‘A tear of pride rolled down his cheek. ‘My son.’ Even if my husband was on the other side of the world, we were together.’: Military wife shares son’s journey with Down syndrome, ‘Focus on the good’

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“We were still waiting, uncertain and scared. It was all just too much. I begged God, ‘Please let my baby boy be okay. I just want him to live a good life. I just want him to be healthy and happy.’ While I put away dishes, the song ‘Even If’ by Mercy Me came on the radio. And as I listened, I started weeping. God was talking straight to me. The song goes like this, ‘But God, when You choose to leave mountains unmovable, oh give me the strength to be able to sing It is well with my soul. I know You’re able and I know You can save through the fire with Your mighty hand, but even if You don’t, my hope is You alone.’

At that moment I had an important choice to make. I could choose to live with joy regardless of the test results or I could be a victim to my circumstances, allowing my happiness to reside in things out of my control. My prayers changed that day. I prayed with certainty this journey would be beautiful and purposeful, no matter what.

2 weeks later, on my 26th birthday, my parents came to San Diego and we went to the zoo for the day. If you’ve never been, imagine being 22 weeks pregnant walking 100 acres of huge hills. I walked slow and steady, a little short of breath and sweaty from the July heat, but happy to spend the day with people I love. After a fun long day, we decided to go out for ice cream, but as we left the zoo, I got the call with my amniocentesis results.

Courtesy of Megan Saporito

My husband and I sat silently in the front seat of my car in the zoo parking lot when the doctor said, ‘The karyotype shows your baby has Trisomy 21, also known as Down syndrome.’  And for a moment, my heart stung. I had faith God would use this for good, but it hurt to think of the dreams we had for his life that could change because of a diagnosis. She was kind and offered for us to meet with a genetic counselor. She continued to explain, ‘You’ll come in for more ultrasounds to keep a close eye on baby and make sure he’s developing properly.’

As my pregnancy continued, I saw little by little life may move at a slower pace for us, but it could be a tremendous blessing for our family. Parents always talk about how fast babyhood goes, but maybe we could hang on to that precious time a little longer. We decided to name him Matthew, made a registry, created his nursery, and researched Down syndrome to learn more about the journey ahead. Despite my faith and positive attitude, the resources for an expecting special needs parent were bleak. I refused for my life to be reduced to statistics and sad memoirs. The books I was given weren’t helpful at all. ‘Is this it? This is what I have to look forward to? A mile-long list of medical complications, developmental delays, therapies, and doctor appointments?’ Everyone had good intentions; they wanted me to be ‘prepared.’ But the preparation they referred to was really just lowering expectations for his life.

Courtesy of Megan Saporito

I told my husband, ‘I don’t understand how handing expectant special needs parents a list of potential problems without any solutions or steps to take is beneficial. Fear isn’t the same as preparing.’

Thankfully family and friends sent us resources that told a different story. We watched the show, ‘Born This Way,’ read an article about Texas A&M University (our alma mater) starting a program for students with special needs, and saw a Youtube video of Chris Nikic training for the Iron Man. These amazing young adults with Down syndrome are doing big things that anyone would be proud of. Of course, they faced challenges along the way, but they worked hard and overcame. Their lives weren’t perfect, but they were joyful and meaningful. And isn’t that true for all human beings? I was so thankful Matthew would grow up with role models like this.

So I set out to create a new definition for a happy, successful life. The world gives us this formula: do more, have more, and be more. But what if being successful is really as simple as choosing to focus on the bigger picture? There’s no timeline to success because no one can control time. True success is found in the journey of becoming the best version of yourself, it’s making progress towards a life you love and living on your own terms. And happiness is a daily choice to appreciate how far you’ve come and love the life you have right now.

Courtesy of Megan Saporito

Our adventure continued. My husband drove me across the country so I could stay with my parents while he deployed to the Middle East for 6 months. On October 17, my mom drove me to the hospital early in the morning as I prepared to enter motherhood with new dreams for Matthew. Dreams that were so much deeper than my previous imagination for his life. 10 hours later, the doctor said it was time to push, so I FaceTimed my husband and they set up for delivery.

