A Son with Down Syndrome- a Father’s Pride & Joy

March 14, 2021 by Dawn@cedarsstory.com 2 Comments

One of my favorite kinds of stories to share on this blog is the perspective that comes from dads. It is rare, in fact, we only have about 6 stories on the blog written by the all important dads, but they are so much more powerful than most fathers realize. I first became aquainted with Shawn when he purchased some jewelry from our 6arrowsdesigns website and his natural desire to advocate for his son led me to ask for his story. Shawn beams with pride and joy when telling of his son . A son with Down Syndrome, one father’s pride and joy.

In October of 2014 we found out we were going to be parents. I was 37 years old and we had tried for years and just figured it was not meant to be so this truly was a blessing. On Christmas Eve I came in from work and my wife was sitting there and told me we were having a little boy!! I was blown away and could not explain the excitement I felt at that moment. Right after telling me that, her eyes filled with tears and she told me the test for Downs Syndrome came back positive for our son.

You would think that something like this would be relayed to you face to face but it was just a casual phone call from the doctor’s office. I sat there in shock and immediately had to pull it together. I held her and told her it will all be ok. I was shocked, and a fear like I have never felt came over me. Not the fear of the diagnosis but a fear of an unknown so deep it had a hold of my soul. Most situations a person can stop and breath and think about it and then put forth a plan to adapt to them. Not this one. I was lost and didn’t know what I could do or what to do. We knew nothing about it or what was to come for us. Will he be ok, will we be ok, will we be able to provide the proper care for him and countless other things ran through my mind all at once. I was scared, angry, upset, lost and yet still trying to be positive and happy we were having a little baby boy!

Growing up I had an uncle. He was actually my great uncle. He was always so happy and nothing but a pure joy to be around. I was very young but I remember him always being so much fun and playing with me. I remember something different about him but was never quite sure what. Uncle Billy passed away while I was still fairly young and at some point in life, I found out about him and down syndrome. Now that I am much older and much more aware of things. I am so happy to have had the few years I had with him. See now I realized that he was simply just Uncle Billy as how it should have been. That’s what all of us have to realize. We are all just regular humans and a diagnosis does not define who we are.

Some of our family was already at my house and others immediately came over and we told them all at once I think. Or most of them that were there. I don’t exactly remember who all was there that day. We were not worried at all about telling them. Our family was and is our biggest support group and will always be there for us no matter what comes our way and us the same for all of them.

Just when you thought the worst was over, it was just beginning for us. The next visit we were told there were complications and he probably would not make it to 26 weeks. They asked us if we wanted to explore (other options) or intervene at 26 weeks if he made it and we said no because we both agreed that it was in God’s hands at that point and we were having him no matter what, he was our son and no matter what cards he was dealt we were determined that he was going to be part of our family. We went to the doctors 4 times a week for ultra sounds and testing and every time just praying to hear a heartbeat. Time went on and the agonizing weeks past so slow you can’t imagine. Bad news after bad news and scare after scare is all we knew for what seemed like an eternity. Well finally on May 12th, 2015 at 37 weeks Jase made his first appearance and what an appearance it was!!! We had a baby boy who by the grace of God was perfectly healthy and just happened to be blessed with an extra chromosome. He had no health problems that were told he would have or could possibly have what so ever. He is the most amazing thing in my life and I don’t know what I have done all those years without the little guy. I am just a regular guy and a dad. Jase is who makes me a better person, he is who makes me the lucky one.

Backing up some. Once we were diagnosed it did not take long and my wife went into over drive. She began reading and researching and gathering any and all information she could. But most of all she went into full blown momma protection mode and although I was supposed to be the strong one, she totally stepped up and ran the show. She showed a strength and determination and immediate love like I have never seen or known. Because of her, we made it though the terrible times we went through, because of her our fears were pacified because of her I have a little boy that I love to the ends of the earth!!

Jase is now three about to be four this May. In these first so very short four years, I have learned so much. I can tell you that any fears you may have, let them go. There is absolutely nothing to be scared about. The love and joy you are going to get from your little one is like nothing you can even begin to imagine. You are going to learn so much from them every single day and hopefully they will pick up a few tips from you but for the most part they got it all figured out! If you don’t have it, you will quickly learn patience.

a son with down syndrome father's pride and joy

Jase does what he wants when he wants and only when he wants. When you think things are not progressing as they should remember you are on their schedule, they are not on yours. For us it started off so simple. Just him rolling over for the first time was an amazing milestone for us. Then sitting up then crawling and then walking. Now I can hardly keep up with the little guy. The love he shows is incomparable to anything I have ever known. No matter how rough the day may have been or how bad I think a situation is, as soon as I get home to him, nothing else really matters. Now that he is here, everything I thought in life that mattered and was soooo important to me and had to be done immediately, is really no big deal at all. The little simple things like hearing him yell out Daddy when I walk in, or seeing him cuddled up with his mom sleeping or singing with him while we are driving some place and just being with him is where its at. That’s what matters and it matters because he matters and has blessed us with a love and life that I never knew was possible.

