Today Elena, William’s mom, tells of her emotions when she first met her baby boy (aka ‘my buddy’), who is now almost 7. You can follow Elena on her blog or at @elenakatheryn on Instagram.
When William was born and we saw his face, we knew right away he had Down syndrome. In that very instant it’s like your whole world is crashing around you. No part of you thinks that it could possibly be a good thing. You wonder how it will affect his, then 15 month old, sister. All your visions of who he will be as a child, teen and adult vanish. There is nothing but grief. A beautiful baby was born but the fear of the unknown rips that joy from you.
I wish every day that I understood then what I do now. Having a child with Down syndrome opens your eyes and heart. Things that used to be a big deal, no longer matter. I am a better person just by being William’s mom. Watching him work so hard for every little milestone makes me truly appreciate every little thing that he can do. And it doesn’t stop with him. I appreciate my other children more as well. I have greater empathy for everyone and their struggles. I am able to live in the moment and appreciate what I have. I feel like it sounds like such a cliché but it is the truth.
The most important part of having a child with Down syndrome is how they impact their siblings. My daughters are both better people for having known William. I think the greatest example comes from my 8 year old. The other day she said to me, “When you are pregnant you don’t always get to have a baby with Down syndrome, so maybe when I’m a grown up I can go to an orphanage and get a baby boy with Down syndrome because that’s what I’m used to and I like it.” Her heart is that big just from loving her brother, who happens to have an extra chromosome.
Click below to read all the stories from Down Syndrome Awareness Month!
Today’s post comes from Mollie, mother to Wren. I absolutely adore this sweet family! I melt every time I see little “Birdie” pop up in my Instagram feed. And guess what! Today is Wren’s third birthday!! We are so happy to celebrate with her on her special day! You can follow Mollie and her family on Instagram at @mollieglasgow.
How/when did you find out your loved one had Down syndrome?
We found out shortly after Wren’s birth that she had Down Syndrome and a heart defect. She was born 4 weeks early and there were no indicators prior to her birth that caused her doctors to suspect any health issues or genetic disorders.
What were some of the emotions you had when you got the news?
To be honest I was just completely shocked by Wren’s diagnosis. I didn’t quite understand what it meant for her to have Down Syndrome. I remember feeling guilty, like I should have just known that something was going on during my pregnancy. I don’t remember feeling sadness but just confusion at times. I felt completely incompetent and immature to be given such a huge responsibility in being Wren’s caregiver. She was in the NICU for the first week of her life due to trouble with her body temp and oxygen levels. I felt helpless and clueless but from the beginning she was a fierce little girl. She taught me very quickly not to put limits on what she could accomplish. I realized in that first week that all that mattered is that I was there for her and that I was willing to believe in her. I might have been the worst choice, in my eyes, to have a child with special needs but I knew that I didn’t want anyone else to take my place.
How did siblings respond to the news of Down syndrome?
Wren’s big sister Willow has always been her biggest fan and cheerleader. Willow was three when Wren was born and it was a love fest between those two from the very beginning. I have learned so much about how to approach Wren’s diagnosis from Willow. From day one she has embraced Down Syndrome in the most beautiful way. At three, Willow knew nothing about Down Syndrome but would point out all of Wren’s little traits that she loved most. She would obsess over Wren’s little almond shaped eyes that were exactly the same color blue as hers. She would hold Wren’s tiny hands and kiss her chubby short fingers. As Wren has grown, we have had to have discussions with Willow about her delays in sitting, crawling, walking, talking. We would explain that Wren will have to work extra hard to accomplish things. Willow just saw that as an opportunity for her to be involved, and sometimes overly pushy, with Wren’s therapy. She probably drove our in-home therapist crazy with all her questions and literally jumping in the middle of therapy to motivate Wren and help keep her happy. When Wren was born people would always tell us that Willow was going to be Wren’s greatest teacher and biggest strength. But what I have seen is that they are each others greatest strength. Willow is patient, caring, kind, accepting and I attribute that to Wren. Wren is confident, brave, silly, loving and I attribute that to Willow. Wren now has a little sister, Pippa, who is 7 months and I cannot wait to watch their bond grow and watch Wren blossom as a big sister. Willow is PROUD to tell people that her sister has Down Syndrome because it is something that she loves about Wren. To this day when asked to describe Down Syndrome, out of the mouth of our now six year old, Willow will exclaim, “beautiful”!! And it truly is. It makes Wren beautiful. It makes Willow beautiful. It has made our life beautiful.
