KNIGHTLY | THE UNDERDOG
At first, I didn’t know how to see my son.
We’d wanted a child for so long.
Once we finally got pregnant, I had a burst of excitement about finally being a father, the journey ahead and all the dreams I had for him.
When I first heard his voice crying, I was in tears.
Early morning the next day when the doctor told us he had Down Syndrome, I was devastated. I lost that feeling of celebration.
I kept asking myself, “Why would something like this happen?”
I didn’t know what that meant for my son’s life and I didn’t know what would happen to all the dreams I had for him. When I used to see people with special needs, I just felt sorry for them and their parents. I just assumed that, because my son has Down Syndrome, he would live a life of suffering and that my wife and I would go through a lot of pain.
There he was one-day old just sleeping in my arms so peacefully, while I wept.
In that first month, I struggled with a lot of emotions, especially depression, and I let myself go. I had high blood pressure, high cholesterol, major anxiety, and was in the worst shape of my life. Going from bad to worse, I got hit with Bell’s Palsy, facial paralysis on the left side of my face, that led to months of traveling for doctor visits, medical tests and painful therapies.
It’s almost been two years now. And my son has changed my life to be so much better than it was before.
This journey has been a blessing in disguise. When Knightly was born, he was just like every other baby. I eventually got to enjoy and experience it more and more each day. Every little accomplishment was so exciting. It made me in awe and appreciate the little things we can do so naturally.
Since he started therapy at 6 weeks old, I’ve seen him work so hard to accomplish what a typical kid can. But I’ve seen him push himself and we celebrate every milestone. When I look at him, he’s amazing and it’s amazing that he’s my child.
I had never been very good with self-discipline.
But my son has inspired me to work hard in every aspect of my life.
In the past year, I’ve accomplished things I had thought were impossible for me: got into the best shape of my life and lost 40 lbs, ran my first half marathon and crossed the finish line with Knightly in my arms, dropped to normal blood pressure and cholesterol, and felt empowered enough to pursue dreams that I had always been afraid of pursuing. Despite not fully regaining facial movement, I’ve learned to be grateful for where I am and to celebrate the little milestones along the way. In a few months, I will run my first marathon. In a few years by God’s grace, I will run an Iron Man and show off a six pack. And this is coming from a guy who absolutely hated running and was way too lazy to be healthy.
More beautifully, our family has grown closer than ever.
In these past few years, I’ve been blessed to meet advocates for and other families with kids with special needs. I hear their stories. I hear about the world records being broken. I learn about the infinite possibilities and unending accomplishments being achieved from people who were born being labeled by the world as “limited”.
These people and their parents have been my biggest inspirations. Their desire, their willingness to work hard inspires me to be a better parent and, more importantly, a better person.
Kids born with special needs – they’re the underdogs.
As soon as they’re born, their diagnosis makes people think of all the things they can’t do or be. To most of the world, my son is expected to lose, not to succeed. But because he is an underdog, he has the opportunity to work hard in life to get to where he can be. And by God’s grace, he is going to grow up and blow everyone’s minds with what he can do.
I have been blessed to hear so many real life stories of overcoming incredible medical hardships, life and death situations, prejudice, social rejection, achievements and successes that bring me real faith and hope in an amazing future for children like my son.
As I learn about the treatment they endure around the world because they are seen as “limited” and “disabled”, I feel called and blessed to be a part of sharing their stories to the world, that they may inspire and change others as they’ve inspired and changed me.
We hope each of you are blessed to hear the stories of what these children have overcome and how they’ve changed the world by the age of 2.
When I used to see people with Down Syndrome, I saw them as strangers, people who made me uncomfortable, people to avoid but now:
When I see these children, I see my son.
Be inspired. Hear their stories:
- JOHNNY | The Eye-Opening Cool Kid
- ZOE | The Eyes of Love
- FAITH | The Biggest Blessing
- JOHN | The Truly Wonderful, Beautifully Normal
- BIANCA | The Smile That Breaks Down the Toughest of Men
- JAXON | The Little One with the Magical Chromosome
- ESPERANZA | The Bundle of Joy
- ROBBIE | The Fighter
- SIMEON | The Miracle
- GABE | The Overcomer
- ZACHARY | The Lifechanger
JOHNNY | THE EYE-OPENING COOL KID
I was 20 weeks pregnant when I found out Johnny had Down Syndrome. What I felt most was a fierce protectiveness. There was a lot happening and being said and all I could focus on was how I was going to protect him.
