Today is about education. Education on one very specific topic. It’s very simple. So here it is.
DO NOT USE THE WORD RETARD. EVER.
So simple. And I imagine most of you have already taken it out of your vocabulary. By the simple fact you are a part of our storytelling journey here at The Mango Memoirs, you have witnessed life with our little Samuel. He is an adventurer, a comedian, a doll, a little brother, a preschooler. He is determined, energetic, mischievous, sometimes moody, and always so stinking adorable. We know he is so many things, but there is one thing he is not. He is NOT that ugly R word.
I am so passionate about this message. I’ve always thought it was a pretty crappy word, but now that I am a part of an absolutely incredible community of individuals who could potentially be labeled with that horrid word, I am so much more vocal about it. Please, please, please don’t use it. Not to describe a person, or a dog, or a bag of macaroni noodles that just spilled all over the floor. Just don’t ever.
Why? Well, if we must go there, let me tell you. For a whole lot of years, that word has been used in an incredibly derogatory way to label a person who is slow or who has intellectual disabilities. Yes, it once served a medical purpose, but just as words describing other people groups have been used and then abused, the word retard is no longer an appropriate term. It is hurtful on many levels.
Thank you so much for not using the word and for gently telling your friends not to use it. Let’s watch it go extinct. Seriously, that would make this mama so very happy.
Good heavens! I got so caught up in posting all the incredible stories in September for Down Syndrome Awareness Month that I forgot to post the photos from the Step Up for Down Syndrome Walk! I will not let another moment pass without sharing these photos.
We woke in our St Paul hotel to Superman getting a very important call. It was time for the walk! Hurry, Superman! Hurry!
So we headed to Como Park and joined thousands of people to celebrate those we love who have a very special extra chromosome. Our friend Kim even made cupcakes!
Ella adores pony rides. We were set up pretty close to them this year, so she was able to ride over and over and over. I lost track of how many rides she took. Little superhero on a pony. Perfection.
Sam made a new friend! I’ve been waiting three years for this little meet-up. Just a few weeks before Sam was born, my college theatre friend, Jen, welcomed Holden, who also happens to have Down syndrome. Two little Minnesota boys. Aren’t they just too cute together?!
We dressed like superheroes again this year, which is always great fun.
This year Sam matched Daddy!
We had lots of friends join us, which makes the day even more special. And that quilt in the middle? It was made by Sammy’s runner! Of course we had to have it at the walk with us.
Sammy had a little chat session with his fellow superheroes. (I think this group makes appearances as lots of events for kids.)
After cupcakes and hotdogs and pony rides, it was time for the walk! Sam loved the live band at the start.
Ella did, too, especially since they let her play their drum.
By the end of the two mile walk, Sam was ready for a nap. What a day it had been!
We were thrilled to be able to join everyone again this year for the Step Up for Down Syndrome Walk in St Paul. Next year, we may or may not still be in the States, so this might be our last one for a little while. But what a day it turned out to be! We really do love this big, awesome community!
Last week I said I might do it, and I did… I cut my hair! It was in great need of more than just a simple trim, which is all I’ve been doing the last few years. It was nice to grow it out, but it’s so lovely to be able to style it again after cutting off a little more than six inches. I’m getting used to the time it takes to do more than the side braid, but I’ve been playing a little worship music while curling it and trying to slow my morning a bit. There are so many things I can do to my hair again!
I want to say a huge, very sincere thank you to everyone who submitted stories through the last month and to all of you who checked in to read them. Four years ago I had no idea Down syndrome would be such a big part of my life and that I would have the opportunity to get to know so many incredible families and support workers on this journey. It has opened my eyes to the countless other life-giving communities that exist in this life. To my Down syndrome family, thank you for the joy and support and beauty you have added to our lives. I am so very, very thankful for each of you.
Until we celebrate again on March 21 – World Down Syndrome Day – I leave you with the faces of just a few of the people who are proving that an extra chromosome is something truly beautiful!
Click below to find all the posts from Down Syndrome Awareness Month!
