Mom of Fame – Brooke: Prenatal Down Syndrome Diagnosis

Brooke is another amazing mom we were so happy to interview for our Down Syndrome Awareness month! She found out that her son, Ashton,  was “rocking an extra chromosome” while she was pregnant and hasn’t stopped advocating for him since! She talks about how important it is to put your marriage first, what it was like having a baby who needed open heart surgery, and how her son gave her a strong voice. Please help us welcome Brooke into our Mom of Fame, she’s another mama who definitely deserves it!

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Tell us a little bit about yourself and your family.

My name is Brooke and I married my high school sweetheart, Jesse, 6 years ago on October 12^th, 2013. We grew up in Wisconsin and went to college there. We now live in Littleton, CO and we love to hike and snowboard and spend time outside with our dog and son. We expanded our family on February 8^th, 2019 with our son, Ashton Thomas, who rocks an extra chromosome.

What is the best piece of advice you were given about motherhood? Did you take it? Would you give that piece of advice to someone else?

I think the best advice I was given from a friend and from our church was to put our marriage first and to show each other love so that our son has a good example. Another piece of advice was to not lose ourselves in our child. We still spend time with friends and do our hobbies with and without him. Getting in date nights is so important!

How is motherhood different than you imagined it would be?

I think motherhood is more difficult but more rewarding than I expected. Ashton has a ton of appointments and went through open heart surgery. Having a special needs child can be exhausting in that aspect. But, his one smile will turn around your entire day. I never want to stop snuggling him.

What are your three strengths when it comes to motherhood?

I believe my three strengths are advocating for him, juggling working full time and being a mom, and finally showing him love. I know he can feel how much we love him already.

Describe a time where you were completely overwhelmed as a mother.

There have been a million moments already of feeling overwhelmed, and he is only 8 months old! I think the most stress was the week of his open heart surgery. It was so difficult watching him wean off pain meds and not being able to hold him for days. He developed chylothorax, so I was unable to breastfeed him for weeks and I felt like we kept getting kicked while we were down. Now, he is an excellent nurser and he is so strong and recovered much faster and better than I ever would.

Is there anything you feel you have lost about yourself since becoming a mother? What have you gained?

I have really tried hard to maintain my work, my relationships with my friends and family and my husband, along with my hobbies. We have had difficult moments juggling time together as a family and time alone as husband and wife. Luckily, our parents have been very helpful in watching Ashton so we can have time alone. I think I have gained a strong voice that I didn’t know I had with advocating for him and shouting his worth.

What do you want your child to learn from you?

I want Ashton to learn to love and accept all people, no matter what they look like or believe in. I want him to be kind to everyone and to grow up knowing Jesus and to have a strong faith. I hope he finds a passion later in life and will find a career that he loves.

Since it is Down Syndrome Awareness Month, what is the most important thing you want people to know about Down syndrome or about being a mom to a child with Down syndrome?

I want people to know how awesome Ashton is and that my life is not any worse than a mom of a “typical” child. Yes, we have more appointments and stress about his health, but I wouldn’t trade him for anything. He is so perfectly him and his extra chromosome makes him so happy, sweet and loving.

Mom of Fame – Karen: Parenting a Pre-Teen with Down Syndrome

When we decided to dedicate October to moms who have kiddos with Down syndrome we reached out to several moms who we admire and we are absolutely pinching ourselves that Karen responded. She is another amazing mom to follow on instagram (@karenjp0915) if you are a new parent to a child with DS or even a new parent in general. She has a lot of experience being a mom (and a grandma) to her 12-year old son Caleb and his three older siblings. She talks about the importance of parenting each child individually, what is was like to get Caleb’s diagnosis, and how Caleb is “more alike than different”. Please help us welcome Karen into our Mom of Fame!

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Tell us a little bit about yourself and your family.

My name is Karen and I’ve been married 30 years (!) to my husband David. Between us, we have 4 children and 3 grandchildren (with one on the way). Caleb, our son with Down syndrome, is the youngest at age 12. His sister Courtney will be 30 later this year. He also has a half-brother (39) and half-sister (41). We cover all ages in our family 🙂

What is the best piece of advice you were given about motherhood? Did you take it? Would you give that piece of advice to someone else?