While in my womb, Johnny was also diagnosed with hydrops fetalis. It is a condition where there is an accumulation of fluid that can lead to spontaneous abortion or prenatal heart failure. With hydrops fetalis, Johnny was given a less than 5% survival expectancy.
I was in a dark hole for a good 4 months. I had gotten used to the Down syndrome. But now, I had to prepare for him passing away.
Weeks later, the hydrops fetalis started disappearing on its own—more and more until it went away. He was also diagnosed with a heart defect that disappeared on its own.
Despite having a 5% chance to live, Johnny has never had a major surgery.
His healing is completely unexplainable. Johnny is a miracle.
As he got better, it was back to Down syndrome. I had to let go of the child I thought I was going to have. For me, I just had to wrap my head around the new normal.
He was born with sensorineural hearing loss, meaning parts of the nerves that travel from his brain to his ears were not fully developed. This created mild-to-moderate hearing loss when he was born. He has moderate hearing with his hearing aids, but we’ve been given a 50% chance that he will be legally deaf by the time he is an adult. The thought of him being deaf when he grows up has been emotionally challenging for us, but we focus on teaching him to speak and sign as best as possible as soon as possible.
Since Johnny was in my womb, he has literally survived and surpassed all that has been expected of him. He is a very healthy, active, smart, amazing, perfect boy.
Johnny has opened my eyes to things I never would have seen without him. You get caught up in your day-to-day life and you don’t see the people around you. When people are different, you don’t care to pay attention, and Johnny teaches me that everyone deserves some attention. Everyone has feelings. Everyone wants to be included. Everyone just wants to be talked to. There are a lot of people out there that just get passed over.
Johnny has made my life 1,000 times better because he makes me better every single day.
ZOE | THE EYES OF LOVE
In talking with a friend, she said, “You have been in crisis for at least a year and a half.” At first, I was hurt. Crisis? I thought. Why do you believe that my child has catapulted me into a permanent state of crisis? I love her.
I have surprised myself with all of the medical challenges Zoe has faced: a brain bleed, low platelets, which required two transfusions, and torticollis at birth; a complete Atrioventricular canal heart defect in which the repair posed many post surgical complications including mitral valve leakage and pulmonary hypertension; and mild transient hearing loss, for which she wears a bone conductive hearing aid. (Don’t discount the developmental delays, too, that demand weekly therapies: PT, OT, S/L and global development.)
Although these challenges may present themselves as ongoing crisis situations, Zoe has allowed me to embrace crisis in a different way. The definition of crisis is the point at which a change occurs, or a turning point. It is a place where one must hold the tension of opposites and the unknown: between death and life, fear and love, crisis and blessing. It is a place that asks me to be present, and in this way Zoe has changed my life forever.
When I received confirmation of a Down syndrome diagnosis, for a moment I felt like a victim. I said to my mom, “Why does everything have to be so hard for me?” The diagnosis, similar to the other challenges, was a turning point and a defining moment for me was in Zoe’s eyes.
One look in her eyes (then and now) and I know I am not a victim. I am one of the most fortunate people on the planet, (an aspect of motherhood probably not unique to me), who gets frequent reminders to stay present, and to hold the tension of opposites.
Thanks to Zoe, I have learned that crisis and blessing are two sides of the same heart held together with love.
I am honored to celebrate you, Zoe, and all the others in the world with Down syndrome.
FAITH | THE BIGGEST BLESSING
It took a while to get pregnant. Once we were, my husband and I were ecstatic. This was child number one for him and child number two for me and we could not wait.
I went by myself to Kaiser for just another check-up when I received my amnio results. The nurse came in and, with no sympathy, told me our daughter had Down Syndrome and handed me a Down Syndrome information book.
I walked out of that office lost, confused. I went to the car and cried and cried.
I asked the Lord, “Why me? Why my baby?”
And, at that point, I didn’t know what I had done to deserve this.
I immediately called my husband and his response was, “Wow, what a blessing!”
My husband has been a school bus driver for special needs children for the last 15 years and he had said that the Lord had prepared him for this special gift.