When asked about himself, Shawn says “I am 41 and I have been married to my beautiful wife for 16 years. I am former Marine and was stationed at Camp Lejeune with the 26th MEU where I completed two deployments. I love spending time with my family and
absolutely love the outdoors. Hunting and Fishing has always been my
favorite past times and I am looking forward to sharing this with my wife
and son now that he is getting old enough to tag along. Watching our son grow and enjoy time with us is something that I never thought would happen for us. Now that it has, I am not sure what we did for the last 16 years but
look forward to many more years of love, laughter and happiness!”

Down Syndrome Diagnosis: a Dad’s perspective

November 16, 2020 by Guest Post 1 Comment

A Down syndrome diagnosis can be scary and be concerning at best, but what is it that a dad thinks? Down Syndrome Diagnosis a dad’s perspective helps us see just one of those points of view from Eric, whose son, Zane, is an adorable, ginger-haired baby, diagnosed with Down Syndrome.

[Read more…]

Finding Beauty and Dreaming Despite a Down Syndrome Diagnosis

January 12, 2019 by Guest Post 5 Comments

We have had the privilege of sharing over 100 stories of moms receiving a Down Syndrome diagnosis either prenatally or at birth. However, it is the dads that sometimes really need to be heard from. The silent partners that sometimes don’t share their perspectives as they remain strong and silent. Other dads need to hear it too though. Here is one dad willing to share…

It’s a beautiful day…

It was a beautiful day. Sun was shining, temperature was nice, we were full of energy. Ready for the prenatal screening, a normal check after 20 weeks of pregnancy. As usual I was offered a chair, somewhere at the feet of my wife. So far so good, we were joking, looking at the tiny human jumping around. The tiny human that came as a huge surprise. But not for a moment we were shocked – we were thankful and happy right away. Somewhere halfway the appointment I started to notice something wasn’t right. The sonographer became more and more quiet. The temperature seemed to drop. After moments of silence, she started talking again.

“There seems to be something wrong. I can’t see the connection between the ventricles in the baby’s heart. I have to send you to the hospital.” Our joy had vanished. Tears came. So far we had lived the perfect life. Happily married, blessed with amazing, healthy twin girls, another healthy and happy boy, doing jobs we love, doing things we like. I asked: ‘did you not see it, or isn’t it there at all.” After a couple of long seconds she answered: “It isn’t there. But it’s reconcilable with life.”

…don’t let it get away….

We cried for minutes, outside, hugging and hope returned fast. We had to pick up our kids, who – as always – were loaded with joy. The next day we went to the hospital, where the specialists looked at our baby. A new world opened for us, being at a children’s hospital. After the ultrasound we had to wait for a team of specialists to tell the results. They were clear. Our baby had a huge hole in his heart. But: it looked good, and it is something which can be fixed with great chance of healing. So far so good. Then the cardiologist was quiet for some moments and she said “well, there is something else with these heart defects. There is a 50% chance your baby has Down syndrome too, as this heart defect is one of its markers.”

I faded out, my mind turned into fog until the cardiologist, somewhat uncomfortable, put her hand on my shoulder for a second.

The next day we decided to go for clarity and requested an amniocentesis to find out if it was true.

…sky falls.

We had a tough week ahead. To be honest: I didn’t know anything about down syndrome. Well, I knew about the cute people on television. They seemed cute, but also people that you could really connect with, somehow. Either way, for us they were people far far away, you saw them once in a while somewhere. But never ever could I picture one of those people being my son – yes, we found out it was a boy. The next week we got a phone call. Our fear had become real: the boy had trisomy 21. This time it felt like we literally collapsed because of the worst earthquake ever. We felt as if our lives had ended. Unless, of course, we decided to end the pregnancy.