I’ve been blessed with many wonderful role models in motherhood, including my own mother. So much good advice; it’s hard to narrow it down to one piece. But if I had to, it would be to parent each child individually. That each child has their own strengths, interests, opportunities and challenges. Providing an environment to help them each learn their own path can be tricky, but look for the “helpers” – circles of support. Churches, community groups, schools, etc. can be great lifelines to broadening the path for your child(ren).

How is motherhood different than you imagined it would be?

Wow. It’s harder and it gets harder as they grow up!

It’s such a blessing to be a parent, and it’s also a responsibility. Helping your child find out who they are; what they want to be – it’s work! But wonderful work. I’m very proud of my children and whatever they want to be or do, I try to support them and guide them.

Love them unconditionally. Be there for them.

What are your three strengths when it comes to motherhood?

I’m a “doer” – if there’s something that needs to be done to support my children, I’m there. They know I’m in their corner – loving them unconditionally. I try to be an example for them – for their faith and for giving back. Volunteering was a huge role in my upbringing and I’ve tried to instill that in my kids too.

Describe a time where you were completely overwhelmed as a mother.

When our son Caleb was born with Down syndrome.

I felt like I was suffocating at first; like the world would never be right again. I had no knowledge of people with challenges – what their lives were like or how to mother someone with a difference. It took time, it took support, it took him guiding us and teaching us.

We eventually found the path wasn’t so different. It’s challenging for sure, but it’s a beautiful thing to recognize that our world has broadened so much by having Caleb in our lives.

Is there anything you feel that you have lost about yourself since becoming a mother? What have you gained?

When I was young, all I ever really wanted to be was a “mom”. So I would say not really. I’ve had quite an eclectic career path including both for-profit and not-for-profit roles. All those roles though had led me to meet the most interesting people, and really prepared me for who I am today and what I do now.

What do you want your child(ren) to learn from you?

Love, kindness, empathy, responsibility, community, faith, friendship.

Since it is Down Syndrome Awareness Month, what is the most important thing you want people to know about Down syndrome or about being a mom to a child with Down syndrome?

I could write on this point for a dozen pages or so, but I would love people – especially parents who don’t have children with unique (special) needs to know that our lives are not so different than yours (in our personal experience). Day-to-day living with Caleb is very similar to bringing up his sister – school, church, activities, friends, responsibilities. We depend more on supports with Caleb (therapies, etc). but we also have plenty of wonderful activities to do each week and throughout the year. Our local community is very supportive of people with differences, and that’s been huge for us.

There are things that we have and will put into place for Caleb that we didn’t have to with Courtney and our older children – financial strategies and educational plans. We look ahead and plan more for him most definitely. But there are many who love Caleb and are there for him – helping him to become the best he can be. Whether that’s owning his own business, or working for someone else, we hope and pray that he grows into a productive, happy young man who loves the Lord and loves his fellow man. Including him in community events and traveling has helped.

I would ask other parents to teach their children about “difference”. That having special needs or being a different skin color adds to a beautiful variety to community – wherever you might live. We believe that Caleb is “more alike than different” but also the “different is beautiful” too.

Mom of Fame – Amy: The Gift of a Down Syndrome Diagnosis

When I first learned that my son, Ryan, had Down syndrome Lisa suggested I follow @uplifeofemmyjoy on instagram. I checked her out and I’m so glad I did! Each day Amy posts videos and pictures of her adorable Emmy, who has Down syndrome. She made me understand how lucky I was to have Ryan and I loved watching Emmy, and now her son Reese live their day to day life!

When we reached out to Amy we were so excited that she agreed to share her experience with us since  was such an integral part of my transition to being a mom of a baby with Down syndrome. She shares her struggle getting pregnant, why being a stay at home mom is NOT boring, and how Down syndrome is a gift. Please read her amazing words and help us welcome her into the Hall of Fame, where she obviously belongs!

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Meet my family.

We are Chris, Amy, Emerson aka Emmy, Reese and our dog Ozzie.

Chris and I have been married for 8 years. We always knew we wanted kids and after saving a little money the first two years of marriage we decided to start our family.

We never anticipated the struggle.

It took 3 years and a lot of medical interventions for me to finally get pregnant with our first baby, Emmy. She has been such a gift to our family. She is such a bright light. 2.5 years later her little brother Reese miraculously joined our family with absolutely no medical help whatsoever. We live in Southern California along with our entire extended family. I stay home with the kids and Chris works for a home builder.