My son who was 15 at the time was so excited because he couldn’t wait to prepare his sister for the Special Olympics in swimming, which was what he did best.
Since coming into our lives, my daughter Faith has changed our life forever by bringing us constant happiness.
She did not have any heart problems or any surgeries.
She has Down Syndrome. But Down Syndrome sure does not have her.
She is so full of joy, and puts a smile on everyone’s face. She has not only changed our lives, but everybody that interacts with her.
I had a very hard pregnancy but, the moment that little girl came out of my womb, there was a bond that can never be broken.
The Down Syndrome was never an issue once she was here. The what if’s, the why’s and all the fears of being a special needs parent went away. We have learned patience and to enjoy life a little more and to take goals day-by-day.
I have never loved so much in my life as I do my daughter Faith.
This baby was the biggest blessing the Lord could ever give us.
JOHN | THE TRULY WONDERFUL, BEAUTIFULLY NORMAL
Since we were older, we were excited when we got pregnant. We wondered about all the wonderful things our son would do and accomplish.
Our doctor kept pushing us to get an amniocentesis but we kept saying no.
It didn’t really matter to us. We knew God gave us this baby, had a purpose for our little one, and he was going to be a blessing.
But they kept pushing. So we took it.
5 months pregnant, we did the amnio on my husband, George’s, birthday on February 22. Our doctor called and said:
“The diagnosis was what we had anticipated. Your baby will have Trisomy 21 (Down Syndrome).”
I felt numb. I kept thinking that the amnio would turn out great so when my doctor said the opposite – I was in shock. I shut down because I didn’t know how to feel. I didn’t know what was going to happen. I felt guilty for feeling all of this because I didn’t want to affect my baby with sad emotions.
Every week, our doctor and her team constantly would contact us and say, “You’ve only got two weeks left!…Now you’ve got only one week left.”
I had had enough. I told my husband to take our doctor outside and tell them that we are not going to have this conversation again. So George took her out of the room and said,
“Don’t bring up termination again because that is not an option.”
I could tell that their mindset changed about our baby and their demeanor was one of “well, it’s just a Down Syndrome baby” rather than “oh, you’re having a beautiful baby!”
Once we heard his diagnosis, we went straight to the grindstone and started going to go to meetings at DSAOC and DSALA. We got hooked up with more books, literature and DVDs than we knew what to do with. George was awesome because he did all the reading. He didn’t want me to read all the negatives so my emotions wouldn’t affect the baby. It was overwhelming.
But when John was born, we were so grateful. I just kept crying because he was so beautiful and we just loved him. He was our baby!
We celebrate every milestone that he accomplishes, even the simplest things. The other day he learned how to sign banana! It was one sign but we were up the roof with excitement. I know that as moms we’re not supposed to compare kids as I do know there are kids out there who are signing the whole sentences. But we celebrate where John is and what he’s doing now.
The biggest obstacle John faces is his interactions with people who don’t know better.
The other day, I went to the park with John. There were leaves blowing in the wind and a few kids chasing them around the tree with their grandmother. I went over to her and the two children and asked, “Would you mind if we join you?”
One of the little girls came up to John as John was walking, laughing, and babbling. The grandmother then stared at John and saw that he was different. I don’t know if she understood exactly what the difference was but she immediately packed up the kids and left.
I was devastated. I felt like someone had just punched me in the gut.
I felt total rejection.
Then, I started to feel bad for John because of what he may face in school and as he grows up.
But then I thought to myself, “Okay, how would I have reacted if I saw someone different? Perhaps a child with autism or another type of special needs that I didn’t understand?” I would probably feel a similar way and not know how to react. That may have been what she was thinking. That may not have been. But when I take a step back to try to understand the reactions of people like that, it doesn’t necessarily make me feel any better but at least I get it.
We’ve faced times of prejudice and rejection similar to that scenario. And at moments like these, I feel pain.
It’s so hard to see someone reject my child because he is just so wonderful. I wish I could just tell them:
“Give him a chance. You don’t know him. Ask me questions if you want to know if your kids are safe or what your fears are. My son is truly wonderful.”