This is it! The end of this year’s Down Syndrome Awareness Month. I had hoped to post this yesterday, but I developed a lovely case of strep and wasn’t able to do much more than rest and take the kids trick-or-treating yesterday. I will have one post after this to wrap up the month and all the beautiful faces and stories that were shared. I considered many different options for the last post of the month, but then a friend asked if I would be sharing my own story. I hadn’t even thought of it. So here is my experience of discovering Sam’s diagnosis and the emotions that followed. If you have any questions as you read this, or if you’d like to know more, either leave a comment or send me a message on our contacts page. I’m always happy to share our journey! And as always, you can find us on Instagram at @TheMangoMemoirs.
When did you find out about Sam’s diagnosis?
The first whisper of Down syndrome during my pregnancy with Sam was just after my 20-week lab work was done. My doctor (a resident physician, colleague of Pete’s, and my friend) called to tell me some of my numbers showed an increased risk for Down syndrome. Honestly, this didn’t get me overly concerned because I remembered reading in multiple places while pregnant with Ella that those numbers can come back indicating the possibility of Down syndrome when, in fact, it is not present. She told me to wait for a call from the nurse to schedule another ultrasound, but she was calm on the phone, so I was, too. However, after the nurse called and I heard her very hurried tone, I became worried. I hung up with her and cried hard in the middle of my living room floor. Pete was working and Ella was napping. I wasn’t crying about the possibility of Down syndrome, necessarily. I was just scared. I called Pete to share the news and he made arrangements for us to go together to the Level 2 ultrasound the next day.
We first met with a genetics counselor who asked us pages of questions about our medical histories. Then we went in for the ultrasound. I don’t remember a whole lot about the actual ultrasound. After maybe an hour of in-depth photos, the high-risk OB came in to talk with us. She told us there were no soft markers for Down syndrome, which, now that I know what that means, I’m amazed. A soft marker is something that shows a possibility of Down syndrome, while a hard marker is something that shows a much higher likelihood of the diagnosis. We were asked if we wanted an amnio so we could know for sure, but after Pete and I prayed about it, we decided to pass. I went home and read about Down syndrome in infants on the Mayo Clinic website out of curiosity, wondering if it would change the delivery at all. It really wouldn’t, so I didn’t look any further.
Just a couple weeks after the Level 2 ultrasound, we met with an OB at the hospital, another good friend of ours, who had read our charts. Again, I don’t remember much from that visit. What I do remember is hearing that the risk of our baby having Down syndrome was fairly low due to the lack of soft or hard markers in the ultrasound. I walked away from that appointment and completely put the possibility for Down syndrome out of mind. I truly believe God is the only one who could take a worry like that completely out of my mind. I was at peace the rest of my pregnancy. We chose not to tell anyone about our appointments and the possibility of Ds. Without knowing for sure, we didn’t want our family and friends to be unnecessarily concerned.
Then came the day we finally met our Samuel in late May 2012. Everything went well with my labor. In fact, I progressed so quickly, meds were not an option. I pushed for nearly three hours before we decided a c section was necessary. I felt a lot of peace with the entire process, which seems appropriate looking back because we had already chosen Sam’s Swahili middle name: Amani, meaning peace. I prayed for the doctors and staff before the surgery began and hummed worship songs during it. Then, when Sam arrived, he did not cry. I could see him on the warming table, and asked Pete to bring him to me. When my darling boy was close, I spoke his name. He opened his eyes and looked deeply into mine. In that moment, I knew. And I felt peace. A peace like something inside me had already acknowledged my baby boy and all he was. He was then whisked away to the NICU with Pete, my mom, and the doctors and nurses (most of whom were our friends), and his diagnosis was quickly confirmed through physical examination.
What were some of the emotions you had when you got the news?