What is the best piece of advice you were given about motherhood? Did you take it? Would you give that piece of advice to someone else?

I don’t remember what advice I was given besides, it goes so fast so enjoy every moment. I really do try my best to soak it all in and yes, I think everyone should follow that advice.

How is motherhood different than you imagined it would be?

It’s much busier than I imagined. I was told I’d feel lonely and bored as a stay at home mom but when your first born goes to therapy neither of those are true. I have a huge support group of friends and I’m never ever bored. We are a very busy little family.

What are your three strengths when it comes to motherhood?

I have come to realize that my biggest strength is patience. I knew I was patient in my teacher days and I’m even more so when it comes to my kids.

2. I have thick skin which is a major asset when raising a child who is differently abled.

3. I have great confidence in my abilities to love my children and to stand up for when they deserve and need.

Describe a time where you were completely overwhelmed as a mother.

I felt overwhelmed the first few weeks after my new baby was born. I had a very rough c section delivery, we were struggling with nursing and I wasn’t healed enough to fully care for my kids on my own. I was use to doing it all myself and needing others to help A LOT was overwhelming.

Is there anything you feel that you have lost about yourself since becoming a mother? What have you gained?

Every stay at home mom looses their freedom to a certain extent. I can never go anywhere or do anything without making plans for someone to watch the kids or taking them with me. I’ve gained my purpose. I love being their mom and I love being an advocate for the special needs community. I wouldn’t trade what I’ve gained for the world.

What do you want your child(ren) to learn from you?

I want them to learn everything but mostly I want my children to learn to be kind, independent and loving individuals that make a positive impact on the world.

Since it is Down Syndrome Awareness Month, what is the most important thing you want people to know about Down syndrome or about being a mom to a child with Down syndrome?

Down syndrome is a gift.

It’s not scary and if you get to be a part of someone’s life with Down syndrome you are lucky. Parts of this journey are hard but it’s mostly so beautiful. I wouldn’t change one hair on my daughter’s head.

I want for her what every parent wants for their child and in a world that doesn’t fully understand disabilities we will work harder and shout louder for her to be seen as the valuable human she is.

In order to help spread the truth and joy that Down syndrome is we need all of you to join us in shouting the worth of these beautiful humans.

Mom of Fame – Taylor: Adopting a Baby with Down Syndrome

When we decided to highlight moms for Down Syndrome Awareness month we knew that we had to talk to Taylor. She is a one-of-a-kind person who has such a unique view of motherhood and Down syndrome. She has worked with children and adults with Down syndrome for years and because of her experience doing this she decided, at age 19, that she wanted to adopt a baby with DS. Last summer that dream became a reality and she flew to California to pick up her baby boy, George. In her interview she talks about how motherhood has made her stronger, what it was like to fly home with a 4-week old, and that she doesn’t want to be considered “heroic”. Please help us welcome Taylor into our Mom of Fame…she truly deserves it!

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Tell us a little bit about yourself and your family.

My name is Taylor! I work in theater, doing teaching work, directing, and performing. My husband, Kyle, also works in theater, and is the drama teacher at a local high school. We adopted our son, George, in March with the help of the National Down Syndrome Adoption Network. It’s been our dream to adopt a child with Down syndrome for many, many years, and since that dream has come true, we’ve been in a state of pure joy.

What is the best piece of advice you were given about motherhood? Did you take it? Would you give that piece of advice to someone else?

The piece of advice that I have found to be the most helpful is that every stage is the hardest and will also be my favorite. So far, it’s definitely proven true, and it makes the hard moments a little bit more achievable!

How is motherhood different than you imagined it would be?

I am shocked that I feel like myself. I imagined that becoming a mother would strip me of my previous identity, but what it really did was enhance my identity. I am happy to feel how much of myself I feel in my motherhood.

What are your three strengths when it comes to motherhood?

First and foremost, I look at myself as a lifelong learner. I do not know it all and I do not believe I know more or less than my child.

Secondly, I work hard to maintain my personal identity- I’m a better mother when I am and feel like myself!