One of the best things I did was hang out with ladies who had typical kids. They keep me grounded. I couldn’t believe the different medical complications my friends with typical kids would face. When doctors or other people learn your baby has Down Syndrome, then almost every problem that arises is attributed to the fact that he has Down Syndrome. But moms with typical kids face the same problems. Our child just happened to have those particular issues and, though it may be more common in kids with Down Syndrome, it isn’t just because they have Down Syndrome.
One of the things that I firmly believe is that we have to treat our kids just like typical kids – same expectations, same boundaries, same love.
Our kids are just kids! Seriously! And that’s how we should treat them.
Everyday, he is showing people that he’s a normal person too with just everyday needs and everyday wants and desires. With the people who’ve been fortunate enough to really get to know him, they realize all the capabilities he actually has. John breaks the expectations people have of him when they first meet him. We’re constantly told how awesome he is.
I know there may be parents out there who just found out their child has Down Syndrome. I want to share the best words of wisdom I’ve received on this journey.
After we found out John had Down Syndrome, there was one nurse who checked up on us. She grabbed my hands, looked me in the eyes and said,
“You’re going to love this child just like you did before. You’re going to care for him. You’re going to love him. This child is going to be the love of your life.”
When she said that, it freed me to love John. It was one lady, one total stranger. But I will never forget her words. Those words are so true.
I honestly want to say I am grateful for this journey.
It has opened the doors to meet people we never would have met, make bonds that will last forever with people in all walks of life. It has changed us for the better.
Every child is a miracle. God breathed His existence into each and every one of us. We are all miracles. But John is a blessing all the way around.
He is amazing. He is flourishing. And, ultimately, he’s just like every other kid.
BIANCA | THE SMILE THAT BREAKS DOWN THE TOUGHEST OF MEN
Bianca’s diagnosis came as NO surprise to us.
After being told by the geneticist that our child had a high probability of being born with a severe disability of some kind, we knew the road ahead would be a tough one.
Due to Bianca’s rare form of Down Syndrome (her #21 chromosomes are translocated instead of having an extra #21), doctors were unable to determine how the chromosome defect would impact her chances for survival, overall growth and development. Once we received confirmation of her diagnosis, we really didn’t have time to “feel” as we were more concerned with her overall health and survival:
- After being born prematurely, Bianca spent 8 days battling for life in the NICU.
- Before her 1st birthday, Bianca underwent heart surgery to repair a heart defect.
- After surgery, she developed a blood clot in her leg and was forced to stay in the hospital days longer than anticipated.
- After being released she endured 6 months of blood thinning injections twice a day.
When she was released from the NICU, feelings of fear and uncertainty constantly flooded our minds. The list of “she probably won’t be able to…” and “don’t expect her to…” played in our heads.
But today, Bianca continues to amaze us every day as she finds ways to adapt to some of her daily challenges.
She is a loving angel in disguise.
Bianca has helped reaffirm to us that every life is valuable regardless of the value in which society tries to place upon it.
She has an amazing sense of when an unsuspecting stranger is in need of her “Hi!” and huge grin.
Beautifully, Bianca has showed us the true power of a smile – and how it can break down even the toughest of men.
JAXON | THE LITTLE ONE WITH THE MAGICAL CHROMOSOME
Once I was pregnant, we knew Jaxon had something.
We waited two weeks for the results from our amniocentesis. Our son tested positive for Trisomy 21.
How was I going to tell Todd? How was I going to tell him that our son has Down Syndrome? How was I going to tell our children?
I tried to keep it together when I called Todd – but I didn’t. I became hysterical and he drove straight home. We talked and cried all night and fell asleep holding each other.
The next morning we went to the doctor. During the ultrasound, they pointed out his heart defect along with other medical issues, but Todd & I just saw our baby on the screen.
Jaxon was sucking his thumb!
He was swimming around completely oblivious to what was happening in the room outside of his comfy, cozy amniotic pool. We watched him move around for that entire hour.
They told us about his heart defect in detail. He may have a fistula and that his esophagus may not go all the way to his stomach. We cried and the doctor talked and talked ‘til the room spun.
We were immediately pressured to terminate and told to make the decision right then and there. We had never considered not carrying our child to term. We had just seen him suck his thumb! How could we think about terminating now?
The only decision to make was whether or not to continue with these doctors.
Truly, I feel like that was the day we won the lottery!