If someone I knew was told their baby would be born with Down syndrome, I would tell them…
Get ready for an amazing journey ahead. Not every day is going to be easy, and there will be a TON of worrying in your future but there will JOY beyond measure. Your eyes will be open to an entirely new outlook on life and you will never want to look back. You may not feel like you are cut out for this or even worthy to raise a child with special needs but, the most important thing is to love your baby and realize that God’s plan is beautiful and perfect.
Click below to read all the stories from Down Syndrome Awareness Month!
Today’s story comes from Lisa whose son, Archie, is eleven years old and has Down syndrome. I fell in love with their family when Sam was itty bitty and a friend sent me a link to the video she made of her son and daughter on World Down Syndrome Day. You can follow their journey on Lisa’s blog at www.eicherumba.com and on Instagram at @eicherumba.
I met my son for the first time when he was seven years old. About a year earlier, I had fallen in love with a photo and a blurb. And finally, there he was. Standing in front of me. Arms around my neck. Speaking excitedly in Bulgarian gibberish to his new dad. Watching in wonder as his new little sister leaped up and down in uncontrollable joy.
That day our lives changed forever. This tiny seven year old ragamuffin, wearing ill fitting clothes. A boy who had been labeled “orphan” since the day he was born, would find his family. He would finally be right where he had always belonged. My daughter would have her other half. Her heart and soul. From a logistical standpoint, it would seem that our son’s life was about to change in the most drastic way. But the reality was, our son changed our lives in a greater way than we could have ever imagined or that I can even begin to put into sufficient words.
To know Archie is to love him. He is love. We reap the rewards of Down syndrome every day. When I say that Down syndrome is a blessing, I mean it. I understand how that may seem contradictory to some. I understand that fear and discomfort surrounding anything unknown, unfamiliar, or different is natural. But seeing my seven year old daughter patiently working with her eleven year old brother, teaching him how to write his name. And then to hear the squeals of joy as they are bear hug jumping up and down when he finally gets it. That is everything.
And now you must watch the video that first introduced me to this awesome family. Seriously. I just love it. If it doesn’t come up correctly on your screen, click the video and you’ll be taken to the original page on YouTube.
Click below to read all the stories from Down Syndrome Awareness Month!
Today Steph answers a few questions about her journey as a mom to three year old Hazel. You can follow their journey on Steph’s blog at ChasingHazel.com, on Facebook, or on Instagram at @Chasing_Hazel.
How/when did you find out your loved one had Down syndrome? What were some of the emotions you had when you got the news?
I was in the car on my way to work. This particular afternoon was stormy and dark, like extremely dark. And rainy. It was coming down in a sheet covering my windshield making it difficult to see. My cell phone rang. I reached and fumbled, cursing, trying to locate it and answer before it was too late.
“Hello” I grunted. And then I listened.
Nothing could have prepared me to hear the words that echoed from the other end of the line. My OB’s voice – solemn, factual and confident. He explained, there was something abnormal with my 18 week and repeat 24 week scans. He suspected that the baby was showing signs of a “double bubble stomach,” which as it turned out, was a soft marker for Down syndrome. I was speechless, tears were rolling and I found myself begging him, through sobs, to tell me it wasn’t true.
A few weeks later we found ourselves going through a whirl wind of tests and appointments. We convinced ourselves that the “double bubble” was a isolated birth defect. There were no other signs. Until now. At 34 weeks pregnant, I had a fetal echo. This echo reveled a moderate sized VSD on the baby’s heart.
That was it. That was the moment we were dreading. As we were driving home from that appointment we entered a head space that I really don’t like to remember in too much detail. We drove for 2 hours and in that time we said very little. But what we did say was this,
“I don’t want this baby to have Down syndrome.”
The moment we walked through our door, we headed for bed and we didn’t get out for 3 straight days. We grieved. We grieved hard. We cried. We cried hard. In those days I have never felt so helpless, angry, confused and sad. I must have done something to cause this. Why was this happening to us? I remember walking past the nursery, brand spanking new and ready for our little bundle. I stood there looking in and thinking, “I didn’t buy any of this stuff for a baby with Down syndrome.”
Over the course of the week, we kept the news to ourselves and before reentering society we held on to what very little hope we had that this baby MAY not actually have DS. There was no test to guarantee that we were willing to take so we took showers, brushed our teeth and began living again. Waiting but not anxiously like most new parents, to meet our baby who we knew was going to have some pretty intense medial problems upon arrival.