“Grace finds beauty – in everything”

It crossed my mind a couple of times. It would not be fair to our other kids to have a little brother who would suck up all attention. It would be the end of our marriage – this weight was something we could not carry. And a little boy with a huge heart defect and Down syndrome wouldn’t really have a happy life, right? But these thoughts didn’t last long. In fact, we had such an amazing time together, and with friends and family. Intimate talks, opening up our hearts, sharing our doubts and vulnerabilities. It was a time of many tears, laughter, and growth. And slowly but surely, love won. Love for each other, for our girls and boy, and of course our baby boy. Happiness returned. And yes, frequently happiness got covered by clouds and fears.

“This is not a burden. It is an adventure!”

And then the new year started, with a huge bang. All of a sudden Victor Judah was born, three weeks early. Our warrior. A very smooth birth. A little baby, crying loud, healthy color, huge testicles, 10 fingers, 10 toes. A perfect baby. After three days we got to go home. Our adventure had started. And boy- did we learn a lot. We had to work hard, just like with the other kids. Victor seemed to be the pee master, peeing almost every time when we opened his diaper. Victor amazed us, amazed the doctors, amazed everyone who visited him. This boy has something special. He is pure, and pure joy. Most things I thought to know about people with down syndrome were just wrong. Victor is in most ways just like anyone else. But look him in the eyes and you meet an angel. It is like heaven opens up. It is like he is saying: “just be yourself, and love me with all you have. I am worth it – and I love you anyway.” Victor has learned me to love unconditionally. Raising kids is more about helping them find happiness, and less about what I think what makes them happy. So Victor became quite the teacher for me. We learned to slow down, live by the day, and enjoy the little gifts we are given daily.

Of course there are some tough battles to fight with Victor. Like when Victor caught a virus, only a few weeks before the open heart surgery. It was too much for him – and he had to stay at the ICU for weeks. We saw lots of nurses and doctors. I could write pages about them – some really loving and caring, and some less understanding. But our experience at the Intensive Care was somehow beautiful. Walking side by side with parents standing next to their kids who fight for their health creates unexpected bonds. It makes you look different. And to bring your child for a 6 hour surgery, knowing they will cut his chest open, and stop his heart from beating is hard, the hardest thing I ever did. But great is the Victory when you get the call: surgery is done, it was successful. Even greater is the Victory when your boy opens his eyes. Smiles at you. Gets to go home with you. Enjoys vacation. And grows, learns, laughs louder and louder. It heals us probably even more than him.

“T21 babies looking for dads willing to fight for them, for the right to exist”

There was a time I thought that I had to be an advocate for Victor, for the weaker human. Now I see Victor is his own advocate. But I need to be his dad. A dad that fights for him. That battles the stigma. That opens eyes, hearts and doors so other people stop discriminating and see the human Victor. The boy with special gifts, who happens to may have a few special needs. I know most fetuses with down syndrome are not born. It is our mission to fight the elimination of gifted people with T21. I hope to inspire dads-to-be (and moms) not to fear if they get the diagnosis down syndrome. That the voices full of stigma and false information get drowned out by voices of loving parents and their amazing kids. I hope to find lots of dads fighting by my side for the future of special kids. Making way for stories of unconditional love, of faith and victory. Opening the eyes and hearts of people at governments, and hospitals. Showing them it is not ok to erase people just by misjudgment, and be silent about it. I won’t accept that I am part of a generation that willingly choose to erase a whole group of special people. Let’s show all the couples receiving this diagnosis: life will not end! It might change, but let’s show them that with great battles come even greater victories. It will change your heart, your relationships, your way of living – in a beautiful way.

“You may say I am a dreamer”

Living with Victor makes us dream. About his bright future, with many victories. And about our future as a family. We started dreaming about having a huge house, with lots of space, surrounded by land. A place where we can create space for people who are tired of all the stress and the performance related pressure. Maybe hunted by questions, maybe the victim of stigma’s themselves. In that place we want to share the wisdom from Victor. Where through Victor’s lessons people can find rest, and learn to love unconditionally. Call me a dreamer (to afford such a place we need to win at least the lottery), but until that day we will share the lessons, the hard lessons, the lessons of love and exceeding joy with the world. We see Victor touches lives, opens hearts. Let him be an example.

Victor was fearfully and wonderfully made. And yes, our road has more bumps. But with the bumps comes way better views – and for that we are deeply thankful.

Down Syndrome Diagnosis- A Father’s Perspective

August 19, 2018 by Guest Post Leave a Comment

Many moms find comfort in the words of other mothers when learning about a Down’s Syndrome diagnosis, but how are the dads feeling? Though they all feel differently, one dad feels lucky. A Down Syndrome Diagnosis, a father’s perspective, and the unconditional love that comes with it.

