKLMC_H on Instagram. She is currently a part of a beautiful project right now featuring 31 beautiful people who have Down syndrome. Check out her Instagram feed for more info!

When did you find out Caleb had Down syndrome?
We found out at birth, within about 15 minutes the Dr. told us and it was confirmed 5 days later.

What were some of the emotions you had when you got the news?
Sadness because I felt the future might not be as promising as you hope for a child.

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What is Caleb’s favorite food? What does he like to do?
He loves pizza and playing with balls and bubbles.

What have been good resources for you to learn more about Down syndrome?
Social Media and local connections

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What is something that has surprised you about Down syndrome or knowing someone with Down syndrome?
How much Caleb can actually achieve and how our lives are MUCH more joyful with Caleb in it!

If someone you knew was told their baby would be born with Down syndrome, what would you tell them?
You are one of the “lucky few” and it will be more than alright! Use the resources available to you. Early intervention really does work.

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Caleb’s red shirt is from Group Hug Apparel, a company created by Andrew, an amazing young man who happens to have Down syndrome.

Click below to read all the stories from Down Syndrome Awareness Month!

Filed Under: Down Syndrome

Monthly Archives: October 2015

Eli

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Natalie

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Scout & Suri Clare

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Charlie

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Tanis

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Caleb

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