Courtesy of Megan Saporito

The instant they laid Matthew on my chest, my heart grew more than I knew was possible. I looked over at my husband and saw a tear of pride roll down his cheek as he said, ‘My son.’ I was full. Full of love, joy, and gratitude. Even if my husband was on the other side of the world, we were together. Even if Matthew has Down syndrome, our love for him is unconditional. We were proud new parents of a precious baby boy.

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Matthew got to spend the first night with me, but just before leaving the hospital he was transferred to the NICU for pulmonary hypertension. Wheeling his bassinet across the hall was gut-wrenching. It took everything in me to not sob uncontrollably walking back to my recovery room alone. My parents sat there comforting me as I cried, ‘They said his heart was fine! Why are they keeping him here now when we were just about to leave? I just want to take my baby home.’

Courtesy of Megan Saporito

I moved into a sleep room next to the NICU so I could stay at the hospital when my parents went home. I worried and cried, but tried to sleep when I was in my lonely room. I spent most minutes I wasn’t sleeping next to his bassinet waiting for the NICU team to do rounds, so I could hear how he was progressing. I FaceTimed my husband and tried to explain the medical terminology. But in between those raw moments was so much laughter and love. Matthew’s NICU nurses became my friends. They nicknamed him ‘sweet cheeks’ and loved his chill personality. I had a new routine, walking from my room to his bedside every 3 hours to feed him and hold him close. I sang him songs that gave me hope and cried tears of thankfulness for this sweet soul I was privileged to love. And after 12 days, on his original due date, Matthew was ready to take on this big world, so we went home.

Courtesy of Megan Saporito

I made a thousand phone calls to get him started with early intervention services. And I learned the most valuable skill a mom can have is knowing which questions to ask, and asking as often as possible. Like every mother, I was handed timelines for development and he was ranked on his achievement. I set up therapy to work on gross motor skills and worked to uncover his strengths and weaknesses every day. We counted down the days until my husband’s homecoming and FaceTimed him almost every day to tell him all the things Matthew was learning in therapy.

More and more, I saw Down Syndrome doesn’t define Matthew. It’s one of many things that makes him unique along with his personality, talents, likes, and dislikes. I learned to trust my intuition more than the information I read, and I worried less about the charts. When you don’t measure up to the world’s standards for success, you realize the really important things can’t be measured. I started to let the timeline guide his progress without measuring his worth.

Courtesy of Megan Saporito

I think deep down we all know we don’t have to earn inner worth, but when we constantly see these timelines and measurements, it’s easy to forget our value isn’t dependent on the things we accomplish. The funny thing is when you stop spending your days worrying, measuring, and comparing, you have time to focus on the good stuff. All of those little moments of ‘failure’ on the developmental timeline were redirecting us to the real purpose of life: love.

After 197 days apart, David came home and met his little boy for the first time at 5 months old! There are no words for all of the emotions of a military homecoming in addition to seeing a father hold his son for the first time. Because of Covid, he had to quarantine at home for 2 weeks, the perfect way to fully embrace fatherhood and acclimate to a whole new life.

Courtesy of Megan Saporito
Courtesy of Megan Saporito

After a month of all finally being right in the world, I was on a walk with Matthew and caught him making this shrugging movement with his shoulders every 10 seconds. I’d seen videos of something called infantile spasms (a rare seizure disorder in babies) in our Down syndrome group, so I pulled out my camera to record it. His 6-month appointment was already scheduled for the following day, so I showed the doctor my video and she agreed it was urgent to see a neurologist. She called in a special favor, we skipped lunch, drove straight to the EEG lab, and Matthew was diagnosed with infantile spasms 8 hours later.