Jaxon was born with a magical chromosome on July 28. In his short 18 months, he’s overcome quite a few hurdles:
• In his first 6 weeks, he was in the NICU trying to figure out how to breathe, eat, and regulate his body temperature and oxygen.
• 2 weeks later, he was flown by helicopter back to CHLA with a severe intestinal sensitivity.
• Another 2 weeks, he spent in the PICU.
• At 6 months, he had open-heart surgery.
• At 8 months, he had his tonsils out and tubes put in.
Every single time he’s been in the hospital, he’s won the hearts of everyone who sees him! He is a fighter, a snuggler, a champion, and a blessing to our family.
A man on Facebook asked me, “Can you tell me why having a child with Down syndrome is a blessing? I’m not trying to be rude…but really?”
Here are all the wonderful and priceless things they never tell you about when having a child with Down Syndrome:
1. Children with Down Syndrome usually have a “baby” appearance for longer. Childhood typically flies by too quickly. With Jaxon, I relish every minute. Give me baby fat, give me tiny clothes, give me soft baby snuggles, and hear me roar.
2. Children with Down Syndrome need a little more help reaching their milestones. They do everything a bit later on the developmental charts. But the wait and extra effort make every milestone a cause for celebration – like a World Series win! No joke.
3. Having a child with Down Syndrome will soften your heart, allowing you to accept people as they are, regardless of their abilities. This is a gift.
4. When you have a child with Down Syndrome, new people whom you will cherish will come into your life. Having a child with Down Syndrome breaks down social barriers, and you find yourself with other parents, acknowledging that you both have something great to share with each other.
5. Last but not least, raising a child with Down Syndrome is wonderful and amazing because having children is wonderful and amazing. It makes you realize that a mother’s love is not based on a child’s ability, but on your own ability to accept and give.
Parenting is hard. Period. But parenting is also eye-opening, life changing, painful, beautiful and worth every minute, and the same goes for raising a little one with a little extra magical chromosome!
Jaxon is an angel – sent to show what a priceless gift that he and other people with Down Syndrome are to the world.
ESPERANZA| THE BUNDLE OF JOY
When Esperanza was born, I wasn’t allowed to see her.
It was hours later when I was told, she was “a little different.”
Finally, they let my husband come and tell me that Esperanza had Down Syndrome.
We were very overwhelmed.
We didn’t know anyone with Down Syndrome in our family. It was something different. We knew we had to get prepared. There were people around us who were optimistic saying she would do well and be great. But there were others who were very negative, blaming us for why she was born that way. To this day, there are people we know who will barely greet her with anything more than a hello. No hug. Nothing.
When Esperanza was 3 months old, her right lung collapsed. The doctor was saying she just had a cold and nothing was wrong. But one day, I saw her aspirating very badly so we took her to CHOC. It was at CHOC that we learned she had pneumonia and her lung had fully collapsed.
She has since been through a lot of hospitalizations. There is a deep scar in her lung and an immune system that doesn’t work for her anymore so every time she gets a cold she is at CHOC for 1-2 weeks.
She is now 2 years old and she definitely keeps us on our toes.
She is our bundle of joy – bundle of hugs and kisses.
We’re told by people that she won’t be able to do much, to play like other kids, or understand what they’re doing.
But she does.
She’s different, all right. She’s smart.
And, despite all she’s faced, she constantly proves to everyone around her that there’s nothing she can’t do.
ROBBIE | THE FIGHTER
Just after the excitement of finding out we were pregnant the second time around, our doctor called to tell me that we had a 1 in 5 chance that our baby would have Down Syndrome.
I started crying when I first heard because I didn’t know what it meant. So I immersed myself in everything I could read about Down Syndrome, which looking back now may not have been the best thing. But, for months, that’s what I did.
After taking the new Maternity 21 tests and going to the doctor’s office three times to finally do the amniocentesis, all the results showed that our son had Down Syndrome.
The geneticist sat us down and told us that our son’s IQ when he grows up will probably be, at best, that of a 6 year old. It was unfathomable to wrap my head around the whole thing. So I pursued meeting another parent who had a child with Down Syndrome. I met with a mom and asked her to coffee and we spoke for hours and hours. She made me feel at ease about what they went through so that was a great experience.
Then, on July 10, 2012, 4 weeks before Robbie was due, I woke up and saw that I was spotting. I knew that wasn’t good.