Thirdly, I value community, which I believe helps both me be a good mother because it gives me opportunity to connect and grow, as well as opening up opportunities for socialization with George and other kiddos!

Describe a time where you were completely overwhelmed as a mother.

In March, we got on a five hour flight with a four week old. Yikes. I had been a mother for all of a week and a half, and I had to try to navigate getting me and my husband and our newborn onto a plane. Learning to be a mom is hard enough, and learning how to with such little ability to fail was traumatic. Being a mom while also being a person felt truly impossible as we went through security, but the TSA agents luckily took pity on the sobbing new mother!

Is there anything you feel that you have lost about yourself since becoming a mother? What have you gained?

I don’t like to think of it as what I’ve lost. I think I have highlighted parts of myself, and I have put other parts of myself on the back-shelf temporarily. I believe we’re all lifelong learners, so any part of myself that isn’t present because of my transition into motherhood needed to make room for the things I’ve gained.

I think I have gained so much confidence. Not about motherhood, but about myself. The strength I have did not exist 8 months ago, and I can’t believe how quickly that has changed.

What do you want your child(ren) to learn from you?

I hope he knows that doing what you love is the most important thing. I hope I teach my children the value of heart and soul over the value of quantity.

Since it is Down Syndrome Awareness Month, what is the most important thing you want people to know about Down syndrome or about being a mom to a child with Down syndrome?

I want people to know that the narrative about Down syndrome that is heard within in our society is adamantly false. People with Down syndrome are so much richer and deeper than the “always happy” people that society sees them as. Kids with Down syndrome deserve the same joy, respect, discipline, and expectation as any other child.

Being a mom to a child with Down syndrome is absolutely not a heroic act. It is not something that only a few special people can do. Anybody is fully equipped with the tools that are necessary to be a parent to a child with Down syndrome. We aren’t special, different moms, so ask us the same questions you ask your other mom friends, and just know that our answers might be a little different. We also desperately crave your childs acceptance, so know that we want to help create significant, real friendships between our children!

Down Syndrome Awareness Month: What is Down Syndrome?

October is Down Syndrome Awareness Month which is very exciting in our household because we love getting to share what Down syndrome is to anyone who will listen. When we were told our son, who is now almost 2, had Down syndrome we had to do a lot of research because we didn’t know a lot about it. That research led us to understand that technically “Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21 [and] this additional genetic material alters the course of development and causes the characteristics associated with Down syndrome” (according to the National Down Syndrome Society). But to us, Down syndrome is so much more than that…

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To us, Down syndrome is:

• watching my mom get a tear in her eye when Ryan finally calls her “ga-ga”.
• hearing my dad say that Ryan was “chosen for the perfect family” and “that he will teach us so much.” when we told him.
• having everyone stop me in a store just to say “hi” to Ryan.
• immediately having a club of strangers who are also part of the “lucky few” and feeling connected to them in a way other people can’t understand.
• celebrating like crazy when Ryan meets a milestone he has been working so hard on—and even FaceTiming “ga-ga” so she can celebrate with us!
• listening to my 5 year old niece tell me how lucky I am that Ryan is my baby–and knowing how right she is!
• looking into Ryan’s eyes and realizing that he understands people in a way I never will.
• seeing Ryan’s smile light up a whole room.
• having the most walkers at our local Buddy Walk and realizing that our support group is absolutely amazing.
• receiving all of the uplifting articles about people with Down syndrome from everyone we know.
• dealing with normal day-to-day ups and downs of a typical toddler; because he is first and foremost, a toddler.
• advocating for Ryan so that he can live his best life–whatever that entails.
• not wanting to change a thing about Ryan because he is “down right perfect”!
• feeling like the luckiest mama in the world because Ryan is mine!

 

But don’t just take my word for it…come back and check out our Mom of Fames all month to hear what other moms who have kiddos with Down syndrome have to say! And please, if you know, tell us what Down syndrome means to you and your family!