Courtesy of Megan Saporito

We started medication immediately and went for Covid tests and EEGs every few weeks. I was always on edge, looking for strange movements, counting every time he flinched, and recording any time he did something unusual. One night the spasms were happening so often, he didn’t sleep at all for 12 hours. I laid beside my sweet boy on the floor, calling the after-hours neurology line over and over. When they finally answered, they confirmed the ER couldn’t do anything to help. I knew I made the right choice to monitor him instead of taking him in, but I felt helpless and terrified even doctors couldn’t help my baby.

Courtesy of Megan Saporito

We increased his meds and added on steroids; Matthew had horrible side effects and regressed in every skill he had worked so hard to learn. But when I was weak with fear and uncertainty, I felt the love and strength of our support system more than ever. I learned it’s okay to not be okay and sometimes strength looks like letting yourself cry in the bathroom and asking for prayers. After 2 months of trial and error with medications, Matthew got his smile back. And at 9 months old, the swelling finally reduced and his personality came back. I’m convinced there is nothing as magical as watching your child become their own unique little person.

Courtesy of Megan Saporito

Today, Matthew still has irregular EEG’s and takes medication. We still don’t have the answers we desperately want. But I will choose joy today because there is so much good to be thankful for, even in the midst of uncertainty and unanswered prayers. We are grateful for our wonderful support system and a team of doctors that fiercely cares for Matthew, and our gratitude keeps us strong while we wait for healing. Matthew has been a fighter from the start. He has already overcome so many obstacles and I know he will do big things in this world.

Matthew has taught me that true success is measured by our ability to rise above the challenges we face. When circumstances overwhelm us, we often underestimate the power we have to change our life, to actually love life not in spite of our challenges but because of them. His diagnosis doesn’t hold us back from living a full life, it propels us into a life of purpose.

Courtesy of Megan Saporito

The world tells us to be more, do more, and have more in order to be happy and successful, but there is more than one way to live a joyful, meaningful life. My mission as a special needs mom is to teach people a deeper definition of value, worth, and success than they’ve ever personally experienced. All human beings are worthy of love regardless of what they accomplish.

Although Matthew carries the ‘special needs’ label, his needs aren’t so different from yours or mine. He needs love, acceptance, and belonging. He will face challenges, and work hard to overcome his weaknesses. He will learn and grow and face fears along the way. And he will have big dreams, talents, and passion just like anyone else. He will need the courage to be himself and grace for when he makes mistakes. Although we work hard to meet Matthew’s physical needs, his greatest needs are not so different. These needs are universal and unite us as humans.

Courtesy of Megan Saporito

We have the power to stop measuring a human being’s worth with a timeline. We have the power to see that we are all more alike than different. We can accept fear, stress, and overwhelm as normal, or we can choose to embrace our unique journey and create a joyful life regardless of the circumstances we face. This isn’t just about Down syndrome or the special needs community. This is a message our world desperately needs: All humans are unique and valuable as they are.

My daily prayer for my sweet boy and for our world is people would live by three words: love one another. I pray we don’t love in spite of what makes us different, but because our differences make us beautiful and we’re united in our humanity.”

Courtesy of Megan Saporito

This story was submitted to Love What Matters by Megan Saporito from San Diego, CA. You can follow their journey on Instagram and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful perspectives from special needs moms:

‘Are you going to keep her?’ We never thought it would happen to us. I prayed for her to be ‘normal.’: Mom details Down syndrome acceptance journey, ‘She’s changed our lives’

‘There’s a 92% chance.’ I had NO IDEA if we could handle it. But when we saw his almond-shaped eyes, our hearts were stolen.’: Mom births son with Down syndrome, ‘We are truly blessed’

‘Do you have any concerns?’ The mood shifted. I half-expected her to say, ‘I’m concerned he’s too good looking!’ The punchline never came.’: Mom gives birth to baby with Down syndrome

‘Linda, I have news—please sit down.’ The delivery room was hush-hush. ‘She will be a burden to your family.’ Everyone was disgusted I wouldn’t abort her.’: Mom details emotional journey advocating for daughter with Down syndrome

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