The doctor immediately had me come in and we saw that, not only were my contractions 15 minutes apart, but Robbie’s heart-rate would drop every time I had a contraction. Luckily, the doctor’s office was right next to the hospital, so they wheeled me into a bed and hooked me up right away. I was told that there were 3 other c-sections waiting ahead of me and that I’d probably deliver sometime that day.
As I stared at the monitor, I realized Robbie’s heart-rate had stopped. I started to panic and held my belly and pushed around but I could no longer feel my baby moving. I could no longer hear him on the monitor and I kept yelling out, “He’s not moving! He’s not moving!”
Suddenly, the room was filled with doctors, specialists, my OB and I put on sheer panic and started to shake. I remember the doctor going to my face and saying, “Calm down. We’re going to do the C-Section right now.”
I asked him, “Is everything going to be okay?”
And he replied, “We have to do this now!”
The anesthesiologist had me take a deep breath. And before I even realized it, I woke up and it was the next day.
I was in the room all by myself wondering, “Where the hell am I?” I tried to get up but felt excruciating pain and screamed.
The nurse came in and explained to me as I panicked that I had had my c-section.
I was shaking with pain as she asked me what my pain level was from 1-10. “I don’t know. 12?! Where’s my baby? Where’s my husband? Where’s the doctor?”
I was repeatedly being told that I had to calm down first, which only made me feel worse as panic started to rise. They gave me morphine twice but the pain was still high.
I was finally told that Robbie needed special treatment and attention that could only be given at CHOC in Orange.
I asked, “Is my baby alive?”
The nurse said, “He is…but it’s because of the machines.”
I had to see him. I demanded that they couldn’t take him away without me seeing him. But I was being told I couldn’t see him ‘til my pain level was low enough.
“What does my pain level have to be?!”
“Then, I’m a 3! Let’s go see him.”
They wheeled me to his room and got me as close as possible so that I could reach out my hand to touch his hand. His hand was lifeless. I picked it up and there was no life in it whatsoever.
I later learned that Robbie had flatlined for 10 minutes straight before they could get his heart going again. Because of all the trauma to his body, all the organs went into survival mode so he got so big and swollen.
I rubbed his little hand and told him, “You fight. You fight. You fight. God put you on this earth for us for a reason. You fight! I will see you soon. You fight. You do not let go. You fight. Mommy loves you. Daddy loves you but you fight, you fight, you fight.”
That’s all I got to say to him when they took him away from me.
I didn’t get to see him again until 4 days later.
In the meantime, I was in the maternity ward hearing babies crying. All I could do every second was pray that, when I get to see him, he was going to be alive and that I wouldn’t get a phone call telling me that he’d passed away.
On the 3rd day, my doctor came to see me and I kept telling him, “I need to see my baby. I need to see him. I need to know he’s okay and he needs to know that I’m here. No one is telling me if he’s going to survive.”
The doctor answered, “No one can tell you that right now. We can’t guarantee it.”
Another day passed and I was finally able to see him again.
Once I saw Robbie, he was in an isolated room in a clear box with all these machines attached to him helping him stay alive. I remember talking to the doctor at the NICU to ask how he was doing and if he was going to make it. Again, I was told they wouldn’t know if he could. So I asked, “Can I hold him?”
“You can’t. He’s so fragile right now that the sheer touch can make things worse.”
“I can’t even touch my baby?”
“I’m sorry you can’t.”
I understood but persisted to ask if I could just put my hand near him so he could feel my warmth. The doctor finally allowed me to try just to see how he’d react.
As soon as I put my hand near him, his heart rate and the machines started to react.
Then, they let me talk to him.
“Baby, Mommy is here. You fight. You keep fighting. I’m going to be here everyday. You fight, you fight. You let us know if something’s wrong. You make those machines sound as loud as you need and you let us know.”
As I spoke to him, his heart rate changed.
Everyday, I stayed with him as early as I could and as late as I was allowed.
On day 14, I was able to hold my baby for the first time. I had read about the importance of skin-to-skin contact in the NICU. Robbie had had seizures. They had to give him blood transfusions and several platelets for him because nothing would regulate in body.
I unwrapped him so that his skin could touch mine and then I held him and just rubbed his little back, telling him it was going to be okay and that he had to learn how to breathe.