Down Syndrome Awareness Month

October is Down syndrome awareness month. I didn’t even know this existed a year ago because I honestly didn’t know much about Down syndrome back then. But I do now because of my amazing son, Ryan. Ryan was born in October so you would think that I would have actually known about this last October, but our introduction into the DS world wasn’t as simple as all of that. You see we went four months without even knowing that Ryan had Down syndrome. Weird, right? Let me rewind…

Meet Ryan

Ryan was born on Saturday, October 14th at 1:18 am. He was a perfect 7 lbs 2 oz and 20 inches long. He was 11 days early but came into the world without any problems. We were immediately in love and cherished every minute with him. He didn’t have any health issues besides having to have a hearing test (which he passed) when he was a few months old because he didn’t pass the one at the hospital. He was a pretty easy going baby who was a great sleeper and hit his milestones either early or on time. Fast forward to our 4 month doctor’s appointment… 

The Doctor’s Appointment

We go to a practice that has several pediatricians and this was our first time seeing this particular one. Everything was going great…his heart sounded good, his lungs sounded good, he was babbling for the doctor…until she excused herself to use the bathroom. She was gone for quite a while, which I thought was weird but didn’t really think much more of it at the time. When she came back she said, “does he always stick his tongue out like that”. I said “yes, he does stick his tongue out a lot, but he’s doing it less than he used to.” Then she very casually said, “I think we may need to get him tested for Down syndrome.” I felt my heart fall to my stomach and needed to sit down so that I didn’t drop Ryan. She went on, “let me explain. He has almond shaped eyes and sticks his tongue out which are both characteristics of Down syndrome. He doesn’t have many other traits and I feel in my heart that he doesn’t have it, but I think it’s something we need to get checked out to know for sure”. I was at the appointment alone and immediately called my mom when I got in the car. I’m not sure she could understand much through my tears but she definitely heard the words “Down syndrome”. She eventually calmed me down and we made it home, where she met me to calm me down even more. My husband, who was at work, kept texting me about the appointment and how it went so I told him to call me when he got a chance. We spoke and he left work right away so that we could take Ryan to get the blood test.

The Call

The results of the blood test took a week to come back and it was the longest week of my life. I tried to stay away from Google, but obviously gave in and looked at a few things. I spent the week staring at Ryan and going back and forth from “there’s no way in hell he has this” to “okay, maybe I see it”. I think throughout the week I eventually came to terms with the fact that he really might have it, which made the phone call slightly easier. It was a Friday and the doctor called at 7:00 at night. She told me that he does have Down syndrome and some other things that I honestly don’t remember now. When I hung up I told my husband and we took turns crying and comforting each other. At one point we were both crying and Ryan, who was on his tummy, looked at us, smiled, and rolled over (the first time he had done that since he was tiny). I think it was his way of saying, “I’m good, what’s wrong with you guys!?”

The Journey (so far)

The next couple of weeks were a blur. We had to tell all of our friends and family and we had to sort through our own emotions. As much as I love my baby and knew we were all going to be okay there was still a little bit of grieving to do. Grieving for the future, really. The plans I had already made for him in my mind that will now look a little different. 

We also had to follow up with the doctor and get him into several other specialists. He had to see a cardiologist—even though his heart had always sounded fine, heart problems are very common in babies with DS so he needed an EKG and an echocardiogram to be sure. We also got an appointment with an ophthalmologist (because vision problems are also common) and have to see a pediatric dentist by the time he is 1 to try to help with any dental issues. He also had to go get his blood drawn to check for several different things (which he’ll have to do every year for the rest of his life) and we made an appointment to see a genetic specialist. On top of those, I had to get in touch with our school district to start with Early On (a special education program for children birth through 3). So far all of the appointments have gone great and we love the Occupational and Physical Therapist who come to our house each week through Early On.

The Point

So why am I telling you this long winded story? For several reasons, really. One, if you have been reading this blog or looking at our Facebook page, you have seen Ryan a lot. Along with seeing him I wanted you to get to “meet” him too. Second, since it is Down syndrome awareness month, I wanted to make everyone AWARE. This is what Down syndrome looks like for us. This is our story and from what we’ve learned it’s not a very common one. Finally, and most importantly, if telling our story helps even one other family going through the same thing it is worth it. Obviously Down syndrome has changed our family, but for the BETTER. It was definitely hard when we first found out and we know that there will be bumps along the way but Ryan is an amazing little boy who has a very “normal” life. He does the same things as other babies his age, he just does them a little later and has a few more appointments to go to. We know we were chosen to be his parents for a reason, and we will fight to get him everything he needs to succeed in life. Trust me, he’s worth it!

~Erin