Sam was in the NICU for two weeks as he learned to breathe and eat on his own. During that time, Pete grieved deeply. Being a physician, he was aware of the medical challenges many with Down syndrome face. He also needed time to process the reality that his son would walk a different path than the son he had imagined for so many years. Pete had largely worked through his grieving by the time Sam came home with us, which was when mine began. I remember many times, while alone with my baby, looking into his gorgeous, almond-shaped eyes, feeling I had failed him. I had failed to protect him and grow him correctly and, because of that, he would have to live a life filled with judgment and hurt. I wondered if there would ever be a time when I could look at my little boy and not have my first thoughts be of Down syndrome. I cried and cried and I apologized to my Samuel for not being enough for him. Intellectually, I knew I had done nothing wrong, but my heart needed time to believe that, too.
What are some of the challenging things about having a child with Down syndrome?
One of the hardest things for me has been to fully embrace Sam’s pace. I’ve already seen in so many ways that Sam will do what ‘typical’ kids do, but he’ll do it in his own time. I have no problem with that. The harder part is watching other kids his age with Ds doing what we haven’t quite been able to do yet. A real example right now is that Sam is nearly 3 1/2 and is not walking. I have friends whose little ones are much younger and are walking and running. It’s hard some days. I have to intentionally tell myself that it’s not because I haven’t worked with him or that I am doing his parenting wrong. Every day he gains more interest. He’s getting stronger. I know without question he will walk. I just have to wait for Sam to be ready.
It can also be really hard to encounter those who have set ideas of Down syndrome and who don’t seem to want to change those ideas. The first time this happened, I was having a conversation with another mom I had just met at our local library. She was an area teacher and had two of her kids with her that day. Sam was about 10 months-old and was playing on the floor. As we chatted, she told me she had a ‘scare’ during one of her pregnancies, but after an amnio, she found out her child did not have Down syndrome. She went on to say that she and her husband just wouldn’t have had time to care for a child with special needs with their jobs at that point in their lives. She made it very clear she wouldn’t have gone on with the pregnancy. I was so surprised, I didn’t know what to say. I finished our conversation, took Sam to the car and cried. I felt she was saying my baby boy, who is so full of joy and delight, wouldn’t have been worth it. Those are the mindsets I am out to challenge and change. And yes, if something like that happened now, I would certainly have something to say in return. Not too harsh, but absolutely educational.
What is the best thing about having a child with Down syndrome?
I honestly feel like God gave me an incredible gift in Sam. I know I was a good mom before he was born, but now I am so much more the mom God intended me to be. I love teaching my kids and learning with them and dreaming about what is to come. Sam has slowed my fast-paced life and pulled me into the moment. I am fiercely protective of him. He is my little sidekick. When I’m sick or just feeling blah, all I need is a few minutes of cuddle time with him and things are brighter. He is pure. He expresses everything he is feeling, and is so quick to forgive. I get to see every single day that a child does not have to do the same things or reach the same milestones to be incredible. Sam has opened my eyes to the intense beauty in every human being. I love more deeply and feel more passionately. He has made my life far more beautiful than I ever could have imagined.
Thank you so much for joining us through these 31 days of Down Syndrome Awareness! It has been such a joy to meet so many families who have loved ones with Down syndrome. To visit the posts again, simply click the image below!
I have been saving this post for weeks, wanting to publish it right at the end of the month for this reason: I am incredibly in love with what Rebecca is doing in Africa. I pray that Jesus will allow me to be a part of something similar to The Treasured Ones when we get to Kenya next fall. I first came across Rebecca’s Instagram feed maybe about a year ago and instantly fell in love with the obvious love for Jesus she has as she works to bring hope and a future to children with special needs in Ghana. My heart ached and I prayed fervently in the weeks Rebecca was able to love on Justice this past summer, until he went to be with Jesus, healthy and whole. I strongly encourage you to follow Rebecca on Instagram at @kuntzr and then head over to her blog to read about the incredible things God is doing through her in West Africa.
How did baby Justice come into your life?