“Just breathe, Robbie. Breathe with Mama.”
After that, everything changed. He started regulating his temperature better. He started breathing better. In 2 days, he was off of oxygen and the warming light. Within 3 days, he started feeding and the swelling went down.
He was in the NICU for 21 days.
Down Syndrome has made me a more compassionate person – it’s made me appreciate every little thing - from him drinking from a bottle to being able to nurse (we were told he would probably never be able to do that). It makes me want to be there more for other people. It has brought our marriage closer together. And it has brought me closer to God.
Having the diagnosis of Down Syndrome is NOT the end of the world, it’s a very small part of who they are. It’s not an end all diagnosis. It doesn’t mean your child won’t be able to do things. They’re human beings – little people to grow up to be adults and be able to do things that typical children can do. They can go to school, go to college, hold a job.
Robbie can smile, be happy and enjoy our laughter, and our tickle times. Down Syndrome does not define Robbie. He is a fighter and he can do whatever he wants in life.
SIMEON | THE MIRACLE
We are proud parents of 9 children: 1 home-grown, 7 adopted, and 1 waiting for us in heaven.
On Oct.7, 2012, our precious daughter, Zemirah Joylena, was born 9 weeks early straight into the arms of Jesus. She was the biological sister of our youngest daughter, Jubilee. As we waded through deep grief, God surprised us with a miracle…our son, Simeon.
It was New Year’s Eve in 2013. An agency had posted on their Facebook wall with an urgent situation of a baby boy who was 7 weeks old that needed an adoptive family immediately. The birth family had 10 days to meet and choose a family for their baby before their visa was going to expire.
His parents, who live in China, came to America to visit their daughter. While here, Simeon’s birthmother gave birth. Their plan was to take their son home to China with him until the diagnosis of Down Syndrome was confirmed. Out of the deepest love for their son, they placed him for adoption. They had great concern that he would not receive the medical care, therapies, and acceptance he needed if he were to go home with them.
When we saw Simeon’s little face, we just knew he was to be our son. We showed his photo to all our kids and they kept saying, “Can we adopt him?! Please!”
We asked to be presented to the birth family. Initially, they weren’t open to a larger family adopting their son. But by God’s divine hand, we discovered that our very dear friend was actually translating and representing the birth family. Because she knew our family personally, she was able to share about us to the birth mother.
After several precious visits with the birth mother, on January 10, 2013, Simeon was placed in our arms forever. We continue to have a beautiful open adoption with the birth family.
Within hours of Simeon being home, we noticed he was having difficulty breathing. He would stop breathing all together. We were quickly launched into a medical journey of protecting and saving his life. Many hospital stays, doctor’s visits, and numerous specialists followed. We learned that Simeon has severe obstructive sleep apnea caused by narrow & collapsing airways. His sleep study showed that he would stop breathing over 100 times an hour.
4 short weeks after coming home to us, he had a tracheostomy. Following his surgery, he suffered from back-to-back hospital stays with pneumonia and trach infections which led to chronic lung disease. His lungs continued to deteriorate so we ultimately made the decision to have a fundoplication and g-tube surgery when he was 11 months old to protect his lungs from aspiration. His lungs are now improving but he is still our little fragile guy. He is slowly getting stronger and bigger.
God has already used his life in miraculous ways.
Because he was born with Down Syndrome, his birthmother found salvation in Jesus Christ. She accepted Christ as her Savior during the time we spent together. She shared with us, “If I had known that Simeon had Down Syndrome while pregnant, I would’ve no doubt aborted him. But I now know that God didn’t let me know because He wanted me to discover him and accept Him as my Savior.”
Because Simeon was born with Down Syndrome, God has stirred the hearts of many families to adopt a child with Down Syndrome. He has had thousands of people watch his journey.
How our son has changed our lives is virtually impossible to put into words.
He has brought us unspeakable joy in the midst of grief.
He has taught us resilience, endurance, pure love.
We have learned to trust and draw strength from God in ways we never understood.
We are incredibly honored to be Simeon’s parents.
GABE | THE OVERCOMER
At 18 weeks pregnant as we found out the sex of our baby, we were told that Gabe had a life-threatening medical problem of fluid in his brain called Hydrocephalus.
Every week, we were given ultrasounds just to see if Gabe was still alive. We were told that, most likely, he wouldn’t make it.