My wife and I received the diagnosis of our son having Down syndrome during one of our first prenatal tests, and my wife and I were both confused as to what Down syndrome was, we knew no one with it, and was a big unknown to us. We did a 2nd test, the amniocentesis test, which ran a risk in itself, but my wife and I had to know. The test came back, 99.999999 percent for Trisommy 21, Down Syndrome.

[Read more…]

A Dad’s View on Down Syndrome- Felicity Flicks on Fleek

August 27, 2017 by Guest Post Leave a Comment

I have to share that I really didn’t know anything about Instagram until we had our Cedar. A meeting with the mother of an adult with Down Syndrome told me that I would find all kinds of amazing children on Instagram, ones that happened to have an extra chromosome like my Cedar. Roxanna was right, and my heart soared as I watched pictures and video clips scroll by giving me hope. One of my favorite accounts, in the beginning, was that of Flicks_on_fleek. I saw beauty in those sparkling eyes, I saw hope and I saw the tenacity of a determined little toddler. I recently reached out to Felicity’s dad to see if he was interested in sharing his thoughts from a father’s perspective, thank you Scott, thank you and your beautiful wife for sharing Felicity with the world.

We learned of our daughter’s Down Syndrome diagnosis at birth. The pregnancy was going just fine until the final doctor visit. My wife had not been feeling well that day so the doctor sent her to the hospital to get some tests done. That is when this roller coaster started. The doctor came into the room after looking at the ultrasound and said “you are not going home today, the baby has fluid around her lung and we have to induce labor now”. So labor was induced and as it was progressing our baby’s heart rate would decrease so the decision was made to do a c-section.

At 2:39AM August 7th our lives changed forever. We heard the first cries of our baby girl. We only got to look at her for a few brief seconds before the NICU doctor and nurses started prepping her to be transferred to the NICU, where she would spend the first twelve days of her life, and as they were doing that the doctor turns to me and says “she shows characteristics of Down Syndrome“. I looked at my wife in shock thinking what did he just say? So I asked him what he said and I heard the words again…Down Syndrome.

The fluid around her lung seemed like nothing now; that could be fixed. Down Syndrome is for the rest of her life. I went to the NICU with her while my wife finished up in surgery and was transported back to the room. As I looked at her through the plastic case she was in I thought to myself, “I don’t care if you have Down Syndrome, you’re my daughter and I am going to take care of you”. My wife took it a little harder than I did. She kept saying ‘I’m sorry” and I would just say there is nothing to be sorry for and she would ask, what are we going to do? I replied simply, we are going to raise our daughter.

A few days later the geneticist came to the hospital room to confirm the diagnosis or not, but we already knew the answer. It could not have gone any worse than it did. Her bedside manner was absent. She gave the confirmation and my wife began to cry and then she asks, “Why are you crying?”

Seriously?

You just confirmed a diagnosis in our daughter that cannot be fixed that will make her life more challenging than others and you ask why are you crying? It gets worse, she then proceeds to tell us that other kids love kids with Down Syndrome when they get to school; they’re like the mascot or the pet. I almost kicked out of the room after that statement. She just dehumanized my three day old daughter.

My initial fears were how would other people treat her. Mainly would she be picked on or bullied?

I also feared the unknowns that come with Down Syndrome; which areas will she struggle in? Will she be high functioning? What happens to her if something happens to us?

In the beginning, I worried about telling people. Now I say it proudly. It is a part of my life. I think having a child with Down Syndrome has made the relationship with my wife stronger. We need to lean on each other a little more because of all the ups and downs.

I now say it proudly. Down Syndrome is a part of my life. I think having a child with Down Syndrome has made the relationship with my wife stronger. We need to lean on each other a little more because of all the ups and downs.

My friends and family have been great from the start. They tell me she could not have been born to two better people. I am a registered nurse so I have knowledge of health issues and my wife is a social worker so she knew how to get Felicity into all of her therapies.

We got lucky in the fact that Felicity did not have any major health issues when she was born. She does not have any of the heart issues that can be associated with Down Syndrome. She has had to get tubes placed in her ears and tear duct surgery to correct a clogged tear duct, but that is the extent of it.

After the initial shock of getting the diagnosis, I was sad and angry and had a lot of why me? why us? questions.

At some point during that first week at the hospital I finally broke down in the shower and cried. I was not crying for me though. I was crying for her. I was sad and mad that she would have to have struggles and there was nothing I could do to change that. It probably took me a good six months before I fully embraced it and just saw her as my daughter, and not my daughter with Down Syndrome.