I have lived in Ghana, West Africa for the last 4 years where I am the founder/director of a ministry called The Treasured Ones. We have work with children with special needs, alongside their families through wheelchair outreaches, medical sponsorship, family preservation initiatives, and short/long term foster care. In July 2015 I received a call from a partner organization that had a child in their care that they wanted to transfer to The Treasured Ones. The child’s name was Justice, 3 months old, possible diagnosis of down syndrome, abandoned on the street shortly after birth, having a very hard time breathing, and extremely high fevers. My response was “so when can you bring him to me?” 24 hours later, Justice was brought to my home from 9 hours away. The minute I laid eyes on him, I knew he was dying. I jumped into the car with him and we sped to our town’s children’s hospital. Upon arrival he was admitted directly to the high dependency unit as doctors and nurses rushed around him. Justice spent 10 days fighting for his life through multiple rounds of pneumonia, sepsis, infections, and heart, kidney, and liver failure. We received a confirmed diagnosis of down syndrome (based on his physical features) along with blindness, and severe brain trauma. After an echo, we were given the most devastating news…Baby J had two major heart defects. Neither of which could be repaired in Ghana due to the lack of medical facilities, trained surgeons, and how small and fragile Justice was. Justice was strong enough to be discharged from the hospital and was finally welcomed into our home. He brought so much joy and laughter to our little family. Our days with Justice were filled with intense medical care and monitoring, but it brought a new level of togetherness to our household. We knew Justice’s condition was terminal, but begged God to give us months or even years with him. Baby J was in our care for 24 days before Jesus called him Home eternally. His passing was extremely difficult, yet filled with peace. Losing a child is unimaginable in every way.
Tell us a little about the work you’re doing in West Africa.
In Ghanaian culture, children with special needs are many times said to be “cursed.” People believe that a “god of the sea” implants a child with special needs into a mother’s womb due to a mistake or wrongdoing. They are given a child with special needs so they are burdened physically, financially, and emotionally. Many special needs children are abandoned, neglected, and even killed. The Treasured Ones exists to bring the love of Jesus to children with special needs, alongside their families. We want to show Ghana, and the world, that these children are not cursed, wicked or a burden, but rather a blessing straight from God and should be welcomed as full members of society. We have programs that encourage family preservation to help equip and empower families to care for their children, without ever having to think about abandoning them due to financial stress. We also have short/long term foster children who have been abandoned or needed to be removed from their home. It is our hopes that Ghanaians will see our initiatives and begin to embrace children with special needs in churches, schools, and communities. I want everyone, in Ghana and America, to know that children with Down syndrome and other special needs are perfect in the eyes of God.
How beautiful is this pair? This is Rebecca with her daughter, Ellie Grace! Click here to read more!
Click below to read all the stories from Down Syndrome Awareness Month!
I would like to introduce you to Lily! Lily is 22 months old, and today her mama, Amy, has some very touching words to share on how she learned about her little girl’s diagnosis and what she would tell herself if she could go back, knowing what she knows now. You can find Amy on Instagram at @amy_janell. Or, check out her blogs Neglecting My Kids and Life with Lily.
How did you find out Lily had Down syndrome?
I was 10 weeks pregnant and I was given a blood test and an ultrasound by my Ob/gyn. They measured the nuchal fold and discovered it was a teeny tiny bit on the thicker side, a possible indication of Down syndrome. It could be something, or it could be nothing. They wanted to send me to a geneticist, just in case because I was just this side of being an “old” Mom, but told me the geneticist absolutely would not see me until I was at least 16 weeks pregnant. I felt like it was no big deal. Just a precaution.
A week later the Doctor’s office received the results of my blood test. They called to tell me the geneticist would see me on Monday. No waiting, she wanted me in her office as soon as possible. My hcg levels were high and my papp-a was low. I didn’t even know what it meant but is sounded scary. It was a long weekend full of consultations with Dr. Google.