During one of the darkest times in our lives, there were 2 thoughts that helped me to get to the end of my pregnancy. The first was something my husband said. He said, “Steph – if someone handed you a baby that had Down syndrome, a heart defect, and a double bubble stomach. Said that nobody wanted to love and care for this baby – YOU of all people would do everything in your power to love this baby the best way you knew how.”
And the second was from my mother. She said, “Well, all I know is there’s a baby coming in a few weeks and and once it gets here, it’s going to need us to love it.”
During the coming weeks we struggled with negative thoughts about Down syndrome and tried to hold on to any hope that our baby was not that 1 in 1000. We stayed away from searching the web and carried on with what little strength we had left. At 37 weeks I went into labour and our baby girl, Hazel, was born. She was born bearing all of the medical issues we had already anticipated and there without a shadow of a doubt were the signs of that 21st chromosome.
That was that. She was here. I was holding her in my arms staring at her sweet, tiny almond shaped eyes. And I knew. She had Down syndrome. I also knew that my husband and my mom had been right – I loved her. She was the most perfect little baby I had ever seen.
If I could go back to the days and weeks after first hearing the diagnosis of Down syndrome, I would tell myself…
To get ready…
Get ready to explode with pride every time your child accomplishes a goal or meets a milestone (because they will you know – do everything that ALL other children do)
Get ready to support someone so fiercely that you begin to advocate and educate anyone and everyone who will listen
Get ready to send a positive message about Down syndrome by simply just letting your child be who they are
Get ready for a life of hope for the future and all the barriers your child will break through (also a little fear but mostly hope because in essence HOPE is greater than fear)
Get ready to watch as your children grow together to form bonds that are deeply rooted in compassion, understanding, loyalty, support and the deepest respect for the unique individuals they are
Get ready to meet and connect with the VERY BEST community of families who will inspire you daily with the way in which they advocate for individuals with the 21st chromosome
Finally…
Get ready to LOVE. A love you could never have dreamed. An all consuming, unconditional love that expands your heart and fills your life with pure joy. This love will teach you to love better. It will help you to see and understand beauty in a way that stands alone and is incomparable to anything else.
What have been good resources for you to learn more about Down syndrome?
1. Instagram
Talking with other parents who have been where you are or who are walking along side you. Our Instagram family is always looking for new joiners. It has been a space that I have come to cherish as I watch children and families negotiate life with Down syndrome. Someone has always been where you are and others are willing to offer advice if you need it.
2. Our local children’s rehabilitation/therapy center
It has been a constant source of support and knowledge for us. They always look at Hazel as child first and foremost and her diagnosis as a part of that.
3. Blogs
There are many out there who devote and dedicate time and energy to sharing their loved ones with DS with the world. Their knowledge is first hand, accurate and often helpful. Their journey’s are inspiring and educational. They create a community where you will feel you belong. Most importantly, they write and share from a place of love and understanding allowing the message to be received in a positive, productive way. It takes away all the confusing, cold medical jargon that can often be found while searching medical sites.
Click below to read all the stories from Down Syndrome Awareness Month!
Today’s story for Down Syndrome Awareness Month offers a wonderful perspective on life with Down syndrome. It’s amazing how much has changed in our understanding of Down syndrome in just the last 40 years. Thank you, Melissa, for sharing today!
My name is Melissa and this is my brother, John. He is 40 years old and the greatest gift our family has known.
John was born in the mid 1970s. Upon his birth, my parents were told by experts that putting my brother in an institution was the right choice. They were told he would not walk, talk, or have any real ability to function in the world. That his life expectancy would be short and that handing him over to the state would free my family of the burden of a handicapped child. My mother was heart-broken and struggled with what to do. Ultimately, she couldn’t leave her little boy.
Along with my father and two sister, we committed ourselves to giving John the best life possible. A life that has seen him to go school, graduate, participate in the Special Olympics, perform in talent shows and plays, share his love of martial arts with the homeless (by offering lessons) and earn his black belt in karate. his love of learning, love of life and love of his family has time and time again taught us what is important and what is valuable.
The hardest part of John having Down syndrome is protecting him from the evil in the world which his innocence can’t comprehend. He doesn’t understand hatred, prejudice, racism, or bigotry. He can’t fathom hurting others or causing pain. His heart is full of love for everyone and his smile is contagious. He welcomes the chance to counsel others on their happiness, faith and goals.