And, even if he did make it to term, he would require brain surgery out of the womb, a surgery he also may not survive.
In an attempt to learn why Gabe had developed Hydrocephalus we were given an amniocentesis. When we returned for the results, there were no answers about the Hydrocephalus BUT that’s when we learned that Gabe also happened to have Down Syndrome.
Matt and I were already grieving that Gabe may not live at all because of the Hydrocephalus. When they informed us of the Down Syndrome, it was another devastating blow. For us, it was as if a bad situation couldn’t possibly get worse.
And then it did.
We only knew one person with Down Syndrome – a good friend’s son who has such a severe delay that, although he was twelve years of age, he was functioning at a one year old level. He doesn’t speak and is completely reliant on his family for everything. He is in diapers and unable to take care of himself. So, at that point, we assumed the worst.
I was afraid my son wouldn’t live. And, if he did, I was afraid I would never be able to have a conversation with him. Matt and I both went deeper into depression.
As we read up on Down Syndrome, we found out that each child was different and that many grew up, learned to speak, function and have good lives. That gave us hope for a brighter future.
When we finally got to meet our little boy, we learned just how precious and perfect he was. The Down Syndrome didn’t matter anymore. We were just so thankful he was alive. We fell in love with Gabe and rejoiced in him – just the way God made him.
Gabe miraculously overcame his Hydrocephalus – he was not supposed to survive.
After delivery, my blood cells were attacking his blood cells. He was saved by a blood transfusion and also overcame this life threatening condition.
On day 6 in the NICU, Gabe also overcame a hole in his heart that miraculously closed on its own.
We are the recipients of a modern miracle. Gabe is an overcomer.
He is living proof that God still performs miracles.
We have been shown God’s grace and power as he saved Gabe’s life and answered our prayers. We’ve experienced God’s love and support in many ways throughout our pregnancy. God brought people around us after Gabe’s diagnosis who encouraged us and prayed for Gabe to live. We can feel and understand how much our parents and how much God loves all of us.
Because of Gabe, we now truly understand unconditional love.
ZACHARY | THE LIFECHANGER
My husband and I are older. We both have grown children who are older so we thought we were going to sit back and just enjoy life. God had other plans.
When I first found out I was pregnant, I was 43 years old and I was really not wanting to start all over. I found out he had Down Syndrome when I was 12 weeks along. I was scared, hurt, confused, mad, sad and I kept wondering, “Why me?!” I didn’t know anything about Down Syndrome and was sure I didn’t want to find out. So after I talked to my husband and oldest daughter, they said they would support me on whatever I decided.
So I decided not to keep him.
But all that night, I lay on the bed crying.
I could feel Zachary move.
I never thought I could feel him move so early. And that’s when I realized God had chosen us and we were going to do this.
Zachary is now 2 1/2 years old and I can’t say everything since was easy but it was worth it:
- When he was 2 months old, he had to have a trache put in because his trachea was too small and he was having trouble breathing.
- In May 2013, he had reconstructive surgery where they took a piece of his rib cartilage and recontstructed his trachea. During the surgery, he somehow got burned on his head and back.
- Every month from May-December last year, we went to the UCI Burn Center to remove scar tissue around his trachea.
Because of him, my husband and I have learned a whole new way to love and appreciate children with special needs. So we started The Upside of Down to spread awareness.
We both ride Harleys and decided to have a fundraiser for the DSALA and bring awareness to DS. Our first event was in 2012, we had over 500 people there with custom cars, bikes, bands, vendors and food. It was a great success. Every year, it has grown bigger and better each year.
We also started a ministry at our church, Calvary Chapel Montebello: the Calvary Chapel Crusaders for kids with special needs.
Because of Zachary we have met so many amazing people and have been able to help others.
I wouldn’t change Zachary for anything.
At just 2 years old, he has already been made an Honorary Teamster Horseman, skateboards with The Skate Connection, and has touched so many lives like ours.
so what can you do?
Please be a part of changing this world for children like ours. For this World Down Syndrome Day, will you share our stories?
Share the photo below or any of the stories above!!! Instagram. Facebook. Twitter. Pinterest.
Backlink here to raise awareness for World Down Syndrome Day.
From our hearts and with all our love – thank you,