We were given a level two ultrasound at the geneticist’s office. Sitting in a dimly lit room watching our tiny bean kick and roll. She was perfect. How could there be anything wrong with our baby? The second ultrasound showed a “soft” marker for Down syndrome, a spot on the heart, but the nuchal fold was now within the normal range for our stage in pregnancy. So nothing conclusive. Nothing definitive. And I needed a definitive answer. I couldn’t spend my pregnancy wondering. I’m a worrier, and a planner. I needed to know. I needed to be prepared. I was given the choice of waiting until I was far enough along for an amnio or having a Materniti21 blood test drawn that day. I was all for the noninvasive super cool scientific blood test that, most importantly, could be done that very day.
It was a tense 10 days while I waited for the call with our results. Every time the phone rang my heart stopped. I was home alone with the children when the call came. My Husband had run to the store for more milk. Sometimes I feel like we spend our lives running to the store for more milk. I hid in the bathroom trying to find a quiet spot to hear the words the geneticist was telling me. “You are having a little girl. And your little girl has Down syndrome.” I collapsed under the physical weight of those words. My Husband returned to find me sobbing on the floor of the bathroom. I cried so hard I couldn’t breathe. I thought everything about my life was about to change.
What were some of the emotions you had when you got the news?
At the time of diagnosis my world exploded. All my hopes and dreams of my child and who that child would be were shattered. My life as I knew it was gone. I was being handed a challenge that was unwanted and unwelcome. I felt devastated. And angry. And guilty. My body had failed. First the miscarriage, and now I was growing a “broken baby.”
I told trusted friends, and they looked at me with sadness. They used the word “amazing” a lot. Families who have Down syndrome children are amazing. My daughter was going to be amazing. I was so amazing to have such a special child.
I started to hate the word amazing.
It felt like an accusation.
If only we were ordinary parents. Then we would be getting an ordinary baby.
But no, my baby was going to be “amazing.”
The well-meaning words of encouragement felt hollow. I was on one side of the fence staring at the desolation, a post-apocalyptic wasteland. While my loved ones were on the other side of the fence, in a place untouched by the devastation, telling me they were sure I was going to love my new home, a home they would not have to live in, a life they would share from the sidelines, but not have to live every second of every day for the rest of their lives. Their words hurt for reasons I still can’t fully explain.
I cried.
A lot.
My Husband just shrugged and said “She’s going to be my baby.”
How I love that man. He really is The Greatest. He allowed me to be weak, and to be angry, and to have ugly soul crushing emotions. He gave me space to feel my ugly feelings, and then he would talk me back to reality.
She was going to be our baby.
We know what to do with a baby.
The rest we would figure out as we went along.
If I could go back to the days and weeks after first hearing the diagnosis of Down syndrome, I would tell myself…
Don’t you cry.
Not for one single second.
This is going to be beautiful in ways you can’t even imagine. Isn’t always going to be easy but raising a child never is. But don’t you dare cry. This is not a tragedy. This is a child. This is YOUR baby.
She is going to be beautiful, and funny, and clever, and determined. She is going to change your life and it is all going to be good. She is going to fill your world with sunshine and music. She will dance. Anytime she hears even the smallest snippet of music, she will dance. She is desperate to learn the skills to sing. She laughs and it is the most contagious sound you have ever known. She is stubborn. When she decided she is going to do something there is no power in the verse that can stop her. She is a force of nature.
None of your fears are real.
Nothing you imagine is true.
Yes, it is going to be hard sometimes. You are going to have to learn and grow and find a core of steel you didn’t even know you had. But there is no down side in that. You are stronger than you ever imagined and you will be strong for her. You will learn to advocate for her. You will change the world for her.
She is your baby, and she is amazing.
Don’t you dare waste a single second crying when you could be celebrating.
She is something to celebrate.
The most wonderful part of knowing my loved one is…
She fills my world with joy. She has a full body smile that is irresistible. Her laughter is contagious. She is delighted by life and she spreads that joy to everyone she meets. Even when she is teething or ill, she smiles. Which isn’t to say she doesn’t get sad or mad or frustrated or hangry. She does. But the dominant emotion that defines her is joy. She is sunshine. I am so proud of her and how hard she works every day to learn and grow. She brightens my world and I am so grateful I get to be her Mom.
Click below to read all the stories from Down Syndrome Awareness Month!