My family and I often talk about what would have become of John is my parents chose to leave him behind. Thank God they chose to have faith in that tiny little baby. He proved the experts wrong.
Click below to read all the stories from Down Syndrome Awareness Month!
Today’s story comes to us from Sharla, Luca’s mother.
In August of 2010 I found out that my surprise pregnancy was a bigger surprise than I could imagine. I was having twins. I was shocked and in all honesty, pretty terrified. I already had two girls and my husband is gone quite a bit with work so I had no idea how I would manage everything. On the night of their much anticipated birth I got an even bigger surprise, one of my twins had down syndrome.
A special needs child was nowhere near my radar. I had zero experience with special needs and had never met anyone with down syndrome before my son Luca was born. It was a very hard time of adjustment for me. I had no idea how I could be the mom that I needed to be to my four children. As I started navigating through the down syndrome community and seeing other children with down syndrome I decided I could do this as long as my son was “high functioning.”
We all fell in love with Luca and I was thrilled when at times he reached milestones before his typical twin brother, Giancarlo. As the boys closed in on their third birthday, I noticed that Luca was different than other kids with Down syndrome. He was not as social and spent a lot of time in his own world. He also lost a lot of words that he had used for the last year. I began to research a dual diagnosis of down syndrome and autism and right after his fourth birthday he was diagnosed with autism.
I give all this background because I have a very important message that I want the world to hear. My son is the love of my life. He has been labeled “severe” by the school district and it doesn’t lessen my extreme love for him. He is the sunshine of our family. He has opened the hearts of our families and our friends. He is amazing because of who he is and not because of what he can and can’t do. Yes I still work hard to help him reach his full potential. Yes it’s hard for me to see other kids with Down syndrome who are so far ahead of Luca. However, I know that regardless of what progress he makes he has a purpose for being here and he has value.
I would have never guessed that this would be my journey but I wouldn’t change it for the world. I am a completely different person from the one that gave birth to these precious boys. Some days are hard. Fighting for what Luca needs to succeed is hard. Loving my perfectly imperfect son with a dual diagnosis is never hard.
My message to other new moms and dads is something that it has taken me four years to learn. You do not have to be everything. As you navigate the way through this new experience you will slowly build a network of amazing friends and mentors who will be there to advise you when you are lost. They will fight along side you. God has sent amazing people into my life to support me when I needed it the most.
I have fallen in love with people with Down syndrome. I am grateful every day that I get to be part of a community I would have never known about had I planned my own destiny. The things that scare us the most are often the best things that ever happened to us.
Click on the button below to see all the posts this month!
I am also participating in the #31for21 blog challenge! This is a network of bloggers writing for 31 days through October to raise awareness of Down syndrome – an extra copy of the 21st chromosome. Click the button to see other blogs participating in the challenge.
A year ago, when Ella began all day kindergarten, I struggled for a bit with feelings of frustration. I had more time than ever to get things done during the day, but I wasn’t quite sure what to do. I didn’t feel it was the right time for me to get a job, since Sam was still home with me and we were often running out to his appointments. I floundered for a bit, until I remembered my friend Jen had a growing business as a life coach, Moxy Coaching. I reached out to her, hoping she could help guide me through my frustrations. Looking back, I am so happy I did! Jen has an incredibly encouraging personality and has pushed me to dream beyond what I had ever imagined. We meet each month for coaching meetings over Skype. We set goals together and lay out a schedule and talk through obstacles to what I want to accomplish. I had never thought I was someone who would benefit from a life coach, but it’s been amazing! I dream bigger and pursue those dreams in ways I never imagined I could.
On October 6, Jen is starting another round of group coaching for women called LiveFearless. This group meets six times over three months. Group coaching offers encouragement and accountability through the other women in the group while working toward your own goals. Click over to Moxy Coaching to find all the details, but do it soon, because the group is beginning in just a few days!
Jen has very generously offered a discount to The Mango Memoirs readers for this next session of LiveFearless! When registering on the Moxy Coaching website, enter the code MANGO175 for $175 off the total cost. If you prefer to make monthly payments, use the code MANGOMONTHLY for $43.75 off each month.
Wondering if coaching is the right choice for you? Check out this survey to get a better idea.
I can’t express enough how much coaching has done for me in the last year! If you decide to join Jen, I’d love to hear. As always, feel free to send me any questions through the contact tab at the top